To make deposits to Keeghan's Cell by Cell Fund, please mail payments to:

Estate of Keeghan Barry - Acct #103879781
c/o USAA Federal Savings Bank
10750 McDermott Freeway
San Antonio, TX  78288-9876


28 December 2008

I wanted to share this picture of Keeghan with everyone.  It was taken the week he was at camp - less than two weeks before he died.  I love his face - I can see my sweet 12-year-old boy, but also the wise old man in his eyes.  I miss him so much.  Having this picture in a frame here on my desk, where I spend so much time, brings me a bit of comfort.  Sometimes it brings tears as well, but that's ok.  Those are a daily occurrence anyway.

The past few weeks have been a struggle.  We went through the motions of Christmas, but that was really all it was - going through the motions.  I had the tree taken down and packed away by noon on the 26th.  Nothing felt right.  On Christmas morning, before Maxx opened presents, she came to my desk and grabbed this picture of Keeghan.  She said, "I need this."  She took it to the living room and set it on the floor beside her as she opened presents.  She insisted that it be where Keeghan could see each of us as we opened gifts.  That one act was so poignant . . . and seriously tore at my heart.  We have already decided that next year we will be celebrating the holidays differently than we have in the past.  Not because we want to forget Keeghan - he will always be a huge part of every celebration in our lives - but because trying to do things in exactly the same way we always did with him is too hard.
Nothing feels the same.

I have received many emails from people in the past few weeks, and I hope that everyone can forgive me for not replying.  It isn't that I am ignoring you.  I just can't deal with it all right now - answering emails, talking on the phone, accepting words of comfort - it's too much.  I thank you for your kind words, all of you.  But please understand that I am treading water here.  I keep myself busy every day just to keep the breakdowns at bay.  That doesn't mean I don't ever breakdown - I do.

Every.  Single.  Day.

But if I allow myself even a moment to think about the fact that he is really gone, that he died and I'm still breathing - something I never thought I could continue doing without him - I buckle.  It's the most horrible feeling.  I can only deal with it privately.  Talking to people on the phone, or replying to emails, takes away that privacy, and I just . . . can't do it right now.  I'm not in a place yet where I want to get together with old friends I haven't seen in years, or talk on the phone with friends I haven't talked to in ages.  I'm not going to say that I hope you understand, because you can't possibly understand.  Just know that this is how it is right now.

The second picture here was taken of Maxx by one of her good friends on December 23rd while we were on a field trip to Mt. Vernon.  Hannah did a fabulous job with this picture, and "embrace the curls" is something I've been telling Maxx about her hair for years!  It really is a great picture!

Maxx is doing well.  She's on Christmas break right now, but we will be doing some light school work this coming week just to catch up on some of the lesser subjects that we're a little behind in.  Other than that, I think she is doing the same as Mike and I - counting down the days until all this holiday stuff is over.  I can't even imagine how hard Christmas was on her.  Keeghan was her best friend.

All of this is more than she or Keeghan should ever, in a just world, have had to bear.

S.

9 December 2008 - 100 days since Keeghan left.
For anyone interested in helping raise money for the Pediatric Brain Tumor Foundation (and who doesn't mind a little extra spam in your mailbox), check this out - 2008 Happy Honda Days Instant Win.
4 December 2008
This is (hopefully) going to be a quick, and somewhat final, update.  After this, I am no longer going to be updating here unless it is with some big announcement (which I'm not expecting many of in the near future).  So I'll try to update on everything necessary now.

First off, we are moving to California in June.  The Air Force is giving Mike a humanitarian PCS to be near my family.  Finally, I get to live where I want to live.  OF course, it takes my son dying to make it happen.  So while there is definitely excitement to be going home, it is tinged with such profound sadness.

That is the story of everything anymore.  Even the happiest of moments is tinged with incredible sadness because one is missing.

It doesn't help that it is the Christmas season and people are sending me their cards with pictures of their wonderful . . . WHOLE . . . families.  Maybe I'm overthinking this, but does anyone really believe I want to see that right now?  It's one thing when it is family.  I love seeing those pictures.  But people who are not family, sending me pictures of children I don't even know?  I would not wish what happened to Keeghan on anyone . . . but sending me pictures of your children, smiling and healthy and whole . . . well, let's just say it doesn't help me, ok?

Again, sorry if I've offended anyone . . . but this is my place to say what I think, and I tire of worrying about what anyone else thinks.

Maxx and I have been seeing bereavement therapists (we each have our own).  The benefit of that is finding out that I'm doing ok, meaning that the things I'm feeling are not abnormal for a mother who has lost her child.  I pretty much figured that already.  But I've also learned that the way I am dealing with some relationships, i.e., building some new ones, ending old ones that were unhealthy, is ok.  It is truly amazing what the death of such a cherished child can do to a family.

For the record, Mike and I are good.  We could easily let Keeghan's death destroy us because it is such an immense pain to share.  Overwhelming sometimes.  But we are good.  I refuse to let us lose each other.

I've also found that there is comfort to be found in reading.  Three books in particular have become a constant in my daily routine:

A Broken Heart Still Beats: After Your Child Dies

When Bad Things Happen to Good People

and

Life After Death: The Burden of Proof

I realize that the last one might bother some of you and all I can say is please keep your opinions to yourself.  This is my journey.

That is another reason this website is ending.  There is too much stress involved with wanting to write, but having to worry about what others will think.  Or worse, wanting to write but not wanting everyone to be able to see what I'm writing.  There is no way to only share my thoughts with those that I want to share them with, and block out others who I'd rather not have know my feelings.  I appreciate all of you - your prayers, your kindness - I really do.  But sometimes it is more of a burden than a help.  If I have to answer the question, "What can we do for you?" one more time, I just might start screaming.  What you can do is stop asking that question, because there is no way for me to answer it.  The best thing that has ever been said to me is, "I'm here for you if you need me."  That is comforting, providing that you actually mean it when you say it and it isn't just another "I'm so sorry for your loss . . . . ", while what you're really thinking is "I'm so glad it didn't happen to me." (yes, I can tell the difference)

The last reason for stopping this site is that I have started trying to write a book about Keeghan, and it is too difficult trying to do both.  I don't know if the book will ever be completed, so don't go looking for it anytime soon.  But I think I can do it.  We'll see.

So there you have it.  This journey hasn't ended, and what is here on the site will remain here.  But my updates are over, as they are no longer helpful to me in any way.  Keeghan's story is important, and I want it to stay here for people to read, but the site is taking very few hits lately, and that hurts so much.  It's like he's already fading from everyone's minds.  Never from mine though, or from Mike's or Maxx's.

Thank you to everyone, for everything.  My best to all of you.

Shannon

25 November 2008
Funny of the Day

Here is one of the amazing - and pretty darn funny - ways that people are working to raise money for Keeghan's Cell by Cell Fund.  This is an auction on eBay that our neighbors started - the McDonald's French Fry in the shape and color of a Childhood Cancer Awareness Ribbon.

20 November 2008
I dreamt of Keeghan last night.  Most of the time dreams of him are good.  Not last night.  Over and over, it was always the same.  I watched him sick.  I watched him die.  Finally, the dream that pushed me out of bed was one where I knew he was already gone.  But then Mike and I walked into a room and Keeghan was there.  But he had already lost his ability to walk.  In the dream I said to Mike, "He's not doing well, is he?"

Mike's reply was a teary-eyed "No."

I remember thinking in the dream, "I can't watch him die again.  This isn't fair."

Then I woke up.  So yeah, the day got off to a crying start, which usually means I'll be crying all day.  So I decided to do some things that I've been putting off, mainly because they'd make me cry!  If I'm going to be bawling all day anyway, I might as well get something accomplished, right?

So the first thing I did was finish Keeghan's Bravery Hearts bead strand.  Boy, you talk about putting everything into perspective!  Take a look at the following, and ask yourself this - are YOU brave enough to go through all that?  (the numbers are how many of that particular bead he has)

Biopsy - 1
Birthday - 2
Central Line/Port Insertion - 3
Clinic Visit - 93
Completion of Treatment - 2 (for finishing radiation and his first round of chemo)
Dressing Changes - 15
Emergency Room/Ambulance/Unusual Occurrence - 13
Endocrinology Visits - 3
Hair Loss/Thinning - 2
ICU Admissions - 5
Infusion Visits - 47
Inpatient Admission - 7
Intramuscular Injection - 9
Isolation - 20
IV Start - 19
Last Chemo - 1
Lumbar Puncture - 1 (this was actually an "honorary" bead for getting CS fluid drawn from his ventriculostomy at MD Anderson)
Morphine - 7
Neurosurgery Clinic Visits - 5
Occupational Therapy - 15
Other Specialty Visits - 1 (for Radiation Oncology consult)
Physical Therapy - 43
Port Access - 87
Radiation - 33
Relapse - 1
Surgery - 6
Tests & Scans - 47
TPN - 2
Transfusion - 11
Tube Insertion - 7
Vomit - 47
Hospice Visits - 3
Bravery "B" Beads - 52 (personally, I think he deserved 1039743129375457273104570975 of this one )

All in all, it is 610 beads.  That's a lot of beads.  I have one last bead to add though.  I am going to buy a bead that is angel wings.  That will represent his one last act of bravery - facing death without ever giving up.

The other thing that I am going to list out here will likely be boring to many of you, but you can skip over it.  This is all more for me, Mike and Maxx anyway.

One of Keeghan's greatest loves was music.  From the time he was old enough to sing along with the radio in the car, he had his own personal music tastes.  The first song he ever sang along with was "I Want It That Way" by the Backstreet Boys.  He was four.  He couldn't carry a tune to save his little soul, but I've always said he made up for that with enthusiasm and volume!

At his Celebration of Life on September 5th, we had an iPod with a playlist of Keeghan's music playing.  It was a pretty eclectic mix, to say the least, because it was made up of songs that Keeghan had liked from the time he was a toddler to when he died.  I had a few people (mostly young people - go figure!) ask me for the playlist that night.  It's too many songs to burn onto one disk, so instead I'm just going to type the list out here, with maybe a note or two about the songs that were really special.

It Will Be Me (Original Version) - Melissa Etheridge
    This was the song that Maxx sang at the Celebration.

Seasons In The Sun - Westlife
    Westlife is an Irish Boy Band that the kids and I have been listening to for nearly
    a decade now.  I always thought it was kind of funny that Keeghan loved this
    song, a song that I knew from my own childhood.

I Believe In You (Je Crois En Toi) ft. Celine Dion - Il Divo
    An opera song!

Thunder - Boys Like Girls

Happy Ending - MIKA

You Raise Me Up - Westlife
    Oy vey - this one made me cry even before Keeghan died.  Now?  Holy cow!

If Everyone Cared - Nickelback
    He always liked the chorus to this song:

    If everyone cared and nobody cried
    If everyone loved and nobody lied
    If everyone shared and swallowed their pride
    Then we'd see the day when nobody died

Untitled - Simple Plan
    Oddly enough, this is a song about someone dying.  Yet another song that was a
    favorite of Keeghan's, but that I couldn't listen to after his diagnosis without
    crying.

Christmas Eve (Sarajevo 12/24) - Trans-Siberian Orchestra
    This one is called "The Stomp Song" in our house.  Keeghan was about
    3-years-old when we first heard it.  You have to listen to it to understand, but
    whenever it played, he would stomp around the house to the beat of the music.
    We saw Trans-Siberian Orchestra in concert twice - their music is pretty much
    the soundtrack to Christmas in our house.

Inside Out - Eve 6

Hallelujah - Rufus Wainwright

I'll Make A Man Out Of You - Donny Osmond
    Another funny story - once when we lived in Minot, ND, I could hear Keeghan
    upstairs in his room singing something.  It was one line, over and over - "Let's
    get down to business."  That is the first line to this song.  He was singing it with
    the same force that it is sung in the actual song.  He was probably about
    4-years-old, and he was supposed to be cleaning up his room.  All he could
    remember was the first line to the song, and apparently it just fit the duties at
    hand for him at the moment!

When the Stars Go Blue - Blake Lewis
    I've said before that we are big American Idol fans - well, this was Keeghan's
    favorite artist from Season 6.

The Storm - Garth Brooks
    This was the last song Keeghan ever sang.  You can look back to my post from
    August 25th to read about it.  Forever a favorite of his, and now of mine.

I Want It That Way - Backstreet Boys
    The first song he ever sang.

Bless the Broken Road - Rascal Flatts

Long Long Way to Go - Def Leppard
    Keeghan was a big Def Leppard fan, so they show up on this list a few times.
    This is a song that most people don't know though.  We found it long before
    cancer came into our lives, but the first verse of the song seems so much more
    poignant now:

    You held my hand and then you slipped away
    And I may never see your face again
    So tell me how to fill the emptiness inside
    Without love, what is life?

    But it's the chorus that tears me up now:

    I know I got a long, long way to go
    Before I can say goodbye to you
    Oh, I got a long, long way to go
    Before I can say goodbye to all I ever knew
    To you, to you

Take This Heart - The Osmonds

Shut Up - Simple Plan
    I'll never forget this one - on the day of Keeghan's last chemo in June 2007, he
    played this song full blast in the car on the way home, singing the chorus as loud
    as he could:

    So shut up, shut up, shut up   
    Don't wanna hear it
    Get out, get out, get out
    Get out of my way
    Step up, step up, step up
    You'll never stop me
    Nothing you say today
    Is gonna bring me down

Breathe Easy - Blue

Letter To God - Duncan James

Travelin' Thru (American Idol Studio Version) - Jason Castro
    Again, another American Idol favorite of Keeghan's from this year.  He especially
    loved this song.  It is originally a Dolly Parton song and, not being a particular
    Dolly Parton fan, I'd never heard it.  But I love it by Jason.   There is one
    particular part of the lyrics that, when I hear it now, makes me think of Keeghan
    in the back seat of the car, singing his loudest (and most out of tune).  I didn't
    care though - it was a beautiful sound:

    God made me for a reason and nothing is in vain
    Redemption comes in many shapes with many kinds of pain
    Oh sweet Jesus if you're listening, keep me ever close to you
    As I'm stumblin', tumblin', wonderin', as I'm travelin' thru

Hit You With The Real Thing - Westlife

When Did Your Heart Go Missing? - Rooney

I Melt With You - Bowling For Soup

Year 3000 - Jonas Brothers

Just Want You To Know - Backstreet Boys

Life Is a Highway - Rascal Flatts

Satellite - Hooters

What Hurts The Most - Rascal Flatts

The Rescue - American Hi-Fi

Which to Bury, Us or the Hatchet? - Relient K

Bad Day - Daniel Powter
    I remember laughing through tears as I was putting together this playlist,
    because I knew how much Keeghan loved this song, but I thought it might sound
    a little morbid being played at his Celebration.  But then I thought, "You know
    what - to hell with it - Keeghan LOVED this song and he would want it to be
    played.  If people think it is in bad taste, oh well!"  I never heard anyone say
    anything about it, so I guess if they didn't like it, they kept their opinions to
    themselves!

Eleanor Rigby (American Idol Studio Version) - David Cook

Poster Girl - Backstreet Boys

Blue (Da Ba Dee) - Eiffel 65
    Oh, I used to hate this song!  When Keeghan was 5-years-old, this was his
    favorite song.  EVER!  I got so sick of it!

Right Where You Want Me - Jesse McCartney

Any Other World - MIKA

Wherever You Will Go - The Calling

Desperation Song - Carbon Leaf

Rock of Ages - Def Leppard

Bring Me to Life - Evanescence

Something That I Already Know - Backstreet Boys

Rebels of the Sacred Heart - Flogging Molly
    Again, I almost didn't include this song, because of the first two lines of the
    lyrics:

    Now I`m aimin' for heaven
    But probably wind up down in hell

    And again, Keeghan's love for the song won out.  It's just a good, rousing Irish jig
    of a song.  Everyone should have this song!

Over My Head (Cable Car) - The Fray

We Belong Together - Gavin DeGraw

Cobrastyle - Teddybears
    This was on the list only because the kids LOVE watching Mike dance to it.  He'll
    swear that he doesn't dance, that he has no idea what I'm talking about, but the
    kids know - Daddy has his own "personal jig" when it comes to this song, along
    with one other on the list that comes later on.

Savin' Me - Nickelback
    Again, it was the lyrics on this one that Keeghan loved (although he loved the
    tune as well):

    Show me what it's like
    To be the last one standing
    And teach me wrong from right
    And I'll show you what I can be
    Say it for me
    Say it to me
    And I'll leave this life behind me
    Say it if it's worth saving me

Bohemian Rhapsody - Queen
    The song that was playing in the delivery room when Keeghan came into the
    world!

Time Of Dying - Three Days Grace
    Weird title, I know, but he was a big fan of this band.

Karla With a K - Hooters

Girl On TV - LFO

From The Inside - Def Leppard

Cat's in the Cradle - Ugly Kid Joe
    The song that Keeghan and Mike sang for the talent show at camp!

3 Is The Magic Number - Blind Melon
    Yes, believe it or not, a remake of a Schoolhouse Rocks song was one of
    Keeghan's favorites!

It Is You (I Have Loved) - Dana Glover

Mr. Jaws - Dickie Goodman
    This one is absolutely ridiculous, and my brother will probably be the only one
    that gets a laugh out of it, but it is a song from my childhood - 1975 to be
    exact.  It is a combination of popular tunes from that year.  You just have to
    listen to it to understand why Keeghan thought it was so funny!

All Star - Smash Mouth

Here Son - Ryan Star
    Long story, but this song will forever be known as "That Song" by "That Guy" in
    our house.  If you know Mike, ask him to tell you why.

The Show Must Go On - Queen

Her Eyes - Pat Monahan

Rock On - David Essex

Carol of the Bells - The Calling
    The BEST remake of this Christmas song ever.  Seriously.  I realize it was
    probably weird to play Christmas songs at a Celebration in September, but so    
    what?

Let It Be - The Beatles

I Want You To Want Me - Cheap Trick

California Dreamin' - Mamas & the Papas

Apache - The Sugarhill Gang
    This is the OTHER song that Daddy dances . . . very interestingly . . . to!

Beat It - Fall Out Boy

One Love - Blue

The Prophet's Song - Queen

The Freshmen - The Verve Pipe

Chasing Cars - Snow Patrol

In The Air Tonight - Phil Collins

The songs that have no comments from me were songs that Keeghan loved, and that he played often, but they didn't all have a story to go along with them.  But I guess they kind of do have a special story now - they're all songs that remind me of my baby.

Ok, this post has taken me well over an hour to put together, so I better go get some things done.  Amazingly, I'm not crying now, and I've had this playlist going on the computer ever since I started typing.  This is the first time I've listened to it all at once since the Celebration . . . cathartic maybe?

S.

12 November 2008
No posts in a few days.  Sorry.  I guess I feel like I should only update when there is something worth sharing with everyone.  That doesn't happen often.  If I were to update every day, it would look pretty much like this:

        Cried today.  Usually happens in the shower - too much time to think.

        Miss Keeghan.  Every.  Minute.

        Heart hurts.  That's the only way I can explain this constant pain.

        Maxx doing well.  Trudging through school like a champ.

        Still breathing.  It's a good thing this one is automatic.

That pretty much sums up most of my days.  Maxx is always fabulous, but she has her own stuff going on these days, so I feel like I rarely get to just hang out with her one-on-one.  So a lot of time I spend missing both kids, just in different ways.

Every once in a while there is something fun to share with you all though.  A few days ago Maxx's friend, Tasha, sent me a text message telling me that she was watching a video of (American Idol) David Cook and in the video he was wearing Keeghan's dog tag.  Of course, I immediately had to see the video myself!  It really does look like Keeghan's dog tag.  Maxx gave David a dog tag and a bracelet the day we met all of the American Idols.  The reason we're pretty sure it is Keeghan's is because it has a gray silencer (a rubber guard that goes around the edges of the dog tag) wrapped around it.  The one Maxx gave him had a gray silencer as well.

I can't prove that it is Keeghan's, so instead I'm choosing to believe that it is.  Keeghan was a huge David Cook fan - it would just thrill him to think David was wearing something to support him.  If you are an American Idol fan, then you probably already know that David Cook has a brother with brain cancer.  Keeghan was a big fan even before he knew that, but when he found out I think he really felt like he had some type of connection with David.  Maybe that sounds weird to some of you, but hey - he was a 12-year-old boy, and music was one of his passions.  The fact that someone also going through some of what our family was going through was having such success really pumped Keeghan up.  It's going to be a very bittersweet day next Tuesday when David's new CD finally comes out and Keeghan isn't here to listen to it with me.

If you'd like to view the video, you can see it HERE.

I want to let everyone know that I appreciate all of the emails and letters I receive.  So many of you have written, and I apologize for not replying to every letter/email.  It's so hard.  While it feels good to know that Keeghan inspired so many, it's so hard to write back because while yes, I'm happy he had an affect on you, I'd really prefer he never had.  Does that make sense?  I'd prefer he never had cancer, and that I would never had had to create this website so that you could all be touched by him.  I wish he'd never had to have the courage that he had.  I wish that he'd just been a normal little boy.  So please know that I am so appreciative of your words - I just can't reply to every single letter.  It hurts too much.

Ok, I'm now off to go do my daily crying.

S.

5 November 2008
Well, this has to be the happiest post-Election Day I've had in, oh . . . at least 12 years!  But boy, I was sure missing Keeghan last night as I stayed up until midnight watching election results come in, concession speeches, acceptance speeches . . . it would have been a proud moment for my favorite Little Liberal!

Yes, that is something many people never really knew about Keeghan.  He was quite the little liberal, and he had definite opinions on many, many things, mainly because we discussed so many of the issues at different times in our house.  We wanted our kids to be aware of the world around them.  But, as with so many things, Mike and I have never dictated what our kids should believe.  We always wanted them to find themselves.  Considering the person Keeghan was, and the person Maxx is and is becoming, I stand by that.  Educate them, and give them the tools to educate themselves, and they will find what is right for them.

Of course, I am a California liberal in a world of conservative Republicans, so I might not be doing myself any favors by admitting my big secret here!  Oh well.  Obviously the majority of the country is on my side this beautiful Wednesday morning, so I feel good!

In other news . . .

I haven't written much recently.  Not much to say really.  The days continue to go on.  Maxx is busy with school.  I have been busy with some projects for our homeschool group.  I make jewelry every chance I get.  We've taken a couple of field trips in the past couple weeks - one to the National Portrait Gallery, and another to the National Cathedral (did you know that there is a Darth Vader gargoyle on the cathedral?).  Essentially, we've been keeping busy.

It doesn't always help though.  Occasionally, I still get blind-sided by memories of Keeghan that hit me like a cannonball.  Example:  I was looking for an empty folder to use for some of Maxx's school work yesterday.  I have this multi-drawer organizer that I keep a lot of miscellaneous stuff in.  So I'm grabbing drawers and opening them, looking for the one with empty folders, and I open one that is full of coin rolling papers.

Keeghan LOVED to roll change.  In fact, I have two big cans with over $150 in rolled pennies, dimes, nickels and quarters.  Mike and I got in the habit of always putting our change in a can for him; we never kept it, we just gave it to Keeghan at the end of every day.  He said it was his OCD (which he claimed to have inherited from me!) that made him love doing it so much.  I think it was relaxing for him also.  I know that, as he lost more and more of the use of his left hand, it became a sad point in his life, because he could no longer roll his change.

So anyway, I open this drawer and see all of those "penny rollers" as Keeghan called them . . . and I just started trembling.  Instantly the tears were there, and no matter how much I tried to busy myself with Maxx's school stuff, I couldn't make them go away.  Mike saw me, and knew something was up, so I just stopped and gave in.  Kind of like right now - the tears always win.

I miss him so much.

I read an article in Reader's Digest a few days ago written by Kathleen Kennedy Townsend.  In the article, she wrote about how much death her family has dealt with over the years.  Even before JFK and RFK were killed, the Kennedy family had already lost two other children.  At one point, a friend of Joe Sr. lost a son (ironically, after having had brain surgery), and he wrote this letter to his friend:

Dear Jack,
There are no words to dispel your feelings at this time, and there is no time that will ever dispel them. Nor is it any easier the second time than it was the first. And yet I cannot share your grief, because no one could share mine.
When one of your children goes out of your life, you think of what he might have done with a few more years and you wonder what you are going to do with the rest of yours.
You never really accept it; you just go through the motions.
Then one day, because there is a world to be lived in, you find yourself a part of it again, trying to accomplish something--something that he did not have time enough to do.
And, perhaps, that is the reason for it all. I hope so.
Sincerely,

Joe

As old as this letter is - nearly 50 years at least - it is still so apropos when it comes to how a parent who has lost a child feels.

There are no words that can relieve our pain.  Time will not do it either.

No one can share our grief, just as we can't share the grief of another parent who has lost a child.

I will forever wonder what Keeghan could have done if he had just been allowed to live longer.

I will never accept this.  Even our bereavement counselor, on our first appointment with her, told us this.   Of all the "Stages of Grief" we will go through, she said we will never reach the stage of acceptance.

Finally, it is one of my greatest hopes when it comes to Keeghan, that I can continue to fight his fight.  That I can bring brain cancer awareness to more people, and hopefully, some day, save children from Keeghan's fate.

S.

30 October 2008
Hey, let's add insult to injury . . .

It has been over two years since we were Texas.  Keeghan was last seen at M.D. Anderson Cancer Center in July 2006.  Ever since that time, we have received monthly bills from them in the amount of $170.  At first they said this was our responsibility to pay, and even threatened to send us to collections if we didn't pay it.  I made phone calls back in 2006 to the hospital and the insurance company and eventually figured out that TRICARE (our insurance) had paid that amount, but the code they had put on the payment did not match up with the code in the hospital's system.  Therefore, the two did not cancel each other out.

I tried explaining this to the person at the hospital (who I secretly believe was actually in India somewhere . . . ), but I don't know if she ever truly got it.  The bill got changed though, so each month when it came in, the Patient Responsibility section of the bill always said $ 0.00.  That was all I cared about.  They were on their own to fix their computer screw-ups.

It's two years later, and suddenly the bill has changed again.  Now, under Patient Responsibility, the bill says I owe M.D. Anderson $67.77.

Huh?  Have you somehow provided a service to my son in the past two months that I didn't know about?  Because if so, I'd like to know how!

So I called last month, when I received the first bill, and had to leave a message on voice mail.  The message said my call would be returned the next business day.  I'm pretty sure M.D. Anderson has been open in the past month, but I sure haven't received a phone call!  So I called again today (since we received yet another bill this week).

The woman I get on the phone today at least sounds like she's probably from Texas.  But when I explained what was going on and asked how I could possibly owe them $67.77, this is what she says:

"It could be for a patient deductible or copayment."

I explained that, with our military insurance, we only paid copayments for prescriptions while Keeghan was at M.D. Anderson.  Everything else was covered by insurance.

Madame Dim then responds with, "Well . . . to find out what it is billing for I'll have to pull the record and research it."  Then I hear nothing but silence.

Ummmm . . .  okaaaaaaaay.  How 'bout you do that Sunshine!  And this time, CALL ME BACK!

It was like she was waiting for me to say, "Oh don't go to all that trouble, I'll just pay the bill!"

ARGH!  I hate dealing with insurance companies and hospitals!

S.

29 October 2008
So . . . that last post was a little cryptic for me, eh?  You can always tell when I'm either really upset, or really ticked off, because I have a much harder time putting it all into words.  It's not so much a difficulty in writing what I'm thinking; it's more a problem with who I'm going to tear to shreds on a public website if I do put my thoughts into words.  That prevents me from saying what I'm really thinking.

I say sometimes that I just want to get off this base, and it's true.  This place is too small.  I understand that so many people want to help us, but the bottom line is that unless you have the ability to bring my son back, you can't help.  You can be a friendly shoulder to cry on, or you can create a distraction from reality for a while, but you can't help.  We know this and, as much as I hate it, we accept it as fact.  Everyone else needs to also.

I guess the real message is this - please stop trying to find help for us.  We're doing alright, all things considered, and we have the resources in place to find help when we need it.

The real problem with all of this is that while yes, I want to get off of this base, I don't want to get out of this house.  This is the very last place I will ever live where I have physical memories of Keeghan.  I can look in my living room and see him on the couch, remote in hand, dog at his feet.  I can see him in the kitchen fixing his morning cup of coffee . . . at the dining room table bouncing in his chair because he really likes whatever it is that Daddy made for dinner.  I have two years worth of goodnight kisses in his room.  I just can't give up this place yet.  It feels like just yesterday that I was throwing a football in the backyard with him, or having him come down the stairs and sit on my lap for a morning hug.  When I leave here, I leave all of that behind.

Then there is the issue of where to go.  There are those who think they know where we should go, or think that their suggestions should be considered.  I'm sorry, but no.  The only opinions or suggestions that matter to me are Mike's, Maxx's, and my own.  The rest just get on my nerves.  I want to be close enough to California that, if something happens with my family (or if I just want to go home for a few days), I can hop in the car and be there by tomorrow.  Preferably, I'd like to be in California, but that is up to the Air Force.  Maxx has definite preferences on where we go.  She'd like to be either in Colorado or California.  She absolute doesn't want to go to anyplace that is hot most of the year.  She and I both refuse to go back to San Antonio, and every other base in Texas is in the middle of nowhere.  Texas is absolutely out.  So we are looking at bases in California, Idaho, Washington, Wyoming and Colorado mostly.  We (repeat - WE) will decide where is best for us by next summer.  I'm not ready to leave this house yet, but by next summer I think it will be in everyone's best interest to move on.

In the meantime, we continue trudging along.

Trudge - verb, to trudge.  (Sorry everyone, that's a joke only Mike will get - love you baby!)

I think Maxx is finally getting used to the fact that I am going to cry every day.  Numerous times probably.  It happens.  Keeghan was my little man, the one who always seemed to gravitate toward me, like Maxx always gravitates toward Mike.  It doesn't mean I loved him more or anything like that.  It's just how we worked.  Sometimes I feel like I'm spinning in circles because there's something missing.  I will forever feel that way.  But I am so blessed to still have Maxx.  She's amazing, beautiful, smart, and perfect.  She keeps us all smiling, even through the pain.

So there you have it - a less-cryptic post than my last, and I didn't tear anyone to shreds.  It's gonna be a good day Tater.

S.

27 October 2008
Not much to say today.  The world is moving forward, and all I want to do is stop and get off most of the time.

This base is just too small.  I can't go anywhere without running into people that I know.

So many good intentions . . .

So many people who want to help . . .

So many who want to "fix" me . . .

And all that is being accomplished is that my business is now base-wide business.

Then there are those who think they know what is best for us.   You don't.  No one does but us.

I want to leave here, and yet I have obligated myself to some things, and I don't want to let people down.  But I want away from here.  The problem is that there are no job openings for Mike where we want to go.  So we're probably here until next summer anyway.

It's all so frustrating.  I'm trying to keep a smile on my face with all of these people, because I know they mean well.  But like I said - this is a ride that I just want to get off of.

In other news, jewelry sales have been phenomenal, which is wonderful because that seems to be the one activity I have right now that gives me some peace of mind.   I sold everything that I had listed, and so far have raised over $200 for Keeghan's Cell by Cell Fund (thanks to everyone who has bought something!).  I listed more items today (see link at the top of this page), but I'm having a problem getting good pictures.  I'm definitely NOT a photographer!  So I doubt I'll sell some of the things listed, just because the pictures aren't good.  But we'll see I guess.

That's about it for today.  As is the norm, my mood is . . . bleh . . .

S.

22 October 2008
Not much to update today.  I wanted to put up this picture from the Light the Night walk last Saturday.  Keeghan wanted to walk this year for his friend Slater.  Since he couldn't, we all went and walked for him.

Yeah, I know . . . I was bashing on the Leukemia & Lymphoma Society a few days ago.  Keeghan didn't know any of that bad stuff about them though.  He just wanted to carry a gold balloon in memory of his friend.

We did it for you Bubby.

Nothing else exciting going on around here.  Maxx is busy with school work.  So far, her favorite subjects seem to be Algebra and Latin.  I have been working on getting a website up for Keeghan's Cell by Cell Fund.  I have the domain purchased and the website started.  All it really has right now is a picture of Keeghan and a button where people can go to donate to the fund.  I need to work on the words . . . should be easy for me, right?

Not.

That page has to be professional, not emotional.  Not exactly my forte when it comes to writing.  So Mike is going to be more in charge of that page.  He's the real wordsmith in the family.

I'm also keeping busy with making jewelry.  Getting decent pictures is the hardest thing.  But I'm still selling some things, so it's all good.

That's it for now.  Hope everyone is well.

S.

20 October 2008
It's been 50 days today since Keeghan died . . .

I've spent a lot of my time lately up on my soapbox about childhood cancer facts.  That's probably because I've been spending a lot of time on a new site called People Against Childhood Cancer.  I invite anyone interested in learning more, or in helping us to raise awareness of childhood cancer, to join.

To give you an idea of why this is important to me, let me ask you a question.  Have you been anywhere shopping this month where you haven't seen pink ribbons?  You can't swing a dead cat without hitting some kind of display for breast cancer awareness, or a product/brand offering a percentage of its proceeds to breast cancer research.  But did you see gold ribbons everywhere like that last month?  September was Childhood Cancer Awareness Month - did you see yogurt with gold tops?  Or running shoes, purses, socks, etc. with gold ribbons on them?

I didn't - and I think I would have noticed considering how raw my pain still was then.

So yeah . . . my writing has had the purpose of raising some kind of awareness recently.  Some have even suggested I need to get up in from of Congress and do this same thing.

HA!

I definitely live in the right place to do that.  There's a problem though.  I cry.  A lot.  I can talk to people who knew Keeghan and keep it together pretty well.  But to talk to a crowd of suits who never knew him, and who have not been directly affected by childhood cancer, will have me in tears for sure.  To try to convince them that research funding needs to be increased, or that the years of potential life lost from these precious young people dying is a legitimate loss to this country, seems pretty impossible in my head, mainly because I see myself sitting there blubbering.

But I guess it could happen.  I'm not ruling out storming Capitol Hill.  I just have to figure out a way to not cry.

Riiiiiiiiiiiiiiiight!

Yesterday was a pretty bad crying day.  I think I spent most of the afternoon in tears, to the point that my eyes feel like big puffy pillows today!  I've spent so much time ranting about awareness lately, I haven't really written about how I'm doing.  I suck.  Sorry - that's blunt.  But true.  Every moment of my day has this big empty hole - that place where Keeghan should be.

Like right now.  I'm sitting here on the computer, drinking coffee, getting my day started.  He should be upstairs in his bed, with Buddy (the cat) on his feet.  In an hour, when Maxx is sitting at the table doing school work, he should be sitting there doing school work also.  I have all of his school books for this year sitting on the shelf.  Untouched.

It sucks.

We went to the mall on Saturday because Maxx and I needed new glasses.  When we got out of the car in the parking lot, Mike did his normal thing of walking ahead of us a few paces.  Maxx, in turn, did her normal thing and hurried to catch up with him and put her arm through his to walk into the mall.  Keeghan and I always walked together behind them, holding hands (because he never outgrew holding hands with his mama).  Only this time, I was alone walking behind them.  Maxx caught that fact pretty quickly though and held her hand back for me to come up and hold.  But for that moment when I was alone, with no little man walking beside me, God it hurt.

Everything comes with some amount of pain, because there is always that missing piece.  We all do our best to put on a happy face, so for the most part everyone thinks we're doing well.  Everyone wants us to be doing well.  I get that.  So I try not to be a downer every time I write and talk about how many minutes/hours of every day I spend crying.  Or how many I spend angry/sad/depressed/etc.  It's not what everyone wants for us, and I figure if I write too much about that stuff people will stop reading.  Since I seem to reach a decent number of people with this endless narrative of mine, I want to use that opportunity to spread the word of awareness, rather than scare everyone off with my pain.

For the record, there are plenty of happy moments in our lives right now also.  I don't want anyone thinking I'm always sad and crying.  That could never happen because we have Maxx, who is an endless fount of goofiness!  You can't help but smile when you're around her.  We laugh talking about Keeghan quite a bit too, because Maxx will say or do something totally "Maxx" and Mike or I will come back with, "Oh, you KNOW what Keeghan would be saying right now . . . " and then say something totally "Keeghan."  He's still here with us, because he was so much a part of all of us even before he died.  We are definitely a very interconnected Fantastic Four, and that hasn't changed.  It's just that the sad moments are so much more than just "sad."  That one small word doesn't come close to describing the intensity of the pain.  It can leave you gasping . . .

And that's after only 50 days without him.  It isn't getting easier as the days go by, because each day is one day more without him.  One more day of pain.

It sucks.

Shannon

17 October 2008
Per special request, here is a picture of the dog tags that we had made for people who wanted to show their support for Keeghan in his fight.

To see a bigger picture, click HERE.


This is what the bracelets that we ordered look like.  Again, for the bigger picture, click HERE.





This is the other side of the bracelet.

Bigger picture HERE.




17 October 2008
Keeghan, Maxx and their friend Tasha with the American Idol Top Ten, taken August 14, 2008 at the Meet & Greet we attended before the concert.

I received this picture via email last night.  I had actually forgotten
about it, so of course it took me by surprise and brought and onslaught of tears.  But I wanted to share it with anyone anyway.  If you look closely you can see that David Archuleta (far left), Jason Castro (third from left) and Kristy Lee Cook (kneeling to Keeghan's left) all have Keeghan's dog tag on, and David Archuleta even has his gray bracelet on.

Very cool, eh?

If you'd like to see it bigger, click HERE.

14 October 2008
So much to write about . . .

Let me start with the weekend.  We attended Special Love for Children with Cancer's Octoberfest Weekend, which was held at the same 4-H Center in Front Royal where Keeghan's camp was held.  All four of us went last year, with Mike and I being "elected" the Pumpkin King and Queen and having to walk in a parade through the town of Front Royal looking like complete freaks.  The kids LOVED it, of course.  

Anyway - Keeghan really wanted to attend the Octoberfest weekend again this year.  Let's face it - he loved that place!  He'd take any chance he got to go to Front Royal.  So we decided to go, even knowing it would be hard to be back there without him.  I know a lot of people thought we were crazy for going, but I look at it this way - why would I AVOID going to a place that my son loved so much?  He loved Myrtle Beach - should I never go there again also?  

Of course not.

In a way, being at the 4-H Center made me feel like I was surrounded by Keeghan.  It felt happy, if that makes any sense.  Not that I felt happy, because I missed him so terribly much.  But the place itself just feels happy.  How could a place that has brought so much happiness to so many kids with a lot to be unhappy about feel any other way?

On Friday night we went out to dinner with good friends, Arlow and Pat along with their son.  That was a great time.  We had a leisurely dinner and got caught up.  Arlow told stories of Keeghan at camp - which had most of us in tears!  That's ok though - I could listen to stories of Keeghan all night!  Not long after we arrived back at the 4-H Center two of the ladies that work for Special Love pulled Mike, Maxx and I aside.  I saw that Judy had what looked like a photo album under her arm and I said, "You're going to make me cry, aren't you?"  

She said no, but she was wrong.  We got to a covered area where there were some picnic tables, and she pulls out what turned out to be a scrapbook.  But not just any scrapbook.  This was the granddaddy of scrapbooks - she had scrapbooked Keeghan's entire week at camp for us!  It was amazing.  So many pictures of Keeghan and all the things he did at camp - Farm Day, Talent Show, his horse Eclipse!  It was all there.  There was even a painting of Keeghan and Eclipse on the last page, with a poem about them!  I'm not even looking at the book right now and yet I'm crying again just picturing all the beautiful pictures, and all the incredible work Judy put into each of those pages.  I wish I could put it all here to show you, but then again, I love that I have that treasure just for us.

Nothing else could top that!  The rest of the weekend was still fun though.  We walked in the Festival of Leaves parade on Saturday (thankfully NOT as the Pumpkin King and Queen).  Campfire is always a great time.  Seeing people we haven't seen in a while, sleeping in those oh-so-(un)comfortable camp bunk beds . . . camp is great!  Like I said, it's just a happy place.

We arrived home on Sunday from Front Royal, exhausted but glad to be home.  We all decided to take naps (did I mention that the camp bunk beds are uncomfortable?).  I only slept a little while though, so I got up and went to Keeghan's room.  I haven't mentioned it, but my new craft table arrived last week.  So I now have my "creative space" set up in Keeghan's room.  It's hard to explain, but I just love being in that room when I'm working on making jewelry.  It's peaceful.  The animals love being in there also.  I turn on some music, write a little to Keeghan in my journal, and then get busy creating.  It's awesome.  So I went in there and made a few more things while Mike and Maxx slept.  

Then Sunday night we got together with friends that we met while Keeghan was in treatment at Walter Reed.  It sucks to be in this cancer world, and yet some of the nicest people we've ever met have been because of cancer.  I won't tell you that I don't wish we'd never had to meet all those people, because that would be a lie.  But there are many that I am glad to know, but wish we'd met under different circumstances.

So, on that thought . . . there's been a lot on my mind recently (go figure) concerning what to do about all these kids with cancer.  While I absolutely love organizations like Special Love, I truly hope that someday there won't be enough kids with cancer to need camps like Camp Fantastic and BRASS Camp (the camp for sibling of kids with cancer that Maxx attended).  Add to all of this the fact that we heard yesterday of yet another child's death; another one that we knew from Walter Reed.  When is it going to end?  It seems like 2008 has been The Year of Children Dying for us, and I'm tired of it!  But the facts about pediatric cancer are not encouraging.  Neither are the facts about some of the bigger organizations raising money for cancer research.

If you'll bear with me and my rant a bit, I'd like to share some things I've recently learned with everyone:

    * Did you know?
      *Each school day, 46 children are diagnosed with cancer.

      *On the average 12,500 children and teens will be diagnosed with some form of cancer each year in this country.

      *One in 330 children will develop cancer by age 20.

      *Although the 5 year survival rate is steadily increasing, one quarter of children will die 5 years from the time of diagnosis.

      *Cancer remains the #1 disease killer of America's children - more than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.

      *In the U.S. almost 3,000 children do not survive cancer each year.

      *Over the past two decades, only ONE new cancer drug has been approved for pediatric use.

      *Currently there are between 30-40,000 children undergoing cancer treatment in the U.S.

      *As a nation, we spend over $14 BILLION per year on the space program, but only $35 MILLION on Childhood Cancer Research each year.

      *There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.  (THIS ONE MAKES ME SO ANGRY!)

      *Research funds are scarce as most money is diverted to well-publicized adult forms of cancer, such as breast and prostate.

      *Right now, this second, somewhere in America, there are 7 children fighting for their lives who won't live through the day.

Ok, so there are the "facts" on pediatric cancer.  Now read some facts about the organizations that we think are helping to fight it:

Of all the money collected each year by the American Cancer Society, only 2.96% of that is directed toward childhood cancers.  ALL childhood cancers.  Not 2.96% toward leukemia, and 2.96% toward brain tumors . . . that measly amount is split among ALL childhood cancers.  

Here is an example to put it into perspective (special thanks to Bob at PAC2 for putting this information together):  if you donate $2,000 to the American Cancer Society, $200 (10%) goes to admin fees; fundraising expenses take another 22%, or $440.  Of the remaining $1,360, 2.96%, or $40 of the original $2,000 you donated will be directed toward childhood cancer.

Only $40.

Of course, the American Cancer Society's CEO still makes $619,551 per year.  Heaven forbid he make less though; he deserves that much for all of the lives he's saving, right?  Tell that to the seven children mentioned above that will die today.

The Leukemia and Lymphoma Society has similar information.  Only 26.7% of the money they raise (which was a total of $230 MILLION last year) goes toward research.  Smart ones they are though, because they don't advertise how much of that research money goes toward childhood cancer.  But their CEO's salary is public information.  

$494,867.  

Wow.  That's really all I can say right now because I try not to curse on this website.

I hope that people will keep some of this in mind as they choose who they'll make charitable donations to this year - especially our fellow military friends choosing their Combined Federal Campaign donations.

But there is some good news.  There are organizations out there whose numbers are a little more favorable.  CureSearch would be one of those.  CureSearch National Childhood Cancer Foundation is dedicated to raising private funds for childhood cancer research for the Children's Oncology Group, the world's largest cooperative cancer research organization.  And you want to know what their CEO's salary is?

ZERO!  That's right, he earns $0 for what he does.  

There is a great website that I've recently discovered called Charity Navigator.  It ranks charities with anywhere from 1 to 4 stars based on how they spend the money that is donated to them.  Here are the numbers for the organizations I mentioned above:

American Cancer Society - 2 stars overall, but only 1 of 4 stars for fundraising efficiency.
Leukemia & Lymphoma Society - 3 stars overall, but only 2 of 4 for fundraising efficiency.
CureSearch (CFC #10701) - 4 stars - for everything!
Pediatric Brain Tumor Foundation (CFC #10190) - 4 stars, again for everything!

Special Love for Children with Cancer (CFC #49642) isn't on Charity Navigator, but I can tell you just from experience with my family, what they do for the kids receives 4 out of 4 stars from me!

I don't know about you, but I know who my money will be going to!

So . . . I've seriously been up on my soapbox today, haven't I?  Trust me, this is only the beginning.  I miss my son.  More than I can even put into words.  It hurts . . .  it makes me want to scream . . . it makes me feel helpless . . . I hate it.  

HATE.  IT.

And if I can find a way to do anything about it, I will.  

I think this is a long enough post for today, don't you?

S.

6 October 2008 - again
So . . . I put myself "out there" and tried to pretend I'm moving on tonight.  It went ok I . . . I guess.

Our homeschool group had a Family Game Night tonight.  Mike is in Pennsylvania all week because someone, in their infinite wisdom, thought it was a great idea on his first week back to work to stick him in a hotel room by himself for five days, where he has nothing but time to think.  Anyway, I thought I should take Maxx to the game night.  It's not like I had a bad time really.  I won twice at bingo, and I got to see some people that I hadn't seen in a while.  It just felt . . . weird.  Everywhere I looked there were kids running around, having a great time.  

But one was missing.  One very important one from my viewpoint.

The funny thing is this though - if Keeghan had been there, he more than likely would have been sitting with me playing bingo rather than running around screaming with all the other kids.  He just wasn't the "lose your mind" kind of guy.  I took him to another homeschool meeting two years ago, and that was pretty much how it went.  I asked if he wanted to go sit at a table with some other kids, maybe meet some new people, and he said, "No Mama, I just want to hang out with you."

Don't get me wrong - it didn't break my heart at ALL that he wanted to be with me!  But looking back, I have to wonder if he quit being a little boy as soon as he was diagnosed with cancer.  It sure seems like he did.  

Then again - and I truly believe this is more likely - I don't think he would have been a "typical" boy, even if he hadn't ever been diagnosed with cancer.  Maxx and I walked home with her friend Tasha tonight, and they were talking about silly things that boys do (I believe it had something to do with sticking glow-sticks up their noses . . . ).  

Tasha said, "Even my 19-year-old brother would do that!"

Maxx came back with, "My DAD would do that!"  Then in the next breath she said, "Keeghan wouldn't though."  She didn't say it like she was sad though; she said it more like, "Keeghan would never be that dorky!"  

I had to laugh, because it was so true.  I made a comment to the girls that Keeghan had more cool points that 40 kids his age put together.  We always said he was the most mature one in the house, and that was true long before cancer.  

So there were funny moments tonight as well.  But as I sat there trying to make nice, and have a good time, my heart was breaking because he wasn't there.  All of this is just so wrong.

S.

6 October 2008
A friend sent this to me yesterday, and I loved it so much I had to share.


A Pair of Shoes
Author Unknown

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some women ache daily as they try and walk in them.
Some have learned how to walk in them so they don't hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has lost a child to cancer.

5 October 2008
You've all read here about how amazing Keeghan is . . . but because this site was started after is diagnosis with cancer, I feel like (many of) you don't know Keeghan B.C. (before cancer).

I wrote once a couple years ago about Keeghan getting upset over having his port accessed at Walter Reed and how, when he started to cry, I started to cry as well.  He told the nurse that that was just what we do - "when I cry, she cries."

Keeghan and I talked quite a few times about the story of his birth, and how we thought what happened on that day was why we seemed to have that strong connection.  He loved hearing the story so much, so I thought I'd share it here.

Keeghan was born at 4:03pm on March 7, 1996 at St. John's Hospital in Springfield, IL.  I had a very easy labor, up until the very end.  I didn't know it until Mike told me later on, but Keeghan's heart rate started to drop drastically in the last few minutes before he was born.  In fact, Mike told me that the doctor had set a time limit and that if I didn't manage to deliver Keeghan within that time limit, they were ready to do an emergency c-section.

I was oblivious to all of this.  All I knew was that they kept telling me to PUSH!

We made it though, and the c-section wasn't necessary.  As soon as Keeghan was born, I was able to hold him for just a short time though before they whisked him away to be weighed, bathed and then taken to the nursery.  I was told that he was "having difficulty breathing" - meaning that his breathing wasn't coming naturally, but not to worry.  They just wanted to keep an eye on him for a while.

After I was settled into a room, Mike left the hospital (he'd been up for well over 24 hours because of having had to work the night before).  At about 11:00pm that night, I had yet to see Keeghan again since his birth.  I rang the nurse's station, sobbing!  A nurse came into my room and asked what was wrong.

"What's WRONG??  I had a baby 7 hours ago and haven't seen him since just after he was born!  That's what's WRONG!"

Yeah, I was a mess!  But a few minutes later they let me go down to the nursery to see him, telling me that I could only hold him for a few minutes because he was still working too hard to breathe.

I took him to a rocking chair and sat down facing away from the nurses (I wanted my boy all to myself, without an audience).  It was so nice to finally be able to snuggle him, and kiss him.  As soon as I sat down, I started talking to him.  I told him how happy I was to finally meet him!  He was so beautiful . . . and in that funny way newborns have, he stared at me so intently, like he knew exactly who I was and understood every word I was saying.  He never wavered . . . he just watched me as I talked.  I told him about his Daddy, and how much he was going to love having such a great man for a dad.  I told him all about his wild and crazy big sister!  I knew she was going to be his favorite thing in the world, because she was just that awesome.

In all, I spent maybe 15-20 minutes holding my baby and talking to him.  When I had to give him back to the nurses, of course I cried . . . but I felt better for having held him.  Not being a nurse, I didn't notice him having any trouble at all breathing - he seemed just like a normal newborn to me.  But whatever . . .

About two hours later they came to get me again, telling me that I had to go to the nursery.  Instantly I was terrified!  Why?

The nurse told me, "You need to feed your baby!"

By this time, it had been over 9 hours since his birth and I hadn't nursed him yet.  I asked the nurse if this meant that his breathing was getting better.  She said, "Ever since you came down and held him earlier, his breathing has been perfectly normal.  He hasn't had any problems at all!"

Keeghan and I talked about it a few times, and we both came to the conclusion that his difficulty breathing was because he was stressed over being away from me.  My voice was the one he heard every day from the womb, and suddenly he was in this big new world without my voice, and it had him stressed out.  As soon as he heard me - he was "fixed."

During Keeghan's cancer treatment, whenever he was having any type of procedure done that might hurt, he always wanted me with him.  He liked having Mike there as well, but if he had to make a choice between us he'd say, "Sorry Daddy, but is it ok if I choose Mama?"  I truly think it goes all the way back to March 7, 1996 . . . we made a good team when it came to getting through difficult moments.

I only hope that he can still hear my voice now, and that it still helps him.

S.

3 October 2008
So . . . I haven't written in a while.

Here's the deal.  I've been torn.  After Keeghan's death, there were a small number of people who really upset me - either in things they said directly to me, things they said to others that got back to me, or in things I read that they said.

Seriously, I received an email that was forwarded to me where I got to see that an entire group of people was informed of my son's death in a postscript, as in "P.S. - Keeghan died on August 31, 2008."  Maybe I'm wrong, but I think that was a very callous way to notify people - especially if the email was later to be fowarded to me.

These different incidents were enough to make me not want to write here anymore because, as far as I was concerned, those people no longer had the right to read about my son, my family, my feelings . . . none of it.  I was THAT angry.

The problem is that I've never really written for the readers.  I write for myself, but I've been denying myself.  I don't want to do that anymore.

I've been reading back through some of the comments we've received over the past few weeks (23 pages worth in the Guestbook alone, as well as emails received).  I hope those of you who wrote these things won't mind me quoting them . . .

"He was a hero to many of us at his young age."

"Keeghan was the nicest kid on the block."

"Keeghan was an inspiration to me . . ."

"(We) are better people for having known Keeghan."

"It was a life changing experience being with Keeghan."

"Keeghan will live in our hearts always."

"He was an extraordinary and courageous person."

"People like him cannot help but inspire others to greatness in the simplest of actions: kindness, compassion, humor."

" . . . Keeghan lives in each of us who remember his extraordinary spirit."

"Keep the light of this special boy burning bright."

"Heaven has a special place for him where he will be waiting to see you all again."

" . . . we know that each of us will be a little better for having Angel Keeghan on our shoulders."

"Your website is such a testimony of love and determination."

"Keeghan was an uncommon man in a common world."

One of my real favorites - "I'm pretty sure Keeghan is beating Jesus at Guitar Hero and painting another beautiful sunset for us... "

This post really touched me, because I used to always say this to Keeghan - "He told me that he went to Ireland for his "Make-A-Wish" and I then mentioned I was Irish too. 'See my hair and these freckles,' I said. 'My daughter has freckles too, but she doesn't like them.' Keeghan then poignantly replied, 'A face without freckles is like a night without stars.' I have never looked at freckles, or the stars above, the same way again."

One particular comment comes back to me every day though.  One of the counselors from Camp Fantastic posted in the Guestbook that Keeghan taught her about strength and determination.  She went on to say that when she returned to work, she wrote on a Post-It "Live like Keeghan" and put it on her computer.  Every single day I think of that, and I try to do the same - live like Keeghan.

It took me reading back through all of those posts - and shedding no small amount of tears in the process - to realize that a few compassionless people should not stop me from doing what I want to do.

So, all of that said . . . here I am writing again.

What are we up to now?  We are on the verge of having to tackle finding our new normal.  Mike goes back to work on Monday.  At the same time, Maxx and I must finally start school.  We took the trip to Colorado, which was fun.  Maxx truly enjoyed getting to see where she was born, and it was nice to re-visit those places for Mike and I.  But it was also nice to get home.  I missed being around all of our things, and yes, I also mean I missed being around Keeghan's things.

Did we do any "healing" while we were there?  Honestly, I don't know.  I'm not even sure I know what that means yet.  I still cry.

Every.  Single.  Day.

I get incredibly annoyed when people ask me how things are going and I say, "Not great," and they give me this look like they don't understand.  Like things should be better.

My son DIED 33 days ago!

I go to bed at night thinking of him, and I wake up in the morning thinking of him.  I think of Maxx, and how she is having to move on through life without her sidekick in crime, her biggest champion, and the one who looked up to her like she hung the moon.

I think of Mike and I, and how empty the couch seems in the evenings without Keeghan there watching TV with us.  How empty our arms feel without those hugs.

How much we all miss Keeghan's incredible humor, smiles, intelligence, compassion . . . his love.

I had to pack Keeghan's school books and his school work from last year away today.  Because Maxx starts school on Monday, I've been working on getting all of her work ready for her.  Just seeing Keeghan's writing tore me up.  It didn't matter if it was actual words or just math problems - I was a mess!

We still haven't found a bereavement counselor.  But we just got back, so hopefully we will soon.  Maxx and I had a big blow-out on the way home from Colorado.  I won't go into all the details, but we finally had it out about the fact that she doesn't have to be "the rock" for everyone, that she is only 14-years-old and isn't expected to never be sad.  It was definitely needed.  But I think we all need someone to talk to that is outside the inner circle of the family.

So . . . I've rambled a lot, but have I really said anything?  I don't know.  I have so many things going through my head at any given moment.  Sometimes I can't even keep it all straight.

I think a lot about what I want to do with Keeghan's Cell by Cell Fund.  It is up over $1,000 now (THANK YOU to all who have made donations).  I want to turn it into a 501(c)3 but need to figure out how.

I want to find ways to raise more money for pediatric brain tumor research.  It may sound bad, but it bothers me that more money goes into research for some types of pediatric cancer than others.  I want to change that.

There are so many other things I have to say, but I think this is long enough for now.  I'll try not to have such long, silent periods in future.  My feelings change from moment to moment, so who knows.  But for all of you who have opened your hearts to us with your heartfelt comments . . . thank you.  You have no idea what comfort comes from knowing how much Keeghan touched others.  He is amazing, still.

S.

25 September 2008
Just wanted to let everyone know we are hanging in.  We are still in Colorado for a couple more days.

The cottages we are staying in are nice.  Our families stayed here the weekend we got married, so it's fun to be back.

We have deer that walk around the cottages occasionally, and the owners have a golden retriever that Maxx has made friends with.  There is a playground right beside our cottage where Maxx and I have nightly therapeutic teeter-totter sessions (see right).

According to the owners there is a mama bear and two cubs that come around once in a while.  I'm not disappointed that we haven't seen them yet!

So far we have taken Maxx to show her the chapel on Fort Carson where we got married, as well as to the local mall that Mike and his buddies walked me all over in an effort to get me to go into labor early with Maxx (it didn't work).  We've walked all over Manitou Springs and Old Colorado City also.

We found a pottery studio on Monday in Old Colorado City where you pick a piece of pottery, paint it yourself, and then they fire it for you.  You have to wait a few days to pick up your pottery though.

So on Tuesday we went back and painted.  Mike chose a plaque with a lizard on it.  I chose a big goblet.  Maxx chose a fairy statue.  Mike and I finished our projects in an hour or so.  Maxx, on the other hand, being the artsy one spent over 3 hours on hers (you can see in the picture how hard she was working)!  It's going to be fabulous though.  We pick all of our work up on Saturday.  It's going to be fun to see how different the pieces look after they've been fired in the kiln.

The nicest part is that these will always be very unique reminders of our Colorado vacation.

Yesterday we did something truly touristy, since a certain friend of Maxx's thinks we haven't done any "Colorado things."  We drove to the top of Pikes Peak.  Maxx loved it, mainly because it was cold!  The peak had got a dusting of snow overnight, so it looked very pretty.  It took a little less than an hour to drive to the top, and then we stayed up there for almost an hour and a half.  We had to eat the "world famous donuts" as well as walk around and take some pictures.

It was a good time, but after a while breathing at 14,110 feet gets to be exhausting!  So we headed back down to Manitou Springs for lunch.  Maxx wanted to hit the arcade for a little Dance, Dance Revolution (she's going through withdrawal being away from her own DDR game at home).  Then we spent a relaxing afternoon in the cottage.

Today I think we are going to Garden of the Gods.  This isn't a very regimented vacation - more of a week to relax, which we are doing.  I won't lie, I'm still having my daily breakdowns, and part of me feels like being here is wrong because Keeghan never got to see Colorado.  But I guess those are things I have to work out with the bereavement counselor (if I can ever find one I like).  There are still too many things in my head that I can't discuss here, and I hate that.  But the last thing I need is people angry at me for speaking my mind.

A special thanks to everyone who has donated to Keeghan's Cell by Cell Fund!  The fund is now over $500.  Mike and I will be researching how to turn it into a 501(c)3 when we get home.  I can't wait to write the first check toward pediatric brain tumor research!

Ok, I'm out of nice, friendly things to say so I better sign off.  Hope everyone is well.

S.

17 September 2008
Quick update:

Life is moving forward.  Slowly.  This past week has seen the return of Keeghan's ashes to us - something I had been anxiously awaiting since he left my care on August 31st.  We also received the official death certificates.  That was rough.  Birth certificates are such a precious thing for a mother to hold.  They just scream, "Look, here's my baby!!"  Death certificates . . . not so much with the screaming, you know?  Or I guess I should say, not so much with the happy screaming.

We had our first meeting with the bereavement counselor that Community Hospice sent out yesterday.  It was . . . meh.  Not a good fit for our family.  I want Maxx to have one-on-one time with a counselor, but this person was not very compatible with a 14-year-old.  So . . . I guess I will start looking for someone new.  Not quite sure how to do that, but I'll figure it out.

Other than that, we are just treading water, finding our way through the days.  We leave tomorrow on a road trip to Colorado Springs.  That is where Maxx was born, but we left there when she was 11-weeks-old and haven't been back since.  So we are going to take her back and show her all our old haunts - where we got married, the house we owned when she was born, the places we liked to hang out.  It's a trip meant to be all about the three of us.  That doesn't mean in any way we are trying to forget Keeghan.  He is always with us.  But this is something that needs to be a head-clearning trip, and Mike and I both think going to Colorado will be.

In the meantime, I continue to write.  To Keeghan.  It doesn't take the pain away, but it makes it more bearable to share it with him.

I hope everyone is well.

Shannon

12 September 2008
Ok guys . . . so here's the deal.  I need to take a break from updating here.

Before anyone gets all freaked out - I'm not stopping my writing!  I promise!

The problem is, the writing that I'm doing here isn't having quite the same therapeutic affect as it did before.  I've figured out the reason, although it took me a few days.  When I write here - and I mean really write what I'm feeling - it causes so many people to want to help/fix/advise/save me, and that isn't what I need right now.  I need to get through this myself, and in my own way, with Mike and Maxx.

I'm doing something I haven't done since before the age of computers - I'm actually writing in a journal.  By HAND!!!

What a concept, eh?

So you could say that I've started a new "book."  I'm calling this one "Conversations with Keeghan."  So many of the feelings that are tearing me up right now have to do with my own (irrational) feelings of guilt, as well as a huge dose of sorrow.  Sometimes there's still anger, but that isn't the predominant feeling anymore.  It's mostly sadness.  But saying what I need to say - to Keeghan - helps more than typing it here.  I know Keeghan understands my heart.  He was always good at that.

So please understand that I'm not stopping my updates here completely.  I will still keep everyone posted on what is going on.  It just won't be as often for the next little while.  I need the private writing, as well as the ability to whip out my journal and write whenever, and wherever, the mood strikes.  That isn't so easy with the computer.

I'm also getting back into jewelry making, something I haven't done in years.  My hope is that a portion of everything I make from selling jewelry can go into Keeghan's Cell by Cell Fund, because my greatest goal, like Keeghan's, is still to find a cure.

More later.

S.

10 September 2008 - 10:15 pm
How does it feel to "move on" with your life after your child dies?

It sucks.

Now there's some eloquent language for you, right?

There's this guilt . . .

Guilt that we watched the season premiere of a show that Keeghan always watched with us, but that he's not here to watch now.

Guilt that we're thinking of going to a place this weekend that Keeghan wanted to go to but never got to.

Guilt that I'm considering starting to go to the gym - something that I couldn't do before because I didn't want to give up that time with him.  Now that he isn't here, however, I can go.

But even more than the guilt is the almost unbearable sadness.

Sadness that Keeghan isn't here to watch the show, go to that place, or hang out with me and give me a reason to not go to the gym!

It hurts.  So much.  I want him here.  I want to feel him in my arms.  I want to hear him yell at the dog to stop laying on his feet.  I want everything that I can't have.

It hurts.  I want to stop time so that I can't do anything that Keeghan never got to do.  I want to stop time so that all of the pictures I have of Maxx are of her looking the same way she did when Keeghan was alive.  I want to stop time so that I don't have to pass someone on the street and see them get that look on their face . . . that look that says "oh, those poor people."

I just want to know that he's ok, and that he's not mad that we couldn't save him.

I want what I cannot have.

S.

10 September 2008
No posts in a few days . . . sorry.  From the celebration Friday night until now has been a whirlwind of activity.  Thanks to the remnants of Hurricane Hanna, we spent all of Saturday here at the house.  But it was all good.  Keeghan had started coloring a big Celtic poster before he died.  Mike and I decided that it would be fun to have the whole family help finish it.  So we took a "before" picture, so that we'd always know what part of it was done by Keeghan, and then we put it out on the kitchen table with all of his markers for everyone else to finish.  If you look at the 2008 Pictures page you'll see the before and after pics of it.  There is still one part to be completed - the very center was left for Mike and I to complete.  Everyone that worked on it signed around the edge, which I thought was a nice touch.

On Saturday night, we all went Cosmic Bowling to honor Keeghan.  That was fun, and emotional, all at the same time.  Sadly, I still stink at bowling, so I hope my son was somewhere getting a good laugh at that!

Sunday and Monday were a whirlwind of taking family around and showing them our lovely city.  We started off Sunday morning with brunch at the Officers' Club, followed by goodbyes to Cousin Jeff and Aunt Jane, who had to make the long drive back to Ontario, Canada.  We also said goodbye to my dear friend Jerrie who came from North Carolina to share in our celebration of Keeghan's life.  We followed that up by spending the entire afternoon on the National Mall.

Maxx took off with Aunt Lynda and her cousin Sarah to visit museums.  Mike and I took my brother, Brad, around to see the Vietnam Veterans' Memorial, the Lincoln Memorial, the Korean War Veterans' Memorial, and the National World War II Memorial.  We met up with Aunt Baby and Uncle Rick at the Washington Monument and then headed for Keeghan's favorite place on the Mall - the Smithsonian Museum of Natural History.

Sunday evening we said goodbye to Donna and Rick, as they had an early flight out on Monday.  Monday morning we said goodbye to Mike's parents.  Then Brad, Maxx and I took off for Arlington Cemetery.  We visited JFK and RFK's graves and the Tomb of the Unknowns.  We hiked a bit of the cemetery, just to take in the beauty and magnitude of it.  Then we Metro'd home to pick up Mike and Maxx's friend Tasha before heading out for Baltimore to watch the Orioles play.

Brad and I grew up on baseball.  Our dad was a Little League coach when we were really small, and Brad played baseball from the time he was old enough all the way through college.  I learned how to keep a baseball scorebook before I was even in high school and was the official scorekeeper for our high school team for four years.  Going to watch the Oakland A's play was a favorite family pastime for us.

Yeah . . . you could say we like baseball!

So we went to Camden Yards and watched the Orioles play.  It was great!  And it was a nice way to spend Brad's last night here with us.  At left you can see Tasha, Maxx, Brad and Mike - with Brad giving Keeghan's famous thumbs-up! - at Camden Yards.  Keeghan would have loved that.

Now today we start a new journey - the journey to finding what I call our "new normal."  Eventually Mike has to go back to work, Maxx and I need to get her started on 9th grade, and I need to find my own . . . purpose, I guess you'd say.  I used to have a jewelry-making business.  I'm considering starting that again, with a percentage of all proceeds going into Keeghan's Cell by Cell Fund.  We'll see I guess.

We still have a few details to finalize for Keeghan though.  There is some paperwork stuff that needs to be completed.  The medical supply place still hasn't come to pick up all of the supplies, i.e., wheelchair, oxygen tanks, etc., that Hospice had them deliver.  I want that stuff out of here.  Mike and I went through the house yesterday, cleaning up all signs of Keeghan when he was sick - medication checklists, appointment reminders, etc.  We want the reminders to be of Keeghan smiling, not Keeghan sick.

We don't have his ashes back, so we need to "bring him home" still.  I spoke with a bereavement counselor from Hospice yesterday; we will be meeting with her for the first time next Tuesday.  I think the rest of this week is going to be spent just taking a few deep breaths and trying to wrap our minds around everything.  I admit that I'm still having a hard time . . . with so much of it.  It was all too fast.  I still can't believe he's gone sometimes, and yet others I feel him all around me.

It's hard.  That's the brutal truth of it really.

Ok, I'm going to go add pics to the picture page.  Hope everyone is well.

S.

7 September 2008
It's been one week.  How has it been one week already?

Those are the only words going through my head this morning.  Writing a "real" post seems to be out of the question.

So instead I'm going to share a song that Keeghan and Maxx's dear friend Tasha wrote:

Cell by Cell

I know there's hope,
   just give me strength.
I'll use my faith to
   get him through it.
I know he can make it,
   but sometimes I just can't take it.
And then I remember

Chorus:
What he said two years ago,
   something that gave me comfort and hope:
"I'm going to beat this, if
   I have to do it cell by cell."
I get so excited when he's
   doing well but some days
I really can't tell
   He can beat this and he'll
do it cell by cell.

This is one battle he's not gonna lose,
   it won't even be close;
something tells me this boy has
   a purpose.
So many prayers directed above,
   so much hope and love.
His spirit is strong, I know he'll make
   it; because of

(Chorus)

But it's not only for him;
   this is for all.
All who suffer and comfort and cry.
We're all here waiting, just waiting
   for the day when they tell us,
   they've found the cure.
That's the day he's waiting for . . .
   the day he's lived for . . .

When that day finally comes we'll
   look back and recall

(Chorus)

I know he'll live and love,
   and I know he's being watched
   from above.
He's gonna beat this,
   he's gonna beat this
   cell by cell.

(9-2-08)

You may say cancer finally beat him,
but I know that's not the truth.
He beat cancer, cell by cell, and
now he's making sure no one will lose.
He's healthy, strong, and safe at Home.
His only concern now is those left
behind who feel alone.
You know, he beat this cell by cell.

6 September 2008
Keeghan's Celebration of Life was just that - a celebration of him.  At least that is how I saw it.  Not big on ceremony, but big on sharing.

Most of the family walked together from our house to the pavilion where the ceremony was held.  One of my favorite things was that Mike, Uncle Brad, Uncle Rick and Cousin Jeff all wore skullcaps of Keeghan's from back in the day when he had no hair from chemo and had to keep his head covered.  Mike wore stars, Brad wore shamrocks, Rick wore dragons, and Jeff wore skulls (the same one Keeghan is seen wearing at left).  We told each of them to keep their skullcaps - Keeghan would have wanted that.

It started off with a bagpiper walking from a distance down the river toward the pavillion . . . I can't even describe how haunting and beautiful it was.  Mike, Maxx and I stood together watching him walk toward us and we had to laugh through the tears because Keeghan would have though that was awesome!

The next part was me speaking.  Funny thing . . . I hear from a lot of people that I seem to have a way with words here on the website.  I think my spoken-word skills are less impressive!  I wanted to thank people for coming, explain to them why the ceremony might seem a little untraditional (because Keeghan was an untraditional guy), and tell a cute little story or two about my baby.  I think I got one story out . . . I honestly don't even remember everything I said!  I was trying too hard to pull it together!  But I do remember that I finished by reading a poem by a very good friend of ours, John.  He never met Keeghan, but through our friendship I feel that he knew Keeghan very well, and I will forever cherish this poem.


Keeghan

Not for waving flags or medals
Is the courage of a child.
Not in the heat of battle
When the blood runs hot and wild.

But for every second
And each minute of each day.
Facing fear and pain together
And still to laugh, to smile, to play.

To fight the fight for long months
Fighting on for year on year.
The courage of a little boy
Facing more than we could bear.
 
Sleep now little Celtic warrior
Sleep well, you've earned your rest.
Your flame burned ever brightly
You were the bravest and the best.


After I read the poem, Maxx sang Keeghan's goodbye song, i.e., It Will Be Me (see below).  She was amazing!  But I knew she would be.  I just don't know how she did it without crying!

The next speaker was Keeghan's buddy Ryan.  He told everyone what a great guy is best friend was.  It was incredibly touching.  He's such an awesome kid.

And then after that was our friend Terri read this, which was very awesome:

Everything I need to know about being a better Mom, I learned from a twelve-year-old with cancer.

I learned that money does not fix everything.

I learned that the dishes and laundry can wait.

I learned that t-shirts with squirrels and nuts on them . . . whatever, are funny to young boys - let them wear them!

I learned that a smile or a thumbs up is sometimes all you need to help get through one more day,

I learned that siblings can hold hands because they want to, not because they were told to.

I learned that some days you can have ice cream for breakfast.

I learned that time is not mine to give or take, and to treasure the time that has been given to me with my children and family.

I learned that I have decided to not change my name from MOM, even after hearing mom  . . . mom . .  momma . . . a hundred times a day - it's a beautiful thing.

I have learned to never, never stop fighting for something you believe.

I have learned that CANCER SUCKS.

I have learned that cell by cell we can find a cure.

After that, it was mostly just people milling about.  I know that the "formal" part of the celebration was short, but I wanted the socializing part to be the biggest part of the evening.  It was so good to get to talk to all of the staff from Special Love for Children with Cancer and Camp Fantastic!  They even brought the Mystery Machine!  That was great!

I wish I could have a recording of every conversation that I had last night, just to be able to relive everyone's comments about my boy.  A few times I got distracted by the slideshow and had to stop and just watch . . . and cry . . . he was so beautiful.  And I miss him so much.  Hopefully I'll be able to figure out how to get it up on YouTube or something so everyone can see it.

About three quarters of the way through the celebration it began to rain.  It was perfect though - not a downpour, but a gentle rain.  Keeghan loved the outdoors, and it has been beautiful every day since his death.  But last night I think even Mother Nature cried a little for Keeghan.  At least that is how I want to see it.

When it was all over the family walked together in the rain back to our house, where we hung out and just enjoyed each other's company.  Today we will do the same, although I think we might watch some videos of Keeghan too.  I need to hear his voice.

Blessings to all.

S.

4 September 2008
Very quick update for everyone:

Keeghan's Celebration of Life will be tomorrow, September 5, 2008 at 5:00pm.  It will be at the outdoor pavilion (across from the base CDC) on Bolling AFB.

If you do not have access to the military base, you can still come (and we hope that you will)!  You just need to go to the Visitor's Center (exit 1 off of I-295, follow signs to Bolling AFB).  You will be directed to the Visitor's Center from the base gate.  People will be there to sponsor you on base.

Thanks!

Shannon

4 September 2008
I'm struggling right now.  There's really no other way to put it.  My heart hurts.  For myself, for Mike, for Maxx.  It hurts for others too, but I haven't quite reached that level of compassion where I have room to worry about everyone else yet.

That shames me a little, because Keeghan would have room to care for everyone.

Keeghan's death is proving to be a lot like his diagnosis was.  You start finding that people you never expected to receive support from are unbelievably there for you.  Others are less so.  And, of course, there are those that just don't know what to say, but instead of saying nothing, say something inappropriate.

It happens.

There is selflessness, love, compassion, generosity . . . anger, callousness, self-centeredness . . . and underlying all of it, such deep pain.

The problem is - and my wonderful sister-in-law put it perfectly - not one of us is feeling the same pain.  I don't know what Mike's pain is, as a father who lost his son, any more than anyone else knows MY pain as a mother.  I do know other mom's who have lost children, but again - it's different.  I am the only person in the world who knows what I feel like having lost Keeghan.  Does that make sense?

I guess what I'm trying to say is that tensions are high.  It's been a rough few days.  Even though there have been a few people that have gone to great lengths to deal with the ugly stuff that would have destroyed us, there are still things that Mike and I have had to deal with that have been extremely hard.  On Tuesday we made the mistake of trying to take care of some of those things separately.  I can't speak for Mike, but I know that I learned I cannot do some of these things without him, nor can I let him do things without me.  It hurts too much, and it prevents us from being there for each other.  We have a boatload of family coming in today, and I am so excited to see everyone.  But no matter where the support comes from, I can't let myself forget that, when all is said and done, it is Mike, Maxx and I that suffer the greatest loss and have to hold each other tight.

We'll get through this - I know we will.  I wear a ring now that I bought for Keeghan last Christmas.  It says, "One Day At A Time" on it.  I'm still at the "One Minute At A Time" stage, but eventually that will change.

S.

2 September 2008
First off, so that everyone knows, we are planning a Celebration of Life for Keeghan on Friday, 5 September, at 5:00pm.  It will be here on Bolling AFB.  What I can tell you right now is that this is NOT a funeral.  No suits or mourning clothes or anything else that will make it look like a funeral allowed.  In fact, Maxx says she wants everyone in bright colors.  There will be a slide show of pictures celebrating the beautiful soul that was our son, along with his favorite music.  We would be thrilled if anyone wants to say a few words about Keeghan.  Consider it a sort of "open mike night."  Keeghan would have wanted it that way.

More details will be forthcoming.

Ok, all that out of the way . . . it's been a rough day.  I've been looking through pictures for the slide show, and while it is such a joy to see my kids' beautiful faces, it's been emotionally draining as well.

Add to that the fact that I received a box of stuff that I ordered a week ago today that included a "Cancer Sucks" sweatshirt that I bought for Keeghan.  He'd wanted it for a long time and I never bought it.  I finally did, but it was too late.

Yeah.  Rough day.

I've also spent a lot of time on the phone today, which is good and bad.  It's a great distraction to talk on the phone, but I'm realizing that I have a very hard time ignoring the stupid thing when I'm really not in the mood to chat.  I'm going to try harder to just let it ring tomorrow.  To anyone calling, please don't take offense!  I thought I was ready to talk to people, and for some I was.  For some I wasn't.  Sorry.

Right now I'm so . . . uptight.  I feel like I'm going to blow and start screaming any minute.  I understand it's normal, but that doesn't make the feeling any less annoying.

One last thing.  I know many people want to know if there is any place we would like donations made.  There will be.  We are planning to set up a foundation in Keeghan's name.  A portion of all donations will go to pediatric brain cancer research.  We also want to provide support for other families going down this cancer path just like others have helped us.  I will have more information on that soon also.

Ok, I need to get away from this computer now.  Hopefully I will be able to post more positively tomorrow.  Also, I have a picture to add.  Mike, Maxx and I, along with Mike's parents, decided last night to go have a picnic by the Potomac for dinner and watch the sunset.  On the day that Keeghan died, the sunset that evening was amazing!  Such beautiful colors.  One of Maxx's very dear friends sent her a text message telling her to go out and look at it, saying that Keeghan had painted a beautiful sunset.  She was right - he did.  So last night we decided to go watch it and remember Keeghan.  It was nice, and I think I got a pretty good picture of the lovely colors.  I'll try to get it up here tomorrow.

I'll say it again - I really need to get away from the computer and just be with the family.  Love to everyone.  Keep the messages in the Guestbook coming - we love them!

S.

1 September 2008
You know, I thought I would have a hard time with today . . . I've actually been thinking about it for a couple weeks now.  How could I possibly get out of bed and face the first day of this world without Keeghan in it?

But you know what?  He is in it.  I feel him everywhere.  Sometimes it brings a smile, sometimes a tear.  Ok, who am I kidding - sometimes a flood!  But he's here.

The day actually got started around 4:30am.  Kind of like yesterday.  I woke up from a sound sleep, not knowing what suddenly awakened me.  I figured it was one of the cats jumping on the bed or something, so I took advantage and got up to go to the bathroom.  As I walked back into Keeghan's room (where Mike and I's bed still is), I thought, "Wouldn't it be weird if it was 4:30 right now - the time that Keeghan left us yesterday?"

The clock was behind my pillow on the windowsill, so when I got back into bed and looked behind the pillow at it.  It was 4:27am.  Close enough, eh? So I closed my eyes and said a few words to my baby.

About half an hour later, Maxx came into the room.  She couldn't sleep and was looking for another blanket for her bed.  Instead of getting her a blanket, Mike just pulled the covers back for her to crawl into bed with us.  So for the last two hours that Mike and I were in bed, Maxx slept between us.

Along with two stubborn cats that refused to give up their spots!

It was crowded, but sweet.

I had hoped that I could make this picture big enough that everyone could read it, but it didn't work out very well.  So I'll type it out for you:

"Twelve years from now, in the year 2020, I hope to be cancer free.  I want to be a marine biologist.  I want to own a house that has no rules on pets, just because I want to adopt abandoned animals and other pets that I'll have just for fun.  I also hope to be very successful in whatever I do then.  I want to live in Ireland someday.  What I want most of all though is to be happy with my life."

Keeghan Barry, Grade 6

All of the kids in our homeschool group were asked the question, "Where will you be in 2020?"  They didn't all have to answer, but Keeghan did.  So this was what appeared in the yearbook.

He definitely achieved being cancer free.  He didn't get to be a marine biologist, but maybe he's out there helping one right now.  In my mind, wherever he is, there are no rules on how many pets he can have!  I can totally picture him surrounded by cats, dogs, his Salamander Zal that died a few years ago, horses . . . all the critters of the world!  He's already achieved being successful, on so many levels.  And no boy in the world should be happier with his life.  This site is proof of the incredible number of people he touched and inspired.  Mike believes that, when Keeghan's spirit left this world yesterday, he shared a little bit of it with everyone of us - family, friends, all of you reading this.  We each have the privilege of carrying a piece of Keeghan with us forever.

I hope you all believe that too.

S.

31 August 2008 - again
I had to add another post for today.  The outpouring of words from so many of you has been . . . well, astounding.  Please keep sending the stories - those ease my heart so much, just knowing how many people he touched and how many loved him.

And Eclipse . . . if you ever need carrots, or ANYTHING, you let me know!  I've got your back!

I wanted to share a song that Maxx and I have dubbed "Keeghan's Goodbye Song."  A few days ago . . . literally, like three days ago . . . Maxx and I were laying on the couch with Keeghan watching a movie.  It was Brother Bear 2 on the Disney channel.  I'd never seen it before, and honestly, wasn't paying much attention.  My focus was on Keeghan.  But when the movie was over, a song played during the closing credits.  Somehow, it broke through to my ears, almost forcing me to listen I think.  Just listen to it and I think you'll understand why.  I'm including the lyrics as well, for my baby.

It Will Be Me - Melissa Etheridge

If you hear a voice in the middle of the night
Sayin' it'll be alright
It will be me

If you feel a hand guiding you along
When the path seems wrong
It will be me

There is no mountain that I can't climb
For you I'd swim through the rivers of time
As you go your way and I go mine
A light will shine
And it will be me

If there is a key that goes to your heart
A special part
It will be me

If you need a friend
Call out to the wind
To hold you again
It will be me

Oh how the world seems so unfair
Creating a love that can not be shared
As you go your way and I go mine
A light will shine
And it will be me

Past the ever after there's a place for two
In your tears of laughter
I'll be there for you

In the sun and the moon
In the land and the sea
Look all around you
It will be me

There is no mountain that I can't climb
For you I'd swim through the rivers of time
As you go your way and I go mine
A light will shine
And it will be me
It will be me
It will be me...

31 August 2008
I've started some bad posts before, but this is the worst . . .

Keeghan left us at about 4:30 this morning.  It was peaceful, he had no pain.  We had a bad feeling last night, so we decided not to move him upstairs.  Mike stayed downstairs on the couch with Keeghan, insisting that Maxx and I go to bed.  Maxx and I didn't really sleep.  Instead, we cried.  We talked about Keeghan a lot.  But we didn't sleep really.

At about 4:20 Mike came upstairs to get the oxygen machine that hospice had delivered last week.  He told me not to get up though.  I stayed in bed for a few minutes and then though, "Ah, to hell with THAT!" and got out of bed.

I must have known . . . because Mike met me at the top of the stairs and told me that Keeghan was gone.  Maxx must have heard him, because by the time I made it to the couch, she was coming down the stairs.

We spent at least an hour talking to Keeghan, telling him how much we love him, how glad we are that he is no longer suffering.  Maxx laid down on the couch and held his hand.  I ran my fingers through his hair.  We played his favorite music.  For as horrid a thing as it was to go through - it was beautiful also.

We also told him that he beat cancer today.  No matter how hard that tumor fought to win, it lost.  Keeghan beat it down, and he is going to keep beating it down.  I won't go into morbid details right now; just know that Keeghan is still helping the doctors figure out how this thing worked, and how it can be beat next time.

I have a ton of thoughts going through my head right now, but they're so jumbled.  I'll get them out eventually.  For right now, I am missing my baby.  We have had friends here with us since 5:00am, so we are in good hands.  Mike's parents are flying in this afternoon, and his sisters will be here in a few days.  Maxx is hanging in.  She has Caitlin here for support.

It's a bizarre thing to look around and see Keeghan . . . everywhere.  I feel him everywhere also though, and that is so amazing.  As I sit here typing, I have his stuffed dog - Spot - in the crook of my arm, just like Keeghan had him when he left this world.  Spot went everywhere Keeghan went, and now he will go everywhere I go.

If anyone has anything to write about Keeghan - how he touched you, a funny story about a time when you were with him - anything at all, we would love to hear those.  This one little boy was so amazing, and touched so many people.  More than we probably will ever know.  But if anyone wants to share their stories, we welcome them, because it helps to keep our precious boy alive.

Thank you to everyone that has prayed.  I know that our prayers have been answered, because Keeghan is cancer-free now.

Shannon

30 August 2008
Just to let everyone know, I've added a few new pictures to the 2008 Pictures page.

No time for a full update right now, so here's the short version:

    * Took Grandad to the airport today.  Miss him already.
    * Made some changes to Keeghan's meds today and he seems a little more alert.  He has actually initiated some conversation today, which is something he hasn't done in a while.
    * Started Ritalin today - only one dose so far - but it seems to be working.  Yay!

Ok, that's all I have time for right now.  Thanks to everyone for the emails and prayers.

Shannon

29 August 2008
I keep starting to write, and then deleting what I've written because it doesn't sound right.

"It's been a good day."

Well, no . . . it hasn't been.  Keeghan doesn't respond to much of what we say, and has laid on the couch all day.  He's eaten a little, and he flips channels on tv.  But mostly he just lays there, even when we try to engage him.  So while nothing horrible has happened, the fact that we have him, but we can't interact with him very much makes it only a semi-good day for me.

His most responsive time is first thing in the morning before he's had his morning meds.    So this morning, while he was awake but still in bed, I was talking to him.  I can't remember what he said to me, but my response was, "You're a good man, Charlie Brown."  That is a phrase I've used with him since he was little.  When I said it today, however, he shook his head at me.

I asked, "You don't think you're a good man?"

Again he shook his head.  I asked, "Why?"

After a long pause, he said, "Because I have cancer."

Oh man . . . I can't tell you how that hit me.  He wouldn't even look me in the eye as he said it.  I made him look at me and I told him, "You are PERFECT Keeghan.  To me you will always be perfect, and you absolutely ARE a good man.  An incredible man.  You just happen to have cancer."

So yeah, that wasn't a good start to the day.  My poor baby, with everything else that he is dealing with, has thoughts like that in his head.  What is wrong with a world where a 12-year-old boy has to feel that way?

Needless to say, I'm having anger issues again.

As I've said before, we are working with the doctors on trying to adjust Keeghan's meds.    Mike drew labs on him yesterday, and his Dilantin level is high.  So for tonight and tomorrow morning, we are not giving him that drug at all.  Hopefully that will help some.  He's still "spilling protein" but that seems to be getting better as well.  As crazy as it sounds, we are actually going to start him on a small dose of Ritalin tomorrow.  I guess it works as a stimulant in kids that are not ADD/ADHD.  So Carlos' hope is that it will stimulate Keeghan to be more awake and interactive.  We'll see.

The one bright moment of the day came just a little while ago.  A few weeks (months?) ago I wrote about Maxx creating a tile in the Art Therapy room at the hospital that sold at auction for $8,000.  Today I received a phone call from the art therapist about it.  Apparently the family that purchased it would like to meet the artist.  So we are now in the process of setting up a meeting.  I spoke with the Executive Director from the Center for Cancer and Blood Disorders at Children's National Medical Center and he told me about how it was quite the bidding war between two different people for the tile.  Maxx still finds the whole thing so bizarre though!  This is the child that doodles on every piece of paper she can find - she can't even remember exactly what it was that she painted on the tile!  Like always with her though, I'm sure that whatever she painted came straight from the heart, and apparently that came through to those bidding on it.

One worry I have is that the family will be disappointed when they find out that the painter was actually the sibling of the cancer patient and not the patient himself.  Then again, maybe this will be Maxx's way of showing how cancer affects the whole family in a profound way.

Again . . . we'll see.

Mike's dad leaves tomorrow.  I'm more sad about that than I can tell him right now, so I guess he'll just have to read it here (sorry Dad).  It's been so good for Mike to have his dad here, and it's been good for me too.  Right now is the time when we need family to help hold us up.  Nothing can lighten the pain that we're all going through right now, but it's still nice to share the load.

Ok.  That's it for now.  Hopefully tomorrow I'll have news that Keeghan is perking up a little.

S.

27 August 2008
I think it is safe to say that Hospice has redeemed itself today . . .

Keeghan's hospice nurse and doctor came to the house to meet all of us today.  I think Dr. Gomez (who, per his request, will be Carlos from this point forward) came out primarily so that he COULD redeem Hospice's image in our eyes, and that's ok.  It certainly needed to be done.  I spoke with him on the phone yesterday and told him - through many tears - exactly what that woman said to me on Monday, and about how she treated us.  He knew we were not happy.

One of the things I was most impressed with was the way Carlos dealt with Keeghan.  He sat down next to where Keeghan was lying on the couch and, as he spoke to him, he reached out and put his hand on Keeghan's cheek.  Just that one gentle touch was enough to win me over.  It was very obvious that he is not just here to make sure Keeghan is medically taken care of; he's concerned about the boy as well.  That means a lot.

I didn't really get to see how Becky was with Keeghan.   Mike, Grandad and I were sitting at the dining room table talking with Carlos while Becky did her thing with Keeghan.  But Carlos says she is fabulous, so I'm going to trust his opinion.  I had a chance to talk to her while I was at the Visitor's Center getting her a 30-day pass, and she seems very nice.

Carlos sat at the table with us for quite a while.  We discussed Keeghan's lethargy, discussing ideas for ways to maybe adjust his meds so that he is more awake.  We also talked about getting some physical therapy and massage visits for Keeghan.  He asked us what Hospice can do for US.  We told him about our concerns for Maxx and wanting to make sure she is taken care of.  Carlos asked if we thought Keeghan was depressed.  Considering the fact that he doesn't show emotion at all right now, it's hard to say.  But we know him well enough to know that, if he is depressed, he won't talk to us about it.  Keeghan has always been more concerned with making sure we are ok.  There's no way he'll say anything to us that he thinks will upset us.  So Carlos asked if we thought it would be good for him to have some one-on-one sessions with Keeghan, without us around, so that he could talk to him.  We thought that sounded good, so he's going to start that on Friday.

Overall, we were happy with the visit.  It was especially good to have Grandad here.  We value his opinions so much, so knowing that he liked Carlos was good.  I'm just hoping that something can be done for Keeghan to "wake him up" a little.  Mike told Carlos that, for as much time as we have with Keeghan, we want him WITH us, i.e., as alert  as he can be.  That is what we are praying for right now.

One cute story to share . . . while Mike, Grandad and I sat at the dining room table with Carlos and Becky, Maxx went into the living room to sit with Keeghan.  Most of the day today she has sat beside him, reading her book.  She's wearing this hat that I bought for her while we were in Front Royal last week (she LOVES hats).  So while she was reading, Keeghan reached up and took her hat off of her head.  He then put it on his head.  So she went and got another hat.  Keeghan took THAT hat too!  He kept stealing her hats!  Maxx was cracking up.  I told her, "Baby, he's PLAYING with you!  He hasn't played in ages!"  It was awesome.

It's been a stressful week, but for the first time I feel a little relief.

Keeghan is laying on the couch listening to music . . . occasionally singing.  Maxx is beside him, reading.  I'm at the other end of the couch typing.  These are the moments I live for right now.

S.

25 August 2008
Just the word "hospice" tends to make people cringe.  In the past 13 days, I've had a number of people tell me that they've been through the whole hospice experience with a loved one and that hospice was amazing.  After our first experience with a hospice person, I'm still a little . . . cringy (yeah, I know, there's no such word, but it works for me).

It isn't that she wasn't nice.  I just wasn't prepared.  Keeghan's not been having a great day, so I was already a little upset before the woman even showed up.  Also, trying to figure out over the phone with Hospice who was coming to the house and at what time was . . . less than efficient let's say.  By the time she arrived at the Visitor's Center and I had to go get her, I was a mess.  So, once again, I called Pam . . . my savior!  It's a good thing I called her too, because I was so NOT prepared for the questions the nurse would have for me right off the bat.

She asked me if I wanted to sign the DNR paperwork while we were still at the Visitor's Center.  I know she was being nice, wanting to avoid having to do any of that in front of the kids, but WOW . . . "Hi, my name is *$@%.  Let's get down to the business of ending your son's life, k?"

Pam has been helping with getting the hospice nurses passes to get on base so that Mike and I don't have to constantly be going to the gate to sign people on.  So the nurse asked whether or not it would be taken care of ahead of time for the funeral home to get on base after Keeghan dies.

Again . . . WOW.  That was not a question I was prepared for, and especially not before we'd even left the Visitor's Center!

She also asked me if we were prepared for how quickly Keeghan's death could happen.  She described how, as the tumor grows, that eventually his brain would have no place else to expand other than down into his brainstem, and that when this "herniation" happens, it will end his life immediately.  That's a mental image I didn't really need.

All of that was before we'd even arrived at the house!

Once at the house, mostly all we did was review paperwork.  Mike had to sign a bunch of stuff.  It was almost like buying a car . . . except it didn't take nearly as long.  What a shame, right?  Buying a car takes hours, but hiring someone to help end your child's life takes no time at all.

I honestly thought that the hospice people would be able to help us figure out ways to do some of the things for Keeghan that are difficult right now, but today was nothing more than an "admission" into hospice.  Don't get me wrong, the lady was nice.  But what a messed up job to have!  She did take care of getting some equipment ordered for us that will be delivered tomorrow.  I don't even remember what all it was though.  I'll find out tomorrow I guess. They are getting a high-back wheelchair for Keeghan, but it isn't anything like the one he had at camp.  Hopefully we'll be able to get one of those soon though.  He needs something that provides lumbar support as well as reclining.

I called a medical supply place in Alexandria today and they described the whole process of how to get one.  I asked how long it would take.

"Sixty to ninety days."

Seriously?

Needless to say, it's been a frustrating day.

But it's the sweet moments that make it possible to remain standing.  As you can see in the pictures above, Keeghan has many sweet moments with all of us (Daddy's face has always been the best playdough to play with!).

While the hospice nurse was still here, Maxx left with Pam to go pick her daughter up from school.  Because I didn't want Keeghan alone, I left Mike at the dining room table with the nurse and went to lay on the couch with Keeghan.  There was music playing in the living room (on a playlist of Keeghan's favorite songs), but it wasn't very loud.  A song came on that has always been one of his true favorites and I asked him if he could hear it.  He said no, so I turned it up a little.  He still couldn't hear it very well, so I put my head on the pillow next to his and started singing it to him.  He immediately picked up on what song it was and started singing along with me.  He only sang a few words once in a while, but still . . . it was such a beautiful moment with him.

The song, for anyone interested in listening, was one by Garth Brooks called "The Storm."

I had to throw in one more picture of the boy with his dog.  He says she's his "Guard Dog."  I say she's just the "Dumb Dog."  I guess it's all a matter of perspective.

Ok . . . more tomorrow.

S.

24 August 2008
Here's a funny picture taken yesterday afternoon after getting Keeghan home from camp.  He was just chilling out on the sofa, watching TV . . . can you tell that his goofy dog was happy to have him home?

In other news, here are a couple of stories that I wanted to share . . .

Every year at camp, the kids plant a tree at the 4-H Center where Camp Fantastic is held.  The way Keeghan describes it, each of the kids is given a cup full of soil that they each add to help plant the new tree.  One of Keeghan's counselors told him that, if he'd like, he could call out the name of a child that was at camp last year but isn't this year.  So as Keeghan poured his cup of soil, he yelled out, "KIANA!"

He never fails to make me cry.  Kiana was the only other child from Walter Reed besides Keeghan that went to camp last year.  She died this past March.  I'd love to tell her mother about what Keeghan did, but I wouldn't want to upset her.  But I thought it was pretty cool.

Here's another good one . . . last October, we attended an Octoberfest Family Weekend put on by Special Love for Children with Cancer - the same organization that puts on the kids' camps.  Keeghan was a little upset about going though because it was the same weekend as a Light the Night walk put on by the Leukemia and Lymphoma Society.  He had wanted to walk to honor his friends, Alexis and Slater.  At the time, Alexis was 2-years-old and her parents had just found out that her leukemia had come back.

So something was said to Keeghan on the way home yesterday about going back to Front Royal in October for the Octoberfest weekend again and he said, "I'd like to go, but not if it is the same weekend as Light the Night again.  If it is the same weekend, I want to stay and walk for Alexis and Slater."

He truly is my hero.

He is settling in well at home.  He's very weak, and he has quite a few bruises, but that's to be expected.  His platelets were low when he left for camp, and just getting him  on and off of a horse every day probably contributed to a lot of the bruises on his legs.  According to him, it was all worth it though!

No pics yet from the camp staff, but that's ok.  Those people should all be enjoying a well-deserved rest today!

Tomorrow we meet with the hospice people for the first time.  I don't know what else to say about that . . . it makes my stomach hurt just to think about it . . . so I'll just stop here.

S.

23 August 2008
Keeghan is home!  Yay!

We had a little scare last night.  The doctor at camp, Dr. Steve, called us to let us know that Keeghan had a small seizure.  It was another of his "nose tickle" seizures, which he hadn't had any of for a couple of weeks.  So that was a little upsetting, but the doctor had already had labs drawn and said that Keeghan's levels were all good.  Between when the seizure happened and when the doctor called us (which I guess was about an hour and a half), Keeghan had gone to dinner, eaten Chinese food and ice cream, and was getting ready for last night's dance.  So he was obviously doing alright.

Still, I hate that he had to go through that without us with him.

But he's home now, and we are just glad to get our hands on him again.  I'm including a couple pictures here so everyone can see Keeghan riding Eclipse.  The pictures are actually ones that someone printed on regular paper for Keeghan to bring home and show us.  Mike used my camera to take a picture of the paper pictures . . . does that make sense?  So they're not as clear as I'd like, but hopefully I will get electronic versions of them soon and can put those here for everyone to see.

S.

21 August 2008
We got to see Keeghan tonight!  He wanted us there for the talent show with him.  Little did we know, the reason he wanted us there was because he wanted Mike to sing a song with him!  Keeghan loves the song "Cats in the Cradle."  Not the originial Harry Chapin version though; he likes the 90's remake by Ugly Kid Joe.

I've talked before about how Keeghan loves to listen to the words to a song and then "tell" you what the song is all about.  Well, he's always loved the song "Cats in the Cradle" but I think he really only listens to parts of it.  He hears the part that says "I'm gonna be like you Dad, you know I'm gonna be like you."  He loves his Daddy so much, and he was determined to sing that song with him!

The best part of the night - besides getting to hug, kiss, and just feel my baby boy - was what Keeghan said before he sang.  Mike and one of Keeghan's counselors wheeled him up to the front of the room and gave him a microphone.  He then said, "I just want you all to know, if I don't sound very good, it's because I'm going through puberty!"  The whole room cracked up!

Maxx and I sang along, and I cried, through the whole song.  When it was over, Keeghan got a standing ovation!  The entire room erupted in screams and applause.  A bunch of kids ran up and high-fived him, or gave him hugs.

My son was a rock star tonight!

All told, we got to spend about 3.5 hours with him.  So many of the camp staff came up to talk to us, many of them in tears, telling us how much fun Keeghan has had this week and how much they have enjoyed him.  One poor lady started to tear up as soon as she found out that we were Keeghan's parents, and then told us about him and his horse.  She's been with him every day that he has ridden Eclipse.  I guess after his daily ride, they wheel his chair up to Eclipse so that he can feed the horse from his hand.  She told us that Eclipse has really formed a connection to Keeghan, even leaning in to nuzzle his face.  Just imagining this beautiful animal leaning down to love on my baby . . . makes my heart swell.

While this has been a hard week for us, I can't help but feel it was SO worth it.  He is having an incredible time, and in two days, I get to have him back.  According to everyone we talked with tonight, there are literally HUNDREDS of pictures of Keeghan that they are going to email to me.  So expect this site to explode with pictures soon!

S.

20 August 2008
Why is this day dragging so bad?  Why is it that, when I'm with Keeghan, time goes by too fast, but when I'm away from him it moves so slowly?

Today has been a rough day so far.  We heard from Tammy at camp.  Keeghan is still having a good time, although it sounds like he is getting weaker.  Of course, this scares Mike and I.  A lot.  Tammy asked how I was doing and I pretty much fell apart on the phone.  I told her that I miss him, and I just want to feel my arms around him.  She understood.

An hour or so later, Tammy called back.  Today is "Farm Day" at camp and, according to Tammy, while Keeghan loves many of the other things he does at camp, he can sort of take or leave Farm Day.  He hasn't said that he doesn't want to go, but he also hasn't sounded quite as excited about it.  She thought that maybe we would like to come pick Keeghan up and spend the day with him instead of him going to the farm.  At first, I wanted to jump at the opportunity.  But I know my baby.  He'd see us, feel the homesickness set in, and not want to go back to camp.  I also know that he would regret missing the last couple days of fun.  All of us saying goodbye was hard enough on Sunday.  I don't think we could do it again.

So, as hard as it was, I told Tammy that I thought it would be better if we didn't come pick him up.  But I also told her that, if Keeghan says he wants us to come get him - for an hour, or to take him home completely - to call us and we'd be out of here in a flash.

Afterward, Mike and I talked about it.  Cried about it.  We know this was the right decision to make for Keeghan.  But it is killing both of us.  We want our boy.  Tammy told me that Keeghan talks about how he misses us, but also about how much fun he's having.  She told me that Keeghan said he can't wait to see his dad again.  I told Mike that and he crumbled . . . it's easy to forget how hard this is on him because I'm the one doing all the writing and crying all the time.  But Tammy said that if, at any point, she thinks Keeghan is no longer having fun, she will call us because she knows how precious our days with him are.

Yeah.  It's a rough day.  And it isn't even 2:00pm yet!

To everyone sending emails - thank you, and please understand if I don't email all of you back right away.  It's just too hard.  I told Mike and Maxx yesterday that I've finally come up with a way to describe the waves of pain that are hitting me.  Picture it as a faucet, constantly dripping into a large bucket.  Eventually the slow, steady dripping fills the bucket and it overflows.  That is me.  Every once in a while I overflow, and the tears come.  The pain is constant - drip, drip, dripping - and eventually has to spill out.  The pain never stops.  We've had some good laughs with Maxx this week. She is such an amazing joy.  Thank goodness she understands that the pain is always there, but also knows how much of a comfort it is just to hold her.

I got a phone call from the DC DMV today.  The social worker at Children's faxed in a request for handicap parking placards for the cars so that, when we take Keeghan places, we can park in handicap parking.  Well, this lady from DMV called because she needed some additional information.  The original form filled out and sent to her was in Keeghan's name.  Because he is not a driver, she needed a new form filled out in either Mike's or my name, as "the parents of the terminally ill child."

It was the first time anyone had used that phrase - terminally ill - to me.  I didn't like it.  I got the new form filled out and faxed back to her though.

Have I said that it's been a rough day?

More later.

Shannon

19 August 2008
Camp Update!  Tammy, the nurse from camp, called me with another update this morning on how Keeghan is doing.  Once again, he insisted on getting out of his wheelchair at campfire last night.  He's been high-fiving people as he passes them.  And today he got to do the one thing he's been longing to do - he got up on a horse!

Tammy says they took him down to the ring where the horses are before everyone else so that he could have some riding time by himself.  He chose the biggest horse of them all - Eclipse - to ride.  Mike says he thinks that is the same horse Keeghan rode last year at camp.  Anyway, it took a couple people to get him up on the horse, and then he rode for about ten minutes.  What was really cute, and Tammy was laughing about when she told me about it, is that even though he only rode for about ten minutes, I guess it felt like much longer to Keeghan.  He told her that he was on Eclipse "for 15 minutes . . . maybe even half an hour!"

He's having such a good time.  I miss him so much - my heart aches from it.  But I can't help but be happy that he's getting this time to enjoy his camp.  One thing that makes it more bearable is the fact that, when Tammy called today, it sounded like everyone at camp was also enjoying being with Keeghan.  Not only is he having fun, but once again he is working his unique magic and touching those around him.  There is so much strength to be found in that.

One other story Tammy told me.  The theme for camp this week is cartoons.  In fact, the camp shirts that the staff all had on Sunday said "Camp Fantastic" on them but the "Fan" part was crossed out and had "Toon" written above it.  So instead of being "Camp Fantastic" this year it is "Camp Toontastic."  We thought that was pretty cool.  So last night they had a Scooby Doo night.  One of the camp vans had been decorated to look like the Mystery Machine, and a few of the counselors were dressed up as the characters from Scooby Doo.  Tammy says that these counselors got Keeghan to take a picture with them and that it turned out so cute.  I can't wait to see it!

So he's having a good time.  Mike and Maxx and I are doing well too.  We walked around the booming metropolis of Front Royal, VA yesterday.  Woo hoo!  Actually, it is a cute town, and it's nice to get away from the hustle of DC for a few days.  We've been enjoying just hanging out.  The tears still hit me sometimes, and Maxx understands.  She's angry at everyone though for just accepting that Keeghan is going to die.  She wants everyone - and I mean every single one - of us all to stop thinking that way.  She says we can't discount Keeghan's ability to fight, and I agree with her.

Like Keeghan always tells Mike, when he looks in the mirror, he sees a fighter.  We should all be as tough as he is.

Ok, tears coming, so I need to bolt.  We're off to entertain the bored 14-year-old for a while.

S.

18 August 2008
Keeghan is off to camp.  I cried after he got on the bus yesterday.  Actually, I cried before he got on the bus too.  But after he got on the bus, we stood beside the bus and Keeghan waved at us.  He saw me crying and mouthed the words:

"Don't cry."

Yep. I cried more.

A nurse from camp called this morning to say that Keeghan was doing well. Yesterday afternoon Keeghan decided that he needed a rest after getting to camp, but when it came time for evening campfire he insisted on being taken there.  So he was taken to the campfire in his wheelchair.  I guess they positioned his wheelchair thinking he'd stay in it, but Keeghan insisted on being helped out of his wheelchair and into the bleacher-style seats around the campfire.  Essentially, he wanted to be like all the other kids.

That's my boy!  Not letting anything limit him.  I so love that boy!

So, anyway . . . he is doing well.  Mike, Maxx and I are settled in our hotel room, 10 miles from Keeghan.  We may not be able to see him every day, but we are close by and he knows it.

The anger is still with me in a big way.  Enough that writing here is . . . difficult right now.  The tears hit me in waves, without warning most times.  But it is good that I am here instead of home where there are so many reminders.  It's all so hard.

Ok, that's all I can say for now.  Please know I welcome all of your prayers for Keeghan, and for Maxx . . . for all of us.  I don't care who you pray to - I welcome it.

Thank you - to everyone.

S.

16 August 2008
I'm having anger issues today.  I went to bed around 10:30pm last night and at 2:00am was wide awake.  Thinking.  For about two hours, that's all I did.  And the more I thought, the more angry I became.  I was finally able to get back to sleep early this morning, and I think I got another 2-3 hours of sleep.  But the anger is still there.

Even though Keeghan doesn't seem like Keeghan right now - his speech is very slow, he doesn't respond very quickly when spoken to - his mind is still sharp.  He and I were having a cuddle on the couch yesterday and I was asking him the normal questions - how are you feeling, etc.  At one point he told me that he might need to go outside and break some plates again.

Me: "Okay, not a problem.  But tell me bubby, what are you angry about?"
Keeghan:  "Well, Daddy said that the doctors don't have any more medicine to fight my tumor, right?"
Me:  "Yeah bubby, that's what they said.  Is that why you're angry?"
Keeghan:  "Yeah."
Me:  "I'm angry too."

short pause

Me:  "Are you afraid?"
Keeghan: (very long pause, obviously processing this in his mind before answering)  "Sometimes."
Me:  (crying by this point)  "I'm afraid too."

If there is one thing he should not have to be in all of this, it's afraid.  So we talked about his friends that have died - Slater, Little Kiana and Big Kiana.  I told him that I think there should be a special area of Heaven for these kids that have had to fight so hard, kind of a VIP room that only they can get into.  It would have all the latest games and books and movies, so they can have fun while they wait for the rest of us to join them.

Keeghan thought that sounded like a good idea.

So I was thinking about that conversation while I was laying awake last night.  Also, I was thinking about so many things people have said to me over the past two years.

"God has a purpose for Keeghan."

"This is all part of God's plan."

And my personal favorite - "God doesn't give you more than you can handle."

Ummmm, yeah, he does.

I've never said it before here, because I don't want to offend anyone, but I've never done well at accepting those statements.  I smile and nod my head.  Sometimes, if I know you well enough, I'll respond with one of my normal sarcastic comments about how God seriously underestimated me.  But underneath it all, those comments make me angry.

My son is respectful to everyone.  He has more compassion in his little heart than a lot of kids his age.  Hell, all he ever wanted to do was grow up and CURE CANCER!  And this is what he gets?

I appreciate that everyone prays - I pray too.  But I'm angry.

And please, don't anyone feel like they have to point out the 5 Stages of Grief to me  - I know what they are, and believe me, I know exactly which stage I'm in right now.  I expect to re-visit this stage numerous times in the coming years.

Oh, and if one person says anything after all this is said and done about how we, as a family, must be a little relieved that it's over . . . be ready to block your vital parts, because I am coming at you.  I don't care who you are, friend, family, whatever.  I will hurt you.  Of course, Mike says I will have to get in line behind him, and he's not aiming for vital parts.  Anything he can make contact with is fair game.

I've heard people say that about people after they've lost a loved one - "I know it is so hard for them, but I'm sure they're relieved to a certain extent that it's over."

I would rather spend the next 50 years of my life helping Keeghan to walk, bathe, go to the bathroom . . . all of it, than watch him die.  And not just die, but die in a way that takes away his independence and his dignity, but (for now at least) leaves his mind so sharp that he realizes every little thing that is happening.

I know that I could never specifically wish this on anyone else, but it's hard not to think about it - why is it my child, and not that child that screams and yells at his parents and has no respect or caring for anyone but himself?  Or that girl that looks down her nose at other girls because they're not as skinny, or as well-dressed, or WHATEVER.  I see those children everywhere I go.

And they're all healthy.

Or why isn't it the kid that is going to go out and shoot someone today as an initiation rite to get into a gang . . . or the teenage drunk driver . . . or the drug dealer?

Why, dammit?  Why is it my baby?

"God doesn't give you more than you can handle."

God (and Mom, and everyone else who has thrown that cliche at me) is wrong.  This IS more than I can handle.

It's time for Keeghan's morning cocktail of meds, so I guess this saves you all from reading more of my ranting.

Sorry.

Shannon

15 August 2008
I forgot earlier to tell about the American Idol Meet & Greet and concert last night.  The Meet & Greet was really more of an autograph session.  The Idols were all sitting behind a row of tables signing autographs as people filed past them.  You weren't allowed to take pictures with the Idols; you could take a picture OF them, but not with them.  We were told to go through the line last though, so I thought something might be up.  I was right.  After everyone else had gotten their autographs, the Idols - all 10 of them - took a picture together with Keeghan, Maxx and Tasha.  They all crowded around Keeghan's wheelchair.  Like a fool, I didn't get my camera out and take a picture also.  I was too busy trying to keep from falling apart!  But I had to give them my email address, so hopefully I'll get a copy of the picture to put here on the website.

Maxx and Tasha were ahead of us in the autograph line, so they got to David Cook before us.  Maxx gave him one of Keeghan's bracelets and a dog tag with Keeghan's name on it.  According to Tasha, David was extremely gracious and thanked Maxx.  She says he seemed very genuine, which made Maxx's day!  She now says he is her future husband!  Mike was pushing Keeghan through the line in his wheelchair, and he was giving every one of the other Idols a bracelet.  It was very cool.

The Meet & Greet was at 4:00pm, but the concert wasn't until 7:00pm, so we went to a nearby restaurant to eat between times.  By the time we finished eating, got back to the venue, bought souvenirs for the kids, and found our seats, Keeghan was done.  He was exhausted.  He couldn't hold his head up at all.  So he and Mike ended up leaving before the concert even started.  I felt so bad for him, and hated not being able to leave with them.  As much as I wanted to see the concert also, I hated not being with my baby.  But Maxx is my baby too, and she and Tasha had worked hard to raise money for the tickets.  In the end it was a good show, and it was fun watching the big screen to see how many of the Idols wore Keeghan's bracelet (Kristy Lee Cook definitely did, and the girls say they're pretty sure that David Archuleta and David Cook did).

I don't know how many of you are American Idol fans, but this year's winner, David Cook, has a brother who is also battling brain cancer.  We noticed at the Meet & Greet that he was wearing a suit.  He was still wearing it during the concert.  He told the crowd that the reason he was wearing it was because he had met with the Senate yesterday to discuss "cancer stuff."  I so hope that he uses his newfound celebrity status to raise brain cancer awareness and research funding - so no one has to go through this nightmare again.

The girls and I took a cab home after the show.  It was kind of funny because, in order to get on the base, taxi drivers have to turn over their taxi license to the gate guards and then stop and get it back on their way off base.  Well, our taxi driver wasn't turning his license over to anyone.  Instead he said, "They'll just get out here."  So the girls and I walked home from the gate.  It's only about a mile, but it was nearly 11:00pm!  This is the weirdest base we've ever lived on, that's for sure.

Hopefully I'll have a picture from the concert to put up here soon.  I can't wait to see it myself!

S.

15 August 2008
This journey with cancer is one that nobody should ever have to take, and it is truly my hope that someday no one has to.  But one of the wonders of this journey is the incredible people you meet along the way.

Keeghan and I just had a visit from friends that we made at Walter Reed.  Tom and Cheryl lost their precious boy, Slater, a little over a year ago.  They came to visit today with their older son, Pierce.  Their generosity, ability to share their experience, and their willingness to want to help us through what we are going through, blows me away.  I can only hope that I will someday be as strong as they are.  I can't thank them enough - for visiting, for caring, for being there.

Keeghan was pretty amazing after they left.  He was tired, so I helped him to lay down on the couch.  He looked like something was wrong, so I asked him what was up.  He said, "I'm just sad.  They are so nice.  It just doesn't seem right that Slater was taken away from them."

I couldn't agree more.

But it was such a Keeghan moment.  He is always thinking about or worrying about the people around him.  He wants to take care of all of us, when we're trying to take care of him.

It just doesn't seem fair.

S.

14 August 2008
It's official.  Keeghan was taken off of the AZD study yesterday.  In the 24-hour urine collection he spilled 50 grams of protein, which I guess is WAY high.  It also explains a lot of his weakness and inability to move; he's seriously protein deficient.  Unfortunately, the doctor called about 15 minutes after Keeghan had taken yesterday's AZD dose.  But hopefully he will be able to regain some of his strength between now and Sunday, because that is the day he leaves for camp.

Yes, can you believe it?  I'm still letting him go to camp.  He loves this camp - the people who run it, the kids that go, the location where it's held, just all of it.  It's going to be so hard to let him go, but we have to.  Mike and I were talking in the clinic the other day about getting a hotel room in Front Royal, VA (where the camp is held) just to be closer to Keeghan if he needs us.  Apparently the social worker at the hospital was paying attention and made a few phone calls.  She called us yesterday to say that she has an organization that wants to pay for our hotel for the week.

Amazing.

The outpouring of love and prayers since yesterday's post has been astounding.  Thank you, every one of you.  We are (for the most part) doing ok right now.  I know that everyone wants to help, but other than continuing to pray, there's not anything to do.  I know that it is the way of our military family to want to bring meals to help, but you have to understand something about Mike and I - the writing that I do here is my therapy.  Cooking is Mike's therapy.  He loves to cook, and he's an amazing cook.  Keeghan loves Daddy's cooking.  So if he were to suddenly stop cooking, well, first of all Mike would lose his mind!  But also, we are trying to keep everyday life as normal as possible for the kids, and if we had someone else bringing in meals every day, it would scare them.  Please know that, if the time comes when we need it, we will let you all know!

For right now, our plan is to get Keeghan strong again.  This AZD drug did nothing to the tumor.  What it DID do is drive his blood pressure up, make him protein deficient, AND make him hypothyroid!  It's no wonder he's so tired, right?  So now that he's off the AZD, we will work to resolve those problems and get him as strong as we can so that we can get out and enjoy our days.  My wish is to have the freedom to get up every day and ask Keeghan, "What do you want to do today?"  And if he says, "I want to go to the zoo" or "I want to go the the natural history museum" then that is what we do.  These days are precious, and I want them to be happy days for both kids.

Speaking of making days happy . . . we have a funny day ahead of us today.  One of my well-kept secrets is that I am a HUGE American Idol fan.  I've watched ever since Season 1, and along the way have turned Keeghan into just as big a fan as I am.  Maxx likes the show, but can take it or leave it.  Not Keeghan and I!  We actually vote.  Seriously, I'm a nut, I know.  Anyway, Maxx and her good friend Tasha that lives next door set out a few months ago to raise money to buy tickets for all of us to go ("all of us" meaning Mike, Keeghan, and I as well as the two girls).  They washed cars, babysat, dogsat - you name it and they were willing to do it to raise the money!  I managed to get Keeghan a space reserved in a handicap section so that he can go in his wheelchair (Mike will sit with him while I hang with the girls).  While we were at the clinic on Tuesday we mentioned to Debbie, the nurse practitioner, that we were going to the concert.  She got on the phone yesterday and called the venue and managed to get us passes to the Meet and Greet with all of the idols before the concert today!  So we will all get to meet the American Idols!  I thought Tasha was going to jump out of her skin when we told her yesterday - it was awesome!  Hopefully tomorrow I'll have some good pictures to post here for you all to see.

This has been a long post today, and I probably could go on rambling for a while still - that's just how busy my mind is right now.  But instead I'm going to end with something that Mike wrote this morning.  It made me cry, but then again, it doesn't take much to do that.  This really hit me though.

                                      It's a father's love that drives
                                      It's a father's love that guides
                                       It's a father's love that fights
                                     It's a father's love that survives

                               Today the foundation has been rocked,
                                                but remains strong
                        Today the center has been knocked off balance,
                                                   but remains true

                        I will continue to drive, guide, fight, and survive
                            Because I AM Daddy and it's a father's love.

He says that I am the "foundation" and the kids are the "center."  My blessed warrior, that's what he is.

S.

13 August 2008
Well, the 24-hour urine collection is done.  Mike is gone to the hospital to turn it in.  So now we wait to see if Keeghan will stay on the AZD or not.

Keeghan is asleep on the couch, with his dog asleep on the ottoman beside him.  I can't stand to not be able to see him, so I'm sitting with my laptop at his feet.  At one moment, there are so many things going through my mind, and then the next moment I'm just . . . blank, like it's all more than I can process.  Which it is I guess.  Maxx is at her play rehearsal, but she'll be home in a couple of hours.  She spent the night at Caitlin's last night, which was good.  She needed that break.  Even though she doesn't know exactly what is going on, she knows things are not going well.  She's a smart kid.

Now we just wait to see what the urine results are.

S.

13 August 2008
I don't even know how to start this post.  My mind is so fragmented right now.  Kind of like my heart I guess.

Because Keeghan has been so weak lately, and getting progressively weaker, we took him to the clinic yesterday instead of waiting until Thursday.  They drew labs to check his medication levels, and then also got his MRI (that was supposed to be today) bumped up to yesterday.

He is "spilling protein" in his urine, meaning that the level of protein in his urine is too high.  Because of this, Dr. MacDonald told Mike we had to stop giving Keeghan the AZD.  My first thought was to ask if we were taking him off of it permanently.  The reply was, "Probably."  My next question was, "Then what do we do next?"

You have to understand that it was really Mike asking these questions . . . I threw them at Mike to ask the doctors, but those have always been conversations held outside of Keeghan's hearing.  So Mike went out in the hallway to talk to Dr. MacDonald.  When Mike came back in the room, he told me he needed to talk to me.

I knew.  Even before he took me to a private room (where the social worker was taping a "Do Not Disturb" sign to the door), I knew.

The answer to what next?

"Keep him comfortable."

Wow . . . I didn't think I could cry again after the amount of tears I shed yesterday, but here they come again.

At the end of the day Dr. MacDonald changed his mind and told us to keep Keeghan on the AZD.  At least until the director of the AZD study forces us to take him off of it.  He thinks that the urine samples we've been getting are not valid samples.  Because Keeghan has only been awake for about 7-8 hours every day, it's hard to get him to drink a lot in that short period of time.  So he's dehydrated, not giving the best possible urine sample.  They gave him a liter of fluid intravenously yesterday, and we are doing another 24-hour urine collection.  Hopefully this one will have a normal protein level and he'll be able to stay on the drug.  Because if he can't, there's nothing left but palliative care.

The MRI, by the way, showed that the tumor has grown a little and that there is some swelling.  The labs showed that one of his thyroid levels (TSH) is three times higher than normal.  All of these can be contributing to his tiredness, as well as some of the other symptoms he's having.  So we've now added Decadron (a steroid given to reduce the swelling in his brain) and Synthroid (for his thyroid) to the rest of the meds he's taking.  That puts him up over 20 pills a day.  But the hope is that they will get him out of this tired fog he's in right now so that he can have more quality days.

So that's where we're at right now.  Trying to make every day a quality day.  Granted, we've always tried to live that way.  But now it seems more important than ever.

We haven't told Maxx or Keeghan any of this yet (so Tasha, since I know you're reading this, please don't tell Maxx too much, ok?).  The nurse practitioner at the hospital is contacting a hospice group today.  I guess they're good at more than just end-of-life care . . . they can provide care for Maxx as well, to help her deal with all of this.

Don't get me wrong - we're not writing him off.  I'm still praying he stays on the AZD, and that it does what we want it to do.  But yesterday's news was . . . staggering.  My heart hurts, my eyes hurt (and trust me, they look like hell today too).  How do I live without him?  His smiles, his voice, his smell, his hugs . . .

Me:  I love you Keeghan.
Keeghan:  I love you too.
Me:  I love you more.
Keeghan:  No you don't, it's the same but it's a whole lot.

I just don't understand why this has to happen, and I have no idea how to live with it.

Anyway . . . I have to stop.  I can't be like this all the time.  Not yet.

Please keep praying.  Please.

S.

11 August 2008
Keeghan is having a rough time right now.  There's no other way to put it.  Since he got out of the hospital nearly 3 weeks ago, he has deteriorated.  He cannot walk by himself now.  He leans heavily on one of us.  It takes both Mike and I to get him in and out of the shower or bath.  I won't lie - I'm terrified.  Keeghan has an MRI on Wednesday, and I am so afraid of what it will show.

Mike seems to think that it might just be the cocktail of drugs Keeghan is on that is making him so much weaker.  He's currently taking 17 pills per day - 6 Dilantin (anti-seizure), 4 Keppra (anti-seizure), 5 Captopril (high blood pressure) and then 2 AZD2171.  And we'll be adding one Captopril per day until we get his blood pressure under control.  It's crazy!  Two of the side-effects of the AZD2171 (which I call AZD for short most of the time here), are fatigue and high blood pressure.

The fatigue is definitely apparent right now.  Keeghan loves his sleep, and normally sleeps about 12 hours per night.  He'd sleep longer than that if you let him, but then he has a hard time getting to sleep at normal time the following night.  Now, however, he sleeps 14+ hours per night, and is still more than ready to go to bed at normal time the following night.

Another thing that has me worried is that his hearing seems to be failing.  Sometimes it is a little funny, because he's like a little old man.  If there is a conversation going on around him somewhere but he can't hear what's being said, he's constantly saying, "WHAT??  WHAT??"  When we asked the doctors about it, we were told that it could be from the tumor causing pressure on the area of his brain that controls hearing.  Which means, once this AZD starts doing it's job (which I am praying it will - very soon), his hearing should improve.

Needless to say, things are stressful around here.  Keeghan is still himself, and still has his sense of humor though.  Last weekend I bought some baskets for organizing some things and I put one by the side of the couch where he sits all the time so he had something to keep his "stuff" in, i.e., nose spray (for nosebleeds, which he hasn't had one of since July 22nd), tissues, Purell, etc.  When I put all that stuff in the basket, Keeghan said, "Great, now I have my Geek Basket!"  Poor guy!

Another cute thing he said (that nearly made me cry) was yesterday - he gave me a big hug and, when he finally let go of me, he said, "I love you so much, I could rip your head off."

He's so sweet, and so undeserving of all of this.  Having to sit by and watch it all, and not be able to do anything . . . it is the worst pain I have ever felt in my life.

Mike just came in from work.  Apparently, after telling his co-workers how Keeghan was doing they kicked him out of the office and told him to work from home this week (thanks guys!).  It really is a two-person job right now taking care of him.  I just hope and pray that this AZD is doing it's job and he starts feeling some improvement soon.  I can't imagine how hard it must be to be a 12-year-old boy and have to give up so much of your privacy and independence . . .

Please keep the prayers and positive thoughts coming!  Thanks to everyone who has sent cards, jokes, and signed the Guestbook!  Every little thing helps!

Shannon

Do you fear cancer?  Or does cancer fear YOU?
I'd like to tell everyone about a fabulous program to help families dealing with cancer - like ours.  It is called the Cool Kids Campaign.  They are a non-profit organization dedicated to providing higher quality of life for kids with cancer and their families.  One way they do this is through the Cool Kids Campaign Cancer Fears Me Designated Patient Fundraising.  This program allows families to raise money for themselves.

I can tell you firsthand, one of the most difficult things to do as a parent is be forced to worry about the financial side of dealing with cancer.  My priority is Keeghan, his happiness and well-being.  But as most of you know, in order to get Keeghan treated by the best doctors, we had to change his military insurance a few months ago and take on paying part of his medical bills ourselves.  Through the incredibly generous donations of Mike's co-workers, our first year of payments have already been covered, but the fiscal year is almost over.  Come October 1st, we will be facing another round of medical bills.

Additionally, we learned one serious lesson this past month, and that is that hospital stays are expensive in ways other than just the medical bill.  In the three days Keeghan was in the hospital, we spent more than $250 on meals and gas for Mike and I.  It was shocking!  But asking for help with those types of expenses is something that I - and most parents in the same boat, I'm sure - have a hard time doing.  The Cancer Fears Me program allows us a way to raise funds for those medical bills and other expenses that go along with having a child in cancer treatment.

The way the program works is this - when items are purchased from the Cancer Fears Me Store, 25% of every sale is sent directly back to the Designated Patient.  In our case, for every order that is placed and Keeghan's ID #239 is used on the order form, 25% of your purchase will be sent to us to be put toward his medical expenses.  The other 75% goes back into the Cool Kids Campaign's other amazing programs, such as their Family Support Fund, Care Packages, and the Cool Kids Connection (a quarterly newspaper sent to over 150 hospitals nationwide, and where we found out about the fundraiser in the first place).

So if anyone is interested in showing the world that cancer fears THEM, as well a helping our family out, please shop!  There are some very cool items for sale.  For those families reading this who also have a child going through cancer treatment, I highly encourage you to sign up for this fundraiser for your own family (the verification form can be found here).  There is no shame in helping yourself with the horrible financial side of this journey we are on.

Thanks in advance to everyone.

Shannon

8 August 2008
My thoughts are very random today.  After my rage of yesterday, I guess my mind is just a little fried!

I'm feeling very discouraged about how things are going with Keeghan right now and, no matter how hard I try to kick it, I can't get rid of the feeling.  I know that the AZD is causing his fatigue, and yet his being so tired feels more like his spirits are dropping to me.  Part of it is that I'm trying to come up with activities to make his days fun, and it's so hard.

Video games are something he loves, but I have to find ones that only require he use his right hand, because his left hand doesn't work and only frustrates him when he tries to use it.

Walking is difficult for him, and while I know we need to be getting him up and moving around, he's already SO tired, and I don't want to tucker him out more.

It's making me crazy.  I just don't know what to DO.  He's on a kick of "coloring" right now.  He loves coloring big doodle-art style posters, especially ones that have a Celtic theme.  Finding ones small enough that he can sit on the sofa to do is hard though.  He has nearly finished two posters just since last Saturday!  It relaxes him though, so I'm not going to complain.

I placed a call today to a social worker at CNMC asking about the possibility of getting a handicap sticker for the car.  Keeghan loves going to all of the museums downtown, but parking is a nightmare, and the Metro is out of the question.  When it is really hot, parking half a mile from a museum is just too far, even with using the wheelchair.  It's not so bad when Mike can go with us because he can drop us off in front of the building, but I don't want to be limited to only taking the kids places on weekends.  We'll see what the social worker can tell me I guess.

Like I said, my mind is very random today.  I want to do more for Keeghan than just walking him around the house though, you know?  He needs some FUN.

Ok, I need to go do something useful . . . hope everyone is well.

Shannon

7 August 2008
Count to ten . . . let it go, Shannon . . . let it GO . . .

I keep repeating this in my head, but it's not working very well.

I haven't mentioned it here, but I filed an official complaint with the IG (Inspector General) here on base about how our emergency call was handled the night of Keeghan's seizures.  I haven't discussed it here because, honestly, I pretty much knew my complaint would get blown off.  I hoped I was wrong, but I now know I was right.  Once again, the Air Force has come through - with a major case of CYA.

No offense to all of you out there reading this that are military medical types - I don't mean to offend you personally.  Please understand that I am venting.

Mike attended a casual meeting this week hosted by the Squadron Commander in charge of EMS services here on base.  Our experience was primarily what prompted the meeting in the first place.  I did not attend for two reasons: 1) one of us needed to be home with Keeghan, and 2) I felt that Mike could be more civil than I could (I was right).  Mike came home feeling like he'd been blown off.  This guy made comments like, "You may not like the answer, even if it's right."  From what I've heard, "condescending" would be the best word to describe his attitude toward Mike.  There are other things that were said - by him and people close to him - that I am just trying to chalk up as a "consider the source" kind of thing.  I figure it is usually the ones trying to cover up their own inadequacies that come across as the most superior, and that is his own cross to bear.

So today I received the response to my official complaint, along with a letter from the Med Group commander.   The commander's letter stated that, because there was a PA (my friend, Pam) on site, she was the "medical authority."  I think this is CRAP, because when the EMT's first showed up, they didn't know she was a PA.  It wasn't until the Air Force medic suggested putting Keeghan in an ambulance without a paramedic (while he was still seizing), that Pam pointed out she was a PA and said we should wait for the paramedics.  Of course, this was when we still thought that the paramedics would be able to give him something to stop the seizures.

The letter also stated that the EMT's obtained vital signs and made patient observations that were shared with the CNMC emergency room physicians.

"Made observations" = did NOTHING.

And they never took vital signs on him at all.

But still, it was a good thing we did have Pam there to help us.  I just can't believe the IG and the Med Group have used her presence there - as our FRIEND - to cover themselves.  I seriously have to worry for those people on base who don't have a friend who is a medical professional living just down the street.

The one positive thing that came from all of this:  (quote) "the Naval District of Washington Operations Center was able to identify and fix a problem with their dispatch office.  New houses were built on the base yet the dispatcher's map was not updated."

We've lived in this house since July 19, 2006, and it took something like this happening to get them to update their maps.  Considering it is an AIR FORCE base, wouldn't it have been the AIR FORCE's responsibility to make sure the dispatch center covering emergencies on their base was informed of the new housing?

Ladies and Gentleman, a round of applause to the Air Force once again for managing to pass the blame and come out smelling like a rose!

Do I sound bitter?  Yes?  I might not be so much so if, at any point during any of this, someone from this base had bothered to ask, "So how is Keeghan now?"  My priority from the beginning has been the welfare of my child.  My perception is that the priority of everyone else involved in this has been their own egos and careers.

It's shameful.

Just so everyone knows - Keeghan is doing well.  A couple of the side effects of the new drug - fatigue and high blood pressure - are starting to show up, so he's feeling a little run down.  He started medication for the blood pressure today though, and the doctor thinks the fatigue will go away over time.  The clinic called just a few minutes ago to tell me that the lab results today showed protein in his urine, so now we have to do a 24-hour urine collection.  Keeghan's going to LOVE that!  I haven't told him yet because, since we got home from the clinic an hour and a half ago, he's been crashed out on the couch sleeping.  Hopefully there is nothing to worry about with that though.

I will try to be more positive in future posts.  Coming home from a morning at the clinic to this IG complaint stuff just set me off.  It's over now and hopefully I won't ever have to rely on this base to provide emergency care for anyone in my family again.

S.

4 August 2008
It's Monday morning, Mike is at work, the kids are asleep, I'm at the computer with a cup of tea . . . . it almost feels like a normal day.  But we don't have normal days anymore, do we?  It sure hasn't felt that way for a while now.   I think I'm in denial.  I think maybe I'm afraid that the way our days are now IS normal, and I'm just not willing to admit it yet.

Keeghan requires assistance with most of his daily activities right now, to include walking back and forth the the bathroom, up- and downstairs, getting dressed, bathed, etc.  I know it has to be driving him crazy.  The few things he can do without help he is fiercely holding onto - feeding himself, coloring his art posters, controlling the remote for the tv!  We decided that today he is going to walk everywhere without holding onto someone.  Of course, one of us will be close by in case he stumbles, but he needs to start trying to walk on his own.  He was cool with that.

We had a pretty laid back weekend, which was nice.  On Saturday we went to our favorite Asian food restaurant in Alexandria, then went to Michaels to buy art posters for Keeghan to color, and a new canvas and paints for Maxx.  I had money that my parents had sent for my birthday, so I had ulterior motives in spending it on the kids - I get to hang all of their creations on my wall!

Yesterday, my actual birthday, started off with Maxx and I taking a trip to Barnes & Noble to buy a new book we've both been waiting for.  We brought Keeghan's favorite coffee drink home for him - I know, awwwwwww, right?  The rest of the day was spent playing games (each of my children beat me at Disney Scene It!), watching movies, and just general relaxing.

Maxx made my birthday cake.  She cracks me up sometimes . . . she's such an artist!  Instead of asking me what flavor of cake is my favorite, she asked me what colors were my favorite!  So here is what I got:  a lime green cake with pink icing.  There was a layer of boysenberry jam in between the cake layers, crushed butterfingers (her idea) around the outside of the cake and shaved Godiva chocolate on top!  It was gorgeous!  I told her we should call it the PBJ cake because it tasted almost like a peanut butter and jelly sandwich!  It was wonderful (and seriously sugar coma-inducing).

So that was our weekend.  So far, Keeghan has taken four doses of AZD (the new  drug we waited so long, and so anxiously, to get him on) and is doing just fine with it.  We're having a little issue with his blood pressure.  Because high blood pressure is a side effect of AZD, we have to take his BP twice a day.  The hospital gave us a BP machine to use on him, but we don't think it is working very well.  We can take his BP one minute and it is 126/88 and then take it again a couple minutes later and it is 151/110.  It's crazy.  The problem is that the doctors want us to call them if it goes over 125/82.  That's not very high really.  But I don't want Keeghan getting put on hypertension medication yet if it's the BP machine that's messed up and not his actual BP.  Hopefully we'll get that straightened out today.

Keeghan started a new anti-seizure medication on Friday for the focal seizures he was having (this means he's now on two different anti-seizure drugs at the same time).  We couldn't get to the pharmacy early Friday to get the prescription filled, so we had planned on starting him on it on Saturday morning.  But he had three focal seizures on Thursday, and another three Friday afternoon, so we decided to start him on it Friday evening.  Since he started on the Keppra he has had NO focal seizures AT ALL (knock on wood).  That made for a really nice weekend for him.

So maybe we are finding our new normal - finally!  Just knowing that he's on something to fight this tumor makes me feel better, although I do still have worries about it being an experimental drug.  But I guess all drugs were experimental at one time, and he's certainly not the very first one ever to take AZD.  At least we now know something is in there fighting this hideous monster again.

Thank you to everyone out there praying!

Shannon

31 July 2008
Because I know everyone wants to know, I wanted to put a quick update on the website about today.  Keeghan DID make counts today - barely.  His platelets were right at 75,000.  So he did get enrolled in the study, and has started on the new drug, which is called AZD2171.  It was a very long day though.  We were at the hospital from 9:00am until 4:30pm, so we are all tired.

For me, the reality that we started our son on a completely experimental drug today has me pretty messed up in the head.  There's no other way for me to say it.  The fact that we have hit the point where we are trying experimental drugs has me floored.  I stopped and checked the mail on my way to the commissary this evening and, after getting back in the car down the street by the mail box, I just fell apart.  For about an hour I couldn't stop crying.

Because Keeghan is sitting a few feet away from me, and I don't want to upset or scare him, I can't type much more than that right now.  I'm not dealing with all this very well right now though.

One other thing - the doctors think Keeghan's little "episodes" are in fact seizures.  The neurologist called them "focal seizures."  Because his Dilantin levels are good, the dose on that medication can't be increased.  Instead, the prescribed yet another anti-seizure medication that he will start tomorrow.  Hopefully that will stop it all.

More later.

S.

30 July 2008
Tomorrow is the Big Day - Act 2.  Hopefully Keeghan will make counts and start the new drug that the doctors want him to start.  We've been trying to keep his spirits up for the past two days, and I think we've done well at that.  Last night I took him out for dinner with his best friend Ryan, and Ryan's mom (my good friend) Pam.  After that we went to Barnes & Noble; Keeghan had a gift card that was burning a hole in his pocket to spend!

Today we spent playing games (bought with said gift card), and just chilling out.  He totally defeated me at Disney Scene It - TWICE!  This afternoon worried Mike and I a bit though.  We think that Keeghan might still be having mild seizures, even though he's on anti-seizure medicine.  Every once in a while he gets this tickle in his nose that he says feels like a sneeze coming on, but he doesn't sneeze.  Also, he says when he gets the tickle he gets a strange smell in his nose that immediately makes him feel nauseated.  This is usually followed by uncontrollable shivering (although he says he only feels "a little" cold), goose bumps, and then vomiting.  These episodes last anywhere from 5-10 minutes.  He can communicate with us during them, but his speech is somewhat slurred, and his entire body tenses up.  Keeghan gets really scared, and I have to tell you, so do Mike and I.  Today was the first time he's had two episodes in one day, and they were only two about two hours apart.

I emailed the nurse practitioner at the hospital about them, so hopefully the doctors will have some insight as to what is going on.  Keeghan had one of these episodes while we were at the hospital on Monday also.  It's really got me freaked.

Anyway, that's all for now.  Tomorrow we pray he makes that magical 75,000 platelet count and gets started on the new drug, which we hope is "THE" drug to beat this.

S.

28 July 2008
Keeghan did not make counts today.  But he was SO close!  His platelets needed to be at 75,000 and they were at 74,000.  Can you believe that?  It was disappointing, but it's ok.  We will go back on Thursday and he is certain to make counts that day.  His ANC needed to be at a minimum of 1,000 and it was at 1,500, so he was good on that.

So, for the next three days we wait, and keep thinking positive that he will be able to start the new drug on Thursday.

One good thing we found out today is that his port is back to working.  Yay.  Of course, that was a small victory.  Right now, Keeghan really needs a big victory.

More later.

S.

27 July 2008
How do you teach a 12-year-old to have no fear?

If there is one aspect of our relationship with our children that Mike and I have always been happiest about, it is that they talk to us about everything.  And I mean really talk to us.

Maxx (as she came off the bus from camp on Friday):  Mom!  I went to the dance with a boy last night.
Me:  Oh yeah?
Maxx:  Yeah, and I think we might be dating now.
Me:  Okaaaaaay . . . so where does this boy live?
Maxx:  Oh, I don't know, but I think it is pretty far away.  We're going to text each other a lot and then see each other again next year at camp.
Me:  Hey, I like him already!

Keeghan has always been a serious talker.  When he was little, a car ride to the commissary and back was exhausting because he never stopped talking, and yet he didn't speak nonsense like a lot of pre-schoolers.  He would listen to the words to a song on the radio and then give you this big story about what he thought the song was about.  Bohemian Rhapsody was my favorite.

Keeghan:  There was this boy, and he had a gun, and guns are BAD, so he said sorry to his mom, but his mom must have still been mad at him because he ran away . . .

It would go on like that for at least five minutes, with him telling you in very fine detail what the song was about.  It was awesome!

Anyway, my point to all of this is that Keeghan doesn't talk as much anymore.  It scares me, because he's never been one to think too much without also telling you what he's thinking about.  One night after he got home from the hospital this week, I asked him if something was bothering him and he said he was scared.  When Mike and I asked what he was scared of, he couldn't put it into words.

Couldn't.  Or wouldn't.

Again, it scared me.

So, last night we noticed he was being really quiet again and decided that it was time he got up and did something.  We've been hovering over him since he got out of the hospital, trying to make sure he doesn't do anything too strenuous, and that he doesn't stumble and fall since he's still pretty unstable.  It has to be driving the poor kid crazy by now!  So we took him for a walk.  It was about 9:15pm, so it was dark outside and not so hot.  He has to hold onto my arm to walk, but that was fine with me.  Mike even put the dog on her leash and took her with us.  As we were walking, I asked Keeghan a question that had been on my mind for a while.

Me:  What is the one thing in the world that you are afraid of more than anything Keeghan?
Keeghan (thinks about it for a minute):  Tomorrow.
Me:  Do you mean tomorrow specifically?  Or just all tomorrows?
Keeghan:  All tomorrows.

Wow.  That's a lot to fear, isn't it?  He said that he fears tomorrow, because he never knows what is coming at him next.  How do I respond to that?  As we continued to walk, Mike and I talked to him about how he needs to stop worrying about what is coming next, and to start making plans for things to look forward to.  We also talked to him about how he needs to go back to his old ways of making the doctors explain everything to him.  In the past few months he has sort of sat back and let Mike and I do the talking and make the decisions for him.  He needs to take some of that back and be the nosy little kid he was when he was first diagnosed.  He needs to be the fighter that he was back then.  He tells us that he is still fighting, and that he's not giving up, but I worry that maybe he has a little.

For our parts, we also need to start planning more activities for him that have nothing to do with cancer.  We haven't been downtown to the museums in months.  A lot of that is because it is too hot, which makes his nosebleeds happen more frequently, but I'm sure we could come up with other stuff to do.  He needs FUN.

After we got home from our walk, I asked him if he ever just wanted to hit someone when he got frustrated with all this cancer stuff.  He said, "No - I want to break things."  Mike says, "Hang on a second!" and goes to the kitchen and gets an old plate.  "Come on buddy."

So we take Keeghan across the street (there are no houses across from us, just an open field) and Mike hands the plate to Keeghan.  "Give it your best throw!"

Keeghan was standing in the street, a few feet away from the curb.  He reared back with that plate and threw it straight at the sidewalk.  It was a perfect shot!  (Don't worry, we cleaned up the broken bits).

The look on Keeghan's face afterward was more bemused than anything.  I truly think he thought his parents had lost their minds!  Then Mike looks down the street and says, "Sorry."

Ha!  Apparently a couple of our neighbors from down the street were walking their two little dogs on the side of the street where Keeghan smashed the plate!  They crossed back over to the side where the houses are to go around us (probably thinking, like Keeghan, that we'd lost our minds).  As they got closer I said, "Sorry, we were having a little lesson in anger management."  I then started walking Keeghan across the street.  As they saw him holding onto me, walking unsteadily, (and just by coincidence, he had a shirt on that said "Make A Wish" on the front), their attitudes seemed to change a little.  I think they then understood what we were doing and didn't just think we were strange!

I don't know if all that really helped Keeghan at all, but even if it just made him think of something other than "tomorrow" for a little bit it was worth it.  I know one thing that did give him a good laugh though.  Maxx hadn't wanted to go for a walk with us, but when she heard about the smashed plate she wanted to smash one too.  Keeghan and I were on the couch in the living room already, so Mike grabbed a plate and took her outside.  We heard her plate smash and started clapping, but when Mike and Maxx came in the house they were in fits laughing.  It turns out the first time she threw her plate, it BOUNCED and didn't break at all!  Only Maxx could do that!  So she had to throw it a second time!  Keeghan got a good giggle out of that.

It's time for me to go wake Keeghan up now.  As I write this, I can only hope that today will be a "tomorrow" that he didn't have to fear.

S.

23 July 2008
Ah, it's good to be home!  I know that, from my standpoint at least, being in my own bed was glorious last night!  Considering the fact that Keeghan slept from 11:30pm until 1:30pm this afternoon, I'd say he slept well also!

Being home allows for more time to think about the events of the past three days.  I had a little breakdown last night after Keeghan was tucked into bed.  I was telling Mike about how there are images that I don't think I will ever be able to wipe from my memory.

When Keeghan's first seizure started, and his face started twitching . . . the wide-eyed look of fear in his eyes.
Coming down the stairs ahead of the paramedics to find Maxx standing in the living room - alone - sobbing.  We hugged so tightly.  I told her repeatedly how much I loved her, and I promised her I would make sure that Keeghan got the best possible care.  And then I had to turn around and walk away from her . . .
Keeghan's face in the ER.  His eyes were fixed in his head, so I didn't know if he could really see me or not.  I remember watching the nurses starting IV's on him and accessing his port and thinking to myself, "He's never been stuck with a needle without me holding his hand."  He told me later that he tried reaching for me when all of that was happening, but I couldn't see his hand.
Maxx coming into the PICU to see Keeghan before leaving for camp Sunday morning.  We hadn't been able to get him to do anything more than mumble single syllables up to that point.  Maxx, however, was able to get him to smile.  As soon as he did, she just put her head down on the bed rail and cried.  According to Mike, she spoke of nothing else all the way to Bethesda to catch her bus to camp.

There are so many images and memories . . . they will forever haunt me.  Being able to look over at the sofa and see Keeghan sitting there, reading his book, definitely helps chase away those thoughts though.  I'll be even more happy when I get my other baby home on Friday.  In a way, I feel as though I were ripped away from her, and even though I got to see her at the hospital before she left, it just wasn't the same.  I need to hold her, reassure her.

Keeghan has an appointment with his doctors at Children's tomorrow, and then a PET scan at Georgetown University tomorrow afternoon.  After that, he is free and clear until Monday when (hopefully) he will be starting the next treatment to beat this tumor.  He needs his platelet count to be up to 75,000 by Monday, so that is what we'll be praying for.

Much love and appreciation to everyone out there - family, old friends, new friends, and even all of our wonderful "virtual" friends - for the Guestbook posts, emails, phone calls, and especially the prayers.

S.

22 July 2008
Let me see if (this time) I can actually type a short post!

Long story short - Keeghan was moved from the PICU to the Neurology Ward around 9:00pm on Monday evening.  Today the original plan was that he would be discharged.  His anti-seizure levels were stable, so there was really no reason to keep him in the hospital.

Then he got a nosebleed.

We started dealing with the nosebleed like we always do, but the poor 8-months-pregnant nurse that we had FUH-REAKED!  At one point, the tech assigned to our room today was in the room and Keeghan started spitting up a big blood clot (gross, I know, but telling you that really does pertain to the story).  The next thing I know, our nurse is running as fast as she can into the room.  I'm calmly sitting on the bed pinching Keeghan's nose still.

"He's spitting up blood?"

"Ummm . . . no.  Just a blood clot.  It happens all the time with his nosebleeds."

She almost fainted!  But because of the nosebleed, the on-call hem/onc doctor ordered new labs and decided that Keeghan should get a platelet transfusion.   Normally his counts would not have warranted one (his platelet count was at 37; he usually would only get a transfusion if his count was below 20).  But because of the bleeding, the doctor ordered it anyway.

Then - yes, there is another THEN - his port stopped working.  The nurses could access it, but they couldn't draw blood out of it, nor could they get it to flush.  They tried accessing him three times (imagine three times of getting stuck with a 1" long, 20 gauge needle and you'll understand that this was a pretty big deal to him).  So now the poor little guy had to get a chest x-ray to see if the port had flipped over or somehow moved.  It hasn't.  So I don't know what they're going to do about that . . . but we'll worry about that when we need to.

The reason we don't need to worry about it is that, after all of that today, they discharged him!  They sent him home at 10:00pm, all because the hem/onc resident said "there's no justifiable reason insurance-wise to keep him overnight."  How about, "let's keep him overnight because it's already late and he needs a decent night's sleep?"  But no, that wasn't important.

Don't get me wrong - I'm glad to be home.  But it somehow seems wrong to discharge a kid whose had such a long day, and who is already asleep, at ten o'clock at night.  But what do I know.

There is more to type about all of this, and what is to come, but it is 11:15pm and I am tired.  I still have more to address about the shoddy emergency medical service on this base, as well as new treatment possibilities for Keeghan, but my mind is a jumble right now so I'll save those to write about when my mind is more clear.

As always - thank you for the prayers.  I'm always impressed at how many people are following our story.  It's humbling, and oh so encouraging, to know the amount of prayers being lifted up for our family.  Thank you just doesn't seem like enough to say.

Goodnight.  All typos in this entry will be corrected at a later date . . .

S.

21 July 2008
I was going to try to type up this whole story, but just don't have time (or better yet, don't want to spend too much time away from Keeghan right now). So I'll try to sum up what is going.

Keeghan suffered four major seizures late Saturday night. He had vomited just after going to bed around 11:00pm, causing Mike and I some concern, so we put him in bed with me and Mike slept in Keeghan's room. Around 12:40am he woke me up saying he needed to use the bathroom. As I helped him back into bed, his face started twitching on one side. I yelled for Mike, and then went downstairs to call the on-call doctor. By the time I got back upstairs, Keeghan was having a full-on seizure, no longer limited to just a face twitch. I told the doctor to let the ER at Children's know we were coming, hung up and called an ambulance. I then called my friend Pam down the street since she is a PA.

It would take me an hour to type up a description of the emergency experience. It was not pleasant. I had to spell the name of my street 3 times (it's "Chandler" - not exactly difficult) for the operator/dispatcher who answered the phone. He then made some comment to the effect that he didn't know where that was, or that it wasn't in the system.

Just to explain - we live in a "new" neighborhood here on Bolling AFB. I put the word new in quotes because, as of tomorrow, we will have lived in this "new" house for two years. But we are the only people to ever have lived in this house as it was a new development when we arrived here. Even though we've lived here for two years now, our address still does not appear in on Mapquest or Google Maps, nor is it recognized by any GPS systems.

That said, it took emergency services at least 15 minutes to get to my house (after telling me on the phone they'd be there in five minutes). I believe they were coming from the Fire Department on base; if that is true, I could have WALKED it faster than that considering the fire station is about ½ mile from my house.

This crew that arrived brought a "stair chair" upstairs to get Keeghan downstairs. This might have worked for someone NOT IN THE MIDDLE OF HAVING A SEIZURE. One of the DC Paramedics asked the airman for a certain type of stretcher that can be used to take a patient down stairs. The Airman (yes, I meant to capitalize that) looked at the paramedic like she had NO idea what he was talking about. This same airman, before the paramedics arrived, wanted to put Keeghan in the ambulance without an EMT at all, and while he was in the throes of another seizure.

Um . . . WHAT?

In the end the paramedics ended up rolling Keeghan up in the sheet from my bed and carrying him down the stairs in it so that they could get him onto a gurney.  Lovely, eh?

Then . . . THEN . . . as we were taking him out to the ambulance, I heard someone ask, "Does anyone know how to get to Children's Hospital?" Two cop cars, two full-on ladder fire trucks, and two ambulances, and NO ONE knows how to get to CHILDREN'S NATIONAL MEDICAL CENTER????

Again, . . . . WHAT?

Luckily someone DID know how to get to the hospital and jumped in the front of the ambulance with the driver.

Seriously. NOT a good experience.  To top it all off, DC ambulances do not carry any type of anti-seizure medication, so Keeghan continued to seize all the way to the hospital.

Anyway . . . like I said, I could go on forever on how horrible the whole experience of seeing Keeghan that way and then dealing with idiot emergency services was. Maxx had to witness Keeghan having a seizure and vomiting. She was sobbing and saying she was afraid. After the seizure, Keeghan turned his head toward her (we were still on my bed, with Pam and I holding onto Keeghan; Maxx was on the bed behind Pam), and he said, "Sorry." It was one of the few words he said between seizures, and it tore me up. Even with everything he was going through, he was worried about upsetting his sister.

We arrived at the ER at Children's around 1:45am (I think). It took two doses of Ativan to get Keeghan's seizures to stop. During that time I had no idea if he could see me or hear me, and I couldn't get near the bed because there were so many people around it. So I just made sure I was within his line of sight and kept telling him I was there and that I loved him.

He was moved to the Pediatric Intensive Care Unit ( PICU) around 5:45am, and we are still there now. He spent most of Sunday sleeping; the anti-seizure medicine he'd been given in the ER, and again here in the PICU, kept him somewhat sedated. He's now on a different anti-seizure medicine that doesn't sedate him, but his little body is still recovering from the effect of four major seizures. He is awake for a few minutes at a time and then the exhaustion hits and he has to rest for a while. He's taking in fluids on his own and has tried eating some chicken noodle soup (which didn't stay down), and some jello (which, so far, has). The doctors are talking about moving him out of the PICU and to a regular ward (either the Hem/Onc Ward or the Neurology Ward) this afternoon.

Maxx is off at camp now. She was scheduled to leave for camp on Sunday, and even with everything we went through Saturday night, we all thought it was a good idea for her to go ahead and go. This is the same camp she attended last year, specifically for siblings of kids with cancer, so she is at least around other kids that know and understand what she is going through. She needed this camp - especially now. We are in contact with the counselors there, and they know what happened with Keeghan, so she has an incredible support system surrounding her. I think that is better for her than being here at the hospital all day every day would be.

I've already typed more than I thought I would! I will try to update at least a little bit daily so that everyone will know what is going on. Thank you to everyone who has already offered prayers and positive energy - we need it. Keeghan was tired of all this BEFORE this happened. I am hoping for guidance for these doctors, that they can find the right treatment for my baby, so he doesn't have to go through this nightmare again. He told us today that he remembers everything. I cannot imagine the fear that he must have felt, but was unable to communicate.

Ok, before I start to fall apart, I'm going to sign off. Love to all.

Shannon

17 July 2008
The news on the MRI is not great.  The tumor is still growing.

Keeghan did not receive chemo today.  Instead he is going to be starting a whole new chemotherapy drug called Pemetrexed, but he can't start it until at least three weeks after his last Temodar dose.  Since that was on July 7th, he can't start the Pemetrexed until the 28th.

Obviously this isn't the news we were hoping for.  But, in a way (and I know this will sound weird), it's almost a relief to know the MRI results.  At 11:30 last night I was in tears, completely freaking out about today.  The waiting for news was killing me.  So while this news isn't what we wanted, we at least now have a plan on what is going to happen next and can start planning.

Keeghan took the news in the way that Keeghan always takes bad news . . . he was very quiet and just leaned into me.  I asked him what he was thinking, and got the same answer as always:

"I just want to be done with all this."

Dr. MacDonald asked him if he meant done with today, or done with treatment completely.  Keeghan said, "Done with treatment completely."

He says he's still fighting, but understandably he's tired as well.  We have to go back to the clinic next week to sign new consent forms for the new treatment plan, and for Keeghan to have labs drawn and get his antibiotic treatment.  We will go back on Monday, the 28th, for him to get his first Pemetrexed dose.  One nice thing about this drug is that it is only a 10-minute infusion, so chemo days will be much shorter.  We asked about side effects, and they don't sound much different from other chemo drugs he's already taken.

So . . . once again, we start a new leg of the journey.  My heart absolutely breaks for my brave little boy.  He has had to face so much more than most people face in a (much longer) lifetime, yet he continues to do it with courage and confidence.  Maxx is equally brave, and so supportive of her brother.

As always, they are my heroes.

Thank you to everyone for the kind messages in the Guestbook, and for all of your emails and phone calls.  We appreciate the support and welcome all of your prayers and best wishes.  We continue to believe that Keeghan can beat this.  Dr. MacDonald said something to Keeghan today that I am holding onto.  He said, "Don't give up on us; we're not giving up on you."  I truly believe he meant it, and I have to believe that they really can beat this tumor.

Anything else is unacceptable.

S.

16 July 2008
Just a quick update for everyone out there praying for a good outcome on Keeghan's MRI.  We will not get the results until tomorrow.  It's making me crazy because the radiologist "saw something" that he didn't like/understand/etc. during the brain MRI yesterday, so he decided to order a spine MRI as well.  That has me terrified, but I'm trying to take one day at a time.  I promise I will update tomorrow when we get home from the hospital.

Today was a good day.  Keeghan had PT and OT, and both went extremely well.  His spirits were high, which probably had something to do with the fact that his nose hasn't bled at all today (knock on wood).  It was nice to see him smiling and cracking jokes.  He's been pretty bummed out for the past couple of weeks, so seeing "Normal Keeghan" was great.

One funny thing about PT and OT is that both therapists are using this tape called Kinesio Tex tape on him.  His physical therapist is taping up his left foot in order to help with his foot drop.  The occupational therapist taped his wrist to keep him from folding his hand up.  Keeghan says he thinks they're trying to mummify him!  All I can say is this stuff better be doing its job because, at $11 per roll (which I had to pay on EBAY of all places to get the stuff), it's some costly mummification!

Ok, I'm off to chill out with the kids.  Like I said, I promise to update tomorrow evening!

S.

13 July 2008
We are home again.

(insert sad tone of voice here)

It's amazing how the years between visits to California drag, but the time we are there flies.  I guess that is true for most vacations.  It was a bittersweet visit in many ways.  Visiting my mom in a convalescent hospital instead of seeing her at home was hard on all of us (as well as on her I'm sure).  Keeghan had major nosebleeds every single day we were there.

Every. Single. Day!

He was really getting bummed out about it.  He felt like he was ruining everyone's vacation, but he wasn't.  The heat, combined with the dry air and the smoke from all the wildfires was just more than his nose could handle.  We went out there to hang with the cousins, aunt & uncle, and grandparents for a week, and we did that.  We tried to take the kids to get a professional picture taken one afternoon but had to cancel because we couldn't get Keeghan's nose to stop bleeding.  In the end, we took a ton of pictures of the kids back at the house that were probably more fun anyway.

The week with the cousins is exactly what the kids needed I think.  It was cute how Maxx and her cousin Tayler (who is 4.5 months older than her) immediately fell into hanging out like long-lost sisters within minutes of our arrival.  It was a little bit more awkward with Keeghan and Nolan and Kruse, but not for long.  By the end of our first evening there, we were all hanging out like it was something we did every weekend.  Everyone helped Keeghan when he needed it, but without making it obvious that they were helping him.

Example:  One day, after spending probably three hours getting Keeghan's nose to stop bleeding, he wanted to go out and play in the pool.  I told him that he could, but that I didn't want him over-exerting himself and causing his nose to start up again.  So Aunt Susan and Nolan went out back with him and helped get him on a floating raft.  They have a basketball hoop at one end of the pool, and Keeghan loved shooting hoops, so once they got him on the raft, they walked around the edges of the pool and grabbed balls to toss to Keeghan so that he could shoot hoops.  

Everyone went out of their way - including the kids - to make sure Keeghan had fun,  but they also made sure that he didn't feel "different" from everyone else.  That alone had me shedding a few extra tears throughout the week (kind of like I'm doing now as I remember it all).

One of the most touching moments of the week came the morning after we arrived.  I wrote a few days ago about going to watch my nephew Nolan play baseball.  Brad was one of the team's coaches.  After the game, Brad had the whole team sitting together and he brought Keeghan out to introduce him to the team.  Essentially what Brad wanted to do was point out to these young men that even when you think you're having a bad day, you need to understand that there are others going through worse stuff and that your "bad day" really isn't all that bad.  But as soon as Brad started talking, he broke down.

I am 41-years-old.  My brother is 43.  I don't think I've seen him cry in at least, oh, 30 years.  So of course, as soon as he broke down, Mike and I did the same!

What was really cute though was that Keeghan put his arm around Brad and started patting him on the back!  Maxx went to Brad's other side and did the same.  It's crazy when the kids are the ones holding up the adults, isn't it?  Nolan's team gave Keeghan the game ball that day.  A few days later, when the team played again, we got all the players to sign it for him.  It is now prominently displayed on his dresser upstairs, with two very important signatures - "Nolan" and "Uncle Brad" - right where he can see them.

The rest of the week was filled in with the daily fun of hanging out with my family.  When I was younger, I always imagined myself someday being "The Cool Aunt" to Brad's kids, so it upsets me that I only get to see them once every few years.  But I try to make up for it when I'm there.  I played video games for hours with the boys.  In fact, I owe them a huge (sarcastic) thanks for getting Keeghan and I hooked on a Scene It game for the Xbox 360, since we don't even have an Xbox 360!  Good going guys!

(kidding, love you both!)

We all sang karaoke, the kids played Rock Band, Brad and I played lots of music . . . life was good.

(more pictures can be found on the 2008 Pictures link to the left)

All things considered, it was a great week.  Mike and I love being able to spend time with Brad and Susan.  We're lucky in that we all get along very well - I value that more than I've ever probably told them.  I know that there are a lot of friends that might be upset that we didn't try to get in touch with them during the week, but I hope they will all understand that this visit was all about seeing family.  There was no way I could justify dragging Keeghan all over the place to see people when what he really needed to be doing was relaxing.

The trip back to DC was uneventful.  Just long.  We arrived back in DC at about 1:15am Saturday morning.  We had wonderful friends pick us up at the airport (anyone willing to get up in the middle of the night to come to an airport is beyond wonderful in my book!).  We got back to the house around 2:00am, but then had to deal with one seriously excited dog, so the kids didn't get to bed until about 2:45; Mike and I got to bed around 3:30.  Mike, Maxx and I were up by noon yesterday, but Keeghan slept until 1:45pm!  We are definitely still on California time.  We all went to bed around 1:00am last night (or this morning, as it were); it is 11:50am now and everyone is up except Keeghan.  It's going to take us a few days to get back on our own time I think.  

One bonus to being home is that Keeghan's nose hasn't bled since we got back.  Of course, I've run his humidifier over his bed for the past two nights, and I don't think he stepped out of the house once yesterday.  That's probably had a lot to do with it!  Mike goes back to work tomorrow, so today will likely be another chill day.  Then Tuesday brings reality home with a crash again.  Keeghan has his next MRI Tuesday afternoon.  If the new pill he's taking (Tarceva) is working and showing some effect on the tumor, then Keeghan will continue on with the same chemo drugs he's been getting.  If there is no change, or if the tumor still appears to be growing, then the doctors are going to change everything by Thursday (Keeghan's next chemo day).  

Yeah . . . we'll all be stressing this week.

But for now, we're going to enjoy the day and revel in the fun memories from the past week.  Day by day, cell by cell.  That's how we live, and how we fight.

S.

6 July 2008
It is Sunday morning, 6:00am, and here I am awake at the computer.  Jet lag is a killer!  My body is saying, "Um hellooooooooo?  It's 9:00am, GET UP!"  The rest of the house is asleep, so the quiet is nice.  Let me see if I can get everyone caught up on our trip so far.

July 4th - Travel day

As travel days go, this one wasn't too bad.  Our wonderful neighbor, Cyndi, gave us a ride to the airport (bless her for actually getting up at 6:00am on a holiday!).  I had requested a wheelchair for Keeghan just so that we didn't have to worry about wearing him out if we had to rush through the airport.  We didn't have to rush anywhere, but he got to ride in style anyways.

"All I need now is a pair of sunglasses."
                        ~ Keeghan, as I wheeled him through the airport in DC.

The flight from DC to Dallas was fairly empty, so we were able to move from our seats at the very back of the plane up to the front.  Since we only had an hour layover in Dallas, this was a blessing.  There was a shuttle waiting just outside the gate to take us from one gate to the other, which saved so much time we actually got to eat lunch before getting on our connecting flight.  For those of you that haven't flown lately, that's a great thing since you can't even BUY a meal on most domestic flights anymore.  We were thinking we'd be grabbing fast food and having to carry it on the plane to eat.

Unfortunately, our flight from Dallas to Oakland, CA was not quite so empty.  This time we really did have to sit in the very last row of the plane.  Right next to the jet engine, which Mike never missed an opportunity to point out.  I can't tell you how disconcerting it is to not be able to see anything out your window . . . no land, no sky . . . just an engine (that, by the way, looked like it had spackle on it).  And loud.  Holy cow was it loud!  Since we were at the back of the plane, we were right by the bathrooms.  At one point, a woman was standing near our seats waiting for a bathroom to open up, and she said, "Wow, it's really loud back here!" and Mike replied with, "Yeah, you want to know why?  Because there's a JET ENGINE right outside!"  He then opened his window shade to show her.  He was being full-on Michael sarcastic, but I don't think she got that.  I thought it was funny though.

But, other than that, the flight went well.  I called my brother, Brad, just as we came off the plane in Oakland.  He was trying to find a parking place, so the timing was perfect.  We met up with him in the baggage claim area.

On the way to Brad's house, we stopped to visit my dad for a bit, and then went to see my mom at the convalescent hospital.  It's always fun to see the grandparents - especially when you haven't seen them in so long - but it was bittersweet as well.  I could see it on Keeghan's face that he didn't like seeing Grandma in any kind of hospital.  It sounds crazy, but I honestly believe that he thinks it's HIS job, and only his job, to do the hospital thing.  He's taking care of that aspect of life so no one else has to.  Odd.

When we finally arrived at Brad's house, it was about 4:30pm I think local time; 8:30pm our time.  Needless to say, we were tired.  But it was the 4th of July and there was food to be grilled and fireworks to be set off!  So we probably stayed up until at least 2:00am our time that night, but it was tons of fun and definitely worth it.

One of the things I love the most about coming out here is the way the kids all seem to fall back into being around each other as though they see each other all the time.  It's seemless.  That's the way family should be, I know, but it's still such a nice surprise when you see it happening.

On Saturday we went to watch my nephew Nolan play baseball.  I grew up on baseball, going to my first game to "watch" my dad play fastpitch softball, when I was only 6 days old (or so goes the story that my mom has told me my entire life).  Brad played baseball throughout his childhood, and then through college.  Seriously, I love baseball.  But I haven't been able to go watch a game in years; probably not since the last time I was in California.  Nolan's team played extremely well, winning the game 11-1.  It blows my mind how talented these young 12 to 13-year-olds are!

We took all the kids to see Grandma in the afternoon, and then to the mall.  I'm not near the shopper that I used to be as a kid, so the afternoon spent walking around the mall was exhausting for me.  But the kids had a good time.  I think we might have walked Keeghan a little too much though.  Just as we got on the road to head home, he got a nosebleed.  I think it was a combination of all the walking, and then the car being blistering hot when we got into it, that caused it.  We got it stopped though an hour or so after we got home, so he was still able to hit the pool for a while later in the day.

Speaking of the pool . . . Keeghan was quite spoiled when he finally did get into the water.  We told him not to overdo it because we didn't want his nose to start bleeding again.  So, with Aunt Susan and Nolan's help, he got onto a floating mattress where they then proceeded to toss him balls so that he could shoot hoops from the mattress!  Talk about living the life of luxury!  It was very sweet how they made sure he was having fun while also making sure he didn't over-exert himself.

One love that Brad and I have always shared is music.  We each have very extensive music collections, and every time we get together we spend a lot of time playing old songs - sort of a, "Hey, do you remember this one?"  It's fun to reminisce that way.  Mike and Susan probably think we're both nuts, but then again, they've spent the better part of two decades living with us, so they're used to it.  When I was finally able to tear myself away from Brad's music collection Saturday night, Mike and Susan had already set up the fire pit in the backyard and had all the kids roasting marshmallows and making S'Mores!  We hung out around the fire until it was time to round for bed.

Now today we have a pretty relaxed day planned.  Brad has a softball game of his own tonight, and one of our cousins that I haven't seen since high school is coming over for a while this afternoon, but other than that we're planning on nothing more than just hanging here at the house.  Relaxation!

Hope everyone is doing well.

S.

29 June 2008
Quick update.  It seems my mind is not waxing quite so philosophical today as it was on my previous entry.  It happens.

Keeghan is doing well.  The Tarceva he started a week ago has caused a major rash on his nose.  His entire little nose looks like he has little whitehead pimples all over it.  The biggest problem (beside the aesthetics of it all) is that it isn't acne, so it can't be treated with acne medicine.  We were told to have him wash the rash with mild soap and then use an alcohol-free moisturizer on it. We've done that, but it isn't working.  So now we have to look at prescription treatments, i.e., hydrocortisone cream or clindamycin gel.  Hopefully I'll be able to get something from the doctors tomorrow.

Also, in nose news, Keeghan got another nosebleed this week.  It was on Wednesday, just as we were leaving the hospital from his PT appointment (he had his first OT and PT appointments at Children's this week).  We were pulling out of the parking garage at Children's when it started to bleed.  I got really angry.  Not at Keeghan, of course, but at the doctors.  I had Keeghan at the hospital with a nosebleed a couple of weeks ago and the ENT department said they couldn't do anything while his nose was actually bleeding.  Then last week, on his chemo day, ENT said it wouldn't do any good to see him when his nose wasn't bleeding, because they wouldn't be able to see where it was bleeding from.  So when it started bleeding again and we were at the hospital, I immediately thought "Oh, H#&& no, they are going to see him this time!"  I drove around the block and right back into the parking garage.  We headed up to the clinic and ran into one of our favorite nurses just as we exited the elevator.  I told her that I was not leaving until an ENT doc saw him this time.

I might have thrown a couple of expletives in there also . . . but I think, under the circumstances, that was understandable.

So, after nearly an hour of waiting, not only did an ENT doctor come see him, but FOUR of them did.  They did a lot of looking in his nose, pinching his nose, questioning me on the history of his nosebleeds, etc.  In the end, they packed the side of his nose that was bleeding with some gel stuff that they said would dissolve over time.

I have to say that, out of all the painful procedures I've had to watch Keeghan endure in the past 2+ years, hearing the way he yelled as they shoved that stuff in his nose was the worst.  And what really stinks about it is that the packing only stayed in his nose for about a day and a half.  He was awakened in the middle of the night Thursday when the packing went down the back of his throat and he had to jump out of bed to cough it up!  Needless to say,  I won't be demanding that ENT see him again.  Their packing lasted less than two days, and then yesterday, at Maxx's swim meet, he got another nosebleed.  So all of that trauma that he went through and it accomplished nothing.  NOTHING!

In other news, we decided this past week to take a trip to California.  We haven't been out there in three years and the kids are really wanting to see their grandparents, aunt and uncle, and cousins.  My mom has been offering to help out with our plane tickets for a while and we just decided that now was the time.  With Keeghan about to start a new round of chemo drugs - drugs that we don't know what the side effects of will be - we figured now was the best time.  So we bought tickets on Wednesday.  On Friday I received a phone call saying that my mother had fallen and broken her hip.

Insert a big "Oy Vey!" here.

So I guess it is good that we will be out there in a few days so I can help out.  But wow . . . when it rains, it pours, eh?  I have to assume that the break I asked for a few weeks ago for all of us just isn't in the cards.

Ok, that's all for now.  Hopefully I'll get another update in here before we leave on Friday, or that I'll at least be able to update from Cali.

Take care.

S.

25 June 2008
I want to start by thanking all of you.  For your emails these past few days, your encouraging words in the Guestbook, and a few of you that I know personally, for letting me cry to you.  There truly is no end to the number of tears a parent can cry for their child; I'm walking proof right now.  So thank you all, for caring about my family enough to let your own hearts ache for us.  We love you all.

I've had a ton of things on my mind in the past few days.  Amazingly, quite a bit of it has had nothing to do with cancer or Keeghan, and most of it is stuff I would not want to taint this website with by writing about it.  To distract ourselves from reality, we like to rent movies (Netflix is a good friend to this household!).  One of the movies we watched over the weekend was "The Bucket List."  I worried about watching it because I knew it was about two old men dying.  In any movie with that kind of plot, you can bet that cancer is somehow involved.

It was.

But one of the best things about the movie was the fact that these two old men did not let cancer rear its ugly head to the point of overshadowing life itself.  I liked that.  But there was one part of the movie that . . . grabbed me I'll say, since to say that it touched me would be an understatement.  One of the characters was talking about how the Egyptians believed, after your death, that you were asked two questions before you could enter the afterlife.

1.  Have you found joy in your life?

2.  Have you brought joy to others?

I've seriously been thinking about those two questions.  I've always said that I want to live my life in a way that allows me to look myself in the eye in the mirror every night before I go to bed and not be ashamed of the person I see.  There have been times when I haven't been able to do that . . . and it's made me try harder to be that person.  I don't know if the Egyptian reference in the movie is accurate, but I still really like these two questions.  If I apply them to Keeghan, I think it is safe to say that his answers to both questions would be a resounding YES.  He brings joy to so many, and I know that he has joy in his life.  We try to make sure that both of our kids have joy - of the heart, of the mind, of the spirit - every day.  Because their joy is our joy.

But I have to add one more question to my own personal daily list, because this one seems (regrettably) very applicable to many people.

3.  Did you purposely hurt anyone today?

Because honestly, no matter how much personal joy you find, or give to others, if you think that outweighs purposely hurting someone else, have you really accomplished anything?

People tell us all the time that they don't know how we deal with what we're going through.  The most honest answer we can give is, "Because we have to."  Besides that though, we do it by trying to make sure that both of our kids have joy in their lives.

This is going to sound harsh, but I hope you'll all bear with me as I try to explain this.  Yes, I might lose my son far sooner that I want.  But then again, one of you could lose a loved one - spouse, parent, child - even sooner than I do, and without warning.  We are fortunate in one respect in that we have warning that it might happen (I refuse to say that it will happen, because that sounds like I've given up fighting and will NEVER do that).  But I think about it every day, and try even harder to bring joy to those I love and make every day the best day it can be.  Many people - some of you included maybe, although I hope not - don't live that way, and if they are one of the ones that lose someone suddenly, they might look back and wish they had lived their days differently . . . wish they had brought more joy, and less hurt, to others.

Can you see my point here?  Sometimes, when I see people making a big deal out of things that are really minor, I wish I could let them live my life for a week.  Not that I want an escape from my own life, but because I think that what our family is going through gives perspective that, unless you've walked this cancer path, you don't have.

A wonderful lady that I know here on base emailed me a quote a few days ago.  It said,

"You don't get to choose how you're going to die. Or when. You can decide how you're going to live--now."
           -Joan Baez

This is how we are getting through this.  We are making sure that every single day of Keeghan and Maxx's lives have joy in them somehow.  We know that they bring joy to others because, besides the joy they bring us, Mike and I have each had people tell us what an inspiration and joy the kids have been to them.  I think if we continue to live this way, no matter how many days we all have together, we'll be able to look back and say it was a good life.

What better way is there to live?

Have a blessed day.

Shannon

19 June 2008
Not a great day.  It is 1:40 pm and we have been at the hospital since 8:30 am.  Keeghan still isn't started on his chemo.  Why?  Beats me.  It just isn't meant to be a good day I guess.

Keeghan's tumor is growing.  Not as quickly as before.  It's creeping they say.  Which means the medications he is on aren't working completely.  That would explain why he seems to be losing more and more of the use of his left side.  So he is going to start on a new drug today called Tarceva that he will have to take every day.  It isn't a chemo med; it's another biological, like the Avastin he's been taking.  My understanding is that the Tarceva blocks a protein that the tumor needs to grow.  The doctors said that there are a few other medications that they are waiting on to be approved for use; once they are approved, the doctors will switch Keeghan to a new regimen.

And then we pray some more.

I'm not having an easy time with this.  I'm trying to hold it together because I'm sitting ten feet away from my son and daughter as I type this.  But it's hard.  Actually, "hard" doesn't come close to describing my emotions right now.

I woke up yesterday morning in tears.  Sobbing.  I had had a dream that I was at a funeral.  My dad was speaking at the funeral (and if you knew my dad, you'd realize how odd that is as he's not much for public speaking).  It was Keeghan's funeral.  I got up and walked out in the middle.  As I walked out, suddenly Keeghan was walking with me.  I sat down on a bench outside the building and Keeghan sat on my lap.  As he leaned back against me, he was suddenly a baby again, wearing nothing more than a diaper.  I buried my face in his little neck and just inhaled his sweet baby smell.

This is killing me.  I'm so beyond scared, and yet I have to keep it together.  It's very easy in times like this to get testy with everyone else around me.  Mike especially.  And even though I know it is wrong, it's hard to avoid.  All of our strength is being tested right now and I'm not sure I can pass the test this time.  I will, because I refuse to do anything else.  But right now I feel just . . . destroyed.

I want to keep my baby.  As always, all prayers are welcome.

S.

15 June 2008
Happy Fathers Day to all you dads out there!

I am enjoying Mike's Fathers Day by sitting on the couch doing nothing while he plays in the kitchen with his new toys.  I'm so glad that man loves to cook, because I just don't get the appeal of all those kitchen gadgets!

Thank you to everyone who has asked how I'm doing post-surgery.  I'm doing well.  Sinus surgery is . . . weird.  I finally managed to come up with an analogy today that might help people understand what it feels like: turn your face inside out, scrub everything down really well - twice - with a steel brush, and then turn it all right side out again.  That is what my head feels like after having sinus surgery.  I'm still trying to figure out how (and when?) all of this is is supposed to make me feel better.  I personally think some sick war interrogator figured this out as a good torture method and the medical world jumped on it (renaming it "cutting-edge medical treatment", of course).

Keeghan and Mike were great to have along for the surgery itself.  The nurse who tried (unsuccessfully) to get an IV started on me tried to explain to Keeghan everything that she was doing.  Once he told her that he knew what an IV, pulse oximeter, etc. were, he was the hero of the room.  By the end of the day he was Mr. Popular with all of the nurses.  One even asked him if she could give him a hug, and then when he did she started to cry.  It was very sweet.

After surgery was pretty uneventful.  Or at least it was as far as I remembered.  Mike and Keeghan brought me home and got me settled in.  Maxx hovered like a little mother.  All things considered, I was feeling ok.  Then I went to the doctor the next day to get the packing removed.

Oy vey!  Who knew you could fit 16" of gauze up someone's nose?

I won't go into detail on the removal of said gauze.  But I was traumatized.  Seriously.  Never will I ever willingly go through that again.

And the topper to it all was the doctor telling me that I acted "more like a teenage girl" than they expected from a woman my age as they were bringing me out from the anesthetic.  What do I say to that?  Sorry?  Get over it buddy, that's what you get paid the big bucks to deal with?  Loser.

So not only did I feel like my face had been turned inside out, but my ego took a beating also.  He's lucky I don't owe him a copayment because I might just keep my $3.00!

Humiliation without the possibility of retribution really stinks.

But enough of that.  I'm so over my nose and all of its issues.  Everything else seems to be normal around the house.  Keeghan got another nosebleed yesterday.  I'm starting to get really frustrated with the nose thing, as is Keeghan.  I'm hoping they will get an ENT specialist in to see him this week.  I realize that the chemotherapy is what matters most to the oncologists, but the rest of Keeghan's health needs to be recognized as important also.  Looks like it might be time for me to put my "Patient Advocate" hat - the one with "Mother from Hell" in subscript - on and force these people to do something.

Ok, I'm out.  Again, hope it's a great Fathers Day for everyone.

S.

11 June 2008
Cancer sucks.  Have I told you all that recently?

At the pool here on base all children under age 13 have to take a swim test in order to be able to go in the pool without a life jacket.  While Maxx was busy with swim team practice today, Keeghan took the swim test.  All that is required is to swim across the pool and back (the short way, not the long way), and to tread water for one minute.  Last year he passed the test and was able to go in the deep end of the pool, as well as off the diving board without a life vest.

Not this year.

This year he had a harder time with kicking, so he wasn't as strong swimming across the pool.  In fact, the lifeguard (who has been called a number of not-so-pleasant names in my head in the past hour) didn't even bother having him tread water for a minute (which he can do just fine).  Instead, she just decided that he can be in the shallow end of the pool but if he goes in the deep end he has to wear a life vest.

Four years of swimming lessons . . . completely canceled out by two years of chemo.  It sucks!  SUCKS.

I'm so upset for him about this.  He's holding himself together, but I think it is only because I'm not.  The look on his face when she told him he'd after to wear a life vest to go off the diving board . . . killed me.  His face just fell.  I'm so upset and angry, and the only place all that anger can be directed is at cancer.  I'm supposed to be watching my son get better at things as he gets older, not worse.  Especially at the one thing that he truly loves to do - swimming.

I hate this.

S.

10 June 2008
I have tried numerous times over the past two days to sit down and type an update here.  Every time, I've either had something else come up that I just had to deal with, or the cable has been out and I haven't been able to get online.  Yesterday I really needed to get on here and write, as it had been a very frustrating day and I needed that outlet of writing about it.  But I couldn't do it.  I guess I could have typed it all up somewhere else and then copied/pasted it here once the internet was back up, but somehow that doesn't feel the same for me.

I know.  Weird.

So now I must type a quick summary of what has been going on in the past couple days and what will be going over the next few.

Keeghan got another bloody nose yesterday that went on for hours.  As soon as he got out of bed it started bleeding.  After a couple hours, I emailed the nurse practitioner at the clinic and told her we were coming in for labs.  His platelets were at 55, so not too much lower than the 59 they were at on Thursday.  He's getting so tired of the nosebleeds though, so the doctors said they are going to see if an ENT specialist can look in his nose and try to determine the problem.  Hopefully that will happen next Thursday (the 19th) while he is at the hospital for chemo.

As for the next few days, well . . . I will be somewhat out of commission for a little while.  I am having sinus surgery on the 12th to try to fix my schnozz (and just so everyone knows, I will NOT be coming out of surgery with a new nose).  It is outpatient surgery, but apparently is quite painful immediately after surgery.  So I may not update for a few days.  Mike and Keeghan are both going with me to the hospital.  Keeghan says that, because I have been there for him before and after all of his surgeries, he wants to do the same for me.  He's so sweet.

So that's where we're at right now.  Keeghan has his next MRI coming up on June 16th and, as always, I will take all the prayers/positive thinking you all can spare.  He seems a little weaker to me lately, but that may just be my normal pre-MRI anxiety.  Either way, we keep praying.

More in a few days!

Shannon





5 June 2008
I just got this picture via email, and I just can't go to bed until I get it up here for everyone to see.

This is the Saturday Night Cosmic Bowl Crew.  Yes, they are official.  It is (from left to right) Maxx, Keeghan, Tasha and Hannah, and every Saturday night, when possible, they hit the base bowling alley for Cosmic Bowling.  They're quite the team from what hear (insert giggle here).  I just love this picture.  My kids have some pretty fabulous friends, and this picture is just . . . beautiful.

Special thanks to Tasha for emailing it to me.  I needed this happy moment tonight!

S.

5 June 2008
I had a big, long post typed up just now, and then something happened and . . . POOF!  It was all gone.  I guess my computer ate it.  It was quite the rant too.  I no longer have the energy to type it all out again - no matter how cathartic is was going to be to get it all out.  So I'll try to summarize it - just to have SOME kind of update for everyone.

The week has been busy, but mostly with things I haven't wanted to do, and not nearly enough with things I did want to do.  Maxx and I arrived home on Sunday at around 11:30am.  Three hours later Mike left to drive to Pennsylvania.  He's still gone now.  The kids started swim team practice on Tuesday.  I am on the Board for the swim team, and that job has taken up way more of my time this week than I ever wanted it to.  Because Mike was gone, the kids and I had to go to Walter Reed to pick up a prescription for Keeghan that Mike usually goes and gets.  It was my first time at Walter Reed since the day we met with the neurosurgeon and the oncologists in January to discuss his tumor coming back.  The first time I'd been there since Dr. Doorknob said, "I think it's safe to say this will shorten his life."  The first time I'd been there since the day I very seriously considered murder.

I wasn't happy to be there.  Can you tell?

We were in and out in less than 15 minutes, yet it felt so much longer.

Anyway.  After that I needed something fun, so we headed to Barnes & Noble for a coffeeee.  Due to a crazy thunderstorm, we got stuck at the bookstore for nearly two hours!  After that, we wanted to go out for Chinese food.  The restaurant was approximately 7 miles away.  It took us another two hours to get THERE!  All told, we were away from the house from 1:30pm until 8:30pm!  It was insane.

Now today was a chemo day.  Long.  Because Keeghan's platelets are still low (59 this week), the doctors decided NOT to have him take Temodar this week (I went to that hideous hospital yesterday for NOTHING).  Keeghan was actually happy about that though.  He hates taking pills of any kind, so a break from it is always welcome.

I honestly can't pinpoint exactly what has made this week feel so long.  I just know it has been.  I want it to be over.  I want a week of lots of school work getting done, and not a lot of extra stuff getting in the way.  I'm actually considering closing down my email program and ignoring my phone during the day for a while, just to prevent everything else from interfering with our school time.  Right now, that would actually be my idea of a great vacation.

I need therapy!

S.

30 May 2008
Sorry no post in a while.  It's been busy around here.

Tired . . .

We spent the long holiday weekend doing exactly what we had been wanting to do for nearly a month prior but couldn't.  NOTHING.  It was fabulous.  Of course, then the weekend had to come to an end, right?

The kids and I have been trying to get caught up on school work.  We're not too far behind, but we definitely lost a few school days back at the beginning of the year when Keeghan was first getting back into treatment, as well as when we went to Ireland.  We should be done by the end of June so that they can at least have a couple of months of no schoolwork at all.  Hopefully!

This weekend I am heading off to Solomon's Island, MD with Maxx's group of Girl Scouts.  It's a special weekend for the 8th grade girls in the troop only.  I will be on my own with them tonight, but reinforcements will be arriving tomorrow!  I'm looking forward to it, but there's always that mom-guilt in the back of my mind over leaving Keeghan.  I know I need to get over it - I can't be with him every minute of every day, and he's probably in better hands with his dad than he is with me.  But it's still hard.  Of course, he and Mike get to have a Guy Weekend, which I know will be fun for both of them.  Keeghan is excited about it, mainly because he says "Daddy is a goofball."  I can rest assured that Keeghan will probably be the voice of reason in this house for the next two days (sorry Mike - love you!).

Adding to my guilt is the fact that Keeghan had a nosebleed yesterday that lasted for about four hours.  We called the on-call doc and were very close to taking him to the ER.  We're fairly certain that it was hard to stop because his platelets are so low (they were at 36 yesterday).  The only way we were finally able to stop it was to just plug his nose with tissue and have him sleep like that.  When he took the tissue out this morning it bled again, but only for a couple minutes.  Since then it's been alright.  But still . . . coming so close to taking him to the ER the night before I'm to leave for two days makes leaving just that much more difficult.

I gave him explicit instructions to send me lots of text messages while I'm gone.  That should keep us both occupied until I get home Sunday morning!

Hopefully I'll have fun pics by Sunday evening to share!

S.

22 May 2008
Interesting story for the day . . .

It was a chemo day for Keeghan today, so we spent about seven hours at CNMC.  It was a tougher day than normal, but only because he also had to get another gradient echo scan at 7:30am.  So the child that normally sleeps until ten o'clock had to be up at 5:45.  NOT a good start to the day!  But even with the early start, it was a good day because Keeghan's friend Michael that he met a few weeks ago was there getting chemo also.  It's amazing how quickly time goes by when you have someone else to talk to!

I may have mentioned before that Maxx spends most of her time in the Art Room at the clinic.  The Art Therapist, Kathleen, is wonderful and lets Maxx paint and draw, as well as help the other kids that come to the art room in any way that she can.  We're starting to really think that Maxx has found her calling because she's an incredible artist, and she's amazing with kids.  And for the first time EVER, when we say "this is something you should think about as a career" she doesn't turn her nose up and say, "No."

A few weeks ago, while hanging out in the art room, Kathleen gave her a tile to paint.  It was approximately a 4x4" tile and, as best she can remember, she painted a flower, a star, and a heart with angel wings and a halo on it, along with the words Hope, Faith and Love beside them.  At the top she says she thinks she put "Don't Give Up."  Apparently Kathleen was having all of the kids that came in paint one of these tiles.  Today Kathleen told her what became her creation.  The hospital had some kind of fundraising event, and all of the tiles were offered up for sale at a flat rate of $100 each, with all proceeds going to Children's National Medical Center.  One tile out of the group was selected to be offered up as an auction item.

It was Maxx's tile!  But wait . . . it gets better!

The entire event raised approximately $11,400 for the hospital.  Maxx's tile . . .
SOLD FOR $8,000!!!!
Can you believe that?!  Her one little tile earned 70% of the total amount raised for the hospital!  Mike and I are just bursting (in case you couldn't tell).  We have always known what a great artist she is, but wow!  I think Maxx is in a state of bemusement over the whole thing.  Her one comment to me was, "Mama . . . who would spent that much money on something so small?"  My response was, "Obviously someone with a lot of money!"

So I guess we can no longer call her an amateur artist - she's now had a piece of her work sell!  She's a professional!

Just wow . . .

S.

18 May 2008
Ok . . . if I did this correctly, you should soon be able to see Keeghan's speech from  today here.

18 May 2008
Make a donation to Make A Wish!  Really!

There have been a number of charitable organizations that have done incredibly nice things for our family since Keeghan's cancer was diagnosed, but I don't think anything will ever top the trip to Ireland.  We've been home for over a month and we still talk about it daily!  Having his dream made a reality is something Keeghan will never forget.  None of us will.

Today Keeghan was able to thank Make A Wish, as well as many of its contributors, at their 18th Annual Kids' Triathlon in Silver Spring, MD.  Keeghan was invited to be the Honorary Wish Child at the event and was able to get up and speak to the crowd about his wish, and thank everyone for continuing to help raise money for this remarkable organization.  He was even given a plaque that said:

                                   The Make-A-Wish Foundation
                                       of the Mid-Atlantic, Inc.

                                              recognizes

                                            Keeghan Barry

                                 as the Honorary Wish Child at our
                                     18th Annual Kids' Triathlon

                             In sharing about the power of your wish,
                                you encourage others to support our
                                mission and wish children like you.

                                               May 18, 2008

All week long we've been talking about making up an index card with short reminders of the things Keeghan wanted to say today, but in the end he decided to go with his gut.  Keeghan is never shy about talking to people, even people he's just met.  But I do believe my little man got a bit nervous up there in front of everyone today!  He got most of the way through what he wanted to say and then just sort of stalled.  But he pulled through in the end and did a fabulous job!  He really enjoyed getting to say thank you to everyone.

Another bonus of the day was that he and Maxx were allowed to hand out ribbons to kids as they crossed the finish line in the triathlon - that was very cool!  The kids competing were incredible - some very serious athletes showed up to raise money for Make A Wish!  We were all very impressed!

All in all, it was a good morning, and the rain was kind enough to hold off until all of the competitors had finished, had a bite to eat, and received their awards.  I congratulate them all on a great showing today!

Be sure to check out the 2008 Pictures page to see more pictures from the day.

S.

16 May 2008
I wrote a few weeks ago about pictures that we found in Carrickfergus that reminded me of the kids.  Mike took pictures of them for me so that I could post them here.

I know it may seem silly that a couple of pencil sketches could touch us so deeply, but you have to understand how our two kids are.  Maxx has been coloring, drawing, and painting since she was old enough to hold onto a crayon, pencil or brush!  It is her way of expressing herself.

Even now, at age 14, she is constantly "creating."  You can see it in her eyes sometimes.  She has an idea for a picture formulating, stewing, and she will not be able to rest until she gets that out.  Even if it means sitting down on the ground wherever she is, with a piece of paper and a pencil.

That is why this picture is Maxx.  Absolutely.

Keeghan, on the other hand, was always into nature.  You know the kind of nature I'm talking about - dirt, bugs, rocks - all the stuff that little boys love!  It was pretty much a guarantee, if he was outside, he was down on his knees in the dirt "exploring."

Looking at the little guy in this picture, I can just imagine that he's examining a lady bug, or looking for a cool new rock to add to his collection.  He is Keeghan.

One of the biggest losses for Keeghan (in terms of things he can't do with a suppressed immune system) is not being able to just pick things up off the ground that he finds interesting.  He still manages to add a new rock to his collection once in a while, but I think sometimes he mourns for the little boy who was always out looking for critters.

I would love to know who the artist who drew these pictures is, as well as meet his/her inspiration for them.  I wonder if it was the artist who donated the pictures to the cancer-support store where we found them, or if they were given to someone else who later donated them to the store.  And how surprised would the artist be to know that those little sketches are now proudly displayed all the way over here in Washington, DC?

I like to think the artist would be pleased that they touched someone so deeply, don't you?

S.

15 May 2008
For fast-acting relief, try slowing down.  ~Lily Tomlin

Wise words those.  Thankfully, it looks like slowing down might actually be in our near future.

We spent last weekend in Williamsburg with the grandparents from Texas.  Before we could head down there on Saturday, however, Grandad had to come by the house and challenge young Keeghan to a game of pool.  It was a close game, but Keeghan won.  Actually, I think Grandad beat himself by calling the wrong pocket on the 8 ball, but we're calling it a win for Keeghan!

The drive to Williamsburg is never fun.  Actually, not much about trying to get out of the National Capital Region is fun if it involves driving.  But everyone made it down there ok.  The condos where we were staying had an arcade where all the games were free, so the kids made good use of that!  On Sunday the kids made Grama play mini-golf with them (many good pics of which to be posted on the 2008 picture page soon).  We drove around Colonial Williamsburg (just so Grama could say she'd seen it), and then went to the outlet mall.  On Sunday evening the condos were doing a DIY Build A Bear workshop, so Grama took the kids to build their own stuffed animals.  All in all, it was a fun weekend.  Any time we get to spend with the extended family is always a bonus as we're a bit isolated from everyone out here on the East Coast.

We returned from Williamsburg on Monday.  Mike went back to work on Tuesday and the kids and I hit the books again.  It was looking like a pretty easy week, with the only appointment scheduled being Keeghan having labs at CNMC today.  Easy, right?

Is anything EVER easy in this family?

You guessed it.  NO!

Everything was fine when we woke up today.  Keeghan was tired because of having to get up a little earlier than he's used to, but other than that all was good.  He came downstairs, had some cereal and a cup of coffee, and was just headed upstairs to get dressed when he (very) suddenly started vomiting.  It hit him completely by surprise the poor kid.  I asked him if he'd been feeling sick at all.  He said he had felt a little nauseated, but he hadn't felt like he was going to vomit.

Looking back, it was kind of comical when it happened.  Maxx and I were upstairs when we heard what sounded like a bucket of water hitting the linoleum in the entryway.  We both looked at each other like, "Please tell me that wasn't what I think it was."  (It was.)  The dog was upstairs at the time also.

Now, you have understand one thing about Maxx.  She is a MAJOR sympathy puker.  She will be in the room to support Keeghan through just about anything, but puking she can NOT deal with.  She has actually jumped out of a moving car to get away from the sound of him puking (thankfully, at the time, we were just around the corner from home so we were only doing 10mph).

So, as soon as Maxx sees that Keeghan is vomiting, she heads for her room.  The problem was, the dog was upstairs with us.  Most of the time we yell at Ceili to get downstairs.  But I couldn't DO that this time because to GET downstairs she'd have to walk right through the puddle of ick.  So instead I have to yell at Maxx to keep the dog UPstairs.  The dog, by this point, is completely confused.  At the time, there was no humor to the situation.  But now?  Yeah, just a little.

Anyway, poor Keeghan had to go take a shower afterward.  I cleaned everything up before the dog got to it (ew).  I called the clinic to let them know what happened, just in case they wanted one of the doctors to see him, since he wasn't scheduled for anything more than having labs drawn.  We finally managed to get out the door for the clinic around 10:30am.

We stopped on the way to the clinic and bought Keeghan a Sprite and some Cheerios because he was getting a little hungry again.  I didn't let him eat anything until we were in the clinic though.  He was hilarious once he started eating.

"Mmmmm . . . I like Cheerios."

"This Sprite tastes so good."

"PIE!"

I looked at him like he'd finally lost his mind and he said, "Apple PIE!  Doesn't that sound good?"

That's when I knew he was feeling better!

So he had his labs drawn.  The doctor was worried last week that he might need a platelet transfusion today, but he didn't.  His platelets dropped from 50 last week to 47 today (they have to drop below 20 before they'll order a transfusion).  One of the oncologists saw him just to do a quick exam, but everything seems fine.  He doesn't appear to have any new pressure from the tumor.  No headaches, dizziness, blurry or double vision.  And since this morning he's eaten and been fine.  So the vomiting must have been a fluke thing.  Keeghan says he doesn't think he'll be able to look at a bowl of corn flakes again for quite a while, but other than that he's feeling good.

I know it seems, when I tell these stories, like I take everything in stride.  But I don't.  I was completely freaked out today when he started vomiting.  While he was in the shower, Maxx asked me if I was ok and I immediately choked up and said, "Yes . . . No."  Once again, my baby girl had to be my shoulder to cry on.  But I couldn't let Keeghan know I was scared, so I forced myself to straighten up by the time he was dressed and ready to go.

So yeah, I could use some of that fast-acting relief right now . . .

S.

9 May 2008
What a busy week!  No updates in a few days is good news though.  Keeghan is doing great.  He had chemo yesterday and, as always, handled it well.  The only possible problem is that his platelets are low, so instead of having next week off from doctor appointments, we have to take him back for labs just to make sure he doesn't need a transfusion.

One exciting thing for Keeghan this week was that a new book in his favorite series - Percy and the Olympians - came out on Tuesday.  Those of you that have followed this blog from the beginning will remember that Rick Riordan, the author of the Percy and the Olympians series, came to visit Keeghan at M.D. Anderson but didn't get to see him as Keeghan was in surgery.  Keeghan was already a big fan of the books before that, but the fact that Mr. Riordan took time out of his busy schedule to come visit a boy he didn't even know in the hospital really cemented Keeghan's devotion.  Needless to say, the new book was released on Tuesday and we were at Barnes and Noble at 10:00am that day to purchase it!

Other than that, the week has been uneventful.  I have had some medical issues of my own to deal with that have taken up a lot of time this week.  I saw an ENT specialist on Wednesday about a chronic sinus infection that just won't seem to go away (it's been raging since February!).  I apparently have a deviated septum and swollen turbinate tissue (turbi . . . him say what?) that are contributing to the problem.  I had a CT of my sinuses done at Andrews AFB a couple weeks ago and have to mail that to the ENT doc before he can diagnose anything beyond that.  So I guess I'll be getting something done to my schnozz in the next few weeks.  I joked about coming out of surgery with an Ashlee Simpson nose and Maxx freaked!

"You do NOT need a nose job, MOM!"

Bummer.

That's ok.  I'll settle for just being able to breathe, and I'm sure my husband will settle for just having me sleep without snoring!

You know, a break would be nice right about now . . . please?

We will be out of town for the weekend.  The grandparents from Texas are visiting and we will be staying with them down in Williamsburg.  Hopefully I'll have lots of new pictures and stories - more interesting than my sinus garbage - early next week.

Have a great weekend!

Shannon

4 May 2008
We are home from Virginia Beach and the cheerleading season is officially over.

Can I get a . . . . well, you know what I was going to say.

Anyway, the girls performed this morning around 9:00am.  They did an outstanding job on their routine; I was very impressed.  The awards ceremony was not until noon though, and Maxx decided that she didn't want to stick around for it.

Now, before anyone starts thinking she is not a good team member because she didn't want to stick around and find out the results with her team, let me just tell you a little story . . .

We knew that today was going to be an early morning, so we insisted on everyone going to bed at a decent hour last night.  We had lights out by 10:00pm and were doing our best to get as good a night of sleep as is possible in a hotel room.  At about 11:50pm, we were awakened to loud cheering in the hallway right outside our room.

"2 . . . 4 . . . 6 . . . 8 . . . . " - yeah, that kind of cheering.

Mike went to the door and opened it to find a gaggle of kids that looked to be about 17-18 years old, all dressed in formal wear.  He asked them if they could keep it down.  The young men in the group immediately said, "yes, sir!"  There was one girl, however, who replied with, "We're getting ready to go to a party."

Mike said, "Well we have people in here trying to get some sleep."

Her response?  "Well I don't care."

Holy cow . . . it's a wonder the state of Virginia (or wherever the girl was from) isn't less one teenager today!  I called the front desk to complain and they said they'd take care of it.

Two more times over the next three hours we had to call the front desk because of the same kids yelling outside our room.  The hotel staff must have put a note on their door at some point (either that or this girl was just THAT rude), because the last time we heard her she was screaming right outside our door, "I hope you're asleep now OLD MAN."

At that point, I was almost the one to take her out.

Needless to say, we didn't get a good night's sleep.  By the time the performance was over, what with the bad night and then all the excitement leading up to the performance, Maxx was done.  As in D-O-N-E, want-to-go-home-and-never-see-a -cheerleader-again, done.

As it was, I had to keep Mike awake on the way home, so it's a good thing we didn't wait another three hours to get on the road.  I'm sure we will hear from someone later letting us know how the girls did.  In the meantime, everyone is chilling out now, trying to enjoy the last little bit of the weekend that we have left.

Keeghan is doing fabulous.  He had a good day at the clinic on Thursday, although it was a bit long.  He was only there for his monthly antibiotic treatment, which is approximately a one-hour infusion.  But we were still there from 9:00am until 1:30pm.  The clinic was just very busy.

He had a couple of interesting things happen though.  The first was that he met another little boy about his age.  I'm not sure what the other boy's diagnosis is, but it was nice for Keeghan to get to talk to another boy his age while at the clinic.  That's never happened before.

The other thing was that Debbie, the nurse practitioner, came out and and asked Keeghan if he would come with her because she wanted to introduce him to someone.  She wanted to introduce him to a young girl, close to his age I think, that is just starting out her journey with brain cancer.  She's still going through radiation at this point, and I guess is pretty scared about it all.  Debbie thought the girl might feel better if she talked to someone else whose been through all that.  I don't know if Keeghan made her feel any better, but we sat and talked with the parents for a while, so maybe just hearing him talk about it helped her some.  I hope so.

Right after that, I received a phone call from someone at Make-A-Wish asking if Keeghan would be willing to speak at a Make-A-Wish function in Silver Spring, MD on May 18th.  My understanding is that it is a fund-raising event of some kind that they have every year.  They try to get a local child who has recently had their wish granted come to speak, and to thank everyone for helping to raise money for such a worthy cause.  Keeghan enthusiastically agreed to do it!  I'll have to video tape it so I can share it with everyone here.

Ok, last thing (this was supposed to be short)!  This is actually a story from a couple of weeks ago, but I forgot to write about it.  This will give you an idea of how sarcastic my little man truly is.

There is an intersection in downtown Washington, DC that we get stopped at on our way home from the hospital every week.  There is always someone either selling something in the median, or begging for money in the median.  Always.  Two weeks ago, however, as I stopped at this intersection I noticed that there was no one there at all.  So I said to the kids, "I think this is the first time I've ever been at this intersection when there wasn't anyone selling flowers or begging for money.  That's odd."

Maxx was sitting in the front seat with me and I think she said something like, "That is weird."  Keeghan is in the back seat and pipes up with this little gem:

"Wow Mom . . . I'm really glad that we could be here to share this moment with you."

Snarky much, little man?  What a piece of work that child is, eh?

Ok, now I'm done.  Hope everyone had a good weekend!

S.

2 May 2008
So much to say, so little time.

I haven't updated in a few days, but not because there isn't anything to update about.  Mainly just because life has been hectic . . . and because the things I have to update about are boring.

We are currently in Virginia Beach, VA for Maxx's cheerleading Nationals Finals competition.  Once this is over, she will (thankfully) have a 3-week break before she starts swim team.

Can I get a "hallelujah"?????  Please?

Both kids are going to do swim team this year, although Keeghan doesn't plan to compete.  He just wants to train, which is still very cool.  He's still in that "nothing can stop me" mode that he's been in since we got home from Ireland, which is a beautiful thing.  Now if I could only take us back to Ireland every few months to keep him this way, I'd be golden!

I have some medical stuff coming up that is, more than anything, inconvenient.  I have to see an ENT specialist next Wednesday.  I'll update more about that later.

So, for the most part, all is good.  Busy.  Hectic.  Sometimes annoying (reference my last post).  But overall, life is good.

Sorry this is short, but I need to crash.  More to come soon.

S.

24 April 2008
It's been a frustrating week.  An incredibly frustrating week.  But I can't talk about the most frustrating part of it in any real detail here, and that's really a drag.  I know I said a few months ago that I felt like I'd let this site become too politically correct, and that I didn't want to do that anymore.  That isn't what I'm doing here though.  This is just something personal and close to home, and I don't want to get into a case of personally attacking anyone.  That isn't who I want to be.  But I've been dealing with some issues with Maxx that have me angry, annoyed, and feeling like my hands are tied . . . to the point of wanting to scream.

Not to worry though -  Maxx has done nothing wrong.  She's just involved with a group here on base that I am very . . . disappointed in.  But, because I can't write about it, I'll write about something else.

Keeghan had another MRI yesterday.  The news today was that the "bulk of the tumor" is slightly smaller.  So that's good, right?  But Dr. MacDonald mentioned the part that is close to the brain stem.

Ok, just to refresh everyone's memory, when the last MRI was done on March 3rd, Dr. Packer told Mike that the part close to/in the brain stem was "gone."  Now Dr. MacDonald is talking to me like it is still there, but he says it "isn't enhancing on the MRI."  So now I don't really know what to think.  Mike wasn't at the hospital with me at the time; Maxx finished her standardized testing this morning, so Mike was waiting for her to finish so they could come to the hospital.  So now we have two different doctors giving (seemingly) two different stories.  The bottom line is that the tumor shrunk.  But I now feel like I don't have the whole story or, at the very least, I don't know which story is accurate.

Frustrated again!

Which brings me back to everything going on with Maxx in a way.  I've spoken a lot on this website about how important I take my role as Keeghan's biggest advocate.  It isn't that I don't trust the medical professionals.  Well . . . ok, there have been some that I don't trust, but only because they've proven they can't BE trusted.  But I do trust the doctors at CNMC.  I just need to jump back into my role of "advocate" because the stories don't seem to be matching up.  Therefore I have to make the doctors put their heads together and make me understand (and believe that they understand each other).  Not a big deal really; I know what to do in this situation.  After all, my life has kind of revolved around this whole advocate-for-my-child thing for two years now.

But sometimes you have to advocate for your child in other ways, not just in dealing with medical issues.  Sometimes, you have to step in on behalf of your child because you feel they are being put in a position where they could potentially get hurt.  Or, they're no longer enjoying something that was meant to be fun to begin with.  That is where I'm at with Maxx right now.

I know this is all sounding ridiculously cryptic, and I apologize.  Let's just say that this week I have been put in a position of having to choose between stopping my daughter from doing something that I think puts her in danger of getting hurt (physically), and trusting another adult to make sure that doesn't happen.  Unfortunately, I don't have that kind of trust in this particular adult.  But my daughter does.  In the end, I neither chose to pull Maxx out of the activity, nor did I choose to trust the adult.  Instead, I chose to trust Maxx.

Which means I'm not really advocating for her at all, am I?  I'm sitting on the sidelines, letting her advocate for herself.  And it's making me crazy.

I never thought I'd say that dealing with Keeghan's doctors was easier than dealing with anything Maxx was going through, but here I am saying exactly that.

Parenthood is never easy, is it?  Did I mention that I'm frustrated?

S.

20 April 2008
It's a milestone day today.  It was two years ago today that Keeghan's tumor was found.

Two years.

As I sit here thinking about it, trying to figure out what to say, I can't help but let the tears fall.

When this all started, Keeghan was my baby.  Just barely ten-years-old, and still so much my little boy.  I can't really call him that anymore.  He's my "little man" now.  He's 3.5 inches taller than he was two years ago, which certainly helps him seem more of a man!  He's also light years wiser than that carefree ten-year-old was.

I have to wonder what he would be like if none of this had happened.  Would he be less mature?  Would he interact better with kids his own age?  Would he be less wise?

I use the word "wise" instead of "smart" because I'm not talking about his ability to do math, or construct a proper sentence.  He's just wise . . . like some old Indian chief whose seen so much more than everyone else around him.  Sometimes I am just in awe of him, of the things he says that (in my mind) are so profound for a 12-year-old.  And yet, while I am so impressed by his ability to deal with cancer, I wish so much for him to just be a normal kid, with normal worries - homework, math tests, hanging out with friends . . . being late for dinner because he HAD to try out that new bike ramp the kid down the street made.  Those seem like the worries of a normal 12-year-old boy to me.  Instead, Keeghan worries about what the results of the next MRI will be, when the next time he has to get stuck with a 1" needle is, and whether or not his counts are good enough for him to go bowling on Saturday.

It sucks.  Sorry, putting it bluntly here . . . it just sucks.

All that being said, if there was such a thing as a "Poster Child for Living with Cancer," Keeghan would be it.  He may not be able to ride a bike right now, but he can bowl!  He may not interact well with most other boys his age, but he has this amazing big sister who has no issue with him hanging out occasionally with her and her friends.  In fact, he went miniature golfing yesterday afternoon with Maxx and her friend Tasha, and then went bowling with them and one other friend last night.  He came home telling me that they have decided to go bowling every Saturday night from now on!

For a while after he started chemo again in January, he quit playing pool.  It really worried us because he spent hours at that pool table from the time it arrived on Christmas Eve until he started chemo again, and then just suddenly . . . stopped.  But now he's back to it, and beating me regularly.  It seems like, since the trip to Ireland, he's figured out that he can still do the things he was doing before he started treatment again and he's making himself do those things.

He's finally fighting again.

Not that I think he wasn't fighting before we left for Ireland.  I just think he had less confidence in his ability to win before.  Two years of battling this hideous disease has to take a toll.  But seeing him back to being Fighting Keeghan . . . well, it's a glorious thing to see.

So while I can't really bring myself to say "Happy Anniversary" today, it is a happy day.  It's the day we can all thumb our noses at Cancer because Keeghan is still here and still going strong!

S.

14 April 2008
It's funny how, after only a few days in a place, you can miss so many things about it.  Example?  Roundabouts.  After dreading them before we went to Ireland, I actually miss the crazy things.  Mike left today for a 3-day conference in Gettysburg, PA.  While talking to him on the phone earlier, he told me about how there was a roundabout in Gettysburg!  He said no one had any clue whatsoever how to drive in it.  But it made him think of the kids and I, and miss Ireland.

Other silly things we miss are Lockets blackcurrant and honey lozenges (because we were all coughing and stuffed up while we were there), Smarties, Walker's Sensations Thai Sweet Chili Potato Crisps (these things were A-W-E-S-O-M-E), Scones, Clotted Cream, Blackcurrant jam (although we did manage to find this at Whole Foods over the weekend), Soda Bread . . . I could go on forever about the food and sweets that we found in Ireland that aren't sold in the States.  Rowntree's Fruit Pastilles!  Seriously, so many things!  I have to wonder if visitors to our country find foods that they fall in love with and can't find "back home."

Believe it or not, I have more pictures from our trip to add here.  All of the ones that I've uploaded to the computer so far were from Mike's camera.  But I was also taking pictures with Maxx's camera all week.  So hopefully in the next few days I'll get a few up here to share.  I have some good ones of Mike looking like a National Geographic photographer - climbing down cliffs and out (too far) on the Causeway to get "that perfect picture."

Overall, life is getting back into a normal groove though, even with our Irish homesickness.  Maxx is taking a standardized test next week and we're both stressing out about it.  The test is not required; I just want to know where she stands before she starts high school next  year.  I can honestly say that I think standardized testing is the bane of the American education system.  It's ridiculous how much stress these tests cause.  I'll just be glad when it is over, as I'm sure Maxx will be as well.

After all of last week's exciting posts, this must seem a very boring post!  I'm going to have a hard time topping all of that, eh?

S.

10 April 2008
Reality check day.  Keeghan had a chemo appointment today.   After all of our vacation fun, it was a bit of a downer.  But the good news is that his counts were good, the doctors all thought he looked fabulous - well rested, strong - so it wasn't completely bad.  And now he's crashed out on the sofa, watching tv.  It wasn't the best day (chemo days never are), but it went well.

I've uploaded more pictures.  Now you can view Ireland - Day 6.  I realize I skipped Day 5, but those are coming.  I wanted to get the pictures from the Black Taxi tour up for everyone to see.  I'll try to get captions added to the pictures over the next few days.

S.

8 April 2008 - again
For anyone that is so inclined, I have uploaded a TON of pictures to another site.  If I try to upload them all here, I'll probably blow my server.  I have to warn you, I've never loaded pictures to my .Mac site before, so I make no promises on the speed of it.  You can choose to view pages as a slide show, or click on individual pictures to enlarge them.  Also, some of the pictures are sideways and I haven't figured out yet how to fix that.  Sorry!  But I'm tired, and I've probably put in about 8 hours on this today, so I'm quitting for now!

Here they are:

Ireland - Day 1

Ireland - Day 2

Ireland - Day 3

Ireland - Day 4 - these are the Causeway pictures.

That's all I have so far.  Enjoy!

S.

8 April 2008
Sorry for the lack of updates . . . let me try to catch everyone up on what has happened since my last post on Thursday.

Friday was a pretty laid back day for us which, after the hiking we did the previous day at the Causeway, was a very welcome thing!  We had tickets to go to the W5 (whowhatwherewhywhen).  It was an interactive museum for kids, located at the Odyssey.  For those of you that have ever been to the Witte Museum in San Antonio, you might remember the Tree House part of the museum that was also very hands-on?    Well, the W5 was like that, but x30!  The kids got a huge kick out of the fact that a couple of the exhibits at W5 were the same as the ones at the Witte, but there were 4 floors of things to do here.  It was amazing!  The kids had an absolute blast playing with everything.  Mike, of course, took a ton of pictures!

After we left the museum, we took a cab to Victoria Square.  It actually just opened on 6 March 2008, and it was truly an amazing work of architecture.  It's like a mall, but more open.  If you can imagine, you're walking along a normal street, and then suddenly, without ever going through a door, you're in a covered shopping center.  The levels are all open out to the streets around them, but there is this beautiful glass structure over it all that protects you from the elements (and adds a unique modern touch to the Belfast skyline).

While we were walking around the City Centre, I noticed that Keeghan looked a bit peaked, and even though he didn't feel feverish to this mother's kiss, he felt warmer than normal.  So we headed back to the hotel.  I didn't want to wear him out too much.  Since the lobby at the hotel had become our own personal "public house" we set up camp there for the afternoon.  And evening!  I think we spent about six hours total just hanging out.  Maxx read her book (she read FIVE books while we were in Ireland, four of which she bought at the bookstore down the street from the hotel).  Keeghan played his Nintendo DS, read a book, or worked in a puzzle book (one of his new passions).  I worked on updating this site, while Mike people-watched.  The whole pub-culture was so much fun.  We Americans, with our stay-in-the-house couch potato ways really don't know what we're missing by not having that same culture.

The next day, Saturday, was our last full day in Ireland.  We had been scheduled by Make A Wish to go to a place called The Navan Centre.  While we know that would have been a fun trip, it was 86 miles away from our hotel.  If you haven't figured it out by now, we truly fell in love with Belfast during our week there, so we wanted to be able to spend more time in the city before we left and driving nearly 200 miles roundtrip on our last day wouldn't have allowed for that.  Also, we had heard about something called a Black Taxi tour of the city, and we wanted to check that out.  So we asked Darren, our Make A Wish guru, if we could beg off the trip to the Navan Centre.  We were in luck and it was okay.  So we asked someone at the front desk at the hotel to call a taxi for us.

This day is hard for me to post about, mainly because I don't want to screw up any of the details.  As well, some of the things we saw and learned about were just . . . devastating.  The tour we went on was something of a political tour.  Our driver, Jim, was fantastic in that he was an utter encyclopedia of knowledge about the Troubles.  While there is a "peace process" in place, it's hard to believe that there is peace in Belfast, or in the North of Ireland at all.  Because I don't want to butcher the history, as much as possible I am going to give links to places where more information can be found and I really hope that everyone reading this will check out the links as the story is one that should be more widely known.  I am hoping that Jim, if he reads this, will help me out with better links if he knows of them so that I can be sure to help tell the correct story.  

We saw so many amazing places on the tour.  I was most touched by the memorial gardens spread out around the Catholic neighborhoods in Belfast.  We hadn't seen any of these during our week of wandering the city because the area where our hotel was located was a Protestant area.  We never got near any of the Catholic neighborhoods.  The memorial gardens are tucked in around the various neighborhoods; they pay tribute to the freedom fighters that lost their lives either defending their families, as well as the innocents whose deaths were merely a byproduct of the fighting.  When I say "merely a byproduct" you have to hear it with the derision that I say it with, because it was absolutely appalling.  An example is the story of Philomena Hanna, a 26-year-old mother of two who worked in a chemist shop (pharmacy).  Her crime, and the reason she was murdered, was because she was kind to both Catholics and Protestants, delivering the medications to them and often stopping in for tea while she was there.  Her name is one that we saw on a wall.

Also incredibly moving were the murals Jim showed us.  Many of those lost - some actual fighters, some not - have been memorialized in murals around Belfast.  One of the more famous was of Bobby Sands, who died on hunger strike while in prison.  The one that moved me nearly to tears was dedicated to the seventeen people (8 of them children) that have lost their lives since 1970 to plastic bullets.  I'm completely wrecked even now thinking of troops misusing these bullets, which were not meant to be shot at close range, and killing children.  A particularly heart wrenching story is that of Norah McCabe, a 33-year-old mother of three, who left her home to go to the store and was shot by a police officer.  She was doing nothing wrong, yet she was killed.  No one has ever been held responsible for her death.

I could go on forever on the things that I learned on the Black Taxi tour.  Peace walls that separate Catholic and Protestant neighborhoods - if there is peace, why is there a need for walls?  Segregation - Catholic and Protestant children do not attend school together.  Seriously, SO much that I could talk about.  I now have, really, just a little bit more knowledge than I had before the tour, but it is enough to make me want to learn so much more.  Taking the Black Taxi tour is something that everyone traveling to Belfast should do.

After the tour, we returned to the hotel.  We had only been there a short while when Mike was paged by the front desk.  I turned to look in that direction and saw our driver, Jim, walking across the lobby.  He was carrying a hurling stick.  During the tour, we had passed some young boys about Keeghan's age practicing hurling in a big field.  Jim pulled into the lot beside the field so that we could watch for a couple minutes.  We told him how Keeghan had a miniature hurling stick that he got at the Smithsonian Folk Life Festival last year.  When Jim came back to the hotel, he was bringing Keeghan a full-sized hurling stick!

When Keeghan realized what Jim was holding, he got so flustered!  He was sitting on a couch playing his DS, and his hands were shaking as he tried to put it down.  He stood up off the couch and immediately gave Jim a hug (completely flustering Jim I think!).  Mike got up and shook Jim's hand, thanking him profusely.  I could do nothing but sit there and try to hold back the tears!  That this man had gone out and bought this for my son, who he doesn't know at all, was remarkable.  I managed to say thank you, and then I lost it.  As Jim walked out of the lobby, the tears just fell.  Even now, remembering, I'm fighting them back again.
How do you top something like that?  As a last day in Belfast, it was phenomenal.
And now we make it to the one and only day of our trip that didn't go so well.  Actually, to say that it "didn't go well" is so much of an understatement, I have to giggle just typing it!

We needed to be at the Belfast International Airport by 10:30am to check in for our flight to London Heathrow.  Because we weren't going to have the use of Maggie, the fabulous GPS lady, we decided it would be best if we left early.  There were something like 10738972343 roundabouts between the hotel and the airport, and paranoid me wanted to make sure we had plenty of time to get lost and still find our way there.  Plus we had to turn in our hire car at the airport as well.  So we got up, had breakfast in the hotel - my last true Irish breakfast in Ireland, sadly - and headed for the airport.  I had simulated the trip with Maggie the night before and written down the directions in great detail.  Once again, Maggie pulled through and got us there without a problem.  There was a light dusting of snow on the ground when we got up that day, so the drive was lovely.  Seeing sheep in beautiful green fields with snow on them was endearingly funny!  

We arrived at the airport around 9:00am.  Yes, we were early, but that's ok.  We only had an hour and a half to wait before we could check our bags in, and then an hour after that before our flight would board.  So we headed for a little food court area to sit and wait.  While there, we started hearing announcements about canceled flights, and on the Arrivals/Departures screen we were seeing a number of delays.  But our flight never had a delay message, so we were feeling (foolishly) confident.

We got our bags checked and went to our gate.  Still the screens said we would be boarding at 11:30am.  Around that time, an Aer Lingus employee made the announcement that, due to weather issues at Heathrow, we would not be boarding until 1:00pm.  Huge groan around the room, but still we were optimistic.  We had a 3-hour layover in London anyway, and the flight from Belfast there is only 55 minutes long.  So we'd still be able to make our connection.  

Right.

The next announcement was that we would not be boarding until 2:30pm, scheduled to take off at 3:00pm.  Now we were in trouble, because we would be arriving at Terminal 1 in London, but our connecting flight on British Airways was going to be leaving from Terminal 4.  This requires actually getting on a bus or a train since Heathrow is a huge airport.  There was no way we could make Keeghan run to the bus, train, or gate, so I called Darren (what would we have done without him, right?).  I left a message for him asking if he could somehow call ahead and have a wheelchair waiting for us in London.  That way, we could put Keeghan in it and then run to our connecting flight if necessary.

At 2:30pm, Aer Lingus started boarding.  We were still feeling somewhat optimistic.  Maybe not as much as before, but hopeful nonetheless.  Once everyone was on the plane, the captain came on and made the announcement that started what Keeghan now calls (plagiarizing just a slightly) "the series of unfortunate events."  The captain announced that, due to weather and air traffic control issues at Heathrow, we did not have a time slot for takeoff until 5:10pm.  That was the exact same time that our flight from London was scheduled to take off for DC!  But, being the fools that we are, we were STILL somewhat hopeful that, if so many flights were delayed, our flight to DC might also be delayed and we might still make it.

I have to throw in a story here about sitting on the ground in an airplane for a significant length of time.  You don't get served anything to drink.  People get cranky.  Unfortunately for us, everyone was already cranky when we boarded the plane because we'd been waiting at the gate for three hours just to get on the plane!  There were a couple of children - toddlers - in the gate area that did nothing but scream.  Incessantly.  It wasn't crying-screaming; just general screaming.  Once they got on the plane, it got worse.  Ear-piercing.  My children, funny things that they are, kept making comments about how if they had ever acted that way in an airport when they were small, they'd have been in huge trouble (very true).  It was appalling how these parents had no control over their kids, and seemingly no concern for how annoying it was to the rest of the people around them.

If that wasn't bad enough though, once we were on the plane, Maxx and I had two of the most annoying children in the world sitting just behind us.  These two boys were probably about 6-years old.  The woman they were sitting with was in their party, but was not their mother.  SHE was sitting across the aisle behind Mike.  For three hours, Maxx and I had to deal with these two boys kicking the backs of our seats, yakking at the top of their lungs (did these kids never get taught what an "inside voice" is?), and generally just making us want to go postal.  I thought I was going to have to physically restrain Maxx!  The mother could see me since she was sitting across the aisle, and she figured out that I was . . . . displeased, if you will.  But even her comments to the children to stop did nothing.  The girl that was sitting with the boys was apparently heading to Bangkok for her wedding, so all she did the whole time we were on the ground was talk on her mobile phone and bug the flight attendants about her wedding dress (which wouldn't fit in an overhead compartment and had to be put somewhere else on the plane).  At one point, I honestly believed that if I had to listen to her whine on the phone one more time, I was going to grab the thing and go throw it out the door of the plane!

Around 5:00pm, when we thought we should be close to taking off, the captain made yet another announcement.  Now we weren't scheduled for takeoff until 6:00pm.  I'm sure you can imagine the reaction of the passengers!  In the end, we did not take off from Belfast until 6:55pm, six hours after the flight had been originally scheduled to take off.  And even after all that waiting, Keeghan still cried as we took off because he didn't want to leave Ireland.  He said he was afraid he'd never see it again.  Which made me cry.

So, here's more comic relief for you.  Once the flight took off, the flight attendant made an announcement that everyone would be given a 5 Euro voucher to use at the Sky Cafe on the flight.  Food and drinks were not complimentary on this flight normally, but everyone was given these vouchers for their patience.  Whatever.  We were in row 9 of the plane, so we thought we'd get drinks pretty quickly (keep in mind, we'd had nothing to drink since we boarded the flight three hours prior).  It was only a 55 minute flight though, so you'll never guess what row they made it to before we started to descend and they had to stop?  Yep.  ROW 8!!!!  They then had to lock down the beverage cart.  As we were descending, a flight attendant came by and literally shoved a bottle of water and a pack of Pringles at each of the kids!  Unbelievable.

Ok, so now we're on the ground in London.  We're in row 9, so we're thinking we'll get off the plane fairly quickly.  We've already stood up, have our bags ready.  All we want to do is get off the plane, find the wheelchair for Keeghan, and get running.

"Ladies and gentleman, due to a problem with the gate, all passengers will be departing the plane AT THE REAR of the aircraft."

You've GOT to be kidding me!  So now we're nearly last to get off the plane.  We disembark only to find that we are being loaded on to shuttle buses that will take us to the actual terminal.  We come off the bus, look for a wheelchair, and find . . . nothing.  We start walking thinking maybe we have to get to the upper level to find it.  The escalator is broken (of course), so we walk upstairs.  Still no wheelchair.  

The terminal is a mob scene because of all the canceled flights throughout the day.  It took us what felt like forever to find where to go to get to Terminal 4.  We ended up taking a subway train, only to arrive to another mob scene.  We find a British Airways employee and ask her about our flight - is it delayed, has it take off, what do we need to do?

"Oh, that flight's closed." (insert chipper British accent here)

Shannon (rather hysterically): "What does that mean, the flight's closed?  The doors are closed but it's still on the ground?  It's taken off?  WHAT?"

Chipper BA employee:  "It's closed and getting ready to take off."
Then nothing.  Just blank stare.

Shannon (not just rather hysterically this time, but truly hysterical):  "Don't just STARE at me!  Tell me what we're supposed to do now then!"

Mental images of the carnage I wanted to cause at that point still flash through my head when I remember this girl!  She then, a little nervously, directed us to the Customer Service desk.  We went over there, got in line, but then saw another BA employee who looked somewhat more intelligent (not a far reach) than the previous one.  By this time Keeghan and I were in tears.  It has been 14 hours since we left our hotel that morning and we were exhausted and frustrated.  The new woman told us she was going to get a duty supervisor for us.  

We waited.  

And waited.

Then waited some more.

Finally, we got up to the Customer Service desk and told the young man there what was going on.  We told him that some woman had told us she was going to get us a supervisor, but that she had then disappeared, never to return.  I was really concerned about Keeghan at this point because he was so upset.  I explained my concern, and the guy managed to get us hooked up with the woman who had disappeared and taken to a small lounge not far away.  It was supposed to only be for first-class passengers, but she snuck us in two at a time.  Finally we had a couch where we could lay Keeghan out and just chill a bit.

For the next two hours we camped out on this couch while the British Airways people figured out how to take care of us.  We lucked out in that one of the women helping us, a lady named Doris Walsh, was actually from Alexandria, VA originally.  She made a comment that she wished she could come with us to DC and then explained that she was a military brat, and that her parents live in Alexandria.  She and a supervisor, Jane Enright, got us re-booked on a flight for the next morning, got us a hotel reservation and arranged for a car to take us to the hotel and pick us up again in the morning.  Jane even sent off a fax requesting that we be upgraded to business class for the flight.  Things were starting to look up.

Hah!  Not so fast . . .

It took a while to find the car that came to pick us up.  Doris had the license number of the car, and Mike found the car sitting outside the airport, but couldn't find the driver.  They actually passed each other twice in the terminal before we finally hooked up and got in the car to head for the hotel.  By this time it was nearly 10:30pm.

We arrived at the hotel, got in line to check in, and waited.  Again.  Finally we got to the desk, gave our voucher from British Airways to the gentleman, and he informed us that we were getting a room with one bed.  Here is where Mike lost it!  
Mike:  "But there's four of us."

Hotel Clerk: "The voucher is only for one room and all I have is a room with one bed."

Mike:  "How are we supposed to sleep four people in a room with one bed?"

Hotel Clerk:  blank stare

(what is WITH the blank stares in London, that's what I want to know?!)

In the end, we said "Fine!" and took the room.  The hotel was all out of rollaway beds, but the clerk said he could send extra pillows and duvets to the room.  We went up, dropped our bag (which were only our carry-on bags as our checked luggage were somewhere in Terminal 4 at Heathrow, hopefully not lost forever).  

Then we went down to the restaurant to get something to eat.  Even though we were being picked up the following morning at 7:00am, and it was almost 11:00pm, we hadn't eaten dinner so we HAD to go eat.  We got to the restaurant, which was a buffet, and started to fix our plates.  Another hotel employee comes up and asks for our meal vouchers (which we had gotten from the clerk at the front desk).  Mike pulls out the envelope with the vouchers in it and hands them to the guy.

Hotel guy: "There are only vouchers for two people here."

Mike (yelling): "Oh, so now only two of my family get to EAT?  First only two get to actually sleep in a BED, and now only two get to EAT?!"

Hotel guy (scared I think):  "No sir, go ahead.  Please."  Then practically runs away.

So we ate.  It was foul, but it was food.  We went back up to our room and, lo and behold, there were extra pillows and two thin blankets outside our door.  So Mike and I set up camp on the floor at the foot of the bed, and the kids shared the bed.

Keep in mind here that we are having to sleep in the same clothes we've been wearing all day because we don't know where our luggage is.  Yay.

Wake-up call comes at 6:00 the next morning.  Mike and I shower.  I have no make-up, hair conditioner, curling iron, deodorant, etc.  Thank goodness I had a brush in my carry-on bag!  We put back on the same clothes we had worn all day the day before.  We were not feeling at all optimistic this day, but we trudged on and made it downstairs to meet the car that was scheduled to pick us up at 7:00am.

It's amazing what a difference a day can make!  Not a thing went right the day before.  This time, everything went right.  Our car was on time picking us up.  We got to the airport, went to the desk we had been directed to go to and found that we HAD been upgraded to business class for our flight.  We got a wheelchair to take Keeghan to the gate (mainly because it was so far away).  They fast-tracked us through security, so essentially we were taken to the front of the line and pushed through ahead of everyone else.  They authorized us to go into the British Airways First Class Lounge, where there was complimentary food and drinks.  They even arranged a buggy (airport transport) to take us from Gate 1, where the lounge was, to Gate 23 where our flight would be boarding.

More with the funny now . . . we were told that the buggy would only hold 3 people.  So Mike took off on foot for the gate.  When the buggy arrived to pick the kids and I up, the driver said, "Oh, we could have fit him on!"  So I told Maxx, who was sitting in the front with the driver, to watch for Daddy.  We got all the way to Gate 22 before we caught up with him!  Whoops!

We arrived at our gate and, as instructed previously, checked to see if our bags had been found and put on the plane.  THEY HAD!  Life was good!

We boarded the flight, got in our luxuriously big seats, were served drinks before takeoff . . . it was grand!  We watched movies, tv shows, played video games, listened to music, and even had afternoon tea!  Keeghan and I talked on the flight about how, now that it was over, it was worth all the hassle of the day before just to fly home in that kind of luxury!

So now we are home.  The pets are happy to see us, the dog was happy to get out of the kennel (although she got incredibly pampered and spoiled by all the people that just LOVE her there), we are finally rested and washed.  I will say that I miss Belfast.  I think it is true that, when you visit Ireland, you leave a little bit of your heart behind.  We will all forever miss the North of Ireland, as Jim called it.  But we will go back.

In the meantime, I must learn to make Irish soda bread, scones, and potato bread, and I must find where I can buy Irish bacon, sausage, clotted cream and blackcurrant jam.  Absolutely must.

I will be slowly adding pictures to this narrative, as well as to the new "IRELAND" tab at left over the next few days so make sure when you visit to scroll down to see if anything new has been added.

Cheers!

S.

7 April 2008
Just a quick note to everyone - we are home.  Finally!  I have a TON of things to type about, but honestly?  I need a shower.  We ran into a little . . . snag, if you will . . . on our way home.  It's called London Heathrow Airport.  Short story - we missed our flight home last night.  Trust me, I have a very long post to type up, but right now I just need to chill.  So to give you a little idea of what is to come, I'll just tell you that there will be . . .

   the W5
   the Black Taxi Tour of Belfast
   Me bawling my eyes out thanks to a taxi driver that will forever be a saint in my eyes.
   Many hours sitting on the ground in an airplane, with the most annoying child in the world sitting       behind us.
   A missed flight.
   Sleeping on the FLOOR of a hotel.
   and finally, some serious luxury!

Much, MUCH more tomorrow when I am well rested and can type.

S.

3 April 2008
How do you start an entry about a little boy's dream coming true?  Just about everything I think to write sounds trite, insignificant.  Keeghan put it into words a little bit on the way home this afternoon.  He says that he had to fight back tears when he first saw the Giant's Causeway.  It helps that Ireland was smiling on us, with blue skies, sunshine and a soft breeze to make everything sparkle!  To finally see the stones, the columns, the waves breaking . . . unbelievable.  It really was his dream come true!

We woke up this morning early so that we could get up to the Causeway and have as much time as we could there.  We actually arrived at the Causeway around 9:00am - an hour before the tour office even opened!  But that wasn't a problem as we had not had breakfast yet, so we walked next door to the Causeway Hotel and had breakfast.  By the time we were finished it was nearly 10:00am, so we headed back toward the tourist office.

On the way there, we spotted these three cats wandering around the area.  They seemed friendly.  In fact, there was a black cat that seemed to be following us.  Maxx and Keeghan, being the cat lovers that they are, kept trying to make friends with this little cat, but to no avail!  The little tease would get within a couple of feet of Maxx, looking at her very curiously, but would not let her near it!




We decided to take the shuttle bus from the tourist center (which was at the top of a hill) down to the Causeway proper since it was a pretty big hill and we didn't want Keeghan getting tired out before he even got to see anything.  The shuttle dropped us right in front of the causeway.  We came off the shuttle and immediately Maxx and Keeghan headed for the stones to climb on!  I don't think there was an inch of the Causeway that we didn't climb on!  After climbing on the stones for a while we decided to walk for a bit.  A bit!  Yeah, right!  It was probably a .5-mile walk from the Causeway, up the side of the cliff, to a lookout point across the bay.  And Keeghan, trooper that he is, walked the whole thing.  There was absolutely nothing that he wasn't going to do today!




When we made it back down the cliff to the stones again, we all climbed out over the larger portion of the stones.  After climbing over all of that, we decided it was time to say goodbye to the Causeway and head for the Carrick-A-Rede rope bridge, a rope bridge that spans a chasm 80 feet deep, which is about 7 miles from the Causeway.

It's been a joke for a while that I wasn't going to go across the bridge, that I was only going to watch Mike do it.  The thing is, I'm not afraid of heights, so I had no problem crossing it!  But it was fun to play like I wasn't going to up until today!  In the end, we all four crossed it.  Maxx, being the fearless thing that she is, even leaned over the rope to look down at the water (which did make me a LITTLE bit nervous).  The walk from the parking lot to the bride was 1 kilometer, so by the time we walked to the bridge, crossed it, came back across, and walked back to the car, the kids were EXHAUSTED.  But oh, we weren't finished yet!

Next it was off to Dunluce Castle, 10 miles back down the road.  Unlike Carrickfergus Castle that we visited yesterday, Dunluce Castle is completely in ruin.  But it was still a beautiful sight.  Luckily you could park right by the castle, so we didn't have to hike anywhere!  The only tricky bit was a spiral, stone staircase that led up to one of the towers.  The steps were pretty narrow, but once again, Keeghan wasn't letting anything stop him today!  He went to the top!

Finally, after all of that, we made one last stop - this one more for Daddy than for Keeghan.  We stopped at the Old Bushmill's Distillery so that Mike could buy some things from the gift shop.  We didn't want to take a tour of the distillery, which is a good thing as it was too late in the day to do that anyway.  We only wished to shop.  Once finished there, it was time to head back to Belfast.

Because we hadn't eaten since breakfast, we were famished by the time we got home.  Because today was Keeghan's Big Day, we let him pick where we would eat for dinner.  He decided he wanted Asian food.  Last night we had Italian, so why not Asian tonight, right?  We asked the hotel concierge where the nearest Asian restaurant was and he suggested a place just a few blocks away called Fat Buddha.  I can't believe that we actually walked - VOLUNTARILY - to a restaurant, but we did.  It's a good thing we did too, because the food was incredible!  Honestly, best Asian food I've had in years, possibly ever!  The hostess came by our table and asked if everything was alright.  We raved about the food.  Mike made a comment to her about having to come all the way from the States to Northern Ireland to find fantastic Asian food!  Needless to say, I think she was quite pleased with the review!

It's been an incredible day, without a doubt.  I have to admit that I don't know what we would do with out Maggie the GPS Lady!  She has got us to many places that I don't think we would have found - or at least not so easily - without her.  One thing we've discovered about Northern Ireland is that there aren't many street signs.  If you are looking for a specific street, you could have a very difficult time finding it without a map or a GPS.  Maggie has done very well by us on this trip, with only one hiccup.  When we left Carrickfergus Castle yesterday we couldn't get a satellite signal at all, so we had to find our way back to the hotel on our own.  The castle was only 11 miles away though, and once we got ourselves to the city centre (downtown), we knew exactly where to go.  The 60-mile trip back from the Giant's Causeway today would have been much more difficult!  So I do have to say that I will miss that gal Maggie once we leave!

Just so everyone knows, I took some video at the Causeway today that I will try to get uploaded somewhere for everyone to view, and Mike took over 400 pitures today alone.  Once we get back home next week and have a faster connection, I will get to work uploading everything for everyone to see!

Tomorrow we are going to the W5, and then more shopping!  Woo hoo!

S.

2 April 2008
What a day it has been!  We started off the day a little later than we had planned, so we missed the free breakfast provided by the hotel.  Not a problem though as I was wanting to venture out and try something new for breakfast anyway (the hotel serves the same food, buffet-style, every day.  Since we weren't scheduled for our guided tour of Carrickfergus Castle until 2:30pm., we decided to take advantage of the morning and walk around a bit. We thought it might be difficult to find a place for breakfast that wasn't out of the way - boy were we wrong!  Just half a block from the hotel we stumbled upon a little café and had a fabulous little breakfast.  I had Devon tea, the kids each had croissants with jam, and Mike had an egg served with one rasher of bacon, one sausage, along with potato bread AND soda bread - and everything was delicious!

After that we headed toward Queen's University.  Our hotel is only 3 blocks from the university, and we wanted to check out the school - the architecture is beautiful - as well as do a little shopping at the university store.  The kids each chose sweatshirts for themselves, which will be fun to wear back in DC.  It was still a bit early still when we finished there but we decided to head toward Carrickfergus anyway.

After dropping our purchases at the hotel, we loaded up the car with cameras and Maggie - my nickname for the GPS - and headed out.  It was only 11 miles to the castle, so it didn't take us long at all.  We parked at the castle, walked around the outside and took some pictures, and then decided to walk around the town of Carrickfergus a bit as we had about an hour and a half to kill.

The beautiful thing about Northern Ireland is that you find the best things when you just walk.  Pick a direction, go there, and you're likely to find something special.  We found Saint Nicholas' Church, built sometime around 1182.  As an American, it is hard to fathom anything being built over 800 years ago, so to walk around this church was . . . very moving.  There was a small cemetery on one side of the church, as well as grave markers around the perimeter of the church.  Maxx was very touched by some that she read because they were the graves of infants that lived less than a few months, and died over 100 years ago.  Truly a magnificent find considering we were randomly choosing streets to walk down!

Before we caught sight of the church and were distracted for a while, we had seen a store whose sign said something about cancer assistance.  We wanted to check it out, so after we left the church we circled back around the corner, headed for that store.  On the way we saw yet another small store that advertised providing assistance to people with cancer.  Of course, we HAD to go in, right?  It turns out it was sort of like a Salvation Army - all used items, donated to the store, with the proceeds going to help people with cancer.  We struck up a conversation (an easy thing to do with just about anyone in this area) with the lady working the cash register.  We told her that the reason we were in Northern Ireland was because Keeghan has cancer, and Make A Wish had granted his wish to come here.  Maxx had chosen a couple of things that she wanted to buy - a small flower in a shadow box-style picture frame, and a small ceramic jewelry box with an angel on top.  After bagging up her purchases, the lady reached under the counter and pulled out a small box with an Irish linen handkerchief in it, which she handed to me.  It was very touching!  She wished Keeghan the best, and wished us all a happy remainder of our holiday.

After that, we continued on looking for the FIRST store we had seen.  It was also a store where the proceeds went to help those with cancer.  Since Maxx had found a couple of real gems in the first store, we took our time looking around this place.  What we found was so amazing.  We were actually on our way out of the store, not having purchased anything, when Mike looked over against a wall and saw these two small pencil sketches in simple wooden frames.  They can't be more than 5x 5 inches in size.  In one is a sketch of a small girl, maybe 3-4 years old, and she looks like she is drawing something.  The other picture is a sketch of a boy, this one probably no more than 2-years-old, and you only see him from the back, but he looks like he is closely examining something on the ground.  The age difference of the children in the pictures looks to be the same as the age difference between Maxx and Keeghan, and to have the little girl drawing (Maxx is the artist in our house) was just perfect!  I can imagine that the little boy, like Keeghan at that age, is probably examining some bug that he found.  They truly are precious pictures.


We'll start with Keeghan:

Carrickfergus Castle:  Today we got a guided tour of the Carrickfergus Castle.  It was so much fun to learn about all the history that went on, and the people that lived in this one castle.  Something that made me a little angry was seeing that the castle had graffiti on it.  Who would do that to such a great place?  One thing that I thought was cool to learn was that the castle was built to fit right on top of the rocks by the sea.  How cool!  The lady shoed us around and let Mackenzie, Daddy and I try on armor.  So, today was pretty much an overall good day.

And now from Maxx:

Today we went to Carrickfergus Castle.  Our tour guide's name was Mrs. Jackie (pictured here with both kids).  The castle and the view from the pier was breathtaking.  I had loads of fun.  We got to learn more about the castle.  The person who built the castle was named John de Courcy.  It was a lot of fun.  Afterward I got a blue yo-yo at the gift store and a Celtic heart necklace - it is very beautiful.  Great day!

So there you have it!  Another great day.  Tomorrow, the day Keeghan has waited for since he was 7-years-old and first learned of it, we are off to the Giant's Causeway!

1 April 2008
Today we headed out of Belfast for the first time since we arrived in Ireland.  We were scheduled to go to the Ulster American Folk Park.  It was approximately a 74 mile drive.  Thank goodness Darren from Make A Wish was nice enough to loan us his GPS for the week, and wow what a stress-saver it was!  We got to the park with no problems, and by the time we got there it almost seemed normal to be driving on the left side of the road.

Little side story here - when heading out to the car this morning, Mike automatically went to the left side of the car to get in to drive.  He laughed it off and said, "Ok, that's mistake #1."  Later in the day, I went to get in the car (on the left side) and said, "See, I remembered to get in on the right side!", meaning of course, the "correct" side.  My sarcastic little son, however, said "Actually, that would be the left side."  Hardy har har Keeghan!

Back to the drive though . . . Mike did a fabulous job driving, only getting honked at once, and that was for driving too slow in the fast lane (because the fast lane here is what we're used to being the slow lane).  Once he got that figured out, all was smooth.  I know that he was very happy to get back to the hotel this afternoon though, just to be finished driving!  The scenery here is exactly the way you would thing, i.e., GREEN, but different in a way also.  When you see books about Ireland, you see these fabulous pastoral scenes with sheep, and old gents walking across the green hills.  Or you see pictures of pubs, which are always nice also.  What you don't see is the road construction, modern shopping centers (or centres if you will), new houses, etc.  Ireland is really not all that different from parts of the US.  But then every once in a while you pass something that is obviously very old and you realize that you are in a country that has a much longer history than our own.  It's very cool.

The only real downer to the day was that by the time we arrived at the Folk Park, the weather had turned a bit ugly.  Actually, it had turned really ugly!  It was cold and rainy, which was fine.  We don't mind that.  But the wind!  Holy cow - it was blow-Keeghan-over windy.  The majority of the park was outdoors, and no one was really up for getting blown around and wet, so we walked around the indoor part of the museum.  There was quite a bit there to read, along with displays depicting Irish immigrants.  One interesting little fact that we read was that over 15,000 vagrants and criminals were "sentence to sail" to America!  I told Mike that maybe I don't want to trace my ancestry after all!  I may find out something about my great-great-great-grandparents that I don't want to know!

The gift shop at the park was closed for the day (to take inventory), so I didn't get to buy anything.  They had SO many books about the Irish emigrating to the US that I would have loved to buy.  But that's ok - I guess it is more money I have to spend in other places, right?  I'm sure the kids will be thankful that I didn't load up on educational material!

All in all, we were only at the park for about an hour.  But it was a good hour, and we stopped at a cute little place in Omagh for lunch - The Sperrin Restaurant - on our way home.  The picture here was taken from the parking lot of the restaurant.  I have to write about my lunch . . . it's amazing how a dish that you have all the time in the States can be made, and taste, so differently in another place.  I ordered potato skins, which said that they would come with bacon, cheese, and the restaurants own sauce on them.  Sounded pretty standard, other that the sauce.  It was anything but standard!  The potatoes were layered in the middle of the plate, rather than served as individual, separate skins like we do at home.  The bacon, which was Irish bacon (but just called "bacon" here), was layered in between the potatoes, along with the sauce and the cheddar cheese.  The whole thing was served on a bed of greens.  It was amazing!  I almost didn't order it because I'm not a big potato skin fan, but I wanted something small and appetizer-ish for lunch instead of something big.  What luck was it that I discovered a whole new way to eat an American menu standard!

We are now doing what is becoming our afternoon habit here in Ireland - hanging out in the lobby of the hotel.  Our rooms are very small - two twin beds, one chair, and that is about it - so it isn't very comfortable to hang out there.  Also, we have two separate rooms that are not adjoining, so it gets to be a pain running back and forth between them.  But the hotel has this huge, open lobby where you can grab a couch and a table, order food and drinks, listen to music, and just watch the world around you. Also, it is the only place where I can get internet connection!  The kids bring their books downstairs and read, Mike messes with his camera while enjoying a pint, and I sit here and type.  It's lovely!  We are heading to a pub next door for dinner in a while.  Until then, we'll likely stay right where we are and just relax.  Because, while there is so much to see and do, when in Ireland, you should also kick back and just enjoy the fact that you're in IRELAND!

I apologize for not uploading many pictures right now, but it is incredibly slow to do here.  I want to tell everyone about everything, so I'd rather spend the time typing than struggling to upload pics.  Rest assured this site will literally explode with them when we get back!

Tomorrow we are off to Carrickfergus Castle!

S.

31 March 2008
Day One - and oh what a glorious day it's been!

Besides feeling completely rested - a big change over yesterday - it has been just a fabulous day.  We started off the morning by having breakfast in the hotel.  Our hotel provides a breakfast buffet every day, which is very nice - it saves us some spending money!  Maxx has decided that she does not like Irish scrambled eggs, but she loves Irish soda bread!  She also loved having sautéed mushrooms with her breakfast, to which I have to say, um, ew.  After sleeping the proverbial 'sleep o'the dead' for 13 hours, Keeghan woke up starving, so he enjoyed a little bit of everything that the buffet had to offer!

After breakfast, we took a taxi into downtown Belfast (which is really only about a mile from our hotel) to ride the Belfast Wheel.  Our taxi driver was incredibly nice.  I have to say that everyone here is beyond nice.  The taxi driver answered all of our curious-tourist questions about street signs, the crazy zig-zag lines in the road, and he asked a few of his own of us.  One funny thing was that, after we told him that we live in DC, he asked, "Is it true then that you can't vote if you live in the District of Columbia?"  We explained that we don't have congressmen, but that we can vote for President.  I said to him, "It's funny that we don't have our own congressmen or representatives when we live in a town where you can't swing a stick without hitting a politician."  He replied with, "I know a few that would give anything to be able to swing a stick and hit a politician!"  We thought that was hilarious!

He dropped us off in front of the Belfast Wheel, which sits right beside Belfast City Hall.  The wheel was this fabulous big ferris wheel-type ride, but with cars that are completely enclosed and climate controlled.  We were able to press a button in the ceiling that turned on a 15-minute commentary that described different sites that could be see from the wheel.  It was truly a good time.  We took pictures as well as some video.  So far, in the past 24 hours, we have taken over 100 pictures!  It's going to be hard trying to narrow down which pictures will end up here on the website and which I will just keep for us!

After the ride on the wheel, we walked a few blocks to the Castlecourt Mall.  Having a 14-year-old daughter, we HAD to go to the mall, right?  What was really funny was that the first two things we bought were a pack of pony-tail holders for Maxx at Claire's (one of her favorite stores in the mall at home), and a fingernail clipper for Keeghan at Boot's.  Mike was making jokes saying, "THIS is what we bought in Ireland - a fingernail clipper and some ponies!"  After walking through the mall for a while we headed out into Belfast proper for a walk.  One hilarious thing that happened was that we passed this alleyway that looked like it had shops in it.  So we headed down that way and ended up on this little backstreet that had an entire row of adult stores!

MissTique - hottest adult store in Belfast!

Holy cow - it was so funny!  Even more funny was the wedding apparel store just across the street from the adult stores!  Funny!

We found a couple of places that we will definitely be going back to at the end of the week to buy souvenirs and gifts for friends.  Keeghan tried on a classic Irish hat that I am SO going to buy him before we leave.  He looked like a little old Irishman in it!  We found a little pub close to the mall to have lunch at.  So far, the food here had been incredible.  The Irish may not be known for their fancy food, but the food that they do eat is very good.  I had sausages and champ (which is basically mashed potatoes with green onions mixed in).  Mike had steak & Guinness pie.  The kids had something small each, and then we all shared everything.  It was wonderful!

We then started walking toward this one pub that we'd heard about (and seen on Food Network!), The Crown Bar, only to find that they don't allow children there!  So we went in, used their lavatories, and left!  But we did take pictures of the kids in front of it!

From there, we started heading toward our hotel.  Just before our hotel we passed Queens University, so we went into their bookstore.  Maxx, being Maxx, bought a book there.  Of course, I bought a couple for Keeghan and I as well . . . just because.  Tomorrow we're going to head down to the University to take pictures, and to look for souvenirs.

We got back to the hotel and decided to hang out in the lobby - sampling some Irish beer (Mike and I), and updating the website.  The kids have been reading (Maxx), doing puzzles in a puzzle book (Keeghan), and generally just enjoying a little relaxation.  We are now getting ready to head to The Guinness Pub next door for dinner, which I'm sure will be absolutely fabulous.

More of our adventure tomorrow - when I can purchase more wireless time!

S.

30 March 2008
Well, we made it here.  And we're exhausted.  It's been a LOOOOOOONG past 24 (or so) hours.

The limo arrived yesterday right on schedule.  In our excitement to surprise Keeghan, Mike and I decided to go sit at the Visitors Center on base to wait for the limo.  We knew we were going to have to sign the limo onto the base, so we figured we'd save the driver from having to call us.  We saw the car drive up to the gate - it was a big, black stretch limo.  And then we saw it drive through the gate and head onto the base.  WITHOUT having to be sponsored onto the base.  In other words, the limo was headed toward our house without us!  I immediately got on the phone and called Maxx.  I told her what had happened and told her to be on the lookout for the car.  We expected to pull up in front of our house and have the limo already there, but it wasn't.  Maxx had Keeghan standing behind the front door with his nose in the corner so he wouldn't see anything until we got home!  The poor kid had no idea why she made him do that, but he played along!  Just after we got home, the limo driver called me to say he couldn't find the house.  In the end, I got the driver to the house where Mike managed to catch a picture of Keeghan's face when he saw that it was a limo, and not an airport shuttle, picking us up.  

The ride to the airport was fun.  The kids loved riding in the limo, although Maxx played Seatbelt Police all the way there (gee, I wonder who she gets THAT from?).  No one was allowed out of their seatbelt for more than a moment.  We arrived at Dulles all too soon though and had to say goodbye to our limo.

The wait to get on our flight went by quickly.  I have to say that I wasn't overly thrilled with the airline or the flight from DC to London.  The flight attendants were . . . what's the word I'm looking for . . . useless?  Maybe that is a little harsh.  They were not very pleasant at all and we were packed in like sardines, so the least bit of unpleasantness from those that are supposed to be proving a service is beyond annoying.  It didn't help that there was some guy about 5 rows in front of us that wanted to (loudly) carry on a business meeting with his colleagues for over half of the six-hour flight.  He kept yakking even after all the lights were turned off on the plane!  Needless to say, no one got much sleep on the flight.  In fact, Keeghan and I dozed a bit, maybe getting a couple hours of sleep.  Maxx and Mike didn't sleep at all.

But, we finally made it to London at around 7:30am.  Our layover there was about 3 hours, so we found a place to have a good English breakfast.  I have to tell a funny story about the place where we ate breakfast.  Keeghan wanted something to drink, but he didn't want any caffeine.  So he asked if he could have a Sprite.  The waiter looked a little confused and said, "We don't have that."  He then listed off the beverages they had that were caffeine-free.  One of them was lemonade, so Keeghan ordered that, expecting something like the lemonade we have in the States.  When it arrived it was a clear, carbonated soda that tasted exactly like . . . Sprite!  We got a good laugh out of that!

After breakfast we headed for the gate where we would board our Aer Lingus flight to Belfast.  That flight was very quick - just 55 minutes.  We came off the plane, almost immediately found Darren (pictured here with Keeghan), the representative from Make A Wish.  He was absolutely wonderful - he chatted with us while we waited for our bags (which all arrived safely - yay!), he helped us get our bags to the hire care (that's a rental car for you back home) and he led us all the way into town to our hotel.  In fact, he took us on a more "scenic route" into Belfast which was lovely.  The sun was shining the whole drive, and then just minutes after we arrived at the hotel it began to rain!  I do believe Ireland was welcoming us!  I had to force myself to look out the windows rather than at the road though because the whole driving-on-the-left thing was a little unnerving.

By this time Maxx had completely hit the wall.  She missed the entire drive from the airport to the hotel; she passed out in the backseat of the car almost as soon as her seatbelt was on.  When we got to the hotel, she passed out on her bed for another couple hours.  Amazingly Mike, Keeghan and I have managed to stay awake.  We're getting ready to head out to find a place for dinner and then everyone is going to crash out.

There have been a few snags that I'll have to explain more about tomorrow.  One of which is the fact that I have to pay for the wireless service here in order to update the website.  It is about $12 US per hour.  That is a little steep, so I may not get to update here as often as I like.  We'll see.

Ok, everything is becoming blurry now, so I need to sign off.  More - MUCH more - soon.

S.

29 March 2008
Can I just tell you that this is the SLOWEST day EVER.  Seriously.

The limo is supposed to arrive at the base at 3:30pm.  That is one hour from now.

One. Very. Long. Hour.

Mike and I feel like we've been awake for two days already.  Of course, it doesn't help that a (very well-meaning) friend decided to call us and wish us a great time in Ireland at 0435.  In the MORNING.  (Prepare for payback is all I have to say).

Keeghan still doesn't know about the limo.  But after being excited all day, and finalizing the packing, we are now just . . . spent.

The good news is . . . it's now only 55 minutes to go!  Woo hoo . . . time flies when you're typing.

Oy.

S.

28 March 2008
1 Day to IRELAND!!!

I honestly can't believe we're actually leaving for Ireland tomorrow!  Keeghan's Wish Counselor came to the house yesterday to deliver our itinerary, spending money, and some fun stuff for the kids to have on the airplane.  I know some of the activities planned for us, but because I am planning to update this site while we are there I don't want to give away too much!

Our days are planned out for us, but not always the entire day, so we will have free time to do some exploring.  We are going to be in the same hotel in Belfast all week, which I'm very happy about.  We'll be able to "move in" so to speak, get unpacked, and have a home base for the week.  Some days we will be driving as far as 75 miles to get to our planned activity though.  We can't wait to see some of the Irish countryside!  Of course, we'll be driving on the wrong side of the road, in a car with the steering wheel on the wrong side of the car . . . yes, it's going to be interesting!

Keeghan still doesn't know that it is a limo coming to pick us up tomorrow!  It's going to be great seeing his face when it shows up.  Our flight leaves DC at 7:45pm tomorrow and we will arrive in London at 7:50am local time (which is 2:50am DC time).  We have a three-hour layover in London and then will fly on to Belfast.  We arrive in Belfast at 12:10pm local time (7:10am DC time).

Ok, I have to go pack.  The kids are packed (except for the laundry that I am still doing for my wonderful teenage daughter); I just need to get myself packed.

Next update - FROM IRELAND - should be sometime Sunday afternoon!  W00t!

S.

26 March 2008 - the excitement builds!
Squeeeeeeee . . . Keeghan doesn't know this, but I found out today that we are being picked up at the house and taken to the airport in a limo on Saturday!

The Make A Wish excitement is building . . .

S.

25 March 2008
It's always good to get out with friends!  I took the kids, along with their friends Caitlin and Ryan, bowling today.  It was good to have an afternoon of kids just being kids.  Maxx and Ryan bickered as if they were the brother and sister, like they always do.  Caitlin and Keeghan were the mature ones . . . as usual!  It was pretty funny.  I know that my dear friend, and Caitlin and Ryan's mom, Pam is reading this and rolling her eyes!  She knows exactly what I'm talking about with these four!

It was the first time that Keeghan has really been able to hang out with Ryan in a couple of months, so it was very cool to watch them.  Keeghan did very well bowling, even surprising himself I think!  I was a little concerned because he's right-handed, and his new port is on his right side, but he said it didn't bother him at all.  Luckily Keeghan is one of those kids that won't do something if it hurts, so I can trust him not to overdo it.

While the kids bowled, I sat and made packing lists for the Ireland trip.  As of right now we don't know anything more than what time we are flying out on Saturday.  I received an email from Keeghan's Wish Counselor today saying that she is just waiting for the final itinerary from the UK chapter of Make A Wish.  Once she has that we will schedule a time to get together and get everything from her.  I have to admit that I am anxious to see what all we will be doing while there.  Not anxious in a bad way; just excited.  Keeghan is starting to show his excitement too.  For a long time, whenever the Ireland trip was mentioned he seemed like he was sort of apathetic about the whole thing.  Looking back, I think maybe he felt like it wasn't ever going to happen.  Now that the tickets are booked, he's finally free to believe he's really getting to go.

So hopefully by tomorrow I will have more details for everyone.  Keeghan is having another gradient echo scan at CNMC tomorrow afternoon, and then he has chemo on Thursday.  After that it is nothing but packing and cleaning house (so I don't come home to a wreck).

4 DAYS TO IRELAND!

S.

23 March 2008
It's been a long time since I last put a picture of Keeghan's bead strand here for everyone to see.  When we found out in December that his tumor was coming back, we decided to start a new "leg" on the strand.  After all, this is a new leg of the journey, right?  It's still one long (over 15') strand of beads; we just stopped adding to the old part and started over with the new beads he's earned since December.

So in this picture, what is wrapped around Keeghan's neck is the old portion.  It's actually wrapped around him about 6-7 times!  What he's holding up between his hands are the beads from the past three months.  It really makes you realize how much he's been through.

I hope everyone has enjoyed their holiday.  Happy Easter!

21 March 2008
I find myself, once again, at a loss for words.  I've tried three different times to start this post, and I end up deleting and starting over.

We attended Kiana's funeral today.  It was a beautiful service, which is fitting as she was a beautiful little girl.  The one thing we all remember about her is that she had this smile . . . just an amazing smile . . . that lit up a room.  She truly was a bright light in the world.  At one point during the service, two women from Kiana's church sang "This Little Light of Mine."  It was a perfect song for Kiana, but it tore me up.  Many people got up to tell stories of Kiana that brought smiles and tears, all at the same time.

I have to say that my daughter, once again, amazed me.  She loved Kiana so much, and she wanted to attend the service today so she could make sure that Kiana's mom, Cheryl, was ok.  The funeral was open-casket though, and Maxx really didn't want to see Kiana that way.  But she was equally determined to see Cheryl.  So after the service, we waited in the lobby of the funeral home until almost everyone had filed past the casket.  Cheryl was still sitting in the front pew of the chapel.  Mike took Maxx in and, as Mike tells it to me, as soon as Cheryl saw Maxx they both burst into tears.  Keeghan and I had followed a few feet behind into the chapel, so as soon as we got inside all I saw was Maxx with her head on Cheryl's shoulder sobbing.  It was a powerful moment for all of us.

We decided not to attend the graveside part of the service.  That is a private moment that I wanted to leave to the family.  I think overall Maxx and Keeghan handled the day very well.  They even handled seeing some of the staff from Walter Reed well (considering the fact that Maxx dislikes most of them almost as much as I do).  I'm happy that we were able to go and pay our respects to Kiana, and to her family.  Still . . . these are experiences I wish I could save my kids from - that I wish I could save everyone from.

Rest in peace sweet girl.

S.

20 March 2008
My apologies for no posts in a few days.  I have been dealing with a sinus infection for a couple of weeks now and finally got into the doctor yesterday.  I'm hoping these drugs they gave me kick in soon because I'm seriously tired of feeling like I'm drowning in my own head!

Keeghan had his first blood draw at CNMC today since having his PICC line removed.  It went very well.  Mr. Bruce in the lab stuck him one time, and one time only, thankyouverymuch!  Once again the staff at CNMC earn high praise!  When Keeghan was being treated at Walter Reed, they would access his port even if all he needed was labs.  At CNMC, they only access the port if he is getting an infusion.  Their feeling is that the more the port is accessed, the more opportunity there is for infection.  Keeghan is good with that because it's a much smaller needle used to draw blood from his arm than the one used to access his port!

For the first time since starting treatment at CNMC, Keeghan was actually wide awake and in a good mood while we were there.  He's normally a pretty good-natured kid.  The problem has been that his appointments are always around 8:30 or 9:00am and he normally doesn't get out of bed before 10:00am!  I am pretty laid back on homeschooling in that I let the kids sleep in and we just do work later into the day.  Sometimes the kids are still sitting at the table doing schoolwork when Mike comes in from work at 4:45pm.  I'd rather they be awake and alert than sleepy and grumpy!  So the staff at CNMC see Keeghan in full-on tired, grumpy mode most of the time.  It was nice to have him at the clinic acting like what we know as "normal Keeghan."

We will be attending services tomorrow for the kids' friend Kiana.  Maxx is pretty anxious about it, yet determined to be there.  It's going to be a rough day.

That's about it for now . . . other than NINE DAYS TO IRELAND!

More tomorrow . . .

S.

17 March 2008
Lots to say today, but I want to start with a little story about my precious daughter . . . (you may have to scroll WAY down to 22 May 2006 to understand all of this).

We have this joke about how every time Keeghan pukes, an angel gets its wings, right?  We're twisted . . . we know this.  Anyway, Mackenzie was talking to Mike and I yesterday morning over coffee and breakfast about how she'd been thinking of her friend Kiana who passed away on Friday.  Keeghan was still in bed, so it was just the three of us.  She said, "I was thinking . . . you know how Keeghan was puking so much on Friday, and that was the day that Kiana died . . . well, I think Keeghan gave Kiana her wings."

Wow.  What a cool thought, right?  I thought it was pretty sweet.

Moving on - Maxx had a cheerleading competition in Baltimore yesterday.  Her squad qualified for Nationals, so we will be headed for Virginia Beach the first week in May.  Congratulations to Maxx and her fellow cheerleaders!

Keeghan had his port put in at CNMC today.  It was a bittersweet thing for Mike and I.  While we're happy that he'll have a little more freedom than the PICC line allowed him, it's sad that he has to have a new port.  We were so excited back in October when he got the last port taken out.  But that's ok.  Whatever it takes to beat this monster, right?  Also, it was nice to deal with a surgery department that knows what it's doing!  Not only did everything go like clockwork, he actually had his surgery a little bit earlier than scheduled!  The staff were all very nice and took wonderful care of Keeghan.  He's sore, but happy to be home and planted on the couch with a cup of coffee (since he missed it this morning).

And to complete the day in a really perfect way, we came home to an email from Make A Wish.

We have plane tickets to Ireland!
We are officially booked to fly out on March 29th and return on April 6th!  How cool is that?  I don't have any further details than that right now, but that's enough.  Keeghan is THRILLED!

It's been a bittersweet but good day!

S.

15 March 2008
In case you haven't noticed, I love to write.  Some things, however, are so very hard to write about.   I rarely have a hard time "finding the words."  Today I am having a very hard time though.

We lost another friend yesterday.  Her name was Kiana and she was 8-years-old.  We first met her at Walter Reed when Keeghan was going through chemo there.  Maxx would play board games and video games - sometimes both at the same time! - with Kiana in the clinic.  When Keeghan was in the hospital in December 2006, Maxx would go visit Kiana in her hospital room.  The two girls really enjoyed hanging out together.  Kiana was the only other child from Walter Reed to go to Camp Fantastic (Special Love's camp for kids with cancer) last year.  Keeghan says that she used to sit with him during campfire every night, and that she also sat with him on the bus on the way home.

It was so hard breaking the news to the kids this morning after I heard about Kiana's death.  She was their friend.  She was a fighter.  She had a smile that could light up a room.  I can't seem to wrap my mind around the idea that we won't see that smile again.  We will always remember it though.  Always.

Please say a prayer for Kiana's mom, Cheryl, as she begins a life without her only child.

In Keeghan news, he had a rough day yesterday.  He has one chemo med, Temodar, that he takes at home.  During weeks 1 and 5 of each chemo cycle he takes one pill per day for five days.  He was supposed to start taking it on Thursday when we got home from the clinic.  Unfortunately, having been awake since 0500 that day, we were all exhausted and completely forgot.  Yes, I win the Lousy Mother of the Year award for that one!  When I realized yesterday morning that we had forgotten, I immediately gave it to him.

So here's the thing - last time he took it, we didn't pre-dose him with any anti-nausea medicine and he did fine.  So I didn't give him any anti-nausea medicine yesterday before I gave him the Temodar.

BAD IDEA!

I didn't think about the fact that we always gave him the Temodar at bedtime before, so he probably slept through any ill effects.  About three hours after he took it yesterday, he started vomiting.  He proceeded to vomit seven more times over the next two hours!  The poor baby . . . I felt so bad for him.  I tried giving him Zofran (anti-nausea) three times, and he threw it back up every time.  Then, finally, the nausea passed and he felt fine.  But wow was that a long two hours for him!  Lesson learned, the hard way!  Today we will be pre-dosing him AND waiting until bedtime to give him his Temodar!

My last bit of news is that the Ireland trip dates have been changed - yet again!  We are now hoping to be leaving on March 29th and returning on April 5th.  The original dates would have put us in Ireland over Easter, which wouldn't have worked out very well as everything would be closed.  The new dates are much better.  Also, he is having surgery on Monday the 17th to put a port in.  Leaving on the 29th gives him nearly two weeks to heal from that surgery before facing an overseas flight.

So . . . that is all for us.  I hope all of you are doing well.  I know I've said it before, but I have to say it again - hug those you love, tell them you love them, and make the best of every day you have together.  Please.

S.

13 March 2008
Another good day - proof that positive thinking and the prayers of so many friends and family do work!

Keeghan had another gradient echo scan at 0700 today.  Yes, as in O'Dark Thirty 7:00am.  The poor guy was up at 0530 (while the rest of us were up at 0500).  But the scan results were good - the area of blood has not grown at all.  It remains stable.  While having it get smaller would have been even better, I'm good with small victories right now, and "stable" is definitely good.

So thank you to all who continue to keep Keeghan in your thoughts and prayers.  We truly appreciate it!

Other quick updates (because I can only think in short sentences right now):

it looks like the Ireland trip is tentatively planned for March 22-29th.  Will update when more concrete information is known.
since Keeghan is off of Avastin for a few weeks, he is having surgery to have a port placed on Monday, March 17th.  This will make the trip to Ireland much nicer as we won't have to take dressing change supplies, heparin, etc.
New pics of Maxx and the birthday cake she made for herself have been posted to the 2008 Pictures page.

I need a nap now . . .

S.

12 March 2008
Can I please add something to the list of Things We Shouldn't Have to Deal With While Fighting Cancer?  Yes?  Ok, add this: we should not have to deal with dogs developing strange growths on their feet that require 1) a trip to the vet, 2) a fine needle aspirate, and 3) a bill for $214.00.

PlzKthx.

More to come later on Maxx's birthday, which was technically yesterday.  But it was a busy day and she had cheerleading practice last night, so she is baking her own birthday cake today (no, I am not being mean, she asked if she could make her own cake).  I will be sure to post pictures.

S.

11 March 2008
Can we please get a break?  Please?

Don't worry, it's nothing bad with Keeghan!  But you know, it seems like we should be able to get a break from some of the other stuff in life since we're dealing with fighting this big monster Cancer!  For instance, Keeghan is dealing with enough right now; shouldn't he be spared all the other stuff that goes along with being 12, like puberty, acne, etc.?  Fair is fair, right?

I ask this because poor Mike had to go to the doctor yesterday for his gout.  He first experienced gout pain about 3 years ago.  We figured out after his first couple of bouts with it that it was stress-induced, but back then, it only bothered him a couple times per year.  Now, however?  He's hit the point of having gout pain more days than he is free from it.  So he went to the doctor yesterday and came home with a bag FULL of medications, and a sheepish grin on his face.  As it turns out, the doctor put him on quarters for the day (which means he was sent home and told he had to stay there).  In 18 years in the military, this was the first time he'd ever been put on quarters!

The drugs they gave him seemed to have worked because today his foot is not swollen and he's walking around much better.  One of the medications was a little scary though; the directions said to take one pill every 1-2 hours until he either A) reached a total of 8 pills taken, or B) began vomiting.  Huh?  Take it till you puke, eh?  Nice!  Keeghan and I teased him by telling him we'd put together a strand of beads for him - he'd get a football bead (for the shot in the bum he got at the clinic), a clinic visit bead, jingle bells if he threw up.  It was funny.

Wouldn't it be nice if we could turn off all of these other things - puberty, gout, etc. - until this battle with cancer has been fought and won?

For happier thoughts, check out the 2008 pictures page to see pics of the kids taken at The Melting Pot where we took them for their birthday dinner.

S.

8 March 2008
6:00am is no longer "The Mystical Hour" in Keeghan's world.  It really does exist!  This picture was taken at about 5:45 yesterday morning.  My little old man, enjoying his morning cereal and coffee!  He doesn't look very excited about it being his birthday, does he?

Poor baby . . . no one should have to be up at 5:30am on their birthday!  He was funny about it though - right up until about 5:00pm when his body was screaming that it was bed time!

He requested that Daddy make his favorite Chinese food - General Tso's Chicken - for dinner and, as expected, it was fabulous.  But by the time we finished eating, everyone was really tired.  So tired that Keeghan decided he wanted to wait until today to have his birthday cake.  Since we celebrate birthday week, and not just the actual day, no one had a problem with that.

So he had a good birthday, but the celebration will continue on today.  Expect more pictures!

6 March 2008
Let's do some celebrating people!  All the prayers and positive energy have been rewarded!  We met with the doctor today and Keeghan's tumor has definitely gotten smaller, and the most worrisome part of the tumor - the part that appeared to be in the brain stem - is GONE!  Mike looked at the scans with Dr. MacDonald today, and the doctor seemed very happy with the news.  While we had heard this on Tuesday from Dr. Packer, it's always a little more reassuring to be able to see the doctors when they're talking to you - you can tell a little more about whether they are pleased with the news, cautious, etc.  Dr. MacDonald seemed happy with the scan results.

As for the bleeding . . . let me see if I can explain this so that it is understandable (and to all you doctor-types that might be reading this, if I am completely wrong please let me know . . . ).  The medication Keeghan has been getting along with his chemo - Avastin - stops the tumor from developing new blood vessels.  Without new blood vessels, it can't grow.  Sometimes, however, the blood vessels in the existing tumor aren't just cut off, they break down and bleed out into the tumor . . . or at least that is how I understand it.  So the bleeding is actually inside the tumor.  It's hard to know if it is actively bleeding or not though.

So Keeghan is going in tomorrow morning - EARLY - for a scan called a gradient echo (I believe the link is to an explanation of the type of scan he'll be having, but I make no promises that this is the exact type).  The gradient echo scan will show the size of the blood area inside the tumor.  He'll then have another gradient echo scan next Thursday when he is at the hospital to start chemo again.  This will give the doctors two scans to compare and (hopefully) they will be able to tell if there is active bleeding inside the tumor, or if the size has stayed the same.

In the meantime, we will be celebrating a couple of very important days.  Tomorrow is very special, as it is KEEGHAN'S 12th BIRTHDAY!  I can't believe he's turning 12.  This is my baby!  But it isn't just the fact that my baby is turning 12 that is getting me all verklemmt . . . it's that he's made it to this birthday.  Cell by Cell . . . he's doing it!  Grandad was right - never underestimate The Keeghan Factor!

The other madly important day coming up is next Tuesday, which is MAXX'S 14th BIRTHDAY!  Holy cow!  My sweet little girl is growing up!  She is such an amazing person - so strong, so compassionate, so beautiful inside and out - I'm amazed by her every day.  14 . . . wow!  Seriously, where has the time gone?

So in the next week we will be celebrating not just the good news about Keeghan's tumor; we will also be celebrating the lives of two of my most favorite people in the world.

Life is good!

S.

4 March 2008
Keeghan had head and spine MRI's again yesterday.  Here is what we know so far.

Good news - the tumor is smaller.  In fact, the nodule that looked like it was in the brain stem is gone.

Bad news - there is bleeding in the area where tumor was.  The blood clot is about 1/2 or less the size of the amount of tumor that shrunk, if that makes any sense.  Also, there is a bit more swelling, but not enough to cause any problems at the moment.

We will know more after we meet with the doctors on Thursday.  Right now, what Mike was told on the phone is that they are considering taking Keeghan off of the Avastin for 4-6 weeks, scanning again in 2-4 weeks to check for changes.  Also, Dr. Packer said that surgery is now a possibility again.

So . . . good news and bad news.  Right now I feel like the good news is REALLY good news, but we have to ask more questions about the bad news before we really know how bad it is.

As always, prayers are a welcome thing!

S.

2 March 2008
Pick your battles Shannon.

That is a phrase that my husband has had to use on me numerous times throughout our nearly 17 years together.  You see, I can be somewhat . . . stubborn at times.  Surprised?

Just let it go.

That's another one I hear a lot.  The problem is, sometimes things get stuck in my head, either because they have angered me, hurt me, or sometimes just hit me in a way that I can't quite wrap my head around, and I find it hard to just "let it go."

So here's the latest one.  Mike had to go out to Walter Reed on Thursday to pick up a prescription for Keeghan.  He dropped the kids and I off at CNMC first as it was a chemo day.  He then drove out to Walter Reed.  While there, he dropped off some files I still had from Parents and Children Fighting Cancer (PCFC), the parent's group that I was president of until we switched hospitals.  Apparently one of the staff from the clinic struck up a conversation with Mike about the fact that we chose to switch Keeghan to CNMC instead of keeping him at Walter Reed.

I don't know how the entire conversation went down.  From how Mike described it to me though, it was almost confrontational.  This person really seemed to want Mike to understand, or admit, or whatever, that everything being done for Keeghan at CNMC could be done right there at Walter Reed.  What is sticking with me the most though is that the word "forgiveness" was used.  I'm not sure if we are supposed to forgive them for something, or if we were being "forgiven" for yanking Keeghan out of Walter Reed's care.  But it bugs me.

I think we made it quite clear at the time that we switched Keeghan to CNMC that we did not feel the doctors at Walter Reed had the same level of experience in treating pediatric brain tumors that the group at CNMC has.  I know that the doctors at Walter Reed would argue that they can do everything in the military hospital that is being done at CNMC, and in terms of administering medication, I'm sure they would be correct.  The difference for Mike and I is that the doctors Keeghan sees at CNMC are actually brain tumor specialists.  Also, there is a continuity of care at CNMC that Walter Reed cannot offer.  Keeghan's doctors are not going to get deployed (which happened to his first attending physician at Walter Reed within the first month we were here).  They are also not going to get orders to move somewhere else.  These are what I consider the "on-the-surface" reasons.  They are the obvious ones.  There are underlying comparisons in the quality of care that are much more specific.

While I know that the doctors at CNMC are not perfect, I have a hard time believing that one of them, upon finding out that a child's tumor had come back, would have nothing more constructive to say to the parents than, "I think it's safe to say that this will shorten his life."  But there was a doctor at Walter Reed who said exactly that - and nothing else - to Mike and I.  And this wasn't a doctor who has only been treating kids for a couple years (like most of the ones that Keeghan saw there).  This was supposedly one of the best they had!

I also doubt that the staff at CNMC would prescribe Valium to a 10-year-old brain tumor patient whose mother has called repeatedly to say that something "just isn't right" with her child.  But yes, a doctor at Walter Reed did exactly that just before Keeghan's subdural hematoma was discovered in December 2006.  I can list other things, but those are the two that come to mind as I sit here ranting.  So to suggest we forgive  . . . I just don't know that I have it in me to do that.  I far prefer to move on, and rest assured that those people are not near my son anymore.  Let them find their forgiveness elsewhere, because they won't find it here.

But I still can't seem to get it out of my head!  Honestly, I lay awake at night fighting with this person!

When you drive through the gate at Walter Reed, the guards always say the same thing: "Welcome to Walter Reed, home of warrior care."  While I do consider my son to be an amazing warrior, I don't think he is one of the "warriors" they are speaking of.  Walter Reed is full of those warriors - brave men and women that fought for this country and are now in need of serious medical care - and I hope that they are receiving the absolute best care that is available to them.  I truly do.  But maybe Walter Reed isn't the place for warriors like Keeghan.  Maybe those small warriors should be treated in a place where other small warriors like them are treated every day.  A place where more than one hand is needed to count the number of patients treated each year with brain tumors (or leukemia, lymphoma, osteosarcoma, etc.).

Do you see a soap box here?  I probably need to crawl down off of it, don't I?

I truly believe the person who confronted Mike at Walter Reed on Thursday feels we were wrong for transferring Keeghan to CNMC and all I can say is that it was a good thing Mike went to the hospital that day instead of me.  Not that he didn't say everything I would have said.  In fact, he probably said it much more eloquently than I would have.  That person is lucky in that, had I been there, the entire hospital would have heard my side of the argument!

Maybe that is why it is still stuck in my head . . . that conversation is a battle I definitely would have picked, and I didn't get the chance to!  I guess, this time, I will have to settle for fighting that battle here, in this forum, with all of you as my witnesses . . . for now . . .

S.

28 February 2008
I seem to be worrying everyone lately with my posts.  It hasn't been intentional.  I guess maybe I'm not dealing with all of this quite so well this time around.

When Keeghan was first diagnosed two years ago, we immediately jumped into action.  He had the surgeries to remove the tumor.  He did his six weeks of radiation and chemo, which had us going to the hospital five days a week for six weeks.  We were busy.  There wasn't as much time to sit around and think.

Then, soon after he finished radiation and induction chemo, we found out that the tumor was gone.  GONE!  We couldn't have asked for better news!  When we arrived here in DC, Keeghan was very sick, but he knew he was tumor free.  We didn't worry about whether the doctors at Walter Reed were doing the right thing in treating him because they were really just following the treatment plan already laid out by M.D. Anderson.  We knew how long he would be in treatment and what that treatment would be.

Flash forward to now.  While we knew it was possible the tumor would return, we obviously hoped that it wouldn't.  We know what the treatment is for Keeghan right now.  But we don't know if this is the treatment he will continue to receive, or how long he'll receive it.  He has his next MRI - the first since starting chemo again - on Monday and, if there is no change whatsoever to the tumor, we don't know that the doctors won't change his treatment.  It's all contingent on what the tumor - that evil alien that has taken up residence inside my baby's head - is doing.

So yeah . . . I think it is safe to say that it is harder to deal this time.  I'm trying to keep the posts here realistic, but maybe I'm sharing too much.  Keeghan is doing well, but I think he also is dealing with some new emotions that he didn't have last time.  He's tired.  His hand doesn't work very well.  Our lives are back to being scheduled around doctor appointments and chemo and blood counts . . . it's not a fun existence sometimes.  We're still fighting, and we won't quit.  It just feels like a different fight this time.

The thing that you have to remember - especially those that have never met us personally - is that we are a family of dorks.  We rarely manage to stay serious for longer than a few moments.  In fact, just last night, Keeghan and Mike were working on ways to play pranks on the doctors today during Keeghan's neuro checks (sadly, the doctor didn't seem amused).  We are still laughing, loving each other, and doing everything we can to fight cancer.  I just find that I cry more easily now, and it is usually when I sit down to update here (although sometimes it is over something as trivial as laundry piling up!).  Thinking about everything, and trying to type it all out, is hard sometimes.  The seriousness of it all tends to crash down on me more when I'm trying to convey the "reality" of it to everyone else.  I will say that it is sometimes cathartic to get it all out in words, but I feel bad for worrying everyone!

So, I'll try to be less . . . dark in future.  Hopefully after Monday's scans I will be MUCH more upbeat and happy!  I know that is what I am praying for, and I thank all of you in advance that are doing the same.

S.

25 February 2008
Keeghan had his first Occupational Therapy appointment in a while today.  It was tough for him.  He's lost a lot of the use of his left hand, and for the first time today I saw it really frustrate him.  I had a hard time watching him struggle, and I know Maxx did too.  He hasn't lost his strength; it's the coordination that he's lost.  He doesn't play pool as much anymore as he did before he started chemo, and he hasn't counted his change - something he used to do daily - in weeks.

I'm sorry for not writing more, but it's just weighing very heavily on me today.  Mike said earlier that we can teach him to deal with having no use of his left hand as long as he lives, and he's right.  But is it too much for me to want him to have both?

S.

20 February 2008
Keepin' it real dawg!

My apologies to those that got worried about us over my last post.  Everything is fine.  There were a couple days there that had me really down . . . it happens.  I'm sure no one reading this site would believe me if I kept it all "happiness and flowers," right?

Keeghan has had a busy past couple of days.  On Wednesday he woke up and immediately got another nosebleed.  This time it took us a long time to get it to stop.  We spoke with the nurse practitioner from the clinic and decided it might be best to get labs.  So the kids and I headed to the hospital for a CBC to make sure he didn't need a platelet transfusion.   He didn't, which was great news.

Once again I have to sing the praises of CNMC here.  We arrived at the clinic at 2:25pm, and by 3:25pm we were driving out of the parking garage, headed for home.  We would have been at Walter Reed for at least three hours, just waiting for lab results.  More points for CNMC in our book!

We still had to go back to CNMC yesterday for Keeghan to see the doctors.  They seemed very happy with how he's doing.  Once again they lowered his steroid dose.  He's now on .5mg every other day (hello????  Can we make things harder for this frazzled mother to remember????).  I also requested they switch his allergy medication because I don't think what he was taking before is doing anything.  He's been taking Zyrtec off and on since we lived in North Carolina.  I don't know if he's built up a tolerance to it or if it just doesn't work on DC allergens.  The doctors were agreeable with changing meds though, so we'll see if Claritin can stop these nosebleeds.  Thankfully the doctors don't feel the nosebleeds have anything to do with the chemo drugs Keeghan is getting; instead they think it is "just his nose."  That's an odd thing to hear them say, but if it's not being caused by the chemo drugs or cancer, then I'm happy!

I think I'll shut up now.  I've been typing some seriously long posts lately.  Sorry!  I type fast and, in cast you hadn't noticed, my mind is always spinning!  One of the worst curses in the world (more for you, Kind Reader, than for me) is a person who can type as fast as they think!  It makes for long, sometimes very random, posts!

Hope everyone has a great weekend!  We're hoping to go exploring DC again, so watch for new pictures!

S.

19 February 2008
What is "normal" anyway?

I can remember when Keeghan was always that cool kid that everyone else tended to gravitate toward.  He was friends with everyone in his class, he got good grades, his teachers liked him . . . he was generally just a nice kid to be around (as you can see from the picture at right, taken at the end of 2nd grade).

Then cancer showed up and took its toll.  He's still the same kid, but it's not quite so . . . obvious now.  Instead, people see the awkward gait, or the fact that he tends to hide his left hand inside his sleeve (especially now since he's taking Temodar again, which makes his left-side weakness even more pronounced).  Sometimes he stumbles a little due to his left leg not being as stable as his right.  I see people looking at him when this happens and I wonder what they're thinking.  Sometimes parents will see me looking at them and smile sympathetically.  I HATE it!  But the worst offenders are the kids.  I've seen kids Keegan's age up to high school age look at him like they think he's funny.  It happened at the mall over the weekend (which is why this post has been burning in my head, trying to get out for two days).  When I see kids do that, I want to get in their faces and scream, "He's still the same kid!  He's still funny, and smart, and probably the best friend you could ever have!"

But instead, because of cancer, he doesn't have any friends.  Sure, he HAS friends, but he never gets to hang out with them.  It all just seems so wrong.  It IS so wrong, for this to happen to such a vibrant child.

Maxx is paying a huge price as well, and she isn't even the one that is sick.  As you can see from the picture, Maxx was close to her little brother even before cancer was in our lives.  It was so much easier to spread myself evenly between them before.  Now, through no fault of his own, we have to be more attentive to Keeghan.  We have to make sure he takes his medicine when he's supposed to.  Whenever something odd happens with him, Mike and I hover around him to make sure he's ok.

Example: while we were at the mall on Sunday, Keeghan got a nosebleed.  We were just standing in a bookstore and his nose started bleeding.  We immediately paid for Maxx's books and then walked the full length of the mall to get back to the car (because, of course, we couldn't be close to the car when this happened, right?), stopping periodically along the way because his nose had started bleeding again.  I know Maxx was a little embarrassed when we had to stop because people would be looking at us, but what could we do?

I called the on-call doctor when we got home, and was told to bring Keeghan in if the nosebleeds became more frequent, or if we couldn't get it to stop.  For the rest of the day, we constantly asked Keeghan how he was feeling.  We probably didn't ask Maxx how she was feeling once though, and she felt that.

So I feel like I'm failing her.  She doesn't need me in the same ways that Keeghan does, but she still needs me.  I thought I was doing a decent job of not leaving her out, but I guess not.

As you can probably tell, we had a busy weekend, which in turn causes busy thoughts in Shannon's head!  It wasn't a bad weekend though - it certainly had high points.  We went to visit a statue at Hains Point called "The Awakening" that is being moved to a new location.  The statue has been at Hains Point since 1980, but is now being moved to the Prince George's County National Harbor.  It will still be close to where we live after it is moved; we just wanted to see it in its original location first.

Yesterday we visited the Thomas Jefferson Memorial.  The kids and I just studied the Second Continental Congress and the creation of the Declaration of Independence a few weeks ago, so they really got into seeing this.  I was very impressed with how interested Maxx was in all of the quotes around the memorial.  I love it when I see my kids enjoying something educational!

So it was a good weekend.  Unfortunately for me, one or two little things can set my mind spinning until I sit down here and "get it all out."  This site has become the proverbial "therapist's couch" for me I guess.  It's a good thing for me that all of you reading it don't charge me the standard therapist's fee!

Anyway . . . more pictures of the kids taken over the weekend (such as the one at left, taken at Hains Point) can be seen on the 2008 Pictures page.  Hope everyone enjoyed the long weekend.

S.

14 February 2008
Ok, this is my silly post for the week.  Since it is Ceili's birthday, I thought I'd take a picture.  You know . . . for posterity and all that . . .


Of course, I went through quite a bit (as did Keeghan) before we were able to get a picture of her sitting nice!

(poor Keeghan)

Keeghan's chemo went well today.  He really wasn't looking forward to it though.  As soon as we got out of the car in the parking garage at the hospital he was in tears.  His biggest problem is that they pre-dose him with Benadryl in order to prevent any allergic reaction to the drugs they give him, but the Benadryl knocks him out.  It's not good sleep either.  He only goes to sleep for about 30 minutes, but when he wakes up he feels groggy for the rest of the day.  Imagine feeling tired, but not tired enough to sleep, yet not truly awake either.  It's very disconcerting for him.

We explained this to the doctors today, so they agreed to try only giving him half the normal dose of Benadryl.  That worked very well!  Keeghan didn't fall asleep at all, and doesn't feel groggy now.  Success!  It's amazing how easily some solutions can be found if you're willing to pose the question.

Ok - I'm off to harass the dog!

S.

13 February 2008 - again
I forgot to write about something funny Keeghan said the other night.  We were in this Irish Pub having dinner before the Angels & Airwaves concert, and they had a mix of music playing - some old, some new.  During one song Maxx started dancing in her chair.  Keeghan looked at her and said, "If that is getting your groove on, take it off before you get any on us."

It was hilarious!  He later told us it was something he'd heard on a television show.  It was still pretty funny.  Keeghan has the greatest memory; he can remember lines from movies he hasn't seen in years.  It's very bizarre!

Another thing I forgot to write about this morning (hey, it was early and I'd only had one cup of coffee . . . sue me) is that we received our first bill from CNMC yesterday.

Are you ready for it?

$44,618.00!!!

Holy cow, eh?  One drug alone cost $19,398.00 (I'm assuming that was the Avastin since it is one of those "cutting edge" new drugs).

So cross your fingers that none of this is deemed "medically unnecessary" by TRICARE or we might be bankrupt soon!

Oy . . .

S.

13 February 2008
All of you reading this that are in any place other than Ohio, please turn and face in the direction of that wonderful state (you'll have to figure out what direction that is for yourselves as I am very directionally challenged) and then wave HELLO to the students of Amelia High School!

(looking through my magnifying glass)  I see Morgan, and Zack, and Tyler(s), and Karissa, and Ryan, and Emily, and Dustin, and Cory, and Alex . . .

That last bit was for those of you like me that are (or feel) older than dirt and remember Romper Room (and for you young ones, look it up on YouTube)!

Anyway, the kids of Mr. Kiefer's 10th Grade English class at Amelia High School have been reading our site recently, and have also written letters to the kids and I.  No pressure at all on me to make sure my writing is up to snuff, right?  Thanks Mr. Kiefer!  To the kids from Amelia High, we are working on getting all your letters answered now, so be on the lookout for them in the next week or two!

Not a lot going on here.  It's icy outside, so of course that means Mike had to go work somewhere OFF base today.  Barry's Law, right?  One of the (many) beautiful things about homeschooling - we don't have to go out in the elements!

Speaking of homeschooling . . . Maxx and I went to an Open House at The Washington Latin School on Monday night and she has decided that she'd like to apply.  So I'll be working on her application later today.  It is a public charter school, so it isn't really like she has to be accepted to the school.  They have to accept every applicant as long as there is room.  The problem is they're only going to be accepting 65 students into the 9th grade next year.  If they receive more applications than that, they'll use a lottery system to choose who will get in.  Of course the students currently enrolled in 8th grade at the school now will have priority, and there are 70 students in the 8th grade.

Are you doing the math?  Because I know I was at the Open House.  If ALL of their current 8th graders want to attend 9th grade there, they will have to turn away five students.  And yet they are accepting applications from new students.

Huh?

Apparently they don't expect all of their 8th graders to return.  I've told Maxx not to get her hopes up, but you know how that is with 13-year-old girls, right?  SO not possible.  But we'll see I guess.  All I can do is try for her (and then miss her like crazy if she actually gets in).

Nothing else new in our house.  Tomorrow is the dog's first birthday.  Am I getting her a present you ask?  Ummmmm . . . no.  As if!  I'm just now getting to the point where I don't mind her being around.  Maybe by the time she is 5 or 6 I'll actually like her!  Of course, if Mike or the kids could get on here to update the website, they'd tell you I'm all bark and no bite when it comes to the dog (no pun intended ::grin::).  That's why I'm the only one who knows how to update here!  ;)

We will be at CNMC for most of the day tomorrow as it is a chemo day for Keeghan.  That means I have to get all of his creature comforts ready to go today.  It's a good thing we've become masters at the art of hospital comfort!

More later . . .

Shannon


11 February 2008
What a night we had last night!  Some of you may remember pictures from October 2006 of Keeghan with some stuff that had been sent to him by the band Angels & Airwaves.  That package had been sent by Ginger, the mother of one of the band members.  On Friday, Ginger contacted us again, this time to let us know the band would be playing in DC on Sunday night and to ask if we'd like to go.

Ummm . . . YEAH!

So last night we went to the 9:30 Club downtown and didn't just get to see Angels & Airwaves perform, we got to meet them also!  I can't tell you how exciting that was.  I may not have talked about this here, but Keeghan is a HUGE music fan.  All of us are.  Music is our own personal "therapy" sometimes.  Keeghan can remember songs that he listened to when he was in the hospital.  He has a playlist on his iPod that he listens to every night when he goes to bed.  The first thing the kids ask when we get in the car is, "Do we have the iPod?"  We don't even listen to the radio anymore (with four iPods in the house, and over 4,000 songs on mine alone, who needs the radio?)!  So yeah . . . we like music.

Anyway, we got to the club and went downstairs to where the Meet & Greet was going to be.  When the guys walked into the room, Keeghan was near to bursting he was so excited!  He's a bit of a rocker at heart, so meeting these guys was HUGE for him.  On the way home from the concert, he explained to us that he doesn't get excited about famous actors or sports figures because he's really not into that stuff, but to meet people who make music?  That was just . . . WOW!  Even as tired as he was, he couldn't stop talking about it.

We met Tom DeLonge first, and as Tom held his hand out to shake Keeghan's hand, I thought the boy was going to explode!  He was so nervous he was vibrating! We then met Matt, who gave Keeghan a guitar pick (which is already in a place of honor in his room).  Matt asked the kids if they'd been to a concert before and they told him they had seen Def Leppard.  We spoke with him for a few minutes (SUCH a nice guy!) and before he moved on, he leaned down and told Keeghan, "We're going to put on a MUCH better show than Def Leppard."  Keeghan wants me to somehow let him know that he was right!  My daughter, Maxx, was really surprised when Matt gave her a hug (not once, but twice)!  She just lit up over that!

Then we met David Kennedy.  He was incredibly nice - and polite!  It was his mom that sent the package to Keeghan before and who contacted us about going to the concert.  I had to feel sorry for him at one point though, because after he introduced himself to us and he had said hi to Keeghan, he looked at me and said, "So, are we . . . related, or something?"  We're not.  His dad and my old boss from Illinois (also named David Kennedy) are cousins.  So it was my old boss who originally got in touch with David's mom about possibly having the band send something to Keeghan.  What a good son, getting us autographed stuff and getting us into the Meet & Greet for his mom, and he didn't even know why!  

David then brought Atom Willard, the drummer, over to say hello.  Keeghan told Atom about how much he loved the broken drum sticks that they sent before.  He LOVES them!  Atom was kind of a quiet guy, and he told us how he has no idea how he keeps breaking the drumsticks.  In the first 30 seconds of the show we were all laughing watching him play and saying, "THAT's how he breaks them!"  He was like a totally different person when playing!  All of them were amazing on stage!

I think we surprised them a little too.  Having never been to a Meet & Greet before, it didn't even occur to us to take a shirt or something else that the guys could autograph (plus, we already have a couple of things that they've autographed).  We really just wanted to get to thank THEM for the stuff we've already received, and Keeghan wanted to give them something back.  So he gave each of them one of his cancer awareness bracelets that have his name on them, and a dog tag with his name on it.  I know the guys probably thought we were weird, but it was Keeghan's way of thanking them for being so nice to him.

We really can't thank Ginger, or the band, enough.  The show was amazing.  And the kids have a memory that they will cherish forever.  I only wish I had been able to get some pictures (the venue's website said "no cameras" so we didn't even bother taking one).  But that's ok.  The memories are enough!

S.

8 February 2008
What do you say when you have nothing to say?

Supercalifragilisticexpialidocious?

(Sorry . . . I'm having childhood movie flashbacks . . . )

It's not that I have nothing to say.  There are a few things going on right now . . .

    * I have been researching possible high schools in Washington, DC for Maxx for next year.  There aren't many to choose from.  I mean, yes, there are a LOT of high schools, but not that I'd be willing to put her in.  I never set out to homeschool my kids for life, but where we live is somewhat forcing my hand.

      I visited two schools this week with a friend whose daughter is also going into high school next year.  The first that we visited was . . . depressing and scary, to be honest.  As soon as I walked into the building I had Lean On Me running through my head and I half expected to see Morgan Freeman come storming out of the principal's office.  It was bad.  (For those that don't understand what I mean, see here).  Then, when I met the principal and told him that Maxx had been homeschooled for the past year and a half, he looked at me as if I had been abusing her rather than educating her.  Considering the statistics for most of the public high schools in DC, I think he needs to back off.  I'd compare my daughter's intelligence to any of his students - any day, any time.

      Ok, sorry . . . I'll put my brass knuckles away now . . .

      The second school we visited shows more promise.  I'm taking Maxx to an open house there on Monday evening and we'll see how it goes.  I've already told her that I will not put her back in a regular school unless I feel they can teach her (in a class full of other students) as well as I can teach her one-on-one, and luckily she understands.

    * The other bit of news we received yesterday is about Keeghan's Make A Wish trip to Ireland.  Both Dr. MacDonald and Dr. Packer think that the trip sounds fabulous and that Keeghan should definitely go on it, but they don't think we should wait until May.   While the doctors don't expect this chemo that he is receiving to suppress his immune system too much, they said that the longer he is on it, the more likely it is that it WILL start driving his numbers down.  So they think it would be best for him to go after this first round of chemo, while he is still feeling pretty strong.

      That means that we may be leaving for Ireland in, oh . . . three weeks.  Yeah.  Nothing like springing THAT on the poor people at Make A Wish that have to plan the trip.  Dr.'s MacDonald and Packer said that they would be willing to let Keeghan postpone starting his second chemo cycle for a week, which means he can start it on March 20th instead of the 13th.  That means our window of opportunity for the trip is between March 4th and the 19th.  It also means that Maxx will not be able to attend her cheerleading team's national competition in North Carolina because it is March 6, 7 and 8.  When I told her this, her response was, "Ummmmm . . . North Carolina or Ireland . . . yeah.  I'll go to Ireland."  She's so funny.

      What will be really cool is if they schedule it so that we can spend both kids' birthdays in Ireland (Keeghan's birthday is March 7th, Maxx's is March 11th).  How incredible would that be, eh?

So, ok . . . I guess I did have something to say.  I'm sure there are many of you out there thinking, "Shannon ALWAYS has something to say . . ." and all I can say to you is, "prrrrrrrrfffffffft!" (insert raspberry sound here).  For once, amazingly, what I had to say had nothing to do with cancer!  Bonus!

In closing, I have one other thing I want to say, and this goes out to all of you reading this.  In case you ever wonder, we read every single entry to the Guestbook here.  In fact, Mike and I have been known to sit down and go back through all of the entries.  The fact that so many people have been touched enough by Keeghan's story - all of our stories - to post messages to us is pretty amazing.  It's an odd feeling when people say that they are inspired by Keeghan, or by me, or any of us.  I'm never sure how to react.  If anyone can find inspiration or strength in our story, that is fantastic.  In all honesty though, we are putting one foot in front of the other, every single day.  Nothing more.  So far I think we're doing alright at it.  We stumble occasionally, but luckily we haven't forgotten how to walk yet.  But you have to understand that how we're dealing with this is not something we do intentionally, and I truly feel that anyone else in the same situation would do just as well.  Cancer doesn't make you stop loving each other.  It doesn't make you stop laughing, crying, eating, sleeping.  It doesn't stop laundry from having to be done, the house from having to be cleaned.  Trust me, I cry.  A lot.  I don't feel like the strong person that so many of you think I am!  We're all just playing the hand we've been dealt.

My point?  Don't be TOO impressed!  ;)

Wow . . . what happened to having nothing to say?

S.

5 February 2008
Keeghan is fine!  We're all fine!  Really!

I apologize for the lack of posts these last few days.  Nothing is wrong.  We've just been playing a bit of "catch up."  Maxx had a cheerleading competition on Saturday in Lynchburg, VA, that has thrown us off a bit.

For those unfamiliar with our neck of the woods, Lynchburg, VA is 190 miles from our house.  One way.  We - meaning my friend Pam and I - drove all the way there on Saturday for a 2.5 minute performance.  Seriously.  I don't think I need to tell you that it was a very long day.

Mike and Keeghan, lucky boys that they are, stayed home and had a "guy day."  I'm not sure I want to know exactly what that involved.  I know there was some crazy ping pong movie watched, but I've left it at that.  We girls were gone from early in the morning until nearly bedtime that night.  One thing I learned from that trip is this: when you lose half of your weekend like that, it takes a few days to get back on track.  Sunday felt like Saturday, which was fine.  But then when Monday felt like Sunday, and yet Mike was getting up for work and I was having to get the kids up to go to Keeghan's PT appointment . . . well, it just felt wrong!  I think we are finally feeling like we're on the right day today though.

So - my apologies for no posts.  Rest assured that everyone is doing well though.  Keeghan is feeling great, other than some soreness from PT yesterday (thanks Cathy).  He is blessedly feeling no ill effects from last week's chemo.  Life is finally starting to feel normal again.  Yes, he has weekly appointments at the hospital.  But they're not making him feel sick.  The tumor doesn't seem to be causing him any problems.  We just have one more appointment each week to go to now.  I know that may sound weird to everyone, but this is a schedule we're used to, so it's all good.  It's way better than the drama of a month ago when we were still trying to get him into treatment.

I'll try not to take so long to post in future!

S.

31 January 2008
Sometimes this life with cancer can be a little surreal.  Things that would seem bizarre to another family are completely understandable to a family that's been where we are.

Example:  As my first sentence in this post, I started to type, "Today was a fantastic day!"  By itself it doesn't seem odd.  But when I go on to say that Keeghan had to have blood drawn, get an hour-long antibiotic infusion, and then chemotherapy, it's hard to believe that the day could be fantastic.  But it was!

We have learned over the past 21 months how to keep the kids comfortable while at the hospital.  As you can see at left, Keeghan brings a few "comfort items" with him, i.e., his pillow, his "Linus Blanket" (a gift from ProjectLinus), books, video games, music, etc.  The coolest thing (that you can't see in the picture) is the HoMedics MP3 Cush that he's sitting on!  It heats up, plays his iPod, AND gives him a massage while he sits in the chair!  Yeah, he had to get chemo . . . but he was getting chemo in luxury baby!

He had another new thing today that is just SO cool - I can't say enough about it!  A wonderful lady named Julie from Sew Much Comfort adapted two t-shirts for Keeghan (the blue one you see in the picture and also a black one) as well as a long-sleeved black fleece pull over so that they velcro all the way down the left side.  Now, instead of having to take his shirt off completely for the nurses to gain access to his PICC line for chemo, we can just open the side of his shirt and then close it back up when they're finished!  And she did this for him at no cost to us!

I try not to push organizations on people through this website, but this one is truly amazing.  They have sent numerous items to the kids being treated for cancer at Walter Reed, as well as adaptive clothing to soldiers returning from the war.  If anyone is looking for a charity worthy of donating to - this is definitely one to check out!

But besides all the cool stuff Keeghan takes to the hospital to make him comfortable, it was a good day today because things went so smoothly and we were treated so well.  Everything was in order when we arrived - something we're not used to.  While we waited in an exam room for the doctors to come in, they got Keeghan started on his antibiotic (a one-hour infusion).  He was finished with that before they even got him moved to an infusion room!  Both doctors - the neurologist and the oncologist - came in at the same time, so Keeghan only had to do his "Performing Monkey Tricks" once (and no puppets this time).  They both said that he looks GREAT.  They even dropped his steroid dose down a little since he's had no episodes of vomiting since that first one last Thursday.  Finally, once he was in the infusion room, the nurses kept his meds going smoothly, never leaving us waiting long between one infusion ending and getting the next one started.  We were out of the hospital by 2:30pm.  Based on our experiences at Walter Reed, we hadn't expected to be out before 4:00pm.  It was just . . . WOW!

To top it all off, the nurses at CNMC are just so nice!  Seriously.  This was our fourth time in the clinic (counting Keeghan's initial consult), and only the second time receiving chemo, yet they all know us already!  Not just recognize our faces, but remember Keeghan's name.  Those that didn't meet Maxx last time we were there (because Mike took her home midday), asked her name and took time to get to know her a little.  Some organization had donated a bunch of toys to the clinic and the nurses made sure both kids got something (in fact, they made sure Keeghan picked three things and Maxx got two!).  There were people giving out free ice cream along with souvenir items from DC United.

The kids actually had a little bit of fun today . . . how bizarre is that?  We're definitely liking having Keeghan treated at CNMC!

30 January 2008
A little randomisity today.  I know, you're thinking, "randomosity isn't a word . . ."  Well, maybe it isn't in YOUR world, but it is in mine!

I wrote a few days ago about how much more support we have from friends and neighbors this time around than we did when Keeghan was first diagnosed.  Literally, we can't go anywhere on base without someone either asking how Keeghan is or saying, "If you need anything, let me know."  It's amazing.  But there is another aspect of it that I never thought of before.  There are so many more children affected by this than there were two years ago.

Keeghan and Maxx neither one had good school experiences in Texas.  That is really the main reason I decided to homeschool them when we moved here.  The decision to homeschool was already made when Keeghan's tumor was found.  After his surgeries, we made one trip to his school to pick up his personal items and visit the kids in his class.  They had all made cards for him, which was very nice, but after that he never heard from any of them again.  The same goes for Maxx - she had a group of friends (i.e., thugs) that she hung out with at school, but it wasn't like they were really there for her, if that makes any sense.  Probably the two best friends they had were Allie and Lauren, the ones shown a few weeks ago in the pictures at the Washington Monument.  But Lauren was so young that seeing her good friend suddenly sick was almost more than the poor thing could process.

It's a completely different story here.  Maxx probably has more friends here than Keeghan does, but that is only because she is involved in more activities.  Keeghan knows a lot of kids, but has one friend, Ryan, that he's got to be very close to over the past few months.  Because Ryan's mom is also a good friend of mine, I know that Ryan is having a hard time dealing with Keeghan's cancer being back.  Another co-worker of Mike's has commented that one of his children is having a hard time dealing with it.  I've tried thinking of things to say to help these kids, but I just don't know what the right words are!  I've spent so much time caught up with talking to the child that HAS cancer (and the sibling of said child), that I don't know what I would say if it was a friend of my kids' with cancer instead.  We dealt with this a little when Keeghan's friend Slater passed away a few months ago.  But again, when you're talking to a child that has cancer, it's a different conversation completely.

When I imagine what these other kids - other kids that care so much - are going through, it tears me up.  I want to walk outside and just scream over the unfairness of how this disease hurts so many.  That, obviously, won't help anyone talk to their kids about it though.  So I found a list of books and videos that might help parents to talk to their kids about cancer.  I was a little annoyed at how many of them were about how to talk to your kids about death - because I don't really want to go there in my mind - but I understand the need for them.  You can find the list at the Lombardi Comprehensive Cancer Center at Georgetown University's website.

On to another subject (verbose, thy name is Shannon . . .).

Over the past two years, many people have bought things for the kids.  Mike and I are always so touched when people do nice things for our children, and it's great to watch them enjoying those gifts (they've been all over the Guitar Hero game that Mr. Joe gave them last week).  The flower arrangement you see at left was put together for Keeghan by Marina, a lady who works at the Shoppette on base (for our non-military friends, the Shoppette is sort of like a convenience store/gas station).  Every time we go into the Shoppette Marina and Phyllis ask about Keeghan.  One day, another young man who works there, Marvin, overheard us talking about Keeghan's cancer.  He wants to buy something to show his support, but when he asked Keeghan yesterday what he would like, Keeghan didn't know what to say!

My kids are spoiled.  I admit it.  When Keeghan was first diagnosed, we made sure they had plenty of things to occupy them during the long hours in the hospital and, later on, in the clinic.  They have hand-held video games, iPods, movies, books, etc.  Mike bought a portable DVD player for the long nights spent in the hospital watching Keeghan's monitors.  I think it is normal to want to buy things for your kids in situations like this.  You can't buy a cure (unfortunately), but you CAN buy distractions.

So on the way to Georgetown for PT yesterday, the kids and I discussed what suggestions we could give people when they want to buy something.  My idea was that people should give Keeghan something that means something to THEM, i.e., a book, movie, or CD that had a powerful affect on them in their own lives and that they'd like to share with Keeghan.  I've always felt that those types of "from the heart" gifts have the most lasting effect on the receiver.  Keeghan's suggestion was that, instead of buying something for him, people could wear the support bracelet with his name on it, or one of the dog tags that Mike recently bought that have Keeghan's name on them.  It really is amazing how much it lifts all of our spirits when we see people wearing them (remember the story of me bawling when I saw all of the cheerleaders wearing the bracelet?).

We called Mike and asked him to take Marvin a dog tag on his way home from work, which he did.  While there, yet another young girl who works there said she'd like one too!  To think that these young people - who really don't know my son AT ALL - care so much . . . well, it just chokes me up.  The funny thing is that we're going to have the entire base wearing either a bracelet or a dog tag with Keeghan's name on them soon!

There's a part of me that thinks cancer shouldn't be allowed to touch this many people.  But maybe this is how a cure will someday be found, right?

I'll shut up now.

S.

28 January 2008
I love it when a plan comes together . . . or at least I will, when that eventually happens.

We're still working on getting Keeghan set up with a weekly time for the home health nurse to come to the house to change the dressing on his PICC line.  Aamir, the nurse that came on Friday, called yesterday and asked if he could come again today and then get Keeghan on a regular Monday schedule.  That sounded fine to us.  Then, when Aamir got here, it took over 30 minutes of waiting at the Visitor's Center before I could get him a pass to get on base.  It's a hit-or-miss kind of thing - sometimes the Visitor's Center is empty and you can get someone a pass quickly; other times, it takes quite a while.

I asked if there was a way to get a pass for Aamir so that he could get on base every week without me having to leave the house.  I was told to call the housing office to get one.  I called them and was fortunate enough to get someone on the phone willing to do a little legwork and find a solution for me.  She called me back a while later and said that, as long as Aamir is willing to share a little about himself with the base, i.e., name, date of birth, place of birth, social security number, first born child (ok, I'm kidding about the first born child . . . I think), the housing office will help him to get a badge so he can get on base without me having to sign him on.

So while the plan hasn't quite come together yet, the signs are hopeful.  It's a good thing there are other perks to living on a military installation that outweigh the occasional inconveniences!

S.

27 January 2008
It's been a slow couple of days around here.  Hallelujah!  Friday was spent doing school work (finally).  We've been having to squeeze work in whenever we can these past couple of weeks.  Hopefully next week we'll get back into a comfortable routine.

Maxx had her first basketball game to cheer for on Saturday, so we went to watch.  It's still just a little bizarre to think of Maxx as a cheerleader . . . even when I have the pictures to prove it!

Before the game, all of the cheerleaders signed a stuffed basketball plush for Keeghan.  Then during halftime, Maxx threw it into the stands to him.  It was very cute.

I had thought she was going to hand it to him, so I was standing to the side, all prepared to take a picture.  But then she got about six feet away from where he and Mike were sitting and just chucked it at him!  So instead of the cute picture of the cheerleader giving her brother a signed basketball, I had to settle for taking a picture of him holding it up!  I think having all eyes on her was a little more than Maxx was comfortable with!

So now we plan to have a quiet, relaxing Sunday!  Hope you're all able to do the same!

S.

24 January 2008
Today got off to a rough start.  I had to wake Keeghan up earlier than normal because he had an appointment at CNMC for labs.  Within moments of sitting up in bed he was vomiting (for those not familiar with classic brain tumor symptoms, vomiting and headaches first thing in the morning are not a good sign).  He said he didn't have a headache at all though.  So I emailed the nurse practitioner at the clinic to give the doctors a heads up about what had happened.

As soon as the neurologist, Dr. Crawford, came into the exam room at the clinic he said, "So, we had some vomiting this morning, huh?"  I knew Debbie would let them know quickly!  He ordered a C.T. scan just to make sure the tumor hadn't grown, or that the ventricle wasn't enlarged.  He admitted to us that, as a fairly new doctor, he might be being over-cautious.  We, of course, were perfectly FINE with that!

As it turns out, the tumor hasn't grown, the ventricle was (at most) 1mm larger, but there was some additional edema around the tumor.  The way Dr. MacDonald (the oncologist) explained it, this could be a good sign.  I probably can't explain it the same way he did, but essentially what he said was that as the chemo hammers away at the cancer cells, the fallout is this edema around the tumor.  So this could be a sign that the chemo is working!  To counter the nausea in the morning, however, they have put him on a low dose of steroids.  He's taken those before, so this is a pretty easy solution to deal with.

One of the funnier moments of the day came when Dr. Crawford was doing neuro checks on Keeghan.  We like to call these "Performing Monkey Tricks."  One of the tests/tricks is for Keeghan to touch his nose with his index finger and then touch the doctor's finger.  He has to do this repeatedly as the doctor moves his finger up and down, side to side.  This doctor has only seen Keeghan once before, and that was last week right after he'd had his PICC line put in, so he was still a little loopy from the sedation.  He obviously hasn't figured out that Keeghan is pretty mature for an 11-year-old.  How do I know this?  Well, when it came time to do the whole touch nose, touch finger check, Dr. Crawford went to his "doctor bag" and put this funky parrot puppet on his hand.  He then turned around to Keeghan and said, "Ok, touch your nose and then touch the parrot's beak."

What you see at left is a re-enactment of the look on Keeghan's face when the doctor did this!  It was hilarious!  Mike and I were behind the doctor's back, so luckily he couldn't see us giggling!

Keeghan was a good man though and didn't say a word, he just played along.  I was very proud of him!

So even though the day started off a little scary with the vomiting thing, it turned out alright.  Whew!

Check out the 2008 Pictures page to see a picture of Keeghan with a new toy of his . . .

Also, the prayers and posts and jokes on the website have been fabulous!  Every day is another smile, thanks to all of you!

S.

23 January 2008
What a difference a day can make!

I forget sometimes how many people are reading this site!  I am a blogger at heart - I like to "get it all out" in writing.  Back in the day, I was that girl that had a stack of journals hidden in my room that I wrote down all of my feelings in (which, of course, all got thrown away at some point to protect me from incrimination).   It helps my electronic blogging that I type over 80 words per minute too!  I can almost type as fast as I think.  When I haven't had any coffee yet, I type faster than I can think, and then things get really weird.

My point?  I woke up yesterday feeling pretty down and, because I've always wanted to keep this record of our journey with cancer real, I wrote about it.  And maybe that was what I was meant to do, because the messages I received in response to yesterday's post did so much to lift me up!

In the beginning, when Keeghan was first diagnosed, we had a couple of good friends that were there to support us.  The website didn't exist yet, so we had the people that we knew in San Antonio, and family, for support and that was all.  Don't get me wrong - they were all FABULOUS!  Just amazing.  And they all still are.  But we also had people that we knew who just disappeared.  Or they would send an email once in a while that just said "So, what's up?"  I don't know if they thought Keeghan was contagious, or if they were just afraid and didn't know what to say . . . people react in their own personal ways I guess.

But now, things are SO different!  This "Second Leg of the Journey" as Mike and I have started calling it has been a completely different story when it comes to the support we are receiving.  Between the people in Mike's office (who all chipped in and covered this year's portion of our medical expenses for Keeghan!), the homeschool group here on base, my Bunco ladies (my "insanity check" group), other families we met at Walter Reed, and the people we've met through this website . . . the amount of support has been ASTOUNDING.  I can't express the gratitude that we feel toward everyone - those we know in real life, and those we know here, online.  We have certainly been blessed.

So I hope you'll all forgive me when I have a "down day" like yesterday.  No one should ever have to watch their child (grandchild, brother, sister . . . best buddy) go through all of this.  After I posted here yesterday Keeghan woke up and was in this incredible happy mood.  All day he was like a bright light shining.  Maybe it was because he didn't have to take any chemo pills, or maybe it was just a good night's sleep.  I don't know.  But whatever it was, I am thankful for it!  We did school work, played pool, laughed at American Idol.  It was an overall stellar day.

It was a day that we had all needed for quite a while!

S.

22 January 2008
When I first woke up this morning, I was almost able to believe that life was normal.  Almost.  Mike was gone to work, the kids were sleeping.  The house was nice and quiet.  But then I remembered everything . . . and I nearly gave into the urge to just curl up in a ball and cry.

Then I thought, "You know what?  Keeghan gets out of bed every day, and does all of the things he enjoys doing.  Every.  Single.  Day.  If he can then so can you."

The boy is dealing with a lot physically right now.  He started chemo on Thursday, but has also been getting a chemo pill (Temodar) every day since then.  He took the last one last night and now, thankfully, doesn't get any more chemo until January 31st.  But the slight shakiness in his left hand and the little bit of wobble in his gait have become much more pronounced in the past few days.  Mike and I were worried that the tumor had reached a point in size where it was causing these symptoms.  But he isn't having headaches or nausea at all.  I emailed Debbie, the nurse practitioner with the neuro-oncology team at CNMC, over the weekend and she said that we should expect any mild symptoms he has to possibly get worse around chemo time.

It's just so heart-breaking to watch him sometimes though.  He's still playing pool - and beating Mike and I regularly - but he has to work so hard to overcome his shaky left hand.  He hooks his left finger around the pool cue and then uses the cue to guide his hand down to wear it needs to be to make his shot.  I guess I should laugh, because Keeghan being Keeghan, he's already found ways around his deficits.  But this mother's heart breaks every time I see him having to work so hard.

It's very easy right now for me to fall into thinking, "Why him?  Why does he have to go through all of this AGAIN?  When does HE get to have a normal life?  When does MAXX get to have a break and just be a normal teenager?"  I know I shouldn't do that because it gets me nowhere - other than where I am right this minute, which is sitting here at my desk crying.  But it's impossible not to want to know WHY.

Time to pull myself together though and put that "strong mom" face back on.  When I think of how often I hide in the bathroom and cry, or put sunglasses on in the car to hide my tears, but then think of all the people we know that tell me they think I'm so STRONG - well, I just have to shake my head.  If this is strength, I'd hate to see weakness!

For anyone reading this, do me a favor.  Hug someone you love today.  And I mean really hug them.  Don't let any opportunity to do that pass you by.  Consider it a favor to me.

Shannon

19 January 2008
Things are going well.  Keeghan seems to be tolerating his chemo well.  He didn't experience any serious nausea when we got home Thursday night.  He got a little anxious when he had to take his chemo pill.  He has one chemo med that is in pill form and he has to take it for five days straight, then he gets a four-week break before he has to take it again.  During his last year of chemo, he had a pill that he had to take once every six weeks.  It always made him feel like garbage the next day, so I think he was afraid this one would do the same.  I think he was very happy when he woke up yesterday and didn't feel bad.

I realize that I am being a little overcautious.  But he's started on all new chemo meds, so I am a little paranoid.  I don't want to miss anything.  Also, the neurologist that Keeghan saw in clinic on Thursday looked at Wednesday's MRI's with Mike and said that the tumor has grown since December and that Keeghan's ventricles appear larger.  So we're now having to watch for more symptoms of problems caused by the tumor.  That doesn't exactly help my paranoia much.  I know that Keeghan doesn't want to make any trips to the ER, but I don't want to ignore anything that might be going on either.

In other news, a home health nurse came to the house today to change his PICC line dressing.  She was very nice, although she isn't the one that will be coming every week.  But still . . . it was cool to get the ball rolling on the home health care.

After the nurse left, we all loaded up and went to the bookstore.  Maxx's Girl Scout troop was absolutely fabulous to her yesterday.  They know that she is going to be spending some time at the hospital in the coming weeks, so they all pitched in and gave her a $100 gift card to Barnes & Noble!  Needless to say, Maxx was THRILLED (special THANKS to all the Girl Scouts)!  So we took her to spend it today.  Keeghan also bought a book that one of the nurses at CNMC told him about.  It's all poems about dragons - perfect for the ultimate dragon collector!  Now we're all relaxing for what feels like the first time in a week!  Tomorrow is going to be a lazy day - I can hardly wait!

On a lighter note - we had some pictures taken of the kids back in November.  I've been waiting for two months now to receive the disk in the mail - along with the release to use the pictures here - so I can share them with all of our wonderful friends on the website.
So, here is Keeghan - November 2007.











Maxx - November 2007











Best friends!  The two very best of friends!

Maxx and Keeghan, November 2007












17 January 2008
It is 1:30pm on Thursday - Keeghan's first chemo day.  He is sound asleep, so I thought I would take a few minutes to update here since I will probably be hovering around him once we get home later this evening.  Can you believe I'm actually able to update the website from the hospital?  Amazing!

Getting the PICC line put in this morning went well.  In fact, I think it was far more traumatizing for me than it was for Keeghan.  I was in the room with him when they gave him the drugs to sedate him.  It was "conscious sedation" so he wasn't completely out cold, and that really made him nervous.  He was afraid that he would feel the line being put in.  I was only able to stay until the sedation drugs were given, and then I had to leave the room.  He was still pretty coherent at that point, and he really cried about me having to leave.  Which, of course, destroyed me.  No mother should ever have to let go of their child's hand and walk away like that.

Less than 15 minutes later he was finished . . . and HAPPY.  As in loaded-up-on-drugs-happy!  The nurses told me that the drugs kicked in as soon as I left the room and then he was fine (I took a little longer to quit crying).  His drunkenness was pretty comical though.  When Mike and I walked into the room, he was chattering away to the nurse.  He looked at us, said "HIIIIIIIIIIII!" and then went back to talking to the nurse.  She told us he was hilarious after the line was in because the actually thanked them - TWICE - for putting it in for him!  That's my boy.  Always polite!

So now he is getting his Avastin, which takes 90 minutes.  He has to have a 30 minute "flush" after that and then he'll get Irinotecan, which also runs for 90 minutes.  I'm thinking, if all goes well, we'll be out of here by 5:00pm.  We've been here since 7:30am.  Yeah.  Long day.  Hopefully he won't suffer any nausea later from the chemo.  Whether he does or not, I'll still likely hover over him all evening!  It's a mom thing.

More tomorrow.

S.

16 January 2008
Day One at CNMC is over, and all went well.  Keeghan's MRI's were scheduled for 4:30pm and they got him into the machine by 4:45pm (something we're so not used to).  The nurse that started his IV was A-M-A-Z-I-N-G.  Seriously.  Not two seconds after he said "Ow!" she said,  "It's in."  No digging or fishing around for a vein.  We didn't get home until after 7:00pm, but that's ok.  All in all, a good day.

Now tomorrow we have to be there by 8:15am (which means we leave the house by 6:30am, just to be safe with DC traffic!).  We look forward to tomorrow being over!

S.

15 January 2008
For the first time in a long time I actually shed happy tears tonight!  I took Keeghan and Maxx to the Youth Center - Maxx for cheerleading practice, and Keeghan just to hang out with his buddy Ryan - and saw the rest of the cheerleaders all wearing Keeghan's support bracelet.

I guess I haven't said anything about that here on the website, but a couple months ago (before we knew his tumor was back), I ordered gray (the color for brain cancer awareness) silicone bracelets that say "Keeghan" on one side, "Cell by Cell" on the other, and on the inside say "Fighting Cancer since April 20, 2006."  I mostly bought them for close friends and family, but I ordered 100 of them because it was cheaper that way.  Since his relapse, we have given out so many that I'm now having to look into ordering more!  My dear friend Pam (mother of Maxx's best friend Caitlin, and Keeghan's best friend Ryan) got a bunch of bracelets from me a couple weeks ago and gave them to the other cheerleaders, but without telling Maxx.  So last week at practice, they all surprised her by having them on.  It was incredible for Maxx to know that her friends were supporting her, and supporting her brother.

Flash forward to tonight  . . . I went into the Youth Center with the kids because I needed to pay for part of Maxx's cheerleading uniform.  It was the first time I had seen the girls wearing the bracelet.  I wanted so badly to thank them all, but wow!  I couldn't speak.  I wrote a check for what I needed to pay for and honestly, I got out of there as fast as I could!  As soon as I hit the cold air outside I fell apart.  I cried all the way home!  I am amazed every day by the amount of support we receive from those around us.  But seeing those young people, caring about my children . . . there just aren't words.

Thank you - all of you!

Shannon

14 January 2008 - continued
Holy cow - how can one day go so far downhill SO fast!

We started off the day thinking the biggest hurdle we had to get past today was getting Keeghan scheduled for MRI's and having his PICC line put in.

Oh NOOOOOOOOO!  That part was EASY.

One of Mike and I's big issues has been that we want Keeghan's treatment to be done completely at Children's National Medical Center (continuity of care).  THEY are the brain tumor specialists.    We DO NOT want him seeing one group for one thing and another group for another thing (read: fragmented care for cost containment reasons).  Unfortunately, our insurance through the military - TRICARE - doesn't agree.  Or at least that is what his doctor at Walter Reed tells us.  We later found out that TRICARE is not the villain in all of this, but that the doctor COULD override the Walter Reed referral center and give us what we want, but he has chosen not to.  

The deal is this - the doctors at Walter Reed can give all the medications that the doctors at CNMC want him to get, and because they can do MRI's and insert PICC lines at Walter Reed, we have to let them do it.  Forget the fact that Keeghan would not have the brain tumor specialists at CNMC doing his neuro-checks every week.  Instead he'd have the oncology FELLOW at Walter Reed doing them.  The very same doctor that, in December 2006 when I told him that something was wrong with Keeghan, told me "it's probably side effects of chemo or radiation."  Even when I was IN TEARS telling him that something was wrong!  It took having half of Keeghan's face become paralyzed for a CT scan to be ordered, where they found a large subdural hematoma that REQUIRED SURGERY.

Yeah.  I'm supposed to trust that same doctor to judge whether or not my son is doing well on the chemo each week.

It is only out of respect for all of you reading this that I am not cursing up a storm right now.

After lots of yelling (yes, at THAT doctor) on the phone, and visiting the TRICARE office here on base (as well as a few people in the building where Mike works that have much more knowledge than we do), we finally ended up having to drop Keeghan from the plan he was enrolled in with TRICARE.  He now is covered under a lesser plan where we have to pay a portion of his care, but we can take him to see THE DOCTORS WE WANT HIM TO SEE.

So, after all the &$#!@$%^ settled . . . Keeghan is scheduled for head and spine MRI's on Wednesday.  At CNMC.  He is also schedule to have his PICC line placed (with sedation) on Thursday morning.  At CNMC.  Oh, and he'll get his first chemo as soon as the PICC line is placed.  At CNMC.

Can you tell that I'm a little upset here?

In other words, as far as I am concerned now, he's finally going to be treated by the experts.  Yeah, we're going to have to pay some money out.  That's ok.  It isn't a huge amount, and I think it is well worth the expense for my baby to be treated by the right people.

Oy . . .

S.

14 January 2008
I have to start by telling you all how amazed I am by the support and prayers that this website has generated!  What started off as a way for Mike and I to keep family and friends updated on Keeghan's treatment (without spending every waking hour on the phone) has turned into this incredible circle of comfort for us.  Every post in the guestbook is like one more pillar . . . helping to keep us upright and fighting.  I hope that you all understand that, and understand how much we appreciate all of you.

The other amazing thing about this site is how many new "friends" we've found through it.  Just today I read the story of another amazing little boy, diagnosed with a brain tumor almost exactly one month after Keeghan was diagnosed.  I found the story of this little guy because HIS mom found OUR story and posted in the guestbook here.  Just last week another mom - a military mom also! - found our site and posted.  She has a child with leukemia (in remission).  I've also emailed with a grandparent of a little boy who has been taking the Avastin medication that we are looking to start Keeghan on.  So many of us out there, all with similar stories!

Oftentimes, when searching for cancer information online, all you find are the negative stories.  Especially in medical journals!  That's why I don't read those.  It's such a joy though when you find another family who is, like us, recording all the joys and heartaches in a blog.  All the smiling faces in the pictures . . . those are the true testament to how it IS possible to carry on, to continue enjoying life, even when fighting for it.

So, to the families of Kennedy, Gage and Asher, I say "Thank you for visiting us here!" and we'll now be following your stories as well!

In treatment news, well, there isn't any.  Yet.  I expect that to change today.  Keeghan, Mike and I have discussed everything in great detail over the weekend and we all feel that the best plan is for Keeghan to start the Avastin/chemo treatment at CNMC.  Dr. Weinberg will be discussing Keeghan's case in a tumor board at M.D. Anderson today, but I truly feel they would have to have some pretty compelling new information for us to change our minds.

It isn't a lack of trust in Dr. Weinberg that has brought us to this decision.  Anyone who has been following this site for very long knows we think that man is the most amazing around when it comes to neurosurgery.  But the first priority right now is to stop this tumor from moving any further into Keeghan's brain stem, and everyone is telling us the same thing - that the part that appears to be in the brain stem cannot be reached surgically.

We are now waiting for the team at CNMC to get head and spine MRI's scheduled, as well as getting Keeghan scheduled to have a PICC line inserted.  Eventually he will have another port put in, but for right now the PICC line is quicker.  We are truly hoping that the MRI's, PICC line insertion, and first chemo will happen this week.  Hopefully we're not wishing for more than is possible!

More to come later today!

S.

10 January 2008 - again!
One more quick update to everyone.  For those that have emailed or left messages asking that we call, please don't be offended if you don't hear from us right away.  As you can tell, we have A LOT on our minds right now, with some really important decisions to make.  Therefore, we are getting out of town tomorrow.  Just for an overnight with good friends - sort of a rest before the war.  But we all need it - desperately!

Mike and I will each have our cell phones with us as we have calls that we're expecting from the team at M.D. Anderson and Children's National Medical Center (from here on being referred to as CNMC).  I will hopefully be able to check the website and my email while we're gone.  But those calls, and calls to family to keep them posted, are our priorities for the next couple days.  I hope that you can all understand.

We appreciate all of the support from everyone.

Shannon

10 January 2008
The plan from Children's National Medical Center (CNMC):

Start Keeghan on a chemo regimen combining two chemo meds - Irinotecan and Temodar - along with Avastin.

Avastin® (bevacizumab) is the first U.S. Food and Drug Administration (FDA) approved therapy designed to inhibit angiogenesis, the process by which new blood vessels develop and carry vital nutrients to a tumor.

Dr. Packer, the neurologist, does not recommend surgery right now.  I'll try to explain (coherently) his reasoning.  If we don't opt for surgery to start, then the oncologists at Children's can more easily measure the affects of the chemo on the tumor.  If we opt for surgery first, there is no way all of the mass can be removed surgically at this point.  So all that would be accomplished by surgery is to reduce the amount of disease there, and tell us whether the tumor is Grade 3 or Grade 4.  Dr. Packer says this is a moot point because it would not change the treatment plan in any way.  But the oncologists would then have less disease to measure the affects of the chemo on.

I'm torn.  Less disease is a good thing, right?  Then again, not putting him through the risks of surgery and possible weakness afterward is good too.  Also, he would have to recover from the surgery before he could be started on the Avastin because it slows the healing process.  But the Avastin is good because it attacks the blood vessels providing the tumor with blood supply.

ARGH!

I spoke with Dr. Weinberg again this afternoon.  He is going to talk to Dr. Wolf and then call us back either tonight or tomorrow.

One of our biggest concerns right now is that this tumor appears to be moving down into Keeghan's brain stem.  It cannot be reached surgically there.  If we go with surgery first, the tumor has more time to grow in the brain stem before Keeghan starts the Avastin, whereas if he starts the Avastin immediately, hopefully the tumor won't grow any larger in the brain stem at all.  If the chemo then shrinks the size of the mass over time, hopefully Dr. Weinberg would be able to operate at a later date and remove what is left of the tumor.

So . . . we have a hard decision to make.  The hardest of all of our lives.

S.

9 January 2008
Dr. Weinberg (Keeghan's neurosurgeon from Houston) called! Yay!  The most important member of "the team" (besides Keeghan of course) is finally on board.  When I first emailed him a couple weeks ago and asked that he call, I received an out-of-office email reply saying he'd be out until the 11th.

He called Mike's cell phone, but since Mike can't take his phone into where he works, his phone was here at home.  Maxx got to the phone before I did, so she answered it.  Dr. W thought it was me, but then she said no, it was Maxx.  Once he told her who he was, she proceeded to have a little conversation with the man!

How are you?  How was your vacation?  Yes, I'm fine.  Blah, blah, blah . . .

I'm fairly shaking in my shoes because this is the man we've been wanting to talk to the most since all of this started, and my 13-year-old is having a long-distance coffee klatch catch-up session with him!

I finally got the phone away from her and he and I go on to discuss everything that is going on with Keeghan.  He has the scans and has looked at them.  He said that it looks like tumor, and that it may have progressed from a Grade 3 to a Grade 4 cancer.  But he also said that it may still be Grade 3.  The only way we will know anything at all for certain is to have a pathologist looking at it under a microscope.

So I told him about our meeting with the radiation oncologists at Walter Reed yesterday.  I also told him that we are meeting with the neuro-oncology team at Children's Hospital tomorrow.  He wants us to call him after tomorrow's appointment and tell him what they had to say.  But the only person we want cutting on Keeghan's head - be it for resection of the tumor or only for a biopsy - is him.  So he said we will discuss what they had to say at Children's and then see about getting us down to Houston next week for more scans and to meet with he and Dr. Wolf (Keeghan's oncologist at M.D. Anderson).

The last thing Dr. W did was talk to Keeghan on the phone.  Can I tell you how much I adore this doctor?  He cares more than any doctor we have ever dealt with and that means so much.

So - it looks like we're heading back to Texas.  I'm cool with that.  I'm (obviously) not cool with all of this that is going on with Keeghan, but if it has to happen, I'd feel better being back at M.D. Anderson for his treatment.

S.

8 January 2008
We had a consult with the radiation oncology folks at Walter Reed today and found out that radiation therapy is not really an option for Keeghan right now.  The radiation dose he received in Texas (according to the doctors we spoke to today) was 59 Gray.  Anything over 60 Gray creates too much of a risk for brain necrosis.  Even though there are other types of radiation treatments, they all add to the original dose of radiation.  Both doctors today said that they thought surgery would be a good option though, at least as a start, followed by chemotherapy.  In fact, one doctor made a comment about how there is "a perfect pathway left from the last surgeries."

So . . . once again, we are really looking forward to Dr. Weinberg in Houston weighing in with his opinion.  One of our biggest fears is that the doctors at Walter Reed will try to steer us toward a neurosurgeon here rather than send us all the way back to Houston.  The radiation oncologist we saw today said to let him know if that happens though, because he truly feels it is better to go back to the same surgeon that performed the original surgeries.  It was great to know there was someone that agrees with us.

I should clarify here that the Hem/Onc doctors at Walter Reed haven't said they're against us going back to Houston.  I honestly don't know what they are for or against.  In  fact, I learned a little something about myself today when it comes to the Hem/Onc docs we've been dealing with.  I don't have much faith in them.  When I am around them, I feel like they are just one big dark cloud.  They offer sympathy when that is not what we want, or need.  It's annoying.  I think the only reason I have "trusted" them in any way up to this point is because they were really only administering a treatment already prescribed by the oncologist at M.D. Anderson.

That's bad, isn't it?  To say that I don't trust my son's doctors?  I think if they seemed more optimistic I might feel better.  But it's as though they are constantly covering themselves - don't give any hope and that way you can't be blamed if things go poorly.  I don't know.  I just know that when we are around them, I feel as if I need to get between them and Keeghan.  That's not a good sign.

But on to other things . . . we got to see Children's Hospital today.  We picked up the disks with Keeghan's latest scans on them at Walter Reed and hand-carried them to Children's on our way home.  I won't say I was unimpressed with the hospital - it's very much a children's hospital.  Bright.  Colorful.  But not very shiny.  It almost seemed like they were trying to cover up a layer of dust with bright-colored paint.  I don't know if that makes sense or not.  But the receptionist I talked to in the oncology clinic was extremely nice, as was the neuro-oncology team's nurse practitioner that I spoke with on the phone yesterday.  So I'm still encouraged that we are being sent there.

I think that is about it for now.  Keeghan is mentally tired right now.  All the talk about brain necrosis today really freaked him out.  So, he's in his zen place right now, working it out in his 40-year-old-trapped-in-an-eleven-year-old's-body way - he's playing pool.  Go figure.

I'll post more after our consult at Children's on Thursday.

S.

6 January 2008
It's been a good weekend.  It feels a little like the proverbial calm before the storm, but probably only to Mike and I.  Keeghan had his friend Ryan spend the night Saturday night, which is always a fun time.  Today we went downtown to the Smithsonian National Museum of Natural History to see an IMAX show.  It was Sea Monsters 3D and was VERY cool.  After that, we walked down to the Washington Monument to meet up with some very good friends of ours from Texas who just moved here.

It's always good to meet up again with friends you haven't seen in a while.  Allie and Lauren lived in the same apartment complex as us in San Antonio.  Their dad, Brent, is also in the Air Force.  At the time of Keeghan's diagnosis, their mom Tracey was a blessing to me because she came to the hospital and took Maxx home with her, and also kept Maxx with them during the second week of Keeghan's stay at M.D. Anderson.  We would have been lost without them, so we're especially happy to see them again!

While we adults stood off to the side and got caught up, the kids sat at the base of the monument and did their own catching up.

If you've never laid on the ground and looked up at the Washington Monument, you really should give it a try!  It'll make you a little nauseous (as Tracey found out a few minutes after this picture was taken)!






I think that we should take Grama to do this the next time she's in town!

Tomorrow we start back on school work (yes, believe it or not, even with everything that is going on, we are going to do school work).  We have an appointment on Tuesday with the radiation oncology department at Walter Reed.  We're still waiting on an appointment at Children's Hospital.  Hopefully we'll have one scheduled by the end of the day tomorrow.  If we don't I think I might have to get loud (or go crazy, and I prefer loud).

Mike has been on the computer looking up different clinical trials and treatment options.  It's mind-boggling trying to figure it all out.  I'm hoping we'll hear from Dr. Weinberg this week, even though I know his out-of-office email reply said he's out until the 11th.  Right now I just want to hear SOMETHING from SOMEONE.

In the meantime, we carry on.  We make the most of every day, have fun, hug each other a LOT, and continue to pray.  Our thanks to all of you that continue to do the same.

S.

Be sure to check out the new 2008 pictures page for more pictures from our day today!

5 January 2008
Here it is - PROOF that we're not sitting around moping, but instead are making the best of every day.

Maxx and Keeghan doing their goofy dance!

The four of us were up until midnight last night, playing pool, blasting music, having a great time.  This video was taken around 11:15pm.  The kids do this funny dance whenever they're hyper (which they were), or whenever they're trying to get a laugh out of me (which they did).

So there you go . . . my babies at their finest!

S.

3 January 2008
Just a quick note to update (so everyone can stop worrying).  We're doing fine.  Really.  We've had a blessedly normal day today.  Mike is off all this week, so we went out for lunch and then visited an international market Mike has been wanting to go to.  This evening, Maxx went to cheerleading practice and Keeghan went to the Youth Center with his buddy Ryan to play pool.  When he got home, he told us all about how he talked to a couple of girls that he *thinks* were flirting with him!

So yeah . . . it was a good day.  And just so everyone understands, we are not avoiding talking about cancer, or Keeghan's tumor.  He isn't in denial.  He knows what is going on, at least to the extent that he needs to know.  I will not tolerate anyone making him think he should give up (yes, that is a warning to anyone out there who might be reading this and think they should feel sorry for Keeghan).  That boy has the most positive attitude - he is amazing.  The rest of us have chosen to follow his example and stay positive.  Every.  Single.  Day.  Anything less is unacceptable.

Mike and I have our occasional breakdowns.  That is to be expected I guess.  This is our son, and we'd both do anything possible to change all of this.  That does not mean we aren't still fighting.  It's "game on" people!

Thank you to everyone for their offers of help, but there really isn't anything to help with at this point.  Trust me, I know how frustrating it is to want to do something and not be able to!  But bringing meals to us would drive Mike crazy.  Cooking is therapeutic for him, and if that were taken away?  Well . . . let's just say it wouldn't be pretty.  Sometimes it is hard to do the mundane things like laundry, dishes, etc.  I think to myself, "My son has cancer and I'm loading the dishwasher!  ARGH!"  But those are the things that keep life real and normal.  Trust me though - when we need help, we will ask!

The only bad thing about the day was that the doctors at Walter Reed did not get an appointment scheduled at Children's Hospital yet.  I've already warned them that I will be pestering them until they get it done though.  Hopefully they believe me - for their sakes.

As always, love to everyone out there following our story and praying for Keeghan.

Shannon

2 January 2008
We met with the oncologists and neurosurgeon at Walter Reed today regarding Keeghan's latest scans.  The belief at this point is that the tumor has come back, and has come back even more aggressive than before.  From the rate of growth, they believe it is likely now a grade 4 cancer instead of the grade 3 it was at original diagnosis.

Dr. Cooper, the neurosurgeon, does not recommend surgery at this point.  We have asked him to speak with Dr. Weinberg, Keeghan's neurosurgeon at M.D. Anderson.  Dr. Cooper explained that there are two schools of thought on treating this type of tumor - aggressive being to operate and remove as much as possible, conservative being to try chemo and radiation to stop/slow it's growth instead.  The concern is that surgery could cause other problems, i.e., paralysis, that would reduce Keeghan's quality of life.

The doctors at Walter Reed are referring us to the brain tumor specialists at Children's National Medical Center here in DC next week.  Hopefully they will have a treatment plan (Phase II clinical trial) that yields positive results.

It is possible that he will be back in treatment, i.e., on active chemotherapy, as soon as two weeks from now.  We ask that everyone continue to pray - we'll take all the prayers we can get for him.  It certainly wasn't good news that we received today, but we refuse to give up.  I will do my best to keep this website updated, so please feel free to check here often.

Thanks to everyone for the offers of help, prayers, and friendship.

Shannon

(my apologies to those of you that received this exact message via email - it was easier to just copy/paste it here rather than have to type it all over again)

29 December 2007
PET scan "preliminary results" point toward recurrence of tumor.

On January 2nd we meet with the oncologist and neurosurgeon at Walter Reed.

The limbo is killing me.  But Keeghan is doing well, and that is the most important thing.  He's very positive and is not letting this get him down (evidenced by the fact that he is out in the garage playing pool with his sister right now).

S.

27 December 2007
Very quick update.

Keeghan had his spectroscopy scan yesterday, and the PET scan today.  More than likely we won't have any results at all until next Wednesday when the neurosurgeon is back in.

I spoke with Keeghan's oncologist briefly today.  Honestly, the information that I got from him felt more like bullet statements than answers.

    * spot larger
    * enhances differently
    * new tissue
    * will consider sending to Houston to M.D. Anderson if surgery necessary
    * need to schedule follow-up appointment with neurosurgeon

So, we won't have true answers until next week.  Until then, as always, we stay positive.

I won't lie.  I'm terrified.  If he needs surgery, I definitely would prefer he be sent back to Houston.  But I know that TRICARE (our insurance through the military) will only fly Keeghan and I to Houston.  We don't know at this point if Mike will be allowed time off work like he was in San Antonio, or how he and Maxx will get to Houston, where they'll stay while there, what we'll do with the pets, etc.  My mind is fried just from all the "what if's."

I had a momentary attack of tears earlier, and Keeghan came into the room and saw me.  He asked why I was crying, and I told him that I just wanted him to be done - with needles (it took Mike two tries to get an IV started on him today), scans, doctors . . . cancer!  He put his arms around me for a hug and said this:

"Mama!  How long have we been doing this?  A year and a half now?"

(in my head I was thinking "20 months, but who's counting?")

"If we have to do it for a few more months . . . or weeks" (he says in a very hopeful voice) "then that is what we do!"

And once again I have to say, "Who IS this kid?!"  He's seriously THAT amazing!

I don't know when I'll update again.  Probably not until we have an more information.  For the next few days we're just going to enjoy the peace and quiet.  Prayers are welcome, as we'll likely be doing a lot of that ourselves.

Happy New Year everyone.

S.

25 December 2007 - Merry Christmas!
We made it to 10,000 hits on the site - and on Christmas Day no less!  That is so cool!

Keeghan's pool table was delivered yesterday.  Typical of this family, however, there had to be a little drama to go along with it!

The driver of the truck delivering the table had a crew of all illegal immigrants with him to help.  Of course, this being a secure Air Force Base that we live on, the crew were not allowed on base.  The truck had actually turned around and was going to take the table BACK to the warehouse and reschedule delivery for after Christmas when I received a phone call from the dispatcher.

Those of you who know me well can probably imagine how the conversation between that woman and myself went!

Needless to say, she called the driver and told him to turn back around.

In the end, the driver had to leave his illegal immigrant crew standing in the cold outside the gate and deliver the pool table by himself!  It took Mike and I about an hour to get the table put together, and far less time than that for Keeghan to beat us both at a game of pool!

Keeghan was a happy little pool shark before Santa even had a chance to stop by!

We still need to do more to our "game room" (i.e., the garage), like buy a rug for the floor and a light to hang over the table, but it's turning into a right nice little hangout for the kids!

Christmas Eve also involved the traditional opening of the Christmas Pajamas!

After Maxx and I made the rounds of feeding dogs and cats (she is dog-sitting for two different families and cat-sitting for another right now), we headed home to open presents (and yes, she went to all those houses to take care of pets in her Christmas pajamas).
Among other things, Maxx received a box full of her favorite thing - BOOKS!  Hopefully she won't be bugging me to head to Barnes & Noble again for, oh, at least a couple weeks!  Of course, once she gets paid for all that pet-sitting, I'm sure she'll still want to go shopping!

Keeghan received a PS3 video game (to go with the PS3 that Santa was nice enough to give to the entire family) that he'd been wanting for quite a while.  I think he actually hugged it when he opened the box!  Too funny!

Mike and I had the best Christmas of all though - we had these two's smiling faces to light up our day!

As we head into the next two days' worth of scans, we will hold onto these smiles and be praying for many more smiling Christmases just like this one.

Merry Christmas to you all!

S.

23 December 2007
Just a quick update to let everyone know we're hanging in.  Game faces are back on and we are ready to fight, no matter what the results from next week's scans are.  That's not to say we don't still have our private moments of tears and anger, but we're not giving up.

I figured you all knew that, but I wanted to say it anyway.

Keeghan is too excited about Christmas to worry about it right now.  He has a POOL TABLE being delivered tomorrow morning, so that is first and foremost in his mind!  Of course, pics will follow soon.

And check this out - only 26 more hits to this website and it will have had 10,000 hits!  That is so amazing!  Thanks to everyone out there still following our story and keeping Keeghan in your prayers.  There aren't words to express our gratitude to you all.

M&S

20 December 2007
Very quick update.  Keeghan's doctor called today about the MRI he had yesterday.  The spot that has been showing up for the past 2 MRI's has grown and is now enhancing brighter than before.

What does that mean?  We don't know.  The doctor sounded like he is leaning toward it being recurrence of tumor.  NOT what we wanted to hear.

So now Keeghan is scheduled for another spectroscopy scan on the 26th at 8:00am, and a PET scan on the 27th at 10:30am.  What a way to spend the first two days after Christmas, right?

Neither of the kids took the news well.  Mike and I are holding it together right now (me just barely).  I won't lie - there is a part of me that just wants to scream in the face of every person I see, "WHY IS IT MY CHILD AND NOT YOURS?!"  I  wouldn't wish this on anyone, but dammit . . . it's someone else's turn.

Like I said, I'm barely holding it in right now.  I'm angry.  Terrified.  Every emotion you can think of, all rolled together.

Keeghan, on the other hand, is in the other room singing karaoke with his sister at the moment.  God I love those two kids!

S.

18 December 2007
Sorry no update for a while.  All is well here.  In fact, it's been amazingly NORMAL.  Some highlights of the past 2-3 weeks:

*   Keeghan has grown a full inch since mid-October!  Of course, this means new pants - again!  Can I just tell you how joyous it is to have a growing boy?

*   Mike has finished his Masters Degree from Baylor.  When Keeghan was diagnosed, Mike was only a couple months away from finishing but he had to finish a Graduate Management Project.  Well, obviously, his mind wasn't exactly on it in those first few months (year?) of Keeghan's treatment.  But it is finished now and he is officially a Baylor graduate!  Congratulations Mike!

*   Maxx has had two cheerleading competitions and what feels like 10378947381902374 practices since my last post.  They took 2nd Place in their first competition in Baltimore, and 1st Place for their division in Richmond, VA.  The Richmond win guaranteed their bid for Nationals, so it looks like we'll be in Winston-Salem, NC in March for that (look out Jerrie, here we come - and we're bringing the dog!).

*   I am trying to stay busy, which isn't difficult!  Trying to keep up with teaching these two smart (aleck) children!  Some subjects they can't get enough of - like algebra, of all things!  Then there are others that we have a harder time with.  But overall things are going great and they continue to amaze me every day.

So that is it for us right now.  Keeghan has his next MRI tomorrow.  So you know that means I've been doing my normal stress out.  If you're reading this and have a free minute to say a prayer, light a candle, or just send out a positive thought for Keeghan, we'd all appreciate it!

Hopefully I'll be posting new pictures soon.  We had actual photographer pictures taken recently, so hopefully I'll get those on here by the end of this week.  I could scan what I have, but the photographer is supposed to be sending me a disk with them on it and that would be SO much easier!  Be on the lookout for them though!

I'll update again as soon as we hear results on the MRI.

S.

25 November 2007 - The Christmas Tree is UP!

My little elf assistant and I got the Christmas tree put up today.  Keeghan and I really get into the Christmas spirit when decorating the tree.  He loves to discuss the story behind all of the ornaments.  Mike and I have ornaments that were on our family Christmas trees when we were children.  Maxx and Keeghan have each got one ornament for every Christmas since they were born.  We buy one new "family ornament" each year.

And then there are some goofy ones as well.  Example: the first Christmas Mike and I were married, we invited three guys from his barracks (he was still in the Army at the time) to spend Christmas with us.  To make them feel like it was their Christmas tree also, we bought each of them an ornament with their name on it.  We had planned on giving the ornaments to them afterward, but we forgot to!  So for 15 years now we have put 3 ornaments on our tree that say "Bill, Jeff, and Mark" on them.  Keeghan loves that story!




Figuring out where to put the tree was more of a challenge than usual this year.  You see, we have a 61-lb toddler with a behavior problem living in our house now.  So the tree had to go in the dining room, where we can block Ceili from getting to it.

She's not very happy about it either.

I love this picture - Keeghan and I both look utterly confused!  Look at the size of that ball of hooks he's trying to untangle!

You might wonder - where are Mike and Maxx during all of this?  Well, after Mike took a few pictures, he went out back to have a fire in his fire pit.  Maxx spent the whole time we were putting the tree up in the garage playing a video game.  Every once in a while she would come in and say "It looks pretty Mama" and then head back out.

What would I do without my little elf??  He's the only one as OCD as I am about Christmas!
In the end, Keeghan and I managed to get the tree up and have it look fabulous!  We were quite proud of ourselves!






22 November 2007 - Happy Thanksgiving!
Being a homeschooling family, we have a big white board on our dining room wall.  So we started writing things we are thankful for.  I thought it would be fun to share.  It's still evolving, so I may have to update this picture later.

I hope that you're all having a wonderful Thanksgiving!

Shannon

21 November 2007
Sometimes Keeghan is just too cute.  Yes, I know - I'm biased.  But seriously, the boy cracks me up!

He started the day off today with Mike having to draw his blood.  It's been over a month since his last labs and, at that time, his white blood cell count was still a little below normal.  He's had a little bit of a cold for the past few days, so we wanted to see where his counts are at before heading into a long weekend.   But on top of having to have labs drawn today, we all had to go into the clinic for flu shots, which means for Keeghan it was a two-needle-stick day.

Mike took his flu shot and (the big baby) said it hurt a little.  Maxx went next, and then Keeghan.  Keeghan was trying so hard not to cry, but he still did.  Maxx held one of his hands while I held the other, and Mike stood in front of him.  Talk about family support, right??  Once the tech had given Keeghan the shot and the needle was out of his arm, I said "It's over."  Keeghan then started crying all over again!  We asked if it had hurt and he said it didn't.  So we asked what he was crying about and this is what he says:

"Now I'm upset about the fact that I got upset to begin with."

Holy cow I love that boy!  Only Keeghan would say something like that!

S.

19 November 2007
It seems that this website has become very . . . PC I guess you'd say, in recent months.  I'm not sure when that happened, or why.  As those who have followed this story since the beginning surely know, I am a fierce advocate for my child.  In the beginning I used to write about that quite a bit.  Lately it seems all I do is tell everyone what we've been doing lately.  I feel like I've become more of a Press Secretary here than anything else!  Maybe it was when I took over as the president of the parent support group at Walter Reed that I subconsciously started making my posts more friendly (and certainly less Shannon-ly!).  I still have my days when I want to get on here and rant about cancer, lousy doctors, nurses, human beings, etc.  I don't know why I don't anymore.  This post should remedy that a little though, as I have some things that have been running through my head that just need to get OUT.

It was recently pointed out to me by a nurse at Walter Reed that I can be very vocal when it comes to letting people know I haven't always been happy with the treatment Keeghan has received.  She's right - I am very vocal.  As I told her, I am Keeghan's greatest advocate and I take that job very seriously.

That got me thinking about whether or not moving to Washington, DC was the best thing for us or not.  We never hid the fact that we didn't like San Antonio.  But we never took into account what the change in hospitals would be like.  Keeghan went through so much in Texas.  He was diagnosed at Wilford Hall (the Air Force hospital in San Antonio).  Then he spent two weeks (and went through two surgeries) at M.D. Anderson in Houston.  Then it was back to Wilford Hall for six weeks of chemotherapy, six weeks of radiation, as well as an extra 1-2 weeks as an inpatient due to a neutropenic fever.  We got to know the staff - both in the clinic and on the ward - very well.  They were all so good with Keeghan, as well as with the rest of us.  Then we moved here where, in my opinion at least, we've always been treated like Keeghan was only *sort of* a cancer patient.

Every time we've had to go to the ward at Walter Reed for anything, they've treated us like an imposition.  Yet I know other families that, when they go to the ward, are treated like family.  I've had doctors here treat Keeghan in ways that I know the docs in Texas wouldn't have.  Example: when Keeghan spiked a fever a few months ago and had to go in for daily antibiotic treatments at Walter Reed.  We got the word that he could stop the antibiotic treatments on a Saturday.  The problem was that his port was still accessed.  When I said that I still wanted to bring him to the hospital to get de-accessed, his doctor actually suggested leaving it accessed until Monday so that we didn't "bother the ward nurses" to do it.  I don't think the doctors we dealt with in Texas would have suggested that.  Keeghan's comfort always came first with them.  I also don't think that the nurses on the ward in Texas would have been put out at all to have to do it.  They knew Keeghan, and even more, they liked Keeghan.

Another thing that used to make me crazy when we first got here was the fact that no one could ever remember Keeghan's name.  They would call him by his last name all the time and I would constantly remind them that his name was Keeghan.  Once, the nurse that normally checked patients in tried to check Maxx in instead of Keeghan!  She was actually going to take her temp and blood pressure!  We had been here and going for weekly appointments at the clinic for about three months at the time.  I was always called "Mrs. Keeghan's Mom."  So many little irritating things that used to infuriate both Mike and I.

I don't know why I'm ranting about all of this now . . . other than just wanting to add a dose of reality to the posts I've been writing lately.  Our day-to-day lives really have become gloriously NORMAL lately, and I can't tell you how good that feels.  But sometimes - like today, when I'm thinking about (stressing about?) Keeghan's upcoming MRI, and thinking of all the families that we know that are still in (or in too many cases, back in) active treatment - I start to wonder if we would have been treated better if we had not moved.  In this case, hindsight isn't 20/20 because I really don't know.  Yes, I think it would have been better.  I really just wish it had been better here though.

As you can probably tell by now, sometimes my mind gets bogged down with way too many things!  After so many months of having to advocate for him every single day, it's hard to stop I guess!

I'll stop ranting now though . . . thanks for *listening*!

S.

11 November 2007
The Children's House at Wisp Mountain - a project of Believe in Tomorrow.

We got out of town again for a few days thanks to the generosity of Believe in Tomorrow.  This time we went to the mountains of western Maryland.  It was a beautiful location to just hang out and enjoy being a family again.  It even snowed!  Ok, it was only a little, but still . . . we loved it!

The only part that was a bit unnerving were the bear warnings.  They were everywhere!  There was even one stuck to the refrigerator door.  In fact, we couldn't even take out the garbage like we normally would.  It had to be loaded in the car and driven down the road to some big trash compactor.  Craziness!

The cabin we stayed in was gorgeous though.  It had three levels with big, gas fireplaces on the 1st and 2nd levels.  The top level was the master suite.  The main level had living room, kitchen, 2 bedrooms, and dining area.  The lower level had another bedroom along with a big screen television (with surround sound that Mike LOVED), a pool table, and a computer desk.  Something for everyone!




Keeghan's favorite thing to do while we were there was play pool!  We knew that he enjoyed playing, but we didn't realize exactly how much.  The boy was on the table every chance he got!






All in all, it was a great weekend.  But back to the city we headed on Sunday.  Now we are gearing up for Thanksgiving, which we'll be spending just the four of us again this year.  We have plans to have a Thanksgiving dinner with friends on Saturday, so I think we'll keep the turkey to a minimum on Thursday (no need to get sick of it, right?).

I hope that everyone is doing well.  Keeghan's next MRI is on December 19th - one month from today - so any prayers, happy thoughts, positive energy, etc. you want to send his way will be eternally appreciated by his stressed-out-about-it-already mom!

S.

1 November 2007
There's a big difference between Keeghan now and Keeghan this time last year.  Here is a little comparison for everyone.

Here is a pic of the kids with Grama last year on Halloween (this was taken after they got back from trick-or-treating).






This was Keeghan last night, just before going out trick-or-treating.  I told him to look scary, so what does he do?  He giggles.  So Keeghan!

Look at all that hair compared to last year!  He just looks so healthy now.  It chokes me up . . .

More pics from Halloween can be found on the pics page.

S.

29 October 2007
While last week started off with our LONG day at Walter Reed, the rest of the week definitely got better!  On Tuesday, I received a phone call from an organization called CureSearch offering us tickets to see the Washington Capitals hockey team play against the Vancouver Canucks.

Hockey!  Yay, we love hockey!

So yes, we jumped at that offer!  And not only did we get to see the game, but Keeghan got to ride the Zamboni during the first intermission!  I (read: dummy) forgot my camera that night, so I had to buy a disposable one in the gift shop.  Once i get the pictures developed - and if any of them turned out well - I'll scan them and get them posted.  In the meantime, below is a picture that a gentleman at the game took and was nice enough to email to me.

Besides getting to ride on the Zamboni during intermission, afterward Keeghan got to scoot over to the drivers seat and dump the ice!  How cool is that?

Although Maxx didn't get to ride the Zamboni, she had a great time anyway - she got to see blood on the ice.  As far as she is concerned, that is what makes a good hockey game!

Strange child.

S.

Keeghan on the Zamboni at the Washington Capitals Game, October 26, 2007.







23 October 2007
It's GONE!!!

Yes ladies and gentleman, Keeghan's port is gone!  It was removed yesterday afternoon after a very, VERY long day of waiting.  I won't bore you with the details of how angry Mike and I were, or of the complaints that were filed with the Patient Advocate's office.  But all told, we were at Walter Reed from 6:30am until 3:30pm - nine hours! - for Keeghan to have a procedure that took five minutes.  At least that is how long the nurse in the recovery room told us it took.  Keeghan was taken to the OR at 1:05pm and was in recovery at 1:35pm.

Inefficiency.  It irks me.  But, it's over.  Keeghan is a little sore today, but it hasn't stopped him from playing video games, so that's a good sign.  By the weekend he should be feeling pretty good.

Hallelujah, it's over!

S.

18 October 2007 - again
I forgot to tell about one thing earlier!  We went to an Octoberfest Family Retreat in Front Royal, VA last week put on by Special Love for Children with Cancer.  We stayed in the same lodge that Keeghan stayed in when he attended camp there back in August.  It was a lot of fun, although Mike and I got hazed . . . or at least that is what I'm calling it!  Our group was going to be in a parade through the town of Front Royal as part of their annual Festival of Leaves.  Mike and I were "elected" the Pumpkin King and Queen and had to wear these outlandish wigs and crowns . . . there are pictures, but I don't think I'll post them here!  Too scary!  Needless to say, we're very happy that no one in Front Royal knows us!

The rest of the weekend was fun though.  We've never really felt like a family that needs a support group to get through this journey with cancer, and Mike and I are neither one comfortable with group-hug-friendship-circle situations.  But the one thing we learned this weekend is that sometimes it's good to go to those things anyway, even if it is outside your comfort zone, because maybe you can be the one that provides support to someone else.  Or maybe you have suggestions on how a family can deal with a situation that you've dealt with before.  As a military family, we tend to be overly self-sufficient - to the point that we annoy those around us that want to provide support!  I never thought that other families going through this would not be the same way.

It was very enlightening.  Who knew?

S.

18 October 2007
8:00am and all is well . . . .

Actually, all is well because the brats are still up in their beds!  Ah, the beauty of homeschooling!

All really is well around here these days though.  Keeghan is doing great,  and is SO enjoying "normal life."  He's grown an inch in the past couple months, which he's very proud of.  Nothing like proving those endocrinologists that said he might not grow for a couple of years wrong, right?

He's so my child.

The other thing that Keeghan is getting to do now that he hasn't been able to do since we moved onto this base is go hang out at the Youth Center with friends.  All last winter we had to worry so much about him being neutropenic, and let's face it, a place where kids hang out is going to be germy!  But Maxx is on a competition cheerleading squad now that practices two nights a week at the Youth Center and one of her good friends - and fellow cheerleader - has a younger brother Keeghan's age.  So the boys go hang out and play pool while the girls are at practice.  Keeghan loves it!

Let me tell you though, it's a little eerie for me to be in the house with so much silence!  Mike comes home from work and instantly wonders what is wrong because there are no video game sounds from Keeghan, or blasting music from Maxx, or me talking to anyone.  Very surreal.  But so very cool!

Keeghan started Occupational Therapy last week at Georgetown University and the one thing we learned was that he really should have been in OT a LONG time ago.  Not so much because of the left-side deficit he had after surgery though (or, at least, in my opinion).  I think this mainly because it is the problems with his right hand that we're seeing, and his right side was not affected by the surgeries at all.  We were told while he was on chemo that one of the chemo meds he was getting might affect his feet and hands.  It did.

The way he holds a pencil now has changed so much that he can't write in cursive at all.  It's hard to explain, but he curls his thumb over the top of the pencil when he grips it, and he doesn't move his wrist freely when he writes.  Instead, he moves his entire arm, which you just can't do with cursive writing.

I didn't push him to write in cursive last year because it was so difficult, and would have him in tears.  It wasn't worth it to put him through that.  But now that he can write for longer periods without becoming fatigued, I'm making him write more.  But I never thought to force him to write in cursive.  I want him to enjoy the process of writing, so I didn't think anything about the fact that he always prints.  The therapist asked him to write the alphabet in cursive though, and he couldn't do it.  So, we're going to start practicing that at home.

Other than that, everything else is going well for Keeghan.  He loves PT at Georgetown - that's the highlight of his week!  Also, he's having surgery to get his port removed next Monday.

All together now - WOO HOO!  NO MORE PORT!

Ok, as you were.

Keeghan is certainly nervous about having surgery again, but his excitement over not having that port outweighs the nerves.  I'll be sure to post here Monday night to let everyone know how everything went.

Thanks to all of you persistent souls out there that continue to read this!  Also a big thanks to the new people that happen to find our little corner of the web and stop to say hi in the Guestbook!

Take care!  S.

7 October 2007
Yesterday was an amazing, heartwrenching, uplifting, tear-filled day!  Mike, Keeghan and I walked in the National Brain Tumor Foundation's 1st Annual DC Angel Adventure Walk.  There were about 190 people walking which, considering it was the first ever Angel Adventure walk in the DC area, was a good turnout.

There were a few brain tumor survivors there, but Keeghan was the only child survivor.  There were also quite a few "teams" walking in memory of a loved one.  A number of people were asked to speak before the walk began - Keeghan being one of them.  We told him we would walk up to the microphone with him.  He's such a good little man!  He took the microphone and, in a strong voice, thanked everyone for showing up to support a cause that was very important to him, and said that he knew how all those other survivors out there felt because he'd been through it too.  I then took the microphone and gave a short summary of what he had been diagnosed with and the treatment he had been through.

Yeah.  There were a lot of tears shed!

I have to send out a huge thanks to our friend Ruby who came to walk with us.  She is another parent I've got to know through Walter Reed, and is the mother of a 2-year-old leukemia survivor.  It was great having someone else there walking on our "team."  Next year, for all of you family members reading this - or friends that live nearby - I would LOVE to have a bigger team walking in Keeghan's honor.

Mike and I both signed up to be on the planning committee for the DC Angel Adventure Walk next year.  I know, I know.  Like I have the time, right?  But this one is important.  Yesterday's walk, with only 190 walkers, raised $65,000 that will go toward brain tumor research.  How can we NOT want to help with that?  My measly efforts only raised $325 for the cause this year - not anywhere near my $1000 goal - but next year I'll raise more.

So below is a great picture of Keeghan in his Angel Adventure shirt.  He was one heck of an advertisement for brain tumor survivors yesterday!

Keeghan at the 1st Annual DC Angel Adventure walk sponsored by the National Brain Tumor Foundation.





The official family portrait from the beach!

Taken July 31, 2007

Ocean City, MD





26 September 2007
Wow!  I knew it had been a while since I last updated, but I didn't realize it was THIS long!  Sorry!

Keeghan's scans last week went well.  He had the PET Scan on September 17th.  I don't know the exact wording of the results (so, sorry to all you medical types out there), but I do know that nothing showed on the scan that pointed conclusively to recurrence of the tumor.  Something was written on the results about the fact that a low-grade astrocytoma wouldn't show much activity, but since Keeghan's tumor was a high-grade astrocytoma, I'm not too concerned.  The last thing I want to think about right now is his cancer coming back as a new kind of cancer!  Oy!  I have enough to worry about, thankyouverymuch!

Keeghan also had another MRI on September 20th.  We had thought this one was going to be with spectroscopy like the last one, but apparently the radiologist at Walter Reed decided he didn't need it again as he had just had it in August.  The same spot still enhances and hasn't grown.  Dr. Harper said the the spot "enhanced a little differently" this time.  What does that mean?  I have no clue.  But the fact that it has not changed in size since July makes me feel better.

So what is the plan now?  Well . . . let me just tell you!

Keeghan is getting his port taken out on October 22nd!
He had his surgical consult yesterday, so it is all set.  We have a pre-op appointment on October 9th, and then he will have surgery on the 22nd.  It is outpatient surgery, so he'll be able to come home that day!  I can't tell you how excited the little guy was as we left the surgical clinic - he had an ear-to-ear grin and a new skip in his step!  It was cute.

So for now we are concentrating on school work as much as we can.  With all of the appointments in the past week, it's been a challenge.  Hopefully soon we will get on a schedule of school every day with the only appointment each week being PT at Georgetown.  Although . . . he is supposed to start Occupational Therapy at Georgetown next month . . .

Seriously, I don't know how people whose kids go to "normal" school do it!  With the schedule we have, it's good that we can do school work anytime, any day.

Hope everyone is doing well!  Check out the 2007 Pics page for some new pics from Camp Fantastic (the camp that Keeghan went to for kids with cancer).

S.

7 September 2007
All is going well around here these days.  The kids and I started school again this week, so life feels like it is getting back to normal.  We were at Walter Reed  yesterday for Keeghan's monthly antibiotic treatment.  We had thought he'd be getting these through the end of the year, but his doctor said yesterday that he may only have to get one more.  Keeghan was thrilled!  He hates the Pentamadine, saying it leaves a horrible taste in his mouth.  Yesterday it seemed to taste really bad, and he ended up in tears.  The poor guy . . . I honestly think he is just SO ready to be done, and it's so hard for the rest of us to watch him get so upset and not be able to help.

We have ten days until the PET scan.  Even though I've now had more than one doctor tell me that it probably won't give any more information than we already have on the spot that has shown up on the last two MRI's, I'm still hoping.  This limbo thing is killing me.  I am so scared, but I can't let Keeghan or Maxx know that.  Mike and I want so much for him to be finished.  Keeghan wants to get his port taken out.  Every time we mention this though, we get comments about leaving it in "just in case."

Do they really know what those three words do to a parent?  I don't think so.

I understand their thinking.  I just wish they could understand that Keeghan will not feel like he is finished with treatment until that thing is out.  And if he ever needs one again (oh God, please no . . .), then they can put another one in.

A few nights ago, Keeghan was having a hard time sleeping.  I went into a total panic because the only time Keeghan usually has a hard time sleeping is if he has a fever.  Mike is in San Antonio all this week, so in my mind I was already making a plan of how I was going to get the kids up, in the car, and to Walter Reed, while thinking who I could call in the morning to come take care of the dog.  It was craziness!  Luckily he didn't have a fever, but still . . . what a nightmare!  And the whole reason we would have to get to the hospital is because of that port.  As long as he has it, fevers will mean a trip to the hospital - even if his counts are good!

Those scans have to turn out well!  The boy deserves a break.

20 August 2007
First off, the most important news - Keeghan's MRI.  Nothing has changed.  The spot that enhanced last month enhanced again this month.  It hasn't grown though, which is good.  As far as the spectroscopy scan goes, not much in the way of news from that other than "nothing conclusively points to recurrence of tumor."  I'm taking that as a good sign.  He will have yet another MRI next month as well as  PET scan.  I'm not sure exactly what that is yet, but hopefully it will give us more information.

Until then, well . . . limbo is my new home.

Now on to happier things!  Believe in Tomorrow, the organization that provided the beach house for us a couple weeks ago, called me last week to say that they wanted to donate 18 tickets to the August 19th Baltimore Ravens vs New York Giants football game.  A business owner from the Baltimore area owns a private suite at the stadium where the Ravens play and he wanted to donate the use of it to Believe in Tomorrow for the game.  Believe in Tomorrow called me and said they'd like to donate the tickets to Parents and Children Fighting Cancer (the group I'm president of at Walter Reed).

So, I found families from our group to use the tickets.  Believe in Tomorrow called me again a few days later to say that they had tickets to go down on the field before the game and that they wanted to offer them to the four of us.  That's how we got the picture of Keeghan with three of the Ravens cheerleaders (see the 2007 Pics page).  The suite itself was amazing - fully air-conditioned, catered, with its own bathroom.  Just awesome!  This was watching football in style!

We got home at about 11:30pm last night, and it was 1:00am before we got the puppy calmed down enough to put her back in her crate.  So we're tired today.  But it was definitely worth it.  Check out the new pictures and I'm sure you'll agree!

Hopefully soon I'll have pictures from the kids' trips to camp to share with everyone as well!

S.

5 August 2007
What a week at the beach we had! Let me see if I can do a quick sum-up for everyone.

Day 1 - Saturday, July 28

Arrive at the Believe in Tomorrow Children's House by the Sea in Ocean City, MD around 5:30pm. A group of volunteers were there to welcome us, give us our keys, and give us a welcome basket that included toys and beach stuff for the kids as well as free passes for a speedboat ride, discount coupons for restaurants at the boardwalk, etc. We walked down to the beach (which was about 100 yards away from the house we were staying in) to check it out.  Mike and I commented on the fact that it was the first time the kids had been to a beach since the weekend before his cancer diagnosis.

Day 2 - Sunday, July 29

Went to the boardwalk and used our free passes to ride the OC Rocket speedboat. It was kind of cool - not near as exciting as we expected, but fun nonetheless. We bought Keeghan his own boogie board, even though there were boogie boards in the room for us to use.  A little surfer dude needs his own board, right?

Day 3 - Monday, July 30

Orientation - met with Wayne from Believe in Tomorrow, who was the property manager/cruise director for us. We were given a list of activities that we could sign up for during the week. All of it was completely free. It was insane! We spent that afternoon at the beach, where Mike and the kids caught some serious waves with the boogie boards! I can't tell you how awesome it was to watch Keeghan out there riding the waves with his ear-to-ear grin! Amazing!

That night, all of the families (four in all) went to Hooper's Crab House for dinner. Again - free! We could order anything we wanted to eat and drink from the menu and it was all covered. I had the whole lobster stuffed with crab. Mike had steak and lobster. The kids ate their body weight in crab! I have to admit, we felt a little like thieves walking out without paying!

The restaurant was right on Isle of Wight bay. We sat out on the patio to eat, so the kids were able to look over the rail and see jellyfish in the water. It was great!

Day 4 - Tuesday, July 31

We spent this entire day on the beach! We took a cooler, umbrella, beach chairs, boogie boards, and lots of sunscreen! That night, Wayne and all the volunteers provided a cook-out on the deck at the beach house. There was a ton of food, a lady that did arts and crafts with the kids, and a clown that entertained the younger kids. I met the founder of Believe in Tomorrow and we discussed different ways that Believe in Tomorrow can help out the military families at Walter Reed.

After that, we went down to the beach where professional photographer John Mick took portraits of all the families. We will receive an 8x10 in a couple weeks, along with all the other pictures he took on a disk.  I can't wait to see them!

Day 5 - Wednesday, August 1

We went fishing! There are a number of boat-owners in Ocean City and the surrounding area that volunteer to take families out on their boats.  So we went out with two gentlemen named Bill and John on a pontoon boat. They took us to see the wild horses on Assateague Island. On the way back from seeing the horses, we got to see a bunch of dolphins swimming right beside our boat! It was unbelievably cool! They swam right under us! Then we went fishing (Maxx and I fishing? - holy cow!).  Keeghan and Maxx caught the most fish. I caught two I think.  Mike caught a crab - with a fishing hook! Only he could do that!

Day 6 - Thursday, August 2

We started off the day at the Jolly Roger Amusement Park. It is mostly a water park, but had a few regular rides also. We decided to go down this slide called "The Rapids" first.  Mike and Keeghan went first on a double inner tube.  Maxx and I followed behind on individual tubes. When I got to the bottom, Mike told me that he and Keeghan were both thrown off of their tube on the first turn down the slide. Keeghan hit his head on the side of the slide and then Mike grabbed him and held him on his belly (sliding down the slide on his back) for the rest of the way. Needless to say, Keeghan was pretty freaked (as were Mike and I). So the boys didn't go on any slides after that. Maxx and I went on one more but then it just didn't seem very fun anymore.

So we left, went home and changed, and went back down to the boardwalk. We walked around there for hours! Keeghan wanted to ride the big ferris wheel, so we did that. We bought some souvenirs - a fighting Irish shirt for Keeghan, blouse for Maxx, kites, and a flag for my yard - and then we headed back to the beach house to watch a movie.

Day 7 - Friday, August 3

We were pretty much beached out by this day.  Since it was my birthday, I decided I wanted to go have lunch in Delaware. Ocean City is only about 5 miles from the Maryland/Delaware border. I had never been to Delaware before, and since there are only a handful of states that I haven't been to, I just HAD to go there! So we had a fabulous seafood lunch in Bethany Beach, and then drove up to Rehoboth Beach before turning around and driving back to our condo.

At 5:00pm, there was a party on the Beach (again, completely run by Wayne and his army of volunteers). They had hula hoops and limbo for the kids, stacks of pizza, and then came the real fun . . . a game of Survivor for the adults!

We started off in teams of four (and of course Mike and I were on opposite teams). The first challenge was to hold hands and move a hula hoop from one end of the line to the other. Then we had to race each other while carrying an egg on a spoon.  Then it became an individual competition - no more teams. The next challenge was an eating one. We each had a plate with two chocolate chip cookies (with green food coloring in them) and two big gummy worms on it. It was a race to see who could finish their plate of food first (the kids were a bit jealous of this race I think).

I got off to a great start - I shoved a whole cookie in my mouth . . . and then it just stuck there. Once I got it down, I knew I couldn't do that again. So I ate the next one in small pieces. Then came the gummy worms - WAY too much chewing. So yeah. Those went down whole! Mike took first place in the race, and I took second. Woo hoo for us . . . ugh!

In the end, it came down to me and one other lady for the win. The challenge was a beanbag toss. Alas, she came closer to the target than I did, so I came in second! But it was fun! There was birthday cake afterward but I just couldn't face it! Not after the cookie-worm appetizer!  Keeghan and Maxx enjoyed it though!

So that was our week. It was unbelievable. The fact that Believe in Tomorrow does this for so many families on a weekly basis just blows my mind! I'm just so impressed with all of the volunteers that Wayne has working for him - from young people to retirees - and the amount of caring all of these people have for families like ours.  These are truly some amazing people!

S.

23 July 2007
I didn't realize it had been so long since my last post.  Time flies when you're . . . busy.

No news on Keeghan's MRI.  He's scheduled for another one on August 10th.  This one is going to be done with something called "spectroscopy" which I guess will allow the doctors to look at the spot that enhanced and determine whether it is new tumor or something else.

So, once again, we wait.

In the meantime, we've been busy.  On July 18 we attended a "Victory Celebration" for Slater, the little boy that we knew from Walter Reed who passed away.  It was an amazing service, but so hard . . . Keeghan and I cried through most of it.  Probably one of the hardest things my kids have gone through, but we're all glad that we went.

Maxx left for BRASS Camp yesterday, which is a camp specifically for the brothers and sisters of kids with cancer.  I am so excited that she decided to go because I think it is going to be a great experience for her.  But I miss her!  This is the first time in over a year I haven't had her silliness around to make me laugh.  I know Keeghan is missing her too.  But he gets to go to his own camp - Camp Fantastic - which is for kids with cancer, on August 12th.  Both camps are put on by an organization called Special Love for Children With Cancer.  It is just amazing to me that there are organizations out there like this, and I'm so glad that the kids are getting to have these experiences (even if it does mean I go a little crazy without them).

Ok, I'm off to read my new book (some obscure thing about a boy wizard . . . I'm sure you haven't heard of it . . . ).  More updates will come as I get them.  We are leaving on the 28th for the beach for a week.  We are getting to stay at a condo on Fenwick Island, DE for free!  This time it is through another organization called Believe in Tomorrow.  We have to bring our own linens, and that's it!  We'll be back from there on August 4th and have a week of down time before Keeghan's MRI and camp.  If I don't update before, I'll definitely update that week.

S.

12 July 2007
Keeghan had his quarterly MRI yesterday.  The first response we got on it was that it looked good.  Then today, we heard something different.

So . . . here's the deal.

There is a very small spot on Keeghan's MRI that enhanced.  It is in a new area from the area they've been watching closely for the past year.  But there's "no new tissue" according to the radiologist.

So what does that mean?  We don't know.

The doctors are going to look at his scans at their next tumor board.  They're also sending the scans to Dr. Weinberg in Houston and going to ask that the tumor board there look at them.  His MRI's are going to be bumped up from once every 3 months to once every 4-6 weeks for now so that they can watch this new area.

Other than that?  We wait.

All prayers, positive energy, dancing in circles under a full moon, etc. welcome!  Seriously.  Whatever it is you do, please do it and think of my baby.  I'm honestly a wreck, but everyone that knows me know that I'm an emotional basket case most of the time anyway, and I really hate "hurry up and wait."

We've told Keeghan.  He's upset, obviously.  But we've told him that we will face this just like we've faced everything up to this point - with hugs, smiles, and a lot of humor and sarcasm thrown in for good measure.  It's what we do.

Please keep Keeghan in your thoughts.

S.

Support our team for the National Brain Tumor Foundation Angel Adventure Walk on October 6, 2007

Click here to visit our team page!

10 July 2007
"I used to think that having cancer was the worst thing that could happen, but now I know that the worst thing that can happen is having a friend have cancer."

Keeghan lost a friend today.  He was 7-years-old and just a really great kid.  Keeghan really only got to meet him once, but there was a definite connection.  I think Keeghan saw in Slater a little of himself - full of spunk, funny, and a real fighter.  Both Keeghan and Maxx are taking this very hard.

Please, keep Slater's family in your prayers.  Pray for them to have the strength to get through this.

Shannon

1 July 2007
New photos added to the 2007 Pics, Vol 1 page from last night's performance of The Little Mermaid!

27 June 2007
So shut up, shut up, shut up
Don't wanna hear it
Get out, get out, get out
Get out of my way
Step up, step up, step up
You'll never stop me
Nothing you say today
Is gonna bring me down.

That was the chorus to the song Keeghan was singing at the top of his lungs in the car on the way home from Walter Reed today.

Why was he singing it?  Because today was his last chemo!  So I think the song was very fitting.  Needless to say, he's in a very happy mood tonight!

As for me?  Holy cow, I can't tell you how happy I am.  So why do I feel like I'm fighting back tears?  And I'm not talking about just a few happy tears.  I feel a really good bawl coming on.  Hopefully I can hold it off until after the kids go to bed . . .

Mike is in Orlando this week at a conference, and I know he's really feeling the fact that he's not here for the last chemo.  The funny thing is that the kids have other stuff going on that has almost seem to diminish the excitement of today's appointment.  On Monday they both auditioned for parts in a play here on base being put on by the Missoula Children's Theater.  The play is The Little Mermaid.  Keeghan is going to be a Town Crier, and Maxx will be a Sea Scout.  They have rehearsals every day this week and then the play will be on Saturday night.  Thankfully Mike gets home Saturday afternoon, so he won't miss it!

Some of you who have been reading our story since last year may remember that Maxx performed in The Frog Prince last year, also put on by the Missoula Children's Theater.  I'm just so happy that Keeghan is able to be a part of it this year.

It's just so crazy to think of all the things Keeghan has been through in the past year, and to think that, for the most part, it's over.  He still has MRI's every three months (his next being in just a couple of weeks), and he'll be going in to the clinic for his monthly antibiotic treatment and for labs for a few months still.  He is going to be starting physical therapy and occupational therapy at Georgetown University Hospital soon.  Also, there's one last surgery to be had - to remove his port.  The doctors said today that the port can be removed any time.

It's all so scary to me!  For 14 months now we've been actively doing something.  Now we're stopping?  It's hard to explain . . . it's . . . terrifying.

The kids and I went to the inpatient ward while we were at Walter Reed this afternoon to visit a little guy that just got diagnosed in April - almost a year to the day after Keeghan's diagnosis.  This boy is 7-years-old and has a different kind of cancer than Keeghan, but Keeghan has still kind of adopted him.  He really feels for this little guy and what he's going through right now with the heavy chemo, hair loss, neutropenic fevers, vomiting, etc.  Keeghan remembers all of that all too well and hates to see someone else going through it.

I was talking with the little boy's dad, and he made a comment about how Keeghan looks so normal.  It made me think about how I used to fear that I would never see him look normal again.  And now I want so much for this man and his wife to see their boy looking normal again.  It made me realize that once you are a part of this world - this community of parents watching their children fight for their lives - you never completely lose that feeling of fighting.  The fight goes on, whether it is your child you're helping to fight, or someone else's.  At least I hope that feeling doesn't ever completely go away.  I don't want to forget . . .

I guess in a way it's a little like this website.  In the beginning, there were so many people posting here, and that was so uplifting for us.  Just knowing that so many people were reading our story and praying for Keeghan was an incredible feeling.  I know that, as Keeghan has become "more normal", the posts have slowed, but in my heart I hope that all those people are still following along and praying.  For Keeghan and every other child going through this.

Crap . . . the tears are fighting to break through again.  

Today was the last chemo, but the fight is far from over.  For me.  For Keeghan. For all of us.  I hope you're all still praying.

Oh, and don't think for a minute that just because he's finished with chemo that this story is over.  It's not.

Shannon

21 June 2007
I hope that, if you're reading this, you took a moment to check out the link above.  I don't normally get into events that require you to go out asking for people to sponsor you.  It's just never seemed fun to me.  But, for obvious reasons, this one is different.

The National Brain Tumor Foundation (NBTF) is sponsoring an Angel Adventure Walk on October 6, 2007 here in Washington, DC.  I have started my own team and invite anyone who is interested to come walk with me.  Eventually Mike and the kids will be on the team as well.  I have set a personal goal for myself to raise $1000 for the NBTF.  If those of you reading this care to help me meet that goal - I say a big THANK YOU!

Keeghan finishes chemo in six days.  SIX DAYS!  It's just so hard to believe.  My heart races a little bit just thinking about it, both in excitement, and just a little panic.  It's going to feel so strange to not be doing anything to fight this anymore.  Fighting cancer has been my lifeline for over a year now.  I know it sounds strange . . . I want Keeghan to be finished with chemo, trust me!  But I also want to feel like I'm still fighting cancer.

I guess that is part of the reason I took over being President of Parents and Children Fighting Cancer (PCFC).  I want to continue to support other parents that have been through what we have.  One of the things I want to do as president of that group is that I want to make a point of supporting all of the different types of childhood cancer.  In that light, I have joined a team with other parents from PCFC to walk in the Leukemia and Lymphoma Society's Light the Night Walk on October 13, 2007.  Yes, I'm going to be walking a lot . . . but that's ok.  I need it!

Also, Keeghan has become quite the little motivational speaker when it comes to talking to other kids just starting their own journey with cancer.  Taking part in activities with PCFC, as well as the various cancer awareness walks in the area, gives him the chance to show what a positive attitude he has, and that it is possible to go through the hell of cancer treatment and continue to smile.  Both Maxx and Keeghan are shining examples of the benefits of positive attitudes.

Again, to all of the family and friends out there, if you want to join me on October 6th for the walk, I'd welcome the company!  If you just want to sponsor us, that's fine too.  And if you really just want to sign the Guestbook and tell me what a crazy fanatic I am, well, that's ok too!

Love to all!

Shannon

13 June 2007
It's a great day!  Why you ask?  Well, for many reasons.  The first of which is . . .

We are GOING TO IRELAND!
Right as I was starting this post my phone rang and it was Lucy, our Make A Wish counselor calling to give us the good news.  It will be an 8-day, 7-night trip.  None of the details as to what we'll be doing each day can be planned until we all get passports, so that is my next step.

YAY!

Ok, so enough on that.  In other news, today Keeghan started his VERY.  LAST.  CHEMO CYCLE.   He will receive his last chemo dose two weeks from today.  I asked the doctor today what the plan will be after that.  He will continue to go in for his antibiotic treatments every four weeks for six months.  It will be 3-6 months before he gets his port removed, which means he'll get labs drawn at least once a month since the port needs to be accessed at least that often.  And he'll continue with his once-per-quarter MRIs.

There is light at the end of the tunnel baby!!

Moving on to other things . . . I've been fighting through miles of bureaucratic red tape to get Keeghan referred out to a civilian facility for physical therapy.  It's seriously been a nightmare.  It's gone something like this:

Upon arrival in DC, Keeghan was referred to Bethesda for weekly physical therapy.

Bethesda could not get him in more often than once every 2-3 weeks.

Finally, in May, they could only get him once.  In the whole month!

So, me being me, I called Keeghan's oncologist at Walter Reed and said that I want him referred out to a civilian facility for physical therapy.  Preferable somewhere closer to home (Bethesda is 27 miles away).

The doc at Walter Reed had to request that Keeghan's primary care manager put the referral in.  Keeghan's PCM is here at Bolling AFB.  She's never seen Keeghan before.  So what happened?  The referral was denied.

Of course, no one bothered to call the doc at Walter Reed or me to let us know that.

I found this out a week ago while I had Maxx at the clinic for an appointment!

Yes, I again complained.

So the clinic at Bolling came up with a solution.  Let's change Keeghan's primary care manager from Bolling to Walter Reed!  Then Walter Reed can refer him out themselves.

Oh, and did I mention that the cost then comes out of Walter Reed's budget instead of Bolling's?

That's what it all boiled down to.  Bolling did not want to refer him out to a civilian because then they'd have to cover the cost.  Of course, now that Keeghan is almost done with chemo, he's going to end up having to go all the way out to Walter Reed for routine appointments when we have a clinic right here on the base where we live.

Oy . . . save me from administrators!  I can say that, by the way, since I'm married to a medical administrator!

After all that headache, Keeghan's doctor initiated a new referral today.  So hopefully soon he'll be getting the weekly physical therapy that he was supposed to be getting all along.

Alright.  I'm off to take care of my baby now.  The increased dose he's getting of Vincristine (due to his recent growth) is really beating him down tonight.  So it's been a day of good news, but it doesn't erase the side effects of the chemo.  This next two days are the toughest ones of the cycle.  But once he's through them, it (should) be smooth sailing!

S.

6 June 2007
Not much going on these days.  We've been enjoying a nice, long break from Walter Reed.  It's been three weeks since we've been there and we still have a week before we have to go back.  Nice!

Keeghan starts his last chemo cycle one week from today.  That means that three weeks from today he'll be given his last chemo dose.  Wow!  It's hard to believe.  I'm still in a bit of a panic over the end of treatment, but Keeghan isn't!  He's thrilled!

Go figure, right?

We should be hearing from Make A Wish very soon regarding Keeghan's wish.  ::crossing fingers::

I've added a couple new pictures to the 2007 Pics, Vol 1 page.  Be sure to check them out!


S.

25 May 2007
Does everyone remember the cute little puppy, Ceili?  This is how she looked on April 1st when we got her.






And this is Ceili now - at 3.5 months old!

Holy cow, eh?





23 May 2007
First off - a big thanks to Dr. Nick for the rocks!  Keeghan LOVED them!

Not much going on lately, but I felt a post was needed (just so everyone know's we're all doing well).

Keeghan is doing great right now.  We are in week four of Cycle 7 of chemo, which means that he is finished with chemo treatments for a few weeks.  We're in the recovery part of this cycle, so the worst thing he has to deal with is Daddy drawing his blood once a week.

I just went upstairs to wake him up so I could put EMLA on his arms.  He'll let Mike draw his blood without the numbing cream if he has to, but he still prefers to use it when he can.  I figure he's had to deal with enough pain in the past 13 months that he hasn't had a choice about.  Having blood drawn without EMLA is something we do have a choice on most of the time, so why make him feel the pain?

We had a fun visit with the grandparents a couple weeks ago.  They were only here for a couple of days, but it was fun.  Keeghan talked Grandad into taking us out to his favorite restaurant - The Melting Pot - for dinner.  The kids were both thrilled to get to go there (we hadn't been to the one in DC yet).  When we first sat down at the restaurant Keeghan was fairly dancing in his seat he was so happy!  By the end of the meal, however, he (like the rest of us) was so stuffed he was barely able to move!

The next day we took Grama and Grandad with us to Medieval Times in Baltimore.  PCFC paid for tickets for 90 families of children either currently going through cancer treatment, or who have completed treatment at Walter Reed, to go to the show.  That was the first big event that PCFC has planned since I took over as its president in January and I think it was a big success.  I know my family had a great time.

I've posted a couple of pictures here on our website.  For more pictures, you can visit PCFC's site.

The kids and I have been trying to get back on track with homeschooling for a few weeks now.  Starting in April we sort of got off track.  There was the big anniversary celebration, my mom visiting for a week, Keeghan's fever at the beginning of May, and then Mike's folks here visiting . . . it all made staying to a strict schedule very difficult.  We're caught up now though.  We are going to continue school work over the summer, but not all of the subjects we normally do.  The summer is going to consist of Math, Language Arts, Reading and Foreign Language.  We'll pick up Science, Art, History, Logic and Geography again in the Fall.  I'm also going to be adding a Health course in there somewhere.  I'd like to start them on piano lessons as well . . . sounds like we're going to be very busy, eh?

I hope everyone out there is doing well.  I know there are still people looking at the site because the counter goes up every day!  Feel free to keep leaving posts in the Guestbook - we love hearing from everyone!

S.

Hero of the Week - Keeghan!
Keeghan is the Hero of the Week for Bravery Hearts!  You can go here to see it.

This will only be up temporarily so please check it out!

9 May 2007
Well my friends, here we are . . . it's been one year today since I started this website.  Can you believe it?  I know I can't!

6294 hits on the home page and 471 posts in the Guestbook later, we're still following Keeghan's journey.  Nothing could make me happier!

I haven't posted anything since Keeghan's fever last week, so let me just update very quickly on that.

After he was given Tylenol at Walter Reed on Friday (after the Rocephin), his fever never came back.  We still had to take him to the hospital on Saturday for another Rocephin treatment.  We thought that we should be able to take him to the pediatric ward for this treatment but, ummmmmm, no.  Apparently, because he isn't an inpatient, they don't get credit for the workload or something like that.

Yeah.

Don't get me started on nurses and their work load coming before patient care, ok?

So we went to the ER for the treatment.

On Sunday, when the blood cultures came back negative, we were told that he didn't need any more Rocephin.  But his port was still accessed, meaning he still had a 1" needle stuck in his chest.  Keeghan really wanted to get that out so that he could take a shower (he's allergic to adhesives, so to tape the tube down and cover it would be more painful than he wanted to deal with).

The doctor's first suggestion was that Keeghan just wait until Monday to be de-accessed since we were going to be at the clinic for a PCFC meeting anyway.  That would mean no shower though.  Bad solution.

Our only other option - per the doctor, mind you - was to either take him to the ER at Andrews AFB or at Walter Reed.

When Keeghan first started chemotherapy in San Antonio, there was one very important rule that his oncologist there told us - don't ever take him to the ER!  If he spiked a fever, call the on-call doctor who will then call the pediatric ward, and then take Keeghan directly to the ward.  The risk of being around all the sick people in the ER was too great.  Apparently Walter Reed's doctors don't feel the same way!

We took Keeghan to the ER at Walter Reed.  We knew that the same doctor and nurse we had dealt with the previous day would be there, so we figured we'd have a better chance of getting him in and out quick there.  Soon after we arrived, however, a family came in with a toddler that was very sick.  She had a croupy cough and was obviously miserable.  Mike immediately got Keeghan out into the hallway, away from the ER waiting room.  The nurse on duty was sharp though.  She came out just minutes later and took us back into a room where we were isolated from the rest of the ER.

It took about an hour of waiting, but Keeghan got that needle out and was able to go home and take a shower.  Yay for him!

We were then back at Walter Reed on Monday for the PCFC meeting.  I am thoroughly enjoying being a part of this organization, but I have to tell you, after being at Walter Reed last Wednesday, and then again on Friday, Saturday and Sunday, I really didn't want to have to go there again on Monday!  Especially since I was thoroughly annoyed with at least one staff member!  But we went, the meeting went well, so I guess it was all good.

Today we were there for Keeghan's chemo appointment and to see Dr. Cooper, the neurosurgeon.  He had a message from Dr. Weinberg.  Apparently Dr. Weinberg was here in DC for a conference and, when he saw Dr. Cooper, he told him to say hello to us.  Let me tell you - Keeghan is one annoyed little patient right now Dr. Weinberg!  You were here and Keeghan didn't get to see you???  You're in trouble!   ;)

The appointment with Dr. Cooper was to check out a funny lump on Keeghan's head.  We've been teasing him for weeks now saying that it's one of the screws coming loose.  Lo and behold, it isn't necessarily a screw coming loose . . . but it is a screw!  So now, no matter what Keeghan does, he's decided that he can blame it on his loose screw!

What was really hilarious about the whole thing was that Dr. Cooper asked him if the lump hurt.  Keeghan replied, "Only when the doctors in the clinic push on it."  To which Dr. Cooper replied, "Well then, don't let the doctors push on it anymore!"

Funny, eh?

Thank goodness we don't have to go back to Walter Reed again now until next Wednesday.  We are all seriously sick of going there!

Last thing to mention here - two counselors from Make A Wish are coming here this evening to start Keeghan's wish process.  Everyone keep your fingers crossed for him!  They've canceled on us twice now, so we've told Keeghan he needs to wish for something really fabulous!  I'll let you know how it goes!

Sorry this was so long!

S.

4 May 2007
Hello, my name is Shannon, and I spoon feed poison to my son as a bedtime treat . . . .

. . . or at least that is how I feel today.  I gave Keeghan his CCNU dose before he went to bed last night.  He came down the stairs this morning at about 7:00am and made a bee-line for the bathroom to throw up.  CCNU always makes him feel like garbage but it's never made him vomit before.  Then around 10:00am I noticed that he felt warm.  His temp was 100.5.  Fifteen minutes later it was 100.6.  Thirty minutes after that it was 101.0.  So off to the hospital we went!

Lucky for us, Mike works very close to home so he was able to go with us.

Keeghan's lab results from Wednesday were fine, but they still drew new labs today (which were still fine).  But they also started a blood culture and gave him a dose of Rocephin (an antibiotic).  We have to take him back tomorrow morning for another dose, which is given through his port.  We'll see what the results of the culture show on Sunday and that will determine if he needs to go back for yet another antibiotic dose that day.

If anyone has any spare positive energy/prayers to send his way, we'd sure appreciate it.  It's been a good week - at least as far as news about the tumor still being gone goes - but definitely a tiring one!

S.

2 May 2007
Many of you who know me well know that I get very stressed out right before Keeghan has an MRI.  Usually for about two weeks prior I am out of sorts.  I've learned to contain it somewhat and not burst into tears at the least provocation.  But I'm still tense.  Maxx is usually the one that notices it the most in me.

Keeghan had an MRI on April 29th, but we didn't find out the results until today.  My tension can now go away for another couple of months because . . .
There is no evidence of residual or recurrent tumor!!!!
That is the official word that we received today while at Walter Reed.  Once again, can I get a big WOO HOO?!
WOO HOO!!!!!!!!!!!!

So hopefully now I'll start getting more pictures and updates here on the website.  I've almost felt superstitious these past couple weeks with all the celebrating and such.  Almost like I was somehow jinxing things.

Yeah, I know . . . I'm insane.  Nothing new there.

More later.  I'm off to hug my family again and celebrate!

Shannon

27 April 2007
I know, I know - I've already posted today.  But as the day has gone on, I've thought of other things about the past week that I wanted to share.

First off, I forgot something - it was one year ago today that we found out Keeghan's tumor was malignant and not just the benign glioma that the doctors had expected (and that we had hoped for).  Which means that it was one year ago today that Keeghan gave his famous "I will beat this if I have to do it cell by cell" speech.

I sat looking at him today while he played a video game and thought "holy cow!"  Just remembering that day . . . it's hard to fight off the tears and that sick, shaky feeling.  So much fear.  The absolute inability to stop crying.  The entire world was spinning out of control and nothing we did could make it stop.

We've come a long way, baby!

So, needless to say, I am continually reliving the events of last year.  Hopefully this is the only year I will do that!  I can see it now - I'll be 60 and saying to Keeghan, "today is the 21st anniversary of the day you got your first chemo treatment . . . "  I'll seriously drive the boy crazy, won't I?

In other news, life with the new puppy is . . . interesting.  We've had her almost four weeks and she has more than doubled in size.  Seriously!  There are so many words to describe her.  Sweet.  Hyper.  Annoying.  Piranha-like (can I count that as one word?).  I think she's finally figured out the whole family dynamic we have going on here though.  She sleeps all day, with a few play breaks, and then completely loses her mind with excitement when the big, bald Alpha Dog (i.e., Mike) gets home from work.  She then proceeds to play for 3-4 hours straight, after which she passes out and sleeps until it is time to wake Alpha Dog up at 0545 to go outside.  It works for me (since I'm just the Alpha Dog's mean assistant).

The puppy created a bit of excitement last Saturday.  Mike had taken her for her shots first thing in the morning.  Then I took my mom, Mason, Jerrie and the kids on a "driving tour" of DC on the way to hit the seafood market and get all of the supplies for our seafood boil that night.  When we got home we found that Mike and the dog were gone.  I won't go into detail, but the puppy had also left a hefty pile of evidence that she wasn't feeling well.

As it turns out, she had an allergic reaction to one of her vaccines.  Mike had taken her back to the veterinarian where she was given steroids and Benadryl and had to be kept under observation for a few hours.  Keeghan was an absolute wreck!  That poor little guy cried and cried - he was so worried about his puppy!  But when we went back to pick her up she was just fine, and everyone was sure to spoil her just a little extra that night!

So, even though I have no pictures to prove it, trust me when I say the weekend was not lacking in drama!

One last little tidbit.  I was goofing off last week and submitted a short article to a website called Associated Content and they actually published it!  If you'd like to check it out and comment, you can find it here:  What Not to Say to the Parent of a Child With Cancer.

Ok, I think that is all I've got for now.  I'm sure I'll remember more later, after I fully recover from the week.

S.

27 April 2007
Honestly, how does one week go by so quickly?

I can't believe it has already been a week since I sat down here at the computer and burst into tears, remembering one year ago when Keeghan was diagnosed.  I think that morning was the last quiet moment I had until now!

The anniversary "party day" was just that - a party day!  My mother had flown in from California the night before, and our good friends Mason and Jerrie drove in from North Carolina Friday afternoon.  There were many glasses raised in salute to Keeghan throughout the evening.

Also, there was much "Ooooohhhhh'ing" and "Awwwwww'ing" over Keeghan's article in the paper that day (to see the article, click here).  Many of our neighbors stopped by the backyard (as we were all celebrating) to say hello to Keeghan and tell him how impressed they were with his story.  Keeghan was loving it!

The only real bad part of the whole week was that I didn't take pictures!  Me!  The person who takes pictures of everything!  I turned the camera over to someone else (not naming names), and I'm not joking, THIS is the only picture of Keeghan that was taken:

Yes, it really is Keeghan.  Can't you tell?






But the photographer did manage to get this great shot of Mike:

Never let the artist in the family have control of the camera!

So I know I promised pictures, and I'm sorry that I'm letting you all down!  There will be new pictures soon, just not from the party!  I hope everyone can forgive me!

S.

20 April 2007
A funny thing happened while typing this post . . . I started it off by having a good cry (nothing new there really).  But then I proceeded to type this big, long post about everything that I am thankful for, and just when I was about to finish it - my session timed out and the page closed.  I lost the whole thing!

Go figure, right?

So, now you're going to have to get the abbreviated version because I'm running out of time.  It's alright though - that last post probably would have had everyone in tears anyway.

First off . . . let me at least save what I've got so far so that I don't have to do this again!

Ok, I'm back . . .

Where was I?  Oh yes, things I'm thankful for and things I've learned . . .

Obviously, I'm thankful for the fact that it is one year later, and Keeghan is not only here with us, he is thriving.  Keeghan has taught me so much this year that I can't even begin to list it all.  But one really important one comes to mind right off - hugs heal.

I'm thankful for Maxx, who taught me that even the smallest shoulders are sometimes the strongest, and that it's okay if we adults sometimes need to lean on those small shoulders.

I'm thankful for Mike.  Everything about him.  He's taught me that together we are strong enough to handle anything.

I'm thankful for our families - grandparents, aunts, uncles, cousins - we have the absolute best!

I'm thankful for this website.  While I've never considered myself to be a "writer," I've been a journal-keeper since I was old enough to write.  Having this outlet where I can get all of those thoughts that are bouncing around in my head OUT has been a serious sanity saver!

I am also thankful for all of you that have followed along with Keeghan's story and provided support for us through your kind words.

So . . . there you have it.  My Thanksgiving-in-April list.

It's going to be a big day for Keeghan.  Besides the fact that Grandma from California is here, and that our good friends Jerrie and Mason are driving in from North Carolina to spend the weekend with us, there's other big news.  Keeghan is on the front page of our base's newspaper!  A reporter came to interview us on Tuesday and has written a story about Keeghan's journey.  If the article is online anywhere, I'll post a link to it.  But right now I need to throw some shoes on and head out to pick up a bunch of copies!

Oh, and yeah . . . there will be a TON of new pictures here soon!

Don't forget my request from a few weeks ago.  Sometime today, raise a glass of something and take a moment to think about what YOU are thankful for in your life.  And if that moment somewhere you can find a little smile for Keeghan, well, we'll be very thankful!

Love to everyone!

Shannon

14 April 2007
I said a few weeks ago that this website was missing something important - the story of how all this started.  Well, after a few hours spent in front of my computer yesterday, alternating between smiles and tears (and sometimes both), here it is.  By the time I finished typing it was eleven pages long!  And that only covers the first 15 days.  It's an emotional read, but I think it is important.

So, if you are interested - and if you have a few tissues handy - the beginning of Keeghan's story is now available on the tab to the left labeled "The Beginning."  It was so long that I decided it needed it's own page.

Love to you all.

Shannon

2 April 2007
A boy and his dog . . .

Yep, you read that correctly.  Keeghan has a dog!  As of yesterday, Keeghan is the proud owner of a 7-week-old chocolate lab named Ceili (pronounced Kay-lee).

Keeghan and Ceili on their first day together!

When Keeghan was in the hospital in Houston, after his first two surgeries, Mike and I decided that the boy needed a dog.  He had wanted one for ages, but we kept saying no because we lived in a small apartment.  So we promised him that he could get one once we had moved to DC.

One of Keeghan's doctors in Houston didn't react well when Keeghan said he was getting a dog.  In fact, this doctor's reaction was the reason we took Keeghan back to San Antonio for his radiation and chemotherapy.  It's hard to put into words how this doctor acted . . . but it was very much like, "Why get him a dog when he isn't going to be around long enough to enjoy it."  Mike and I both got that same feeling from this person, and it was at that point that we decided it was time to get Keeghan back into the military healthcare system where he would be treated like Keeghan, the boy, and not Keeghan, the research experiment.

Of course, Keeghan being the logical, wise-beyond-his-years kid that he is, had to buy books so that he could research exactly what breed would be the best fit with our family.  It came down to either a German Shepherd or a Labrador Retriever.  So far, Ceili has been an absolute joy.  Her first night went well - we all actually got some sleep!  She adores Keeghan.  Where he goes, she goes.  Hopefully I'll still be this happy with her in a week!

Another big event this past weekend was that we went to see a Washington Nationals baseball game.  The Nationals donated 40 free tickets to Parents and Children Fighting Cancer, so we got to go see a game for free.  Of course, it wasn't completely free, since Keeghan just HAD to have a foam finger, and a hat . . . you know the deal!  We had incredible seats - our group basically had a private box all to ourselves!  It was awesome!  Don't miss the pictures posted on the 2007 Pics page!

So life in the Barry house is very happy and busy these days.  Pretty much normal, just the way we like it!

S.

19 March 2007
It's amazing how time gets away from you when you're busy!  But it's good to stay busy - as long as you're taking the time to enjoy everything you're doing.

Last week was crazy.  I thought that we'd get back into the swing of school pretty easily after taking Birthday Week off.  Ha!  That didn't happen!  Keeghan had physical therapy on Monday; antibiotic treatment at Walter Reed on Wednesday; dentist appointment on Thursday; and then we went on a "field trip" to the Library of Congress on Friday.  So Tuesday was our only day to do nothing but school work all day.  This week is going to seem like a vacation since we only have one appointment all week!

Speaking of that one appointment . . . Keeghan starts chemo again on Wednesday.  That means he is starting Cycle 6 of 8.  Only three more cycles to go!  I'm already starting to freak out a little over him finishing.  Ever since his diagnosis, we've been doing something to fight this cancer, whether it was surgery, radiation, or chemo.  To all of a sudden just STOP . . . I don't know . . . I'm going to have a hard time with that.

Don't get me wrong - I can't wait for Keeghan to be finished with treatment.  He's been through so much, and handled it so well.  But the part of me that has been in full-on Warrior Mode since this all started isn't going to know what to do when it's all over.  I hope that makes sense . . .

So other than Mom being a complete basket case . . . you know, the usual . . . things here are going pretty darn good.  Keeghan is getting ready to start the process of making a wish through the Make-A-Wish Foundation.  That should be interesting.  I've already told him that going down into a shark cage is NOT an option (which he replied to with "Ok Mama, I'll wait until I'm an adult to do that").  He keeps bringing up the idea of going to Ireland.  Mike suggested he ask to be made an official Knight by the Queen of England (only Mike could come up with something like that)!  Maxx keeps whispering in his ear "I want to go to Europe."  I keep telling everyone to leave the poor boy alone and let him come up with what HE wants to do.  The one thing we do know for sure is that he doesn't want to do the typical trip to Disney World wish.  He doesn't like rides, so in his mind, why waste a wish on a place that is all about the rides.  Makes perfect sense to me!

So, stay tuned for what my funny little man wishes for!

S.

12 March 2007
Quick update - Keeghan was chomping at the bit to start his massive puzzle today.  But before he could get started, I had to go buy a poster board to put on the card table because the puzzle was too BIG for it.

I HAVE to get a picture of this later . . .

S.

11 March 2007
Oy . . .
Mike and I are now the parents of a teenager.  How did THAT happen?

Yes, Maxx is now a teenager.  Holy cow, eh?  She had a very good day.  Her birthday marks the end of Birthday Week, so it is fun and (for the kids at least) a little sad as well.  Today also marked the end of Grama and Grandad's visit.  We took them to brunch at the Club on base.  Then we hung out at the house for a couple hours before Mike took the grandparents to the airport.

After that, it was chill time!  I seriously needed to recover from Birthday Week!  The kids seemed to be happy with their haul this year.  For Keeghan it was mostly dragon stuff - as usual - but he was thrilled.  He got a dragon crystal ball lamp, a small dragon head statue from Maxx, some posters, and a 2000-piece dragon and wizard jigsaw puzzle (didn't I say something when we did the 1500-piece puzzle a few months ago about not wanting anything larger than 1000 pieces???).

Maxx's gift haul this year was mostly faerie stuff - a faerie ornament, poster, ceramic hanging tile for her collection, but then she also received a new Swarovski charm for her Mickey Mouse charm bracelet from Keeghan.

All in all, a very good week I'd say.  And I now have to remember that I have an 11- and a 13-year-old.  I really don't feel old enough for this . . .

7 March 2007
IT'S KEEGHAN'S BIRTHDAY!

He is eleven-years-old (or onety-one as he likes to joke around and say).  This is an exciting birthday for all of us.  It's been nearly eleven months since his diagnosis.  At that time, looking ahead to his next birthday was just too . . . scary I guess.  We've been operating in "One Day at a Time" mode for a while now.  So the fact that he gets to have all of the focus on him today, and it isn't because he has cancer, is such a joy for us.  As for Keeghan?  He could barely contain himself yesterday when it was just "the day before my birthday."  He's a bundle of happiness today!

One of the biggest milestones for Keeghan is coming up next month.  April 20th will be the one-year anniversary of Keeghan's diagnosis.  That may seem like a sad day to most, and certainly not one to be celebrated.  But that day marked the beginning of the process of saving Keeghan.  If the tumor hadn't been found when it was, and if he hadn't had the doctors that he did at that moment in time, he might not be sitting in the other room pigging out on eggs, bacon, and hash browns (the typical big birthday breakfast) right now.  He might not be sporting the mad mohawk and acting all cocky over it being "his" day.  The list of things he might not be doing could have been much longer than the list of things he IS doing if it hadn't been for that one day.

So . . . April 20th.  It is definitely a day we are planning to celebrate.  BIG.  In fact, we've already started the ball rolling for a big party that Friday night here at our house.  If you can make it, please do.  As of right now, my mom is planning to be here.  Keeghan wants me working on Uncle Brad to come.  Mike's been talking to Aunt Baby about it.  I will help anyone who wants to be here find a place to stay, or I'll put you in sleeping bags on my floor.  But be prepared for a big celebration because we have a lot to be thankful for around here.

For those who cannot be here to celebrate with us, Mike and I have a request.  Whether you know us personally, you know someone in the family, or you found this website completely by accident and have since been following Keeghan's story - we ask that you take a moment on April 20th and raise a glass (we don't care what you have in the glass), and think back over the past year.  Remember the events in your life, and those of your loved ones, that have touched you.  Think of it as Thanksgiving in April and take time to be thankful.  For yourself, your family, for everyone around you.  Because not only will we be thankful for Keeghan and how well he has done over the past year, we will be thinking of everyone here on this website that has supported us with their kind words and encouragement as well.

I know it sounds cheesy, but yes, we're essentially asking for one big Keeghan Group Hug on April 20th.  I hope you'll all play along!

Birthday pics to come later on today!

S.

22 February 2007

Everything seems very . . . random . . . lately.  No one specific "event" to write about here.  Just every day living.  In fact, life has started to seem extremely normal lately.  Maybe it is just our form of normal though.

. . . random story #1

I think we must seem like the oddballs of our neighborhood.  I've seen a few of my neighbors in recent weeks and had them make comments about us never being seen outside.  Most of the people that live on our block have children in the 7-and-under age group.  If there is one thing that I have learned about the early elementary and preschool ages, it is this:  they do not feel cold.  As in it could be twenty below outside but if there's snow on the ground, they're playing in it.  Maxx used to be that way when we lived in North Dakota.  Keeghan, my wise little man, has NEVER been like that.

The first time it snowed here, my kids were out playing in it. I have pictures, so there's proof.  Since then?  Ummmmm . . . no.  Now it's more of an "oh look, it's snowing again.  Can someone please hand me the television remote?"

So, as I said, life seems normal.  For us.  Keeghan had his last chemo treatment for this cycle yesterday and he's handling it all with his usual aplomb.

 . . . random story #2

Maxx was sick last Friday.  The poor baby couldn't keep anything down.  Because I didn't want Keeghan getting sick, I kept the two kids separated.  Maxx was in the guest room upstairs and Keeghan in the living room downstairs.  I spent the day running back and forth between them.  By Saturday morning Maxx felt fine, but Keeghan was a wreck!  At one point I looked at him and could tell he was on the verge of tears, but I had no idea why.  When I asked what was wrong, he said, "I hope Mackenzie feels better today because I really missed her yesterday."

That should tell you how close they are, and how big a part of Keeghan's "support system" his sister is, eh?

 . . . random story #3

Birthday Week is coming.  Shall I explain what Birthday Week is?  

Keeghan was born four days before Maxx's second birthday.  The following year we figured out that there was a bit of a problem.  Maxx could not understand (at the ripe old age of three) why Keeghan was getting birthday presents before her when she was the oldest!  To keep things from turning ugly, we created Birthday Week.

(It's actually only five days.  But Birthday Week is easier to say than Birthday Five Days, right?)

Starting on Keeghan's birthday on the 7th, the kids each get one small gift per day, ending on Maxx's birthday on the 11th.  It's strange, I know.  But it works for us.  This year, for the first time ever, grandparents will be a part of Birthday Week.  Mike's parents are flying in to spend a few days with us.  It's going to be fun as long as the weather stays decent . . . crossing fingers . . .

I guess that is enough randomosity for one day.  Be on the lookout for a new page here.  I've been thinking about the fact that I started this big, long narrative after Keeghan had his first surgeries.  I originally started it with the sole purpose of keeping friends and family posted on how things were going.  I didn't really expect it to turn into this mad international group hug.  Don't get me wrong - I LOVE that it has taken off the way it has.  I just didn't expect it.  So the one thing that is missing from the site is how this all got started.  That is why I am planning on making a new page to tell the story of how a game of tag in the schoolyard resulted in a cancer diagnosis (REALLY!).  I just have to buy more Kleenex before I can tackle reliving that first few weeks again . . .

S.

9 February 2007

HALF WAY!  That is how far Keeghan is through his consolidation chemotherapy.  Wednesday was Day One of Cycle Five (of eight total).  YAY!

Of course, the beginning of each chemo cycle is always the worst.  Last night, at bedtime, he had to take his dose of CCNU.  He only takes it once every six weeks, which is a good thing because it's rough.  So he's feeling like hammered garbage right now.  The only nice thing is that we have nothing to do today but schoolwork - and easy schoolwork at that.  It's All History, All The Time - American, World, and Art History.  Those are fun and don't require any of us to get out of our pajamas!

We had a fun evening yesterday.  One of my favorite authors is Christopher Moore.  While Keeghan was in the hospital at MD Anderson last April, I bought a copy of Moore's latest book - A Dirty Job.  I would sit in Keeghan's hospital room reading it and occasionally laugh out loud (something that happens often while reading a book by Moore).  Keeghan would then insist that I read the passage that made me laugh to him.  Those are still some funny memories for us.

Moore has a new book out now and is currently on a book tour.  Last night he was appearing at Politics and Prose in Washington, DC, so we went to see him.  He was, as expected, hilarious.  We stood in line and had Moore sign our copy of the new book also.  Keeghan was VERY excited to meet a real, live author!  It was cute.  Of course, me being the idiot that I am sometimes, I completely forgot my camera!  So I didn't get to take a picture of Keeghan with Moore.  But that's ok - we have the autograph and the memories, so that is enough.

Other than that there is nothing new here.  Keeghan continues to be a shining example of how to deal with cancer with grace, and (not) just a little attitude!  Nothing gets him down.  Maxx is still the most incredible support for her little brother.  Her strength is inspiring.  It's such a blessing to see them both thriving and enjoying life.  With both of their birthdays coming up next month, it's hard to think of any gift that is worthy of them - but I'm sure they'll be more than happy to help me come up with something!

S.

30 January 2007

First and foremost - I received an email from Dr. Weinberg today.  He received the disk with Keeghan's MRI on it.  He said that "everything continues to look great!"  WOO HOO!  That is exactly what I needed to hear.

The next big news is that I have finally posted new pictures!  You'll notice that there is a new page on the left called "2007 Pics, Vol 1."  The DC Time! page was getting a little too long, so I decided it was time for yet another new page!  This website is becoming quite the beast, isn't it?

The last bit of news I have is that, as of yesterday, I am the president of a group out of Walter Reed called Parents and Children Fighting Cancer.  At the moment, I have no idea exactly what I will be doing with this group, other than planning some seriously fantastic parties and trips for the kids in the clinic.  Also - the really cool news - I am working with Darren Enkin from Bravery Hearts Beads to get the bead program started for the clinic here.  YAY!  Of course, that means that very soon I will have about 250 Bravery Hearts necklaces (as seen on their homepage at www.braveryhearts.com) to sell.  Selling the necklaces is what keeps the beads free for the kids.  So yes . . . be prepared, because more than likely I will be offering them up for sale here!  I am all about anything that puts smiles on the faces of these kids - mine especially!

Hope everyone is having a great week!

Shannon

24 January 2007

Excellent news - the official reading of Keeghan's MRI from Saturday says "no residual tumor."  YAY!

So why do I have a massive headache and feel like I could throw up at any moment?

I received a phone call from Keeghan's oncologist yesterday telling me that he had reviewed the MRI with a radiologist and that it looked good.  I think his exact words were that it "was encouraging."  He did say that there was a part of the scan that "looked different" but that the radiologist did not think it was a recurrence of the tumor.

Then today we met with the neurosurgeon that performed Keeghan's surgery last month.  He reviewed the MRI very thoroughly, comparing it with a number of Keeghan's past MRI's (including one from before Keeghan's first surgery, showing the tumor - I HATE that MRI).  He also noticed the "difference" and, very obviously, did not feel comfortable saying that there was no residual tumor.  So he called the radiologist that had originally reviewed this most recent MRI to question him and the radiologist stood firm on his opinion.  I guess because the subdural hematoma is smaller now than it has been in any previous MRI, the radiologist thinks that the changes in how some areas of Keeghan's brain appears - specifically around where the tumor was - are from the fact that his brain has more room to expand.

Needless to say, the neurosurgeon's hesitance freaked me out a little.  Ok, a lot.  I'm holding it in, but it's really hard.  My sincerest hope is that the radiologist is the one that is right on this.  Of course, the MRI is being Fed-Ex'd to Dr. Weinberg in Houston today, so he should have it by Friday.  Hopefully sometime next week we'll hear from him.  That poor man probably gets sick of us wanting his opinion . . . that's what he gets for being such a good doctor!

So . . . good news, and me being a little paranoid.  Same stuff, different day, right?

S.


17 January 2007

I've got a lot to say today my friends, so sit back and relax!

First off - you've all heard me talk about Keeghan's Bravery Hearts beads.  What I probably haven't said is that the bead program is (at least partially) funded by people purchasing jewelry from the Bravery Hearts website.  When purchased jewerly is mailed to people, a thank you card is included from Bravery Hearts.  Below, you will see the new thank you card that they are using:

It's a little small, but I hope you can read it!  Doesn't Keeghan look handsome?  If you want a real postcard, go buy jewelry at the Bravery Hearts website!  We were so excited when they asked if they could use a picture of Keeghan with his beads.  My dad keeps saying that Keeghan is going to be the most famous one in the family and I'm starting to believe it!

In other news, today was another day of me having to (somewhat aggressively) advocate for my child . . .

We went to Walter Reed today for Keeghan to receive his monthly antibiotic treatment.  He was also due to see Endocrinology again.  The endocrinologist came up to the clinic to see Keeghan this time (remember last time, when I found out that the Endocrinology Clinic was in the Pediatric Clinic, where all the sick kids are???).  He brought with him a resident (the omnipresent tag-alongs as I call them).  This resident happened to be female.  One of the things the doctor needed to do today was examine Keeghan's "boy parts" in order to see whether or not puberty has started (FYI - it hasn't, which I guess is a good thing).

As we walked into an exam room, the resident followed us in.  Immediately I noticed Keeghan looking back and forth between the resident and myself . . . with a very frantic, panicky look in his eyes.  You have to understand one thing about Keeghan - he doesn't like anyone looking at his "stuff."  He especially doesn't want some girl looking at it, right?  And personally, I don't think he should have to let a girl look at it if there is a perfectly capable GUY doctor that can do it.

So, I politely looked at this resident and said, "I'm sorry, but he's not going to be able to do this with you in here so can you please step outside until this part of the exam is over."

HOLY COW!  I wish I had a picture of the look this woman gave me!  It's a real good thing I'm not easily intimidated.  But, she left the room.  Slowly.  And with attitude.  I didn't really care though.

I realize that many parents would probably tell their child that they had to let the female doctor stay in the room.  But I look at it this way - Keeghan has had to suffer enough indignities in the past nine months that were unavoidable.  This one WAS avoidable.  If I ruined a training opportunity for the resient, so be it.

So, now on to the really funny part of the day.

On the way home from the hospital, while driving through downtown DC, we had to stop at a red light where there was a (presumably) homeless man on the corner holding up a cardboard sign.  The immediate thought that crosses your mind when you see this picture is that the sign probably says something like, "Homeless, need help," or something to that affect, right?  No.  Not this sign.  This one said:

                                        Why lie - I need a beer.

I read that and BURST out laughing!  Keeghan did the same thing.  Maxx was in the backseat and thought we had lost our minds.  But what was more funny than the sign was that the guy holding it saw me laughing and laughed also, and then gave me a thumbs-up sign!  Seriously, if I had had any cash on me, I probably would have given it to him just for being honest!

I love this city!

S.

10 January 2007

Ahhhhhhh . . . life is back to being good!  This is our first week "back to school" and I think being back in the routine of life-in-general has been just what I needed!  To those of you that sent me a "virtual kick in the rear" about my last post - thanks!  It was definitely needed!

Keeghan had his last chemo treatment today for this cycle.  In three weeks, he will be finished with the fourth of eight cycles.  We're HALFWAY to the finish!  Yay!  His spirits today were so high - he was just a joy to watch.  Of course, he's always a joy for me to watch, but his smile and his laugh were infectious today.  I love seeing him have that attitude that nothing in the world is tougher than he is!

It's amazing how much improvement I've seen in him since the surgery last month.  He has much more stamina when it comes to getting schoolwork done.  He's back to being eager to do schoolwork - something he'd lacked for a few weeks before the surgery - and he generally seems to be happier.  I can't imagine how hard it must be to be a ten-year-old little boy and have all of these things going on inside of you, some of which might make you feel lousy without you even knowing that they're there (i.e., the subdural hematoma).  Yet he deals with it all like it's normal.  This is his life, this is the hand he's been dealt (I hate that saying by the way), and he's playing it.  He's definitely wise beyond his years due to all of this.

And speaking of Keeghan being wise beyond his years . . . I've noticed something that breaks my heart a little about him.  He no longer relates well to boys his own age.  I took him to a meeting last night of our homeschool support group.  I tried to walk him around to areas where there were other boys his age, but he didn't seem to fit in anywhere.  While the other boys were talking sports, or rough housing, or playing games, Keeghan just sort of hung with me.  But whenever I talked to other adults, he was right there in the conversation!  We've always joked that he is a 30-year-old trapped in a 10-year-old's body, but now it seems more true than ever!

It is just one more thing that must be hard to deal with for a ten-year-old little boy.  Thankfully - at least for now - he seems happy to be around adults more than other kids.  Since that is pretty much the sum of his days right now, it's a good thing.  But what happens when all of this is over and he tries to assimilate with other kids his age again and can't?

::sigh::

Shannon

5 January 2007

In the past few months, for whatever reason, I've stopped writing about my feelings so much on this website.  I guess, as more and more people have started visiting this site to follow along with Keeghan's story, I haven't wanted to bring everyone down.  But it doesn't feel honest to make everything feel like sunshine and roses.

Don't get me wrong though - Keeghan is doing fabulous.  Since this last surgery, he has been back to his old cheery, sarcastic, happy self.  I'm the one that has been out of sorts for the past few weeks.

I am just so glad to be done with all of the emotions that seemed to go hand-in-hand with the holidays for me this year.

Every single thing was a What if . . . thing for me.

What if this is the last time he is here to decorate the Christmas tree with me . . .

What if this is his last Christmas morning . . .

. . . last New Years

. . . last . . . last . . . last . . .

Honestly, I spent more time trying not to cry in the past month than I did anything else. Maybe it is because of him having to have surgery again last month so unexpectedly . . . I don't know. All I know is I have felt like I've had this gray cloud of doom hanging over me for weeks.

But I seem to be doing better now.  I think the holidays were just really messing with my mind.

So hopefully this will be my last "down" post for a bit.

S.

2 January 2007

Living in Washington, DC can be very surreal at times.

Because the commissary on the base where we live is very small, we decided to go to the commissary at Andrews AFB today since it is only a few miles away.  Of course, we completely forgot that the funeral for President Ford was going on today.  So, as we were heading off base to come home, we got stopped and were able to watch the funeral procession go by.  It was strange, and yet interesting, to sit in our own car and watch a president's casket go by!

Yep . . . DC is a different place to live!

S.

30 December 2006

Trans-Siberian Orchestra.  Go see them.  Buy their CD's.  Seriously.

Yes, that was a blatant plug.  Sorry.  But we just got back from seeing them in concert this afternoon and there just aren't enough words to describe how good they are.  Unfortunately for all of you, today is the last day of their tour.  So go see them next year!  I know we will (just like we saw them in San Antonio LAST year).

Our seats were on the floor, five rows back from the stage.  Center stage.  It was awesome.  I wish I had pictures to post, but cameras weren't allowed.  But just imagine the biggest smiles you've ever seen on the kids' faces (whether it be in pictures or in person) . . . then multiply that by a gajillion.  Then you might come close to how excited and happy they were today.

Did I mention that it was awesome?

Yep.  It was a good day.

S.

28 December 2006

Many apologies for the delay in updating here!  Our cable modem decided to fritz out two days ago, and we just got the cable company out here to fix it late yesterday afternoon!  Of all the times to have cable problems - the week between Christmas and New Years is the worst!

I hope that everyone out there had a wonderful holiday.  Ours was perfect - the four of us together, everyone feeling great, and lots of fun gifts!  For the first time ever, the kids didn't have any specific gift requests, so everything was a surprise!  Maybe that is why they woke us up about two hours earlier than normal - because they had no idea at all what they were getting!

After all of the Christmas morning hoopla, we took cookies and treats out to Walter Reed for the staff and patients on the Pediatric Ward.  The kids decided last Wednesday when we were driving out there for Keeghan's appointment that it must really stink to have to be in the hospital (or to have to work in the hospital) on Christmas Day.  So on Christmas Eve, when they were baking cookies for Santa, they made extras for the hospital.  They also put together little treat bags for the patients (and their parents).  It was fun getting to take something nice to the hospital that day, although the staff all looked at us like we were insane!

For the past couple of days we have been staying close to home.  Keeghan started his fourth chemo cycle yesterday, so we had to go to Walter Reed for that.  But now we're just hanging out.  I have set a goal for myself to finish the Mickey Mouse photomosaic puzzle we've been working on for three months now by New Years.  Oy!  Never, never, never, NEVER again are we buying a photomosaic puzzle!  But the kids and I want to start a 600-piece map of the world puzzle that we bought, so I need to get this other one out of the way.  Wish me luck!

We are going to a concert on Saturday afternoon - for the second year in a row, we are going to see the Trans-Siberian Orchestra!  Both kids are beyond excited about it!  We saw them last year in San Antonio and were blown away by what a fantastic show they put on.  So definitely be on the lookout for a post either Saturday evening or Sunday giving all the details!

S.

Is this a lot of beads or WHAT?!

20 December 2006

As you can see from the picture, Keeghan's bead strand has taken on a life of its own!  At last count, he had 269 beads, and I now need to add another 30 due to his surgery and hospital stay last week!  It's amazing!  We are such big fans of the Bravery Hearts Bead program.  Just how proud he is of all those beads - they really tell the story of his journey with cancer.  And that smile!  Just seeing makes it worth sitting down and adding those 30-odd beads that I need to add (once they come in the mail tomorrow)!

It's hard to tell in this picture, but Keeghan now has a mohawk haircut again!  I've put new pictures up on the DC Time! page (WAY at the bottom) showing what his hair looked like after this surgery, and then what it looks like now.  You'll have to go check it out!

Other than the cool beads and haircut, nothing new going on.  We had a follow-up appointment with neurosurgery and hem/onc today at Walter Reed.  His incisions are healing nicely.  He isn't due to start chemo again until a week from today.  So it was a breeze of a day.  I told the doctor that Keeghan has been positively PERKY since he got home from the hospital.  I really think that he is feeling light years better than before the surgery, when he had all that pressure from the hematoma.  So even though the surgery was stressful to go through, we are so glad that it was done.

More to come later - 5 DAYS TILL CHRISTMAS!

S.

17 December 2006

Ok, now that we have been home for a couple of days, it is time for some of the highs and lows from our hospital stay!

The first high that comes to mind is the staff on the Pediatrics Ward and the Pediatric ICU.  With only a couple of small exceptions, we were treated extremely well by the nursing staff.  Keeghan had to have neuro checks done every two hours, which seems like a real pain, but it's not for him.  He's actually learned to sleep through them.  So when the nurses come in at night, they can shine a light in his eyes and it doesn't bother him.  They make him grin, wag his tongue from side to side, raise his eyebrows, squeeze their fingers, and then push and pull with his feet.  It takes (at most) a minute to get through it all.  On the last day in the hospital, we had a nurse named Andrea that we hadn't met before.  It was first thing in the morning and Keeghan was still sleeping when she came in.  She went through her whole neuro check and then went to tuck Keeghan back under the covers.  As she grabbed his hands, he automatically grabbed hold of her fingers and started squeezing!  She said, "Awwwwwww, he's so cute!  He really does do this in his sleep!"  I guess she had read in his chart that he didn't need to be awakened for neuro checks, but had to see it to believe it!

Another thing that always makes me laugh is how polite he is in his sleep!  When the techs come in to take his vitals while he's sleeping, they'll sometimes have to ask him to open his mouth for them to take his temperature.  So when they say, "Keeghan, can I take your temp?" he always replies with, "Yes, please" in a very sleepy little voice!  Then he thanks them as they leave the room.  He never remembers doing this though, so I know he's completely asleep through it all!  So cute!

Keeghan is also very picky when it comes to medical terminology.  Keeghan's nurse in the PICU when he was brought out of surgery was a Lieutenant named Omar.  Apparently (as Omar told me later on), he referred to Keeghan's port as a Broviac.  Even groggy from anesthesia, Keeghan could not let this slide.  So he told Omar, "It's not a Broviac.  It's a Port-a-Cath."  Keeghan also discussed his Art line, Ventriculostomy (from his original surgeries), and other medical jargon with Omar.  Needless to say, Omar was very impressed and even told the night nurse, Jeremy, about how smart Keeghan was!

There was another experience that we all had with Omar that wasn't such a "high."  Looking back on it now though, it's pretty darn hilarious!  Each nurse in the PICU was assigned two patients.  Essentially, they were assigned one room that had two beds, with a curtain down the middle separating them.  When Keeghan first came out of surgery, there was an elderly lady in the bed beside him.  She had had surgery that morning as well.  Because of having surgery, the staff had taken her hearing aids out.  Her husband was with her and kept yelling - very loudly - to his wife.  That was a little annoying, but understandable.

The hilarious part of the story is the husband.  He had one of those walkers that can be turned around and used as a chair - kind of like this one.  He was sitting in it with his back to the curtain, so essentially his back was just on the other side of the curtain from where Keeghan was.  Omar was working to get Keeghan settled in after surgery, and Mike and I were talking to Keeghan and helping Omar as much as we could.  Suddenly we noticed a really foul smell.  I'm talking make-your-eyes-water smell.  We thought it must have come from the old man next door, but we weren't sure.  Mike started doing his mouth-breathing thing that he used to do when he changed the kids' dirty diapers, and that always makes me laugh.  Then we noticed what the old man was doing - every time he needed to pass gas, he would start rolling his little chair backward until his behind was in OUR space.  Then he'd just let it go.  Mike, Omar and I were laughing, crying, and just shaking our heads over it when Keeghan asked what was going on.  When we told him, he said (in his still groggy and raspy voice from surgery), "That is just WRONG."  We all cracked up over that.

There were a couple of other "lows" (that don't seem quite as hilarious, looking back, as the one above), such as the doctors seeming to bicker back and forth in the first couple of days over whether to do surgery or not.  Also, when Keeghan was all set to be moved from the PICU back up to the Pediatric Ward on Wednesday night, the charge nurse on the ward refused to accept him, stating they were short-staffed.  Keeghan so wanted to get out of the ICU because it's impossible to get a good night's sleep there, so he was very upset.  And when Keeghan gets upset, I do as well.  I made a few phone calls, stomped my feet a few times, and basically made my anger over the whole thing known to all, and still was told he couldn't be moved.  That was at 9:00pm Wednesday evening.  Amazingly though, at 11:00pm I was awakened by Keeghan's ICU nurse, Jeremy, and told that we would be moving up to the ward within the hour.  I don't know what changed in two hours, but I was happy for it.

All things considered, I can honestly say that it was a good experience at Walter Reed.  Of course, we'd all rather Keeghan not have had to be there at all!  But at least we can say that it wasn't absolutely horrible, and that's a good thing.

S.

14 December 2006

Once again it has been a while since my last post.  While I'd love to use my old "no news is good news" line, it doesn't quite ring as true this time.  All IS good now . . . but it's been a rough past few days.  So be prepared for a long post!

I wrote before about how Keeghan ran a fever a couple weeks ago.  After the fever went away, he complained occasionally of his left hand either going numb or of it tingling.  We talked to the doctor about it and thought it might be a side effect from the radiation treatments as we had been told in San Antonio that it could take 3-4 months after treatment ended before any physical symptoms presented themselves.  I also talked to the doctor last Thursday about the fact that Keeghan's tremor in his left hand seemed to be significantly worse, and his mood in the past week or so was very sad.  Needless to say, he was showing signs of just not being "himself."

Last Friday night we were all in the living room watching TV.  Keeghan was sitting next to me and was acting completely normal.  Then suddenly he said, "Mama, my voice feels funny."  When I looked at him, I realized that when he spoke, the left side of his mouth wasn't moving at all.  He could flare both nostrils, raise both eyebrows, blink both eyes, etc.  It was only his mouth that seemed to be partially paralyzed.  It resolved itself in about 30 minutes, but it freaked us out (go figure, right?).  We called the doctor who (of course) told us to bring Keeghan to the ER.

We went to the ER at Walter Reed, where they got a CT scan done within an hour of our arrival.  Around 4:30 Saturday morning Keeghan was admitted to the Pediatric Ward.  The CT showed that Keeghan had a subacute subdural hematoma.  He's had a fluid-filled space between his brain and skull since his surgeries in April due to the brain filling in the tumor cavity, thus leaving a space at the front of his brain.  That space has remained stable until now.  But the CT showed that it had increased in size enough to be causing pressure on Keeghan's brain.  Throughout the weekend it seemed like there was all kinds of debate between the neurosurgeons and the neurologists on whether he had been having seizures (causing the facial paralysis, tremor, hand-tingling) or if it was just from the pressure.  Finally on Monday, we saw a new neurosurgeon, Dr. Cooper.

I have to add a little something here, because this is a pretty bizarre coincidence.  When we were at MD Anderson with Keeghan back in April for his original surgeries, we actually met Dr. Cooper.  Of course, Mike remembers meeting him.  Me?  Not so much.  Meeting random other doctors didn't really stick in my mind much at that time.  I remember the doctors that were taking care of Keeghan, and that was it.  And of course, the most important doctor taking care of Keeghan was his neurosurgeon, Dr. Weinberg.

Anyway, when I found out that Dr. Cooper had done a fellowship at MD Anderson, I called Dr. Weinberg to see if they knew each other (ok, I admit it -  I actually called Dr. Weinberg because I wanted his opinion on what was going on with Keeghan).  As it turns out, they DO know each other and we were able to get Dr. Cooper to email some of the scans of Keeghan's hematoma to Dr. Weinberg so that they could discuss the best possible treatment.  I can't tell you how much better we felt just knowing that Dr. Weinberg was "in the loop" on this whole thing.

It was decided Monday evening that the best treatment was to operate and drain some of the fluid to relieve the pressure.  Keeghan had surgery on Tuesday morning, where Dr. Cooper drilled two burr holes on the right side of Keeghan's head, just forward from his original surgery scar.  The surgery went well and was extremely fast.  Keeghan was in the Pediatric ICU after surgery due to having a JP tube for drainage.  The tube was removed yesterday afternoon and he was moved from the ICU back to the Pediatric Ward last night.  Since he was doing so well today, he was discharged to come home.

So, we are back home . . . and seriously exhausted.  Mike and Mackenzie having been driving back and forth from home to Walter Reed every day.  I have been living at the hospital with Keeghan (surprise, surprise).  It was a long week, and Keeghan is so tired.  But he is also SO happy to be home!  He is upstairs taking a much-needed nap now (in the new bed that was delivered last Thursday, and that he only got to sleep in for one night before ending up in the hospital!).  Hopefully this will be the last of the drama for a while!  I'll get pictures of Keeghan's new scars up soon - we're now joking with him that the combination of scars on his head look like the Big Dipper!

Hope everyone is doing well.

Shannon

2 December 2006

First, the most important news.  It has been more than 48 hours since the blood culture was done in the ER, and nothing has grown!  So, no more antibiotics.  Keeghan has not run a fever at all today and has been feeling great.

Second, check the DC Time! page for a ton of new pictures.  Keeghan got on his skateboard last weekend for the first time since the day of his diagnosis back in April.  We were thrilled!  I'm going to try to get some of the movies I took up on the video page too (there's a special one just for Dr. Weinberg).

Today we went to a Christmas party at Andrews AFB that was put on by a group called Parents and Children Fighting Cancer (PCFC).  We thought it seemed odd that the party was scheduled to last four hours, but then we got there and saw everything that they had going on.  Wow!  The party was in a big hangar out by the flightline.  There was a fire truck, a helicopter, a C-20 (better known as Air Force Two) and a C-21 airplane, a SWAT team, as well as dancers and a puppet show.  Oh, and Santa and Mrs. Claus came in on a jet to bring gifts to all of the kids!  It was amazing!  Needless to say, I took a LOT of pictures.

So go check out the pics, and let us know what you think!

S.

30 November 2006 - I think

Quick update.  Keeghan spiked a fever of 101.1 at 11:00pm last night.  We called his doctor and then took him to the Andrews AFB emergency room.  We were there from 11:30pm to 4:30am.  He had a chest x-ray, labs, and was given an antibiotic treatment (Rocephin).

We all got to bed around 5:00 this morning, and then were up again at 11:30 to take Keeghan to Walter Reed for a follow-up.  He has still been running a fever, but low-grade.  He received another dose of Rocephin.  Tomorrow we have to take him back for yet another dose.

The results from the blood culture taken at Andrews should be available by Saturday morning.  We'll then find out if Keeghan needs a prescription for antibiotics, can be finished with antibiotics, or if something bad grows on the culture, if he needs to be admitted.

More updates tomorrow.

S.

29 November - again

The fever of this morning has gone away!  Whew!  The highest it ever actually got to was the 100.1 at 6:00am.  It hovered around 99.3 for the next few hours but by three o'clock he was fine.  It's 4:30pm now and his temp is 98.3.

It was not a good feeling at all thinking of him possibly being admitted, let me tell you!

In other good news, his labs today were great.  His white blood cell count was 3.8, hemoglobin was 9.0, platelets were 154, and his ANC was 2.7.  For his first "down week" - meaning his first week off of chemo for this cycle - those were better numbers than we expected.

Exhausted.  Me.  Now.  But happy.

S.

29 November 2006

Calling all hands to keep your fingers crossed.  Keeghan has a slight fever, but I'm hoping it is nothing.  Mike had to draw his blood early this morning - at 6:00am - so we had to wake Keeghan up to do it.  After Mike was finished and got out the door, I went back up to Keeghan's room to check on him and he seemed warm.  I took his temperature and it was 100.1.  Needless to say, rather than going back to bed like I had planned to do, instead I jumped in the shower.  When I got out, I took his temp again.  This time it was 99.1.  I'm really hoping that he just had himself worked up and now that it's over, he'll relax, go back to sleep, and be fine.

Cross your fingers.

S.

Thanksgiving - continued

As I said in my post this morning, we have a lot to be thankful for this year.  It has always been a tradition for us to go around the table and say what we are most thankful for on Thanksgiving Day.  I jokingly told Mike this afternoon that I didn't think I wanted to do it at the table this year because I knew I couldn't get through it without crying.  He said, "Ok, we won't do it at the table."  But then I started laughing and said, "You watch though, Keeghan will be the one to bring it up and make sure we do it!"

I was right.  Not even halfway through dinner he said, "Ok, everyone has to say what they're thankful for."  Mike and I looked at each other and laughed!  So Keeghan started.  He said that he's thankful he is one day closer to being finished with chemo.  Then Max said that she was thankful for the meal, and also that Keeghan is one day closer to being finished with chemo.  Mike was supposed to go next, and just thinking about it almost being my turn got me choked up.  So I was just looking down at my plate, trying to hold it in.  Then, when Mike didn't start talking right away, I looked up at him and he was crying!  We both ended up being a big mess of tears.

When we started thinking about the two amazing kids we have, the amazing family we have, and then all of the other amazing people that have touched our lives - and saved our son's life - this year, it was just too much.  So many emotions that are always just under the surface just spilled out.

It was a good dinner.  But my eyes hurt now!

S.

23 November 2006 - HAPPY THANKSGIVING!

To all of our non-U.S. friends out there, it is Thanksgiving Day here in the United States.  It is almost 12:00 noon and the turkey is in the oven, the stuffing and sweet potatoes are made and in the refrigerator just waiting to be baked.  Keeghan is looking forward to making the "exploding cranberry sauce" - which is nothing more than whole cranberry sauce, but he's excited to hear them pop while they cook, hence the name.  It's going to be a simple family day for a family that has SO much to be thankful for this year.

I hope that everyone else is enjoying the day, whether it be a holiday for you or just another Thursday.  Know that we here in the Barry house are thankful for all of you out there and all of the support you have provided us in the past few months.  This website and all of the wonderful people that have visited it has done more to boost the four of us than we will ever be able to tell you.

For that, we give big thanks!

Shannon

                                             2006 SCHOOL PICTURES!

Because I love their shiny, smiling faces, I am putting the kids' school pictures at the top of this page so everyone has to look at them!  But, because I am lazy and don't want to spend an hour trying to figure Mike's scanner out, I took a picture of the pictures (huh?) with my digital camera!





14 November

Besides the school pictures shown above, I have actually (finally!) uploaded more pics on the "DC Time!" page - enjoy!

S.

10 November 2006

We really hate CCNU days.  Keeghan only takes the CCNU chemo med once per every six-week chemo cycle, but let me tell you, it's a doozy.

Because he did so well last cycle (as in he didn't need any blood or platelet transfusions), they raised the dose on the CCNU back up to 50mg.  So he took five 10mg pills last night, which by itself made him feel a little gross.  But then the CCNU kicked in and really made him feel bad.  When he got up this morning, we thought he was feeling better, but then after he had something to eat, he ended up vomiting it all up.  It was his first time earning a jingle bell in over three months.

For more on "jingle bells" see my entry from 22 May 2006 waaaaay down below.

So we've spent the day at home with Keeghan laying on the couch for most of the day.  He's definitely feeling better now though.  The CCNU usually makes him feel bad for about 24 hours.  Luckily, with the Veterans Day holiday, Mike was off work and we didn't have any school work planned, so it was a perfect day to just be lazy.

Tonight we (especially Keeghan) can be thankful that we won't have another CCNU day for six weeks!

S.

8 November 2006 - continued

When he cries, I cry.

There was one part of today's visit to Walter Reed that I forgot to write about.  I normally do pretty well dealing with Keeghan's anxiety and crying before he gets his port accessed.  I make him breathe with me so that he'll relax (the boy will someday be a fabulous Lamaze instructor).  But when he really gets upset about something, when he really cries, I can't help it - I cry too.

After all of the poking and prodding, when the nurse finally had the needle in Keeghan's port, he just broke down and sobbed.

"I hate having cancer!"

Instantly I was in tears too.  "I hate you having cancer too baby."

Then, Keeghan being the incredible little guy that he is, started crying more and said, "I'm sorry I made you cry too!"  Then he looked at the two nurses in the room and said, "We have a connection - when I cry she cries, and when she cries, I cry."

It was so sweet!  The two nurses even got choked up!  It was quite the moment, let me tell you.


8 November 2006

Day one of chemo for Cycle 3 is over - thank goodness!  It definitely could have gone better.

I'm not sure why, but the nurses here have never had as easy a time accessing Keeghan's port as the nurses in San Antonio did.  It's frustrating.  They've never missed, but they sometimes spend a lot of time feeling around trying to find it, and it hurts Keeghan.  The hardest thing for me is that my instinct is to tell them to stop because they're hurting him, but they have to access him . . .

. . . I'm sorry - for those of you that have no idea what I'm talking about - Keeghan has a Port-a-Cath that the nurses have to "access," meaning that they have to stick a one-inch long needle into it, in order to administer Keeghan's chemotherapy meds and to draw blood.  I've explained that before, but it was probably months ago so I figured I'd explain it again . . .

. . . so I want to stop them when they are hurting Keeghan, but I have to let them feel around because I don't want them to miss.  It's the most horrible feeling to have to sit there and let them hurt your baby.

After getting him accessed, the nurse drew one tube of blood, and then when she tried to draw a second tube, nothing would come out.  So then it was a few minutes of repositioning him, flushing the port with saline, etc.  Essentially it was the nurse jumping through hoops and pulling out all of her fancy nurse tricks to get things working right.  In the meantime, Keeghan is stressing out because he is afraid he'll have to get stuck again.

THEN . . . to add insult to injury, both kids had to get flu shots today.  So even though he didn't have to get his port accessed again, he DID have to get stuck again!  The poor little guy.  It was just a rough day.  But the kids were both incredibly cute while getting their shots.  Keeghan went first, and Mackenzie held his hand (which I was trying to do but she wouldn't let me, so I ended up sort of standing with my hand on his knee).  Then, when it was Max's turn to get her shot, even though Keeghan was still crying, he insisted on holding her hand and "comforting" her like she had for him.  TOO cute!

Needless to say, no one was in the mood to do schoolwork when we finally got home at almost 3:00pm.  Instead the kids chilled out in the living room reading their books.  So today will just go down as an excellent reading day for school, but that's it!

S.

7 November 2006

Once again I have taken forever to update the website - my apologies!  Keeghan is doing fabulous, so rest assured the lack of an update is completely due to my inability to multi-task!  We've been so busy with school, Halloween, grandparents visiting, and life in general that I spaced out and forgot to update.

I am going to try to get the kids' Halloween pictures up on the website today.  Max was a Sorceress and Keeghan was a Wizard!  The best part was that Grama was here to share the fun with us!

I have to share the following with everyone, because I think it's cool.  Trying to keep homeschooling fun is a challenge, but I try.  Yesterday I started a new thing with Keeghan where we are doing Math Poetry.  Below is his first math poem that he wrote all by himself:

                                                  100 Dragonflies
                                               Fast, Skinny, Active
                                50 Adults, 40 Babies, 10 Broken Winged
                                               Friendly little bugs
                                             Fire breathing insects

This type of math poem is written from a formula where the first line is the objects, the second is three describing words, the third is something about the objects that has numbers, the fourth is how you feel about the objects, and then the last line renames the objects in the first line.  I just thought it sounded like fun to do, and luckily so did Keeghan!

Ok, the kids are in the other room taking math tests, so I need to get back in there in case they need me.  Much love goes out to everyone that has signed the Guestbook recently - we are at almost 400 posts!  A-M-A-Z-I-N-G!!

Shannon

26 October 2006

As some of you may have noticed, the Guestbook has (literally) exploded with posts in the past few hours.  It's just amazing!

I belong to a couple of fabulous communities online, where I've met so many incredible people.  One such community is BookCrossing.com.  I used to spend quite a bit of time trading books with people there, but I haven't been on the site since Keeghan's diagnosis.

But today I posted there for the first time in ages.  Many people were posting holiday wishes on the message board, so I posted my wish - that Keeghan hear from at least one person from every state in the United States, as well as maybe a few new countries.

I've said it before, but I have to say it again . . . HOLY COW!

To all of my book-loving "friends" from BookCrossing, thank you!  You're all amazing!

This weekend I'm buying stick pins for the big map in the classroom upstairs - we're going to start marking all of the places where our Guestbook friends and family are from!  I can't wait!

Love to all - Shannon

24 October 2006

NO RESIDUAL TUMOR!!!

That was the word from Walter Reed after Keeghan's MRI today.  Of course, we are having the doctor FedEx a copy of the MRI to Dr. Weinberg at MD Anderson because Mike and I want to hear it from "the man."  But Dr. Harper, Keeghan's oncologist here, was very encouraged by the results.

Additionally, Keeghan's numbers (i.e., blood cell counts) were outstanding, which is excellent news since Grama and Grandad Barry are flying in on Friday.  No limitations on where we can go - woo hoo!

Again, thank you to everyone out there praying for Keeghan!  This website has become a worldwide support system for one little boy and I can't possibly express my gratitude to you all!

S.

22 October 2006

Pictures added!  FINALLY!  Check out the "DC Time!" page!

21 October 2006

Holy cow!  Has it really been 10 ten days since I last updated?  Wow!

Nothing has been happening here to keep me from posting - just life in general.  Maybe it is because "life in general" has been so nice lately that it hasn't occurred to me to update the website.  Not that I don't want to keep all of you informed . . . it's just that, for the first time in months, cancer has not been the central focus of everything that we do.

I think we've finally found our groove with the homeschooling thing.  It took us a while.  I was appalled to find out (about two weeks into starting school) that both kids' reading comprehension skills were not what I expected, and also that neither one of them had much of a grasp on what "parts of speech" were.  Seriously!  How could the children of two people that know every Schoolhouse Rocks song by heart NOT know what an adjective was?  So we took a break from Science and History and focused on reading comprehension skills for a few weeks.  It seems to have paid off.  We are now back to covering the following subjects every week:  Reading Comprehension, Language Arts, Math, Science, Social Studies, History and Visual Arts.  And just to brag about my babies a little - they each are maintaining a higher-than-90% average in five of their subjects, and higher than 85% in the other two!

In History, Max is studying "America as a World Power" and leading into World War I.  Keeghan is a few years behind . . . he's studying Christopher Columbus and the discovery of the Americas.

In Science this week they studied Geology and Uniformitarianism vs. Catastrophism.  You should have seen Mike's face when Keeghan started spewing out all these big words at the dinner table and then explaining what they were!

For Visual Arts we are beginning to learn about the Renaissance.  In fact, we are heading downtown to the National Gallery of Art either today or tomorrow to look at works of art from that period.  The kids (especially my little budding artist Max) are SO excited!

I'm sorry . . . I realize all of that was probably very boring to read . . . I'm just enjoying teaching my kids so much, I can't help but talk about it!

In other educational news, I signed up for an online workshop called Oceans for Life.  Keeghan is now "auditing" the course with me - he is reading the keynotes and watching power point presentations on Coral Reefs and just learning so much about his favorite subject - Marine Biology and Oceanography!  It's been a blast!

As for Keeghan's treatment, he is doing fabulous.  He is now on the three-week break part of this second cycle.  So he hasn't had a chemo treatment in almost two weeks, and he has two weeks until he starts it up again.  This is the time in the last cycle when he ended up needing so many transfusions, but we're hopeful that the lowered CCNU dose will keep that from happening this time.

Keeghan is scheduled for his first MRI since we moved here on Tuesday.  As is the norm with me, I'm terrified.  I have nightmares about it constantly.  Three months ago, when he had his MRI's at MD Anderson on the way here, the running mantra in my head was "please don't let the little bit of tumor left behind have grown . . . please don't let it have grown . . ."  Then we found out that there wasn't any tumor left!

Now my mantra is "please don't let it come back . . . please, please, please don't let it have come back . . ."  It's crazy how scared I get over these things.

So, once again, I beg every one of you out there to pray (or do whatever it is that you do) for my baby.  Because I truly believe that you are all helping with all of your positive energy sent his way.

Ok, enough on that . . . it always makes me cry to type that stuff and I don't want Keeghan to see me crying.  I hope everyone is doing well and, again, I apologize for taking so long to post!

S.


11 October 2006
I still haven't gotten the pictures of Keeghan with all of his cool stuff from Angels and Airwaves up on the website - sorry!  My computer is a bit antiquated and won't run the software for my digital camera, so we have the software on Mike's laptop.  Not a big deal - save the pictures to disk on the laptop and then upload them here.  Except that Mike keeps going TDY (temporary duty) out of state and taking his laptop with him!  Argh!

Other than the fact that Daddy is gone again, this time to Biloxi, Mississippi, things are going well here.  Keeghan had his last chemo treatment for this cycle yesterday.  Hopefully, with the smaller CCNU dose this cycle, he's not going to bottom out in the coming weeks and need all of the transfusions that he needed last time (crossing fingers!).  Mike will be home on the 19th and hopefully not have to go anywhere else for a while.  Keeghan is scheduled for an MRI soon after Mike gets home, and we definitely want Mike here for that.

For anyone that read the post last week about Keeghan's newfound love of jigsaw puzzles - we are now about half way through the Mickey Mouse photo mosaic puzzle.  It hasn't been near as difficult as I thought it would be (thank goodness).  The next puzzle has already been chosen, althought we haven't bought it yet.  Mike wants the next one to be a panoramic cityscape of Washington, DC.  Hopefully the little guy will give me a break before having to start that one!

Ok, I need to get today's schoolwork ready for the day.  I hope everyone is doing well.  I know I haven't said it lately, but hearing from all of our family and friends (the friends we actually know, and the wonderful ones that we've "found" through this website and Keeghan's journey) makes all of our days brighter.  We are forever grateful!

Shannon

4 October 2006

An interesting thing happened this week . . . Keeghan received a package in the mail with some autographed items from the band Angels and Airwaves.  The lead singer of the band used to be the singer for blink-182.  Anyway, my old boss in Illinois, Dave Kennedy, is related to the guitarist in the group (also named David Kennedy).  Dave had emailed me a few weeks ago asking if Keeghan listened to Angels and Airwaves (which, at the time, we had never heard of) and then said that he was going to try to get them to send an autographed CD to Keeghan.

We didn't think anything of it after that.  Then last night, while Mike and I were making dinner, the doorbell rang.  It was UPS with a box for Keeghan.  It was postmarked from San Diego, so we thought maybe it was from Mike's sister Donna.  But when we opened it, there was a letter right on top from Ginger Kennedy, the guitarist David's mom!  It was very sweet.  She explained that the shirt inside the box was one created by the crew for the band's Chicago show, and was signed by the band members.  There are also two sets of drumsticks - one set intact, the other broken!  Keeghan thought that was so cool!

I'll have to get some pictures taken of Keeghan with his cool stuff and post them here.  It was very surreal to get a package like that in the mail.  Keeghan was thrilled!  Even Max thought it was pretty awesome that they sent stuff to her brother.

What a cool day!

S.

3 October 2006

Good news - I have nothing (and no one) to complain about this week!  Sorry everyone had to read my rant last week.  But hey . . . rants happen.

Keeghan's chemo appointment went very well yesterday.  His numbers are OUTSTANDING.  He's eating like a small horse, and is generally keeping me on my toes.  It's great!

He has recently discovered that he really likes doing jigsaw puzzles.  BIG ones.  A few weeks ago we found this incredible puzzle store at the mall in Pentagon City, so we bought a 1,000 piece puzzle that had lizards all over it.  It took us about 2.5 weeks to complete it.  We then glued it and put it on the wall upstairs just outside the classroom.

Of course, we then had to go BACK to the puzzle store.  Mike was getting ready to leave for two weeks, so it was a good time for a new puzzle anyway.  Keeghan chose a dragon collage this time (click HERE to see what it looks like).  I didn't pay much attention to how big it was, assuming he wouldn't go any bigger than 1,000 pieces.  Well, I was wrong.  We started on the border which, by the way, was ALL black and gold!  It took us (i.e., me) two days just to get one side of the border done.  That was when I realized he had chosen a larger puzzle than the last one because the one side I had completed extended about two inches off the edge of my card table.  I grabbed the lid to the box and saw that this puzzle was 1,500 pieces!

We had to move it to the dining room table, and then worked like crazy to get it finished and glued before Mike got home so that we would be able to eat at the table!  We managed to finish the 1,500 piece puzzle in just ten days - three of which were spent only on the border!  I still need to get some type of frame for it though.  So it is glued together, but still on the card table.  BUT . . . Keeghan is ready to start a NEW puzzle!  When we bought the dragon collage, we also bought THIS puzzle, and he is chomping at the bit to start on it!

Help me . . .

Shannon

26 September 2006

I can't believe no one is yelling at me for not updating in so long!  Oh well, this one is going to be long enough to make up for a week of nothing!

Last week was a very long week.  Starting off the week with Keeghan not being able to start chemo, combined with Daddy being gone all week, made for a week of Mommy jumping through hoops to keep everyone's spirits up.  It wasn't easy, and I don't know how successful I was, but at least that week is OVER!

This week is off to a better start.  Keeghan did get to start chemo yesterday.  His numbers were WAY up from last week.

White Blood Cell Count - 1.8

Red Blood Cell Count - 3.26

Hemoglobin - 10.6

Platelets - 180

He was still slightly low on the white blood cell count, but (per the treatment protocol) it was still OK to start the next chemo cycle, just at a lower dose on the CCNU.  The best news about all of this for Keeghan is that he was able to start taking Prednisone again yesterday.  His weight is down to 76 lbs (he was up to 81 after the last cycle of steroids), so he's looking forward to having an appetite again.  He still eats when he's not on the steroids, but it's harder to find foods that sound good to him.  I wish I could get a picture of the face he makes when you offer him something that doesn't sound good.  It's the funniest thing - his whole little face sort of scrunches up like he's just taken a bite of a lemon!  Too cute.

I had a bit of a run-in with Walter Reed yesterday.  Keeghan was scheduled for a quarterly follow-up with Endocrinology before we went to the Hem/Onc Clinic.  This was his first endocrinology appointment since we moved here.  When I scheduled it, I asked if the endocrinologist was in the Pediatric Clinic, because there was no way I was taking a child with a suppressed immune system into a clinic full of sick children.  I was told by the lady scheduling the appointment that the endocrinology clinic was separate from the Peds clinic.

Yeah . . . not.

I asked for directions to Pediatric Endocrinology at the Information Desk as soon as we walked into the hospital.  The gentleman directed me to the Peds clinic.  I said, "No, I was told that the endocrinology clinic was separate from Peds" to which he smiled very slowly (as though he was speaking to someone slightly English-language-challenged) and again pointed me to the Peds clinic and said, "THAT is where you need to go."

Needless to say, I went into full-on angry mother mode.  Poor Max and Keeghan (having seen this side of Mom before) trudged along behind me as I marched toward the clinic.  When we got there, I looked at the kids and said, "DO NOT come in this clinic, just wait here in the hallway."  I walked (i.e., stormed) in, and explained that my son had a 10:00am appointment and asked if I was in the right place.  When the (poor) receptionist confirmed that I was in the right place, I got even more angry.  I went into a tirade that sounded something like this (and yes, I think I really did only take one breath throughout this whole thing):

"My-son-is-going-through-chemotherapy-and-is-NOT-coming-in-this-clinic-full-of-sick-children!"  Deep breath, and . . . "I-was-told-that-pediatric-endocrinology-was-NOT-in-this-clinic-and-am-VERY-angry-that-I-was-lied-to!"  Followed by, "WHO IS IN CHARGE HERE?"

The poor woman behind the glass was speechless and looking at me like she expected me to sprout a second head any second.  Luckily, there was a nurse passing by as I had my little freak session and he pulled me aside and told me that he would put the kids and I in an isolation room until the doctor was ready to see Keeghan.  Crisis averted I guess.  But I was SO beyond upset that Keeghan had been scheduled in that clinic.   When we were in San Antonio, one of the things we were always told was NOT to ever take him to the Peds clinic.  Luckily the endocrinologis was extremely nice and said that he would come up to the Hem/Onc Clinic to see Keeghan next time he is due for a follow-up.

You would think that this would have been the end of my anger, right?  But NOOOOO!  We mothers of sick children can get angry over the least little thing!

Keeghan had to get his monthly antibiotic treatment yesterday also.  He has to go to a special isolation room for this.  After the treatment, as he and I were walking back to the clinic with the nurse, I told her how upset I had been over Keeghan being scheduled in the Peds Clinic.  Her response was to say, "Wellllllll, you knooooooooowwwww" (I'm starting to get a complex, by the way, over so many people talking to me like I'm a complete idiot.  Do I have "STUPID" tattooed to my forehead?) "what his biggest protection from infection is?  It's not from what is in the air so much as it's from what germs he touches."

Obviously this person does not have a child with cancer.  Yes, I know that hand-washing is Keeghan's best defense against infection.  But I also know that the slightest fever can land him in the hospital for a week or more.  So while I make sure that Keeghan washes his hands often, and we have bottles of hand-sanitizer in every room, vehicle and purse, I'm still not going to put him in a room full of sick kids spewing germs out into the air constantly!  It's very easy for a clinical person to throw these wondrous little bits of wisdom out at you, but they forget the fact that, as a mom, I am going to go above and beyond the minimum requirements to keep my child safe from infection.

Needless to say, I wasn't overly happy with how the day went.  I may not miss San Antonio at all, but right now I'm really missing Keeghan's doctors and nurses there.

S.

18 September 2006

Have you ever had one of those days where you just don't know if it was a good day or a bad one?  Well, that was my day today.

The kids and I got up this morning and went to Walter Reed for Keeghan's chemo appointment.  These clinic days have become routine enough for us now that the morning went fairly smoothly.  Then we arrived at the clinic.  Oy!

It was an hour after we got there before Keeghan even had labs drawn.  Then we waited for 2.5 hours to get the lab results, only to find out that he couldn't receive his chemo treatment today because his numbers are still trending down.  Yes . . . DOWN!  This is how the counts for this week look:

White blood cell count - 0.9 (down from 1.1 last week).  

Red blood cell count - 2.98 (down from 3.52 last week)

Hemoglobin - 9.8 (down from 11.1 last week)

Platelets - 67 (UP from 19 last week)

According to the doctor I talked to today, Keeghan's white blood cell count has to be at least 2.0 and his platelets have to be at least 80 in order for him to start chemo again.  At the rate he's going, I doubt he'll even be able to start NEXT week.  I just hope his numbers are starting to rise again by then.

When Keeghan first started this round or chemotherapy, I spoke with the doctors and was told that it was unlikely he would end up being neutropenic during this round of chemo.  I've also been told since then that the reason for his numbers bottoming out like this is from the one dose of CCNU (that he received on August 8).  A week ago, when Keeghan had to go in for his second platelet transfusion in a week, the doctor told me that his CCNU dose was going to be lowered by half during this second cycle, all because of it driving his counts down so low during the first cycle.

Today, when the doctor came to tell me that Keeghan would not be receiving his chemo treatment, I asked again if his numbers being down was due to the CCNU and he said, "yes."  So I brought up the lowered dose for the next round again and he told me that now they are looking at dropping his next dose to 25% of the dose he was given during the first cycle!

Forgive me for being a little blunt here, but HELLO????  I realize I am not an oncologist and therefore don't understand how all of these medications work, but it seems to me that if the first dose was SO strong that they are going to cut it by 75% in the second round, maybe someone should have thought that the initial dose was too strong to begin with, you know?  I've always thought with medication that you work your way UP to the correct dose, not the other way around.

I should explain also that Mike is gone - he left yesterday morning for a two-week class in Alabama.  So that is adding some strain to things right now.  This is the first time Mike has had to be away since Keeghan was diagnosed, and Keeghan is not dealing well with it at all.  That little guy loves his Daddy . . . and every little thing that has gone wrong today has been one more reason to get upset about the fact that Daddy is not here.  That's been rough.  Max and I have been jumping through hoops to cheer him up so that he doesn't think about it.

The other real bummer about Keeghan not starting chemo today was that he was looking forward to getting back on the steroids.  It sounds weird - you'd think the kid would be excited that he gets one more week of not being on chemo - but, when he's receiving chemo, he's also on steroids.  The steroids increase his appetite, thus causing his energy level to be higher also.  We've all been looking forward to him getting back on the steroids because his appetite has definitely gone down in the past couple of weeks.

So, it's been a weird day.  I'm really hoping that tomorrow we can focus on school work and forget about cancer, and clinics, and chemo and just get on with life in general.  Maybe if we have a normal, routine day, Keeghan will not spend so much time dwelling on Mike being gone, and his counts being low, and be able to enjoy himself a bit.  Today has worn all of us out!

S.

16 September 2006

Not much to update this week.  Since Keeghan's transfusion on Monday, it has been a fairly relaxed week.  He had his first physical therapy appointment at Bethesda Naval Hospital yesterday.  That went well.  The therapist said that Keeghan's left side is actually slightly stronger than his right side now!  So much for a left-side deficit, eh?  Max, of course, was her usual wonderful self, helping Keeghan with as much of his PT as she could.  She even ran and skipped in the hallway with him so that the therapist could watch his gait!  She's still amazing.

He will now have weekly appointments for PT, which is good.  I was hoping to not have twice weekly appointments only because, with chemo once a week also, that would mean three days a week of us driving all over DC, which would make finding time for schoolwork a bit difficult.

Finding my way to Bethesda was interesting.  As was the norm for me, I missed one turn on the way there and had to backtrack to get back to where I needed to be.  Since Keeghan's appointment was at 9:00am, and Bethesda is 25 miles from here, we left the house at about 7:10am.  It took me 45 minutes to drive the first FOUR MILES!  Never again!  All of his future appointments will be scheduled no earlier than 11:00am!  What was really funny was that I missed THREE turns on the way back.  So we took the scenic route home - we passed the White House, the Lincoln Memorial, the Washington Monument AND the Pentagon!  And even with all of that, we still got home 30 minutes faster than it took us to get to Bethesda in the first place!

Keeghan starts his second cycle of chemo on Monday.  It sounds crazy, but we are actually looking forward to it this time.  When he's receiving chemo, he is also on steroids, so his appetite is much better and his energy level is higher.  During the last round of chemo he gained 6 pounds, and since it ended has lost two.  Hopefully, after a few cycles, he'll be back up to a less-scrawny weight!

I have added pictures from our picnic on the National Mall last weekend to the DC Time! page - please check them out!

S.

11 September 2006

Another lab draw . . . and another transfusion!  Mike drew labs on Keeghan again this morning and, once again, his platelets were low enough that he needed a transfusion.  It was a much shorter day than last week though since he ONLY needed platelets and no blood.  Still . . . it meant loading up and heading to Walter Reed and being away from home for four hours.

But all is good now.  One of the things I enjoy the most when the kids and I spend any amount of time in the car are the conversations we have.  Today, Max noticed that all of the flags on base were flying at half-mast and she asked why.  So that sparked a big conversation on the events of 9/11, as well as so many things that have happened since then.  It was a serious conversation, but a good one.  And it made the drive to the hospital pass by much faster!

I hope that everyone has enjoyed a good day, and yet haven't forgotten the significance of this day in our nation's history.

Blessings to all!

Shannon

10 September 2006

I’m not sure if I can type this in a way that will convey how hilarious it actually was, but I’m going to try.

The four of us were watching the movie Men In Black earlier.  In the movie, the characters of J and K have these little flashlight things that flash a red light.  They use them to erase people’s memory.

During one scene, K flashes the light at this woman to erase her memory.  A few moments later, he flashes it at her again.  J says to K, “Hey man, don’t do that – you’re going to give her brain cancer or something.”

When Keeghan heard that, he looked up from the video game he was playing, raised his hands in the air, and said, “BRAIN CANCER!”

Then I said (not really expecting a response from anyone), “So that must be what happened – someone flashed a red light at Keeghan too many times.”

Then, out of nowhere, Max says, “Sorry . . . .”

Keeghan immediately CRACKED UP laughing!

It took Mike and I by such surprise because Max was just quietly sitting on the couch, not really saying anything.  But the timing of it and the way she said it was SO funny!

I guess it's good that we can all get such a laugh out of cancer, eh?

S.

5 September 2006

What.  A.  Day!!!

Today started off like any other day, with the exception that Keeghan was due for labs again.  With the excitement we had over the weekend of visiting all the museums, and Keeghan handling all of that just fine, we figured that his numbers must be SOARING by now.  Right?  

WRONG!

I received a phone call at 10:30am from the clinic telling me that he needed a blood transfusion AND a platelet transfusion!  His red blood cell count was down to 2.04.  Keep in mind that anything below 7.0 requires a transfusion!  Wow!  We were expecting a day of schoolwork and watching it rain outside, and instead we were scrambling to get dressed and put together a bag of stuff to keep us busy through hours of sitting around the clinic.

We arrived at the clinic around noon, and when all of his transfusions were complete and we were able to leave, it was 6:00pm.  We arrived home at about 7:00pm.  Talk about a long day!

But, all is well now.  The little guy is hanging out on the couch, watching television with his sister.  Even though all he had to do was sit in a chair all afternoon, it still takes a toll.  Like he says, it's not ONLY sitting in a chair - it's having a blood pressure cuff on his arm the whole time, pumping up every fifteen minutes, along with constantly having the nurses taking his temperature . . . not exactly a relaxing lay about!

Hopefully tomorrow will be more relaxing.  At least he should be feeling a little more perky after all the blood he received today!

S.

4 September 2006 - new pictures on the DC Time! page

I hope that everyone has had a good Labor Day weekend.  Ours has been fabulous!  We managed to make it through the remnants of Tropical Storm Ernesto on Friday.  Even though it rained all day without break, it didn't do any damage.

On Saturday we decided it was time for Keeghan to conquer the Smithsonian Air & Space Museum.  After his last experience there (where he managed to last about five minutes before vomiting all over the floor and then leaving), it was high time he got to see everything.  We attended the "Infinity Express" show at the Einstein Planetarium, which was a big thrill for the kids.

Today we went to the Smithsonian National Museum of American History and the National Museum of Natural History.  The American history museum is closing tomorrow for renovation and will not be open again until the summer of 2008, so we had to make it there.  I have to admit that I was like a little kid!  It was so exciting getting to see Dorothy's ruby slippers, Oscar the Grouch, and Mr. Rogers sweater!  The kids participated in a "Hands-On Science" experiment where they separated DNA from a cellular solution to see how it looked.  Max thought the DNA "looked like snot."  Keeghan thought it was fun though.

There was a part of the hands-on experiment that was really sweet.  The guy teaching the kids was this crusty old guy - really gruff and matter-of fact about everything.  At one point he was telling the kids about how the study of DNA could change the way diseases affect us.  He looked directly at Keeghan and said, "In our lifetimes . . . well, OK, maybe not in MY lifetime . . . " (and he looked right at Keeghan for this part) "but in YOUR lifetime, cures WILL be found for diseases that make you sick now.  But they will find a cure so that you don't have to be sick anymore."  Wow!  It was really powerful; I had to turn my back and act like I was reading the posters on the wall just to compose myself!

After we left the Amercan History museum, we went next door to the Museum of Natural History.  The kids just HAD to see the Hope Diamond, all because of a story Mike had told them.  Apparently Mike visited the Smithsonian as a child, and when the family went looking for the Hope Diamond, they came across this big crystal ball.  Young Michael thought THAT was the Hope Diamond and was very impressed!  Then he saw the real diamond and was . . .well . . . disappointed!  In his young mind, it wasn't nearly as impressive as the crystal ball!  The funniest part about going there today was that the crystal ball was still exactly where Mike remembered it being - just around the corner from the diamond.  Be sure to check out the new pictures on the "DC Time!" page to see pictures of both!

So it's been a good weekend for the Barry family.  We spent about four hours walking around museums today and Keeghan held up better than the rest of us!  By the time we came home, everyone had sore feet - except The Fierce One!  He hasn't stopped talking about the things he saw today, and we've been home for three hours!

These are definitely the days we've been living for!

Shannon

30 August 2006 - again

Good news!  No transfusion needed as of today!  I spoke with Dr. Harper, and while Keeghan's red blood cell count has remained almost the same (up from 7.1 to 7.17), his overall ANC is now over 1000, which is good.  Since his counts are showing signs of rising and he doesn't seem to be overly fatigued, Dr. Harper decided to wait and draw blood again in a few days.  So Mike will draw blood on him again on Tuesday.

So, all in all, it was a big YAY from all of us today!

S.

30 August 2006

SUCCESS!

It is 8:00am and Mike has already drawn Keeghan's blood and is off to take it to the lab.  While this may not seem like a big deal - it is HUGE to us.  Last night Keeghan broke down and cried over being scared to have Daddy draw his blood.  His biggest concern was that he didn't want any pain.  Mike and I talked about it and decided that if he was still that freaked out this morning, we would just call the whole thing off and I would drive him to Walter Reed to have it done.  But all went well.  I woke Keeghan up at 7:00am to put EMLA on his arm (Mike had already checked to see where his best vein was last night).  I crawled into bed with him and made him look at me instead of at Daddy through the whole thing.  In just moments it was over and all Keeghan wanted to do was give Mike a big hug!  It was pretty cute.

Now we'll wait and see if he needs a transfusion or not.  If so, it will be a pretty long day because he's never been typed and crossmatched at Walter Reed.  So we won't even be getting there until lunchtime (at the earliest), and then will likely be at the clinic for at least 3-4 hours.  That puts us driving back across DC in work traffic to get home.  Needless to say, I'm hoping no transfusion is needed!

Shannon

28 August 2006

Update on the allergies - Keeghan is still a little stuffy occasionally, but since Thursday he's had no complaints of headache.  We had to take him to Walter Reed today for labs, so I talked to Dr. Harper about the allergies and he prescribed Zyrtec.  The Benadryl worked fine last week, but it does make him sleepy.  So the Zyrtec will be better for daytime.

Once again Keeghan is slightly neutropenic.  His ANC was at about 900 today.  Also, his hemoglobin was low at 7.1.  Anything below 7.0 and he needs a transfusion.  Just to be safe, the doctor would like labs drawn on him again on Wednesday.  Dr. Harper thinks that his body may already be starting to produce red blood cells though, so his numbers may be on their way up and a transfusion may not be necessary.  Therefore, we are going to try something a little different this week.  Instead of making the drive to Walter Reed on Wednesday (which takes about 45-60 minutes each way) just to have labs drawn, Mike is going to draw blood on Keeghan here at the house.  He will then drop it off at the lab on base on his way to work.  If Keeghan does need a transfusion, we can still drive him up to Walter Reed that day to receive it, but if he doesn't need one we haven't wasted a trip.  Keeghan is completely cool with Daddy drawing blood on him.  After all, he let Mike give him his GCSF shots after we left San Antonio.  The clinic gave us tubes, tourniquet, needles, etc., so that Mike has everything he needs.  All I can say is it should be interesting!

In other news, we started homeschooling today.  I had originally planned to start next week, but since it is a short week (due to the holiday) I changed my plans.  Instead we started today, but I am giving the kids this week and next to complete the first week's work.  This way they ease back into school without too much stress on anyone.  So far so good.  Keeghan was so excited to be doing school work, he actually worked on Language Arts all the way to Walter Reed today, as well as working on it while he was sitting in the clinic!  Something tells me he's going to finish his first week by Friday and, instead of taking next week off, want to start on Week 2!

I'll be sure to post again on Wednesday just to let everyone know whether or not Mike is as good a stick as he used to be!  If he's not, I'm sure Keeghan will let him know it!

S.


24 August 2006

Poor Keeghan is feeling pretty cruddy today - and this time it has nothing to do with cancer!  I think he's having problems with allergies.  He has had a sore throat for the past two days, but only when he first wakes up in the morning, along with nasal congestion.  This afternoon he started having a headache as well.  The headache is just above his eyes, across his forehead.  But he has not run a fever at all.

So, I called the on-call doctor.  Of course, he had absolutely no idea who I was or anything about Keeghan's case.  But, after explaining everything to him, i.e., what Keeghan is being treated for, what medications he's currently/recently taken, etc., he said that it did sound like allergies and that it was ok to give him children's Tylenol for the headache and then we can give him Benadryl at bedtime for the stuffiness.  Hopefully that will help and he'll feel better tomorrow, or else it's off to Walter Reed again!

Does the worrying ever end??

S.

22 August 2006 - new pictures added!

Week 3 of 48 and all is well!

Keeghan had his last chemo treatment of this 6-week cycle yesterday, and once again, he has handled it well.  The biggest side-effect he has had from chemo in the past couple of weeks is that his eyebrows and eyelashes are now starting to fall out.  I asked his doctor yesterday if he thought that was odd - that he didn't lose them during that first 6-week induction treatment and yet he's losing them now.  He said that it is likely from taking the CCNU.  No matter - I tell Keeghan that he's still madly pretty, to which he replies, "HANDSOME Mom - I'm HANDSOME!"

So now he will not receive another chemotherapy treatment until September 18th.  WOO HOO!  He takes his last steroid dose tomorrow, and then he's off of that until the 18th as well.  His labs yesterday were good.  His white blood cell count isn't as high as it was last week, but it's still only down to 3.8.  We have to go back to Walter Reed next week for labs and for Keeghan to receive his monthly Pentamadine antibiotic treatment.  Hopefully after that he'll get a couple of weeks without getting stuck with any needles!

We had a little bit of excitement today as the kids' homeschool curriculum arrived in the mail.  It was pretty comical because my first comment was, "Ok, so I guess school starts tomorrow!"  Keeghan immediately yelled, "YAY!"  Max, on the other hand, just about gave herself whiplash and said, "WHAT????"   So go ahead, take a guess at who will be my easy student and who will be the challenging one?  I don't plan on starting school until after Labor Day though.  Now that I have their books to look at, I need to work out what our daily schedule will be.  Max was extremely relieved to hear that news!

As always - thanks to everyone following along with our family's journey.  We check the posts in the Guestbook daily (ok, in my case, numerous times daily), so keep them coming!  We love all of the stories that everyone is sharing.  By the way, does anyone know if Lorene ever found the other snake????

Take care everyone!

S.

16 August 2006

Those of you following our website, and also reading the posts in the Guestbook, will understand what I am about to say:

Lorene - you are a FAR more adventurous woman than I am!  A snake in the house - somewhere - but you don't know where??

No way.  I concur with Lynda on this one.  I'd be out of that house in a heartbeat!  Of course, more than likely I'd be out of it and have a big "FOR SALE" sign in the front yard, but I'm also a big chicken when it comes to anything poisonous!

Nothing new on the home front.  Keeghan is cruising along fine.  Max is LOVING rehearsals for her play.  Mike has finished a class at the Pentagon that he had to attend this week.  And I am tinkering around the house, waiting for the kids' homeschool curricula to arrive.  I have my classroom almost ready, I just need a whiteboard and a couple of cork boards and we're set!

Bottom line . . . life is good.

S.

14 August 2006

Good news today!  Not only is Keeghan's white blood cell count at a whopping 6.8, but we also found out that the CCNU pill that we thought he had to take once a week for three weeks is actually a pill that he only takes once every six weeks.  So he received a dose of Vincristine today, and will receive another next Monday, and then he doesn't have any chemo at all for approximately three weeks after that.  Trying to keep the new med schedule straight is still kind of confusing to me, but thank goodness the docs at Walter Reed are keeping me on my toes!

All is going well with Keeghan.  He's eating like, well, a 10-year-old boy again.  It's wonderful!  He's well on his way back to having the hollow leg that we always teased him about having before all of this started.

Max had an awesome day today as well.  She auditioned for a part with the Missoula Children's Theater here on base.  They will be performing the play "The Frog Prince" this coming Saturday.  So it is a week of intense rehearsals, culminating in the play on Saturday evening complete with professional stage props and costumes!  She will be playing a flamingo (Flamingo #4 to be exact) and is very excited.  In fact, she's thrilled that for her first play she has a role, but not a BIG role, i.e., too many lines to memorize!  We're are all so excited to get to see her perform on the stage!

More to come soon!

S.

11 August 2006

Four days without a post - holy cow!  Whatever you do, don't take that as meaning that we've been so busy there hasn't been time to post . . . because it isn't that at all.  It's mostly just me enjoying a week of hanging out with the kids doing absolutely nothing!  Well, maybe not "nothing" . . . we finally beat the video game that we started back in March before Keeghan was diagnosed . . . and I think I've unpacked two or three boxes.  Mostly we have been hanging out just enjoying the last few weeks of summer vacation.

As a follow-up to my last post - Keeghan had no problem taking his CCNU pill on Tuesday.  In fact, he says it is "the easiest chemo he's done so far."  The steroids are definitely having an affect on his appetite.  The boy is hungry almost constantly!  That was the only problem with the night he took the CCNU.  He has to wait until at least two hours after he last ate to take it, and right after he took it he was hungry.  So by Wednesday morning when he woke up, he was S-T-A-R-V-I-N-G!  But other than that, he's had no issues at all with starting up chemo again this week.

I plan to take more pictures this weekend to post here.  Like I said, we haven't done much at all this week.  In fact, I think there were a couple of days that we stayed in pajama's all day!  Poor Mike started work on Monday and I'm sure he came home and thought he lived in a house full of slugs!  But it was fun, and that is what counts.

More to come this weekend . . . stick around!

S.

7 August 2006

Well, I managed to drive to Walter Reed Army Medical Center today without getting lost!  YAY!  That doesn't mean that I didn't miss a couple turns and have to find my way back on track . . . it just means that I never got lost.

Keeghan started chemotherapy again today.  He was very nervous about it, even though the medicine he received was one that he's had before and already knows how he reacts to it.  I don't think he will ever get to the point where he doesn't get nervous about having his port accessed.  I can't say that I blame him though.  No matter how much numbing cream you put on me, I'd still freak when I saw a 1 inch needle coming my way!

The new schedule of meds is a bit complicated.  I had to go out and buy a calendar that I could devote solely to Keeghan's medicine schedule.  The schedule looks something like this:

    * Day 1 - Vincristine (received in the clinic); 40 mg Prednisone
    * Day 2 - CCNU (chemo med in pill form); 40 mg Prednisone
    * Days 3-7 - 40 mg Prednisone daily
    * Day 8 - Vincristine; 40 mg Prednisone
    * Day 9-11 - 40 mg Prednisone
    * Day 12-14 - 10 mg Prednisone (this is where it starts to taper off)
    * Day 15 - Vincristine; 5 mg Prednisone
    * Day 16-17 - 5 mg Prednisone

After Day 17 he gets a few days off (I'm not sure exactly how many yet).  Then the whole schedule starts all over again.  The CCNU is our biggest concern right now because Keeghan has never taken it before.  So we'll see what (if any) reaction he has to it.  Also, it is a fairly large capsule and he just doesn't swallow pills well.  Normally we break them into smaller pieces, but the pharmacy said we absolutely cannot do that with this capsule.  So . . . we cross our fingers and hope it goes well.

So the treatment begins again . . . it's so hard to watch him have to go through so much.  But he's just such an amazing trooper through it all.  But, Week One has started . . . only 47 to go after this!

S.

2 August 2006

The power of sending positive energy . . .

I talked to my mom on the phone today and she told me a story that really choked me up.  My parents subscribe to a service where they have their prescription medications delivered to their home.  Considering the fact that my mom is diabetic and my dad has had heart bypass and full knee replacement surgery in the past three years, they receive prescription meds fairly often.  It's always the same lady that delivers their prescriptions.

When Keeghan was first diagnosed with cancer in April, Mom told the delivery lady about it.  Apparently she immediately had Keeghan's name added to the prayer list at her church.  A couple of weeks ago, Mom told this lady the news that there was no evidence of tumor when he had his last MRI's.  I guess she announced it at her church the following week and she said that the whole congregation cheered!  A group of total strangers in California cheering for my baby . . . it still gets me choked up just thinking about it.

I just love hearing those stories.  What a small world it really is.

S.

2 August 2006

Nothing new to post really.  We are now at the "fine tuning" stage of unpacking.  Just a few boxes left to unpack and then it's the pictures.  For my birthday tomorrow, I told Mike that I want to hang all of our pictures.  It doesn't sound like much, but we have a LOT of pictures!  He'll probably hate me by the end of the day!

Check out the new pics on the "DC Time!" page - Keeghan helped me put together book shelves for our classroom (the 4th bedroom).  He was a huge help (Grandpa Kelley would be so proud)!

S.

29 July 2006

The side-effects of cancer/chemotherapy rear their ugly heads . . .

Keeghan asked last night if we could go to the Smithsonian today.  We've been hard at unpacking for the last four days, so we all needed a break.  We took the Metro downtown, getting off at the station closest to the Air & Space Museum.  It was only about two blocks to the museum.  But it was HOT.  We hadn't walked a full block before Keeghan started feeling sick.  By the time we made it to the museum, he was feeling faint.  We bought him a bottle of water and got him into the museum and he just couldn't hold it in anymore.

So yes, Keeghan has officially initiated the Smithsonian Air & Space Museum by vomiting all over its floor.  Mike immediately went outside and hailed a taxi and we came home.  The poor baby felt so horrible.  Once we got him home, cooled off, and fed him some soup, he felt fine.  And once again Mike, Max and I were left feeling just . . . angry.  Not at Keeghan of course.  It was more that we were angry FOR Keeghan.  To not be able to go do the things that he wants to do is so frustrating.  The worst part is there is no one to yell and scream at over it.  If the three of us could destroy cancer with anger alone, it would be gone.  Worldwide.

So we've now decided that, if we decide to venture downtown again before the weather cools off, we will drive there, Mike will drop us off at the door so that we can immediately get into the air conditioned building, and then he can deal with the frustration of finding parking.

Puking in public places deserves a bigger jingle bell, don't you think?

S.

26 July 2006

No big news in a few days . . . it's good to know that no news is good news, eh?

Keeghan had another appointment at Walter Reed on Monday, and all went well.  He received his monthly prophylactic antibiotic (which he receives to protect him from getting pneumocystis).  He also had labs drawn, and finally his numbers are UP!  His immune system is finally starting to grow stronger.  We knew he was on his way up just by his behavior though.  He's much more active, able to walk further distances without tiring, and best of all, he's back to being his normal sarcastic, snarky self!  I know he's feeling good when he starts harassing and teasing his big sister, as well as challenging Daddy to battles!  When Mike starts teasing Keeghan, and the boy comes back at him with, "You want a piece of this Old Man??", I know he's feeling great (and just so everyone knows, Keeghan isn't being disrespectful when he says that to Mike - that's just the goofy relationship the two of them have).

Our household goods were delivered yesterday.  So the house is now full of boxes.  But we all got to sleep in our own beds last night for the first time in over a month.  It was WONDERFUL.  Seriously.  Mike and I will be in full-on "pull-this-place-together" mode for the next couple of days . . . ok, so maybe it will be for the next couple of weeks . . . I'm trying to be optimistic!  Keeghan can't wait to find all of his "stuff", meaning all of his rocks, shells, Lego's, Bionicles, etc.  Max just wants to start hanging posters!  It's going to be fun making this place "home."

I hope that everyone will continue to follow along with Keeghan's journey.  He starts chemotherapy again on August 7th.  Right now I'm not sure what chemo meds he'll be getting, or what his reaction to them will be.  I know that he has to go back on steroids, which he's not very happy about.  He was on heavy doses of steroids just before surgery, and for a couple of weeks after, and he hated the side-effects.  You may have noticed in a lot of the early pictures (meaning around the time of surgery) that his face was very full, and at times he looked like his face was breaking out.  He also developed a hump on his back, just below his neck.  That was all from the steroids.  Now that he's been off of them for a while, he looks more like his old self (just without hair).  He isn't looking forward to going back to having the "moon face" that the steroids cause.  But, we'll deal with that when it happens I guess.

Ok, I'm off to help Mike unpack now!

S.

22 July 2006

We took our first ride on the Metro today!  We decided that we needed to get out of the empty house and look around our new home town, so we took the Metro to the Smithsonian.  We didn't actually go there though, since we want to save that trip for another day.  Instead we walked from there to the Washington Monument.  Keeghan started getting tired, so we took a cab the rest of the way to the Lincoln Memorial.  Keeghan finally got to have his picture taken "on the penny."  The crowds were crazy, so it was impossible to get a really good picture.  But I've posted what we have.  The heat was so bad that we decided to come home after that.

It's so hard to pick just one or two places to visit when there is SO much to see.  But, we have plenty of time to see it all so we're trying to pace ourselves and not wear Keeghan out.

I hope everyone enjoys the new pictures!

S.

21 July 2006

Life in DC is . . . HOT!  But we are loving it.  Grandad and Mike went shopping today.  Mike is now the proud owner of a very nice gas grill, some lawn care items, and I am the proud owner of a NEW . . . vacuum cleaner.  Yay . . . !

We said goodbye to Grandad today, which was a little sad.  It's been great having this past few days to spend with him, but I'm sure he is anxious to get back home.  But just so you know Dad, I'm glad that you came along for this trip with us, and not just because we felt better knowing we had a doctor along.

I am finally putting some new pictures up on the site.  I've started a new picture page for the DC chapter of our journey.  I'm sure over time I will have to add more "DC Chapters," as we will be here for quite some time.  But I think I'm up to over 80 pictures on the "Keeghan's Journey" page, and that is just too much to ask everyone to scroll through.  I only hope that people who are new to visiting our site will take the time to view the beginning of Keeghan's journey with cancer (hint, hint!).

Tomorrow we are going to test out the Metro.  Keeghan has been wanting to go to the Lincoln Memorial ever since we found out we were coming to Washington, DC.  He wants to get his picture taken in front of it so that he can say, "LOOK, I'm on the penny" (for those of you that are outside of the United States, the U.S. penny has the Lincoln Memorial on one side of it).  I think that is just hilarious.  He has the most bizarre mind sometimes!

So I hope you all enjoy the new pics!  Also, if anyone wants our new mailing address, please drop us an email via the "Contact Us" page on this site and I will email it to you.

Shannon

20 July 2006

I apologize for not posting sooner.  We are now living in the house, but without our household goods (more on that in a minute . . .), and therefore haven't been able to get online.  The cable guy just left though, so I am now able to update again.  Still no new pictures as I have to find the camera hardware and get it attached to the computer, but I promise to do that soon.

Keeghan had his first appointment at Walter Reed yesterday.  Everything went well.  His counts seem to still be hovering around that "borderline neutropenic" area, but he is doing FANTASTIC.  Both kids love Washington, DC so far, as well as the base we live on.  Keeghan and I took a walk along the Potomac River today.  It was hot, but still fun.  He thinks it is fun to watch the airplanes land at Reagan National Airport, which is just across the river from the base.  We also had an Army helicopter fly right over our heads!  That was very cool.

As for our household goods . . . we've been trying to track them down for two days now.  Finally someone found out where they were today and scheduled delivery for next Tuesday.  It seems that our things were delivered to some place in Virginia, but, because the Joint Personal Property Shipping Office's computer system has been down for the last three days, they haven't been able to find them.  It's amazing, isn't it, how no one can function without computers anymore?

So, we have five more days of living like campers in our own home before we can start pulling this place together and live like normal again.

Thanks to everyone for being patient!

S.

18 July 2006

WE'RE HERE!!!!!!!!

We made it to Washington, DC today around 11:00am.  We went straight to the housing office to get a house.  So everyone give a big WOO HOO for the fact that we are no longer homeless!  The first house they gave us to look at was nice, but I think Keeghan got a bad feeling from it.  He said we should ask to see if they have anything else we could look at.  So they then gave us the keys to the house right next door to the first one and we all loved it.  So we have been thanking Keeghan profusely for being smart enough to ask for choices rather than take the first thing offered.

The houses here are interesting.  The building we live in has six townhouse-type units.  Some are two-story units and some are three-stories.  The three story units appear to have the garage as their bottom floor and the other two floors rise straight up above.  We have an end unit, which is really nice because I hate being boxed in between other people!  The downstairs has a one-car garage, powder room, kitchen, living room, formal dining room and a small breakfast nook area.  Upstairs there are two full baths and four bedrooms.  So everyone gets a bedroom and we have an extra room to use as our classroom when we start homeschooling in September.  We have storage and closet space galore - something we've been seriously lacking for the past two years.  We are walking distance to the Potomac River (Mike is already joking around about buying a boat!).  Even the Commissary and Base Exchange are just a stone's throw away.  Can you tell that we are so happy with this house!?

We are staying at a hotel tonight so that we are closer to Walter Reed Army Medical Center as Keeghan has his first appointment there tomorrow morning.  After tonight, however, we will be "camping out" on aerobeds at the house until we can have our household goods delivered.  We are looking forward to meeting Keeghan's new doctors tomorrow, as well as to finding out where his counts are at.  His appetite is back and he's acting more like his old self than he has in weeks.  Just in the four days since we left Houston he has improved tenfold.

So as you can probably tell, we are thrilled to be starting out the "DC Chapter" of our journey.  I will start posting pictures again as soon as I can.  I haven't been taking many in the past 2-3 weeks, but that is mainly because Keeghan has been feeling so cruddy.  Now that his winning smile is back, I'll be taking many more pictures of he and Max to post here.

S.

17 July 2006

We made it to Charlotte, North Carolina yesterday afternoon.  I had no time to update though, as we spent the rest of the afternoon running around finding grocery stores, going to the pool, and then going out for dinner.  Keeghan ate 1/2 bowl of chicken noodle soup before we went to dinner, saying that he didn't want anything at the restaurant.  Then he proceeded to eat two crab claws, three bites of Max's angel hair pasta, and a handful of fried bowtie pasta with spinach and artichoke dip!  Yes, I think the boy's stomach is BACK!

Today we have a relatively short drive - approximately 300 miles - to Richmond, Virginia.  If I don't find a laundrymat at this stop, I have to go shopping!  Seriously!

A little side note here for Dr. Weinberg -  I forgot to mention in previous posts that we took your advice and went to Candylicious and The Chocolate Bar in Houston the day we saw you.  Keeghan was very selective in what he chose to buy, stating that he really wasn't up for candy right then so he was buying what he thought he might like later on when his stomach felt better.  He is obviously the smart one.  Max and I, on the other hand, have been grazing through the stuff we bought for the past three days!  So let me just say THANKS . . . SO much . . . for the candy store recommendation!

More to come from Virginia!

S.

15 July 2006

Our longest day of driving is over.  We are now in Birmingham, Alabama.  The day went by fairly fast (in my opinion - the others might beg to differ).  Grandad taught Keeghan how to read the map, so he played "navigator" for the rest of the day.  I took over driving at lunch and it was pretty funny the way Keeghan kept me posted on where we were.

"We have 47 miles left until we get to Alabama."

"Only 40 more miles to Alabama, Mama."

Yep, it was fun!  He's doing SO well on this trip so far.  He ate a little bit of a banana this morning before we left Baton Rouge, and tonight he had a craving for Spaghettio's (yes, I know, YUK) so Mike and I found a grocery store and bought him some.  He didn't eat a lot, but just seeing him eat anything at this point is awesome.

The parts of today's trip that haven't been fun were getting the car loaded this morning, and the room we're in tonight.  First off, it was so oppressively humid in Baton Rouge . . . it was hard to breathe!  By the time we got the cars loaded, we felt like we'd wasted our time even taking showers.  And the room we're in tonight is TEENY TINY!  There is barely enough room in it for the two beds and the television.  Now imagine two adults, two kids, a tortoise, and three cats in it.  SO not fun.  But, the nice thing is that we can't spread our stuff out all over the place, thus making it take longer to pack up in the morning!

Tomorrow we head out for Charlotte.  It is a shorter day of driving, so hopefully I'll be able to find a laundrymat when we get there.  After spending three days in Houston, and then two days on the road, clean clothes are becoming scarce!

Wish us luck!

S.

14 July 2006

Day one of the trip has gone well.  We drove from Houston to Baton Rouge with no problems.  In fact, we made it here by 2:00pm and then had to wait until 3:00pm to check in to our room!  It's a good thing we made it here early though because it has been raining like crazy for the past two hours!

I've updated the "Creative Writing" page and added some of the incredible poetry that has been posted in the Guestbook.  I have to say that Laney's poems have been such a joy to read!  Such talent!  These poems are so special to us that I decided to put them all on one page so that everyone can enjoy them without having to scroll through 40 pages of the Guestbook.

Tomorrow is our longest driving day - 400 miles.  That doesn't seem like much, but to Keeghan it will probably feel like forever.  He still tires very easily.  But after tomorrow, the driving days will be short and easy again.

More updates tomorrow from ALABAMA!

S.

13 July 2006

"NO EVIDENCE OF TUMOR"

That was the word we received today from Dr. Weinberg.  After Keeghan's last surgery, there was still a small portion of the tumor left behind.  But as of today's MRI, there is no sign of tumor left.

YAAAAAAAAAAAAAAAAAAAYYYYYYYYYYY!

I have to admit that I am somewhat speechless . . . I don't think it has really sunk in yet.  Honestly.  I have dreaded these appointments for so long, thinking that the BEST news we could receive would be that the tumor had not grown.  Never did I think we'd hear that it was gone.  GONE!

To all of you that have been praying for Keeghan, I have to send out a huge THANK YOU!

None of this means that Keeghan is completely cured.  Dr. Weinberg told us that they will still be watching the area where they believe the tumor originally began to grow.  Keeghan will still be going through weekly chemo once we get to DC, as well as quarterly MRI's to monitor everything.  But just knowing that there is no tumor left in that precious little head right now is such glorious news.  I'm trying so hard here to put into words all of the emotions that I am feeling, but I just can't.  I guess I'm sort of afraid to not be afraid.  Does that make sense?

The bottom line is that the worst part of Keeghan's treatment is over.  His white blood cell count is finally rising.  In fact, he's only borderline neutropenic now.  Personally, I think the incredible posts and poems, i.e., Crimson Red, in the Guestbook are partly responsible!  So many positive wishes sent his way HAD to help, right?

So now we just have to get to DC.  We will be hitting the road tomorrow.  The plan right now is to stop in Baton Rouge, Louisiana tomorrow night.  Saturday night we will be in Birmingham, Alabama; Sunday night in Charlotte, North Carolina; Monday night in Richmond, Virginia; and finally Tuesday we will arrive in Washington, DC.  I can't wait!

S.

11 July 2006

Another update - FINALLY!  It's been a loooooong week, let me tell you!  But, the good news is, Keeghan is out of the hospital and we are now sitting in a hotel in Houston, TX!  We have finally said goodbye to San Antonio.  I can't tell you how good that feels.

There are a number of people we will truly miss though.  What's funny about that is the fact that, before all of this started with Keeghan, we didn't have a lot of people that we would miss when we left San Antonio.  A few, but not a lot.  Then we met the wonderful folks at Wilford Hall.  Keeghan has made so many new "friends" there.  So many that I can't even begin to list all of their names - but I'm going to try.

First and foremost, Dr. Harford.  Not only were you instrumental in getting Keeghan to MD Anderson where he could receive the best care during his surgeries, but you were also exactly what we needed when we returned from Houston and wanted a doctor that would see Keeghan as a person and not just a case number.  You treated Mike and I with respect and caring, always making us feel like Keeghan was important to you (even when WE were probably driving you insane!).  You have our eternal gratitude for that.

The rest of the crew in the Hematology/Oncology clinic are incredible as well - Dr. Pitney, Dr. Howell, Dr. Gidvani, Steve and Jackie - you guys were wonderful to deal with, and we will miss you as well.  To Angie - we wish we could bring you to DC with us!  You dealt with Keeghan in such a "mom" way - he adores you girl!  He told me in the car today about how cool he thought it was that you told him you loved him and that he told you he loved you too.  He really does.  He also thought it was great that you hugged Max as well - he adores that sister of his more than anyone could probably understand, so you really scored with him on that one!  I'm just glad that you were all busy today when we were there so that I didn't have time to get all emotional - I hated saying goodbye to you.

To the staff of the pediatric ward, all I can say is "thanks for putting up with me!"  I know I was a pain sometimes . . . sorry!  But you were always there to help, answer questions, make me feel better, or just listen to Keeghan chatter.  For that you all deserve mad awards!  I know if I try to remember everyone's names I will fail miserably . . . Joe, Mark, LT Blecha, LT Juarez, Jenni, Carly, Danny, Angela, Heather . . . wow, there were just so many . . . thank you to all of you for making a hard situation easier.  Oh, and to Danny, you're still a chicken!

I don't think I ever knew all of the names of everyone in the radiation oncology area, but to Dr. Gardner, Lisa and Gina - thank you for taking such good care of our boy.  To the techs - thank you for making Keeghan's radiation treatment fun.

It's so hard to convey the emotions I feel when I think of all that Keeghan has been through in the past two months at Wilford Hall, and how many incredible people were there along the way to help.  There just aren't enough words.

So . . . we are now officially off to the next phase in the journey.  Appointments tomorrow and Thursday at MD Anderson for MRI's to determine whether or not Keeghan needs to have further surgery.  If there is one thing I would ask all of you reading this to pray for, it is that he DOESN'T have to have surgery again.  I know I am his mother, and therefore completely biased, but he is just such an amazing little man.  He deserves a break.  Some good news right now would be the best medicine in the world for him - and for the rest of us.  So please, pray, light candles, send out that positive energy to my baby and hopefully by Friday, we will be on the road for Washington, DC!!

S.

6 July 2006

It's been a few days since I've been able to update here.  Keeghan was admitted to the hospital again late on July 4th with a fever.  He had spent a very relaxing day in the hotel room, just hanging out with the family.  Then at about 10:15pm, just after he went to bed, I crawled into the bed with him for a cuddle and realized he felt warm.  I took his temperature and it was 100.0 - the "magic number" for fevers when dealing with neutropenia is 100.4 degrees.  Anything higher than that and we have to call the doctor.  Since he was only slightly below the magic number, I decided to wait and take his temperature again in 30 minutes.  After only 15 minutes, Keeghan decided it was time to take it again, so HE took his temp.  It was 100.5 - time to call the doctor.

He was admitted again and placed on antibiotics (Cefepime).  By Wednesday morning his fever was 101.2.  But since then he hasn't run a fever at all.  His white blood cell count is still at zero though.  The doctor said they won't discharge him until he a) is afebrile for 24 hours and b) his counts are starting to go back up.  He's met the 24-hour afebrile requirement.  But since his blood counts have not shown any sign of rising yet, they are planning to give him a shot of GCSF tonight.  I guess that does something to stimulate his counts - I'm sure most of you reading this understand it more than I do.  As it stands right now, it looks like Keeghan will be in the hospital until at least Saturday.  We're not due to get on the road for Houston until Tuesday, so this is not hurting the plans in any way (not that I would worry about it much if it did).  Keeghan come first, and he knows that, so it's all good.

Mike is spending the day at the hospital today.  Keeghan was extremely excited about having Daddy to himself all day.  When I left the hospital this morning, Keeghan was doing nothing but giggling.  For the most part, he is not feeling poorly.  He was upset about going back in the hospital at first, but he's over that now.  In fact, we were going for a walk last night and he told me that the hospital ward sort of feels like his "home away from homeless" right now.  I thought that was hilarious - and SO Keeghan.  As usual, his spirits are high.

I probably won't get a chance to update again before Keeghan gets out of the hospital.  Keep the positive energy headed his way - it keeps us all going!

Shannon


3 July 2006

Once again, the past couple days' posts have lifted me up!  John - Keeghan truly thanks you for helping him solve the mystery of converting 16 fl oz to Mililitres (and for anyone who hasn't already figured it out, Keeghan wants you all to know that 16 oz is equal to 480 mL).  As for you Grandad, with all of your challenges for Keeghan, he says "bring it!"  To Lynda, I definitely will not let the "turkeys" get me down - or at least not for long.  And to Jac - Keeghan LOVES the idea of "Sir Keeghan."  How cool is that???

Day three of being out of the hospital has gone well for Keeghan, although a little frustrating.  He had an appointment in the clinic first thing this morning to have labs drawn.  His platelet count was dropping due to the chemo, so his doctor expected him to need a transfusion today.  We waited 2.5 HOURS for the lab results, only to find that he did need a transfusion, thus causing us to have to stay at the hospital even longer.

Now here is a story that will amuse all of you doctor types out there.  We had to take Keeghan to the pediatric ward to receive the platelet transfusion.  We walked down there, got Keeghan settled into a room, and then asked how long it would take.  The nurse working with us said that it could be anywhere from two to four hours!  After already spending most of the morning just waiting for CBC results, we weren't thrilled.  We had planned to all go out to the veterinarian's today to get the monsters (i.e, cats) out and bring them back to the hotel.  Instead, Mike and Max had to go do that without Keeghan and I.

Anyway . . . after waiting about 30 minutes, I went to the nurse's station to find out how things were going and was told that the order for platelets hadn't even been put in yet!  Why, you ask?  Well, it seems a whole slough of new first-year residents just started on July 1st.  There were three working on the ward today.  BUT . . . apparently a child had coded in the Emergency Room and the whole pack of residents tore down there to watch!  I guess "code" equals "training opportunity."  I got a bit angry (understatement) and expressed my anger (i.e., blew up) to the nurse.  We were standing right outside the nurse's station at the time, and the attending physician over the entire ward was in there.  He heard me (as did many others in the near vicinity).  The nurse told me later on that this doctor went straight down to the ER, pointed at the three residents and said, "You, you and YOU - get back up to where you belong - NOW."  Do I feel guilty that a couple of residents are going to get chewed out?  Ummmmm . . . no.

So, he finally got his transfusion.  In the end we spent about six hours at the hospital.  One bit of news we received today was that Keeghan is already neutropenic again.  This is good though, because if his numbers are already bottoming out, it means they will be on their way UP by the time we leave for Houston next week, and then also for the roadtrip to Washington, DC.  I'd far rather have him be neutropenic now, when we're doing nothing more than hanging out in a hotel room, than while we are on the road.

Speaking of hotel rooms . . . we moved out of the Fisher House yesterday, which seems to be perfect timing as far as Keeghan's neutropenia is concerned.  We're now living in a small hotel suite that has a kitchen.  We are able to cook our own meals, and we're able to have the cats with us.  YAY!  The monsters are terrified of Mike right now though.  If he's in the room, Tasha and Buddy hide under the bed.  I guess they're making sure he doesn't put them back in a kennel!  B.B., on the other hand, has no fear.  He is already walking around the room as though it is the new kingdom over which he must rule!  Luckily they have eight days before we do have to put them back in the car - plenty of time for them to forget!

Keep the posts coming - we can't tell you all how much we love them!

S.

1 July 2006

Day one out of the hospital has gone well.  Keeghan hasn't had to go anwhere and has loved every minute of it.  He's started eating a little bit, which Mike and I are thrilled to see.  He's hilarious though - every time he sees any type of food commercial, he starts saying, "Mmmmmmm . . . that looks GOOD."  He's definitely hungry, but he's playing it safe and only trying small bites of solid food right now.  Smart man.

There was one major thing that I left out of my post last night.  I forgot to say how incredible . . . no, wait . . . how UNBELIEVABLY AMAZING Max was this past week while Keeghan was in the hospital.  Because Mike was busy getting the house ready for the movers, she had to be at the hospital all day, every day with Keeghan and I.  She never complained and was a huge help.  The only part she didn't deal well with was the puking.  She ran out of the room every time that happened, but that's ok.  That was Mom's job to deal with.

I've learned that some people just don't think about what they say before they open their mouths.  One day, while Keeghan was in for his radiation treatment, Max and I were sitting in the waiting room and this other woman whose teenage daughter is also going through radiation started talking to me.  For the most part, she seemed determined to prove that her daughter was far more sick than Keeghan.  I've run into other parents that do this - like there's a trophy for the parent with the sickest child!  It's really horrible.  Anyway, this woman, for whatever reason, felt compelled to tell me that her daughter's best friend was currently in the ICU.  Then she silently mouthed the words, "She's going to die."  Out loud, she told me that this girl also had a brain tumor.  The worst part was that the words she mouthed silently (I guess to prevent her own daughter from hearing) were seen by Max.

I was so disgusted, and upset.  I looked at Max and told her that I needed to go get a drink of water.  Before I made it around the corner to the water fountain I was in tears.  Apparently Max knows me better than I thought, because she knew I would be crying and followed me.  She put her arms around me and started comforting me (role reversal much??)!  She was so mad at that woman for saying what she did.  She kept telling me, "That is NOT going to happen to Keeghan!"  I really wanted to rip this woman to shreds.  I still do.

The bottom line to this whole story is that I don't know how I would have made it through this past week without my little rock Max!

More tomorrow . . .

S.

30 June 2006

Keeghan is out of the hospital - FINALLY!!!

It has been a very long week.  Seriously.  Keeghan finished chemotherapy on June 27th and was supposed to be discharged on the 28th.  Unfortunately that couldn't happen because he hadn't been able to keep anything down (food OR water) since Saturday.  He was really miserable.  His anti-nausea meds were increased, changed . . . nothing seemed to be working.  He was finally given a new medicine called Emendthat Keeghan has now labeled "the wonder pill."  He's managed to take in about 16 oz in fluids today and keep it down.  His mood has been WAY better too.  He's finally back to being the "nothing can stop me" kid he was before.  After five days straight of nothing but puking and drug-induced sleeping, I was really starting to miss my spunky boy, but he's back!

One nice thing about staying in the hospital a couple days longer was that we were there for Keeghan to finish his radiation treatments.  The last one (of 32 total treatments) was yesterday.  So he now has his mask at home and is already starting to decorate it.  The best part was that he kept putting it on his face as we were heading back up to the ward from the radiation area and it was really freaking some people out!  He got a real kick out of the strange looks from people!

The truly fun part about all of this is that we are now officially homeless!  All of our household goods were loaded up onto a truck yesterday and are now on their way to DC.  So we are living at the Fisher House here on Lackland AFB.  It's a nice place, but it's weird to come "home" to a place that isn't really "home."  We have two bedrooms and a bathroom, but we aren't allowed to eat in our rooms at all.  There is a kitchen, dining room, and playroom shared by everyone.  Considering the fact that Keeghan is now headed back toward being neutropenic, I'm not very comfortable with that.  Hopefully by Monday we will get into a hotel so that we can keep him a little more protected from other people's germs (because, in this mother's mind, EVERYONE is germy these days!).

Once again I have to send out a HUGE thank you to everyone that is posting here.  After being away from a computer for 8 days, it was awesome to get here and read all of the posts you've all left.  It's great to see old friends' names (Art - GREAT to hear from you!), as well as the posts from family (the ever wonderful daily Aunt Lynda posts) and new "friends" from around the world.  You all keep us going - thank you!

Ok - time to get everyone settled in for the evening!  More to come soon!

S.

24 June 2006

Two down, three to go!  Today was Keeghan's second day of this last five-day chemotherapy regimen.  Just like last time, he is tolerating it very well.  As with all hospital stays, however, there have been a couple of "communication issues" with the hospital staff, i.e., the night nurse thinking things need to be done differently than the day nurse did it.  But it's all fixed now.  Suffice it to say that Mommy laid down the law with the doctors and nurses last night and told them they need to all get on the same sheet of music - IMMEDIATELY - or things were going to get ugly.

The last chemo day is Tuesday, but because Keeghan needs to receive high doses of fluids for at least 12 hours after the last chemo med is finished, he will not be discharged until Wednesday.  His last radiation treatment will be on Thursday.  So by this time next week, my little man will finally be getting a well deserved break from treatment.  While he'll still have appointments with his oncologist here just to make sure he's doing ok, he won't have another chemotherapy appointment until 31 July at Walter Reed Medical Center in Washington, DC.

Can I get a big "WOO HOO" from everyone?!

We're still trying to figure out how we will get online during the trip.  We have a laptop, but it isn't "wireless" so we'll likely be using some prehistoric dial-up service.  Unfortunately, that means no new pictures until I get back on a real connection in DC.  But I will do my best to update occasionally so that everyone knows how things are going.

It's back to the hospital for me now - more updates soon!

S.

21 June 2006

Short post - just wanted to say that I've added yet more pictures!  We took the kids to Sea World today and had a BLAST!  But now we're all tired . . . and still needing to get ready to head into the hospital tomorrow.  Hope everyone enjoys the pictures though.

S.

20 June 2006

It has been two months today since Keeghan was diagnosed with a brain tumor.  In that time he has had three surgeries, two ambulance rides, one airplane ride, three ICU admissions, three hospital admissions (with a fourth coming up this week), six MRI's, three CT scans, and numerous other IV sticks, tube insertions, blood draws, etc.  It sure seems like it should have taken longer than two months for all of that.

When I think of that night two months ago, I still get this sick feeling in my stomach.  I remember calling my mom in California to tell her about it and saying that I didn't think I was strong enough to deal with all this.  I guess I was wrong - I have dealt with it.  But not as well as everyone might think.  The tears are always there, just waiting to fall.  I just have to be selective on when I let that happen.  It's the same for Mike as well.  It isn't strength that we have so much as an absolute determination to NOT lose our boy.

The appointments at MD Anderson next month have me worried.  That will be when Keeghan has new MRI's to determine if there is a need for further surgery.  Everyone (meaning all the doctors I've spoken with here) say that they don't see that being necessary.  Of course, Keeghan has been pretty atypical throughout this whole ordeal, so I've learned to not expect anything to go a certain way.  But I just want so badly for him to finally get SOME kind of break.  You know - "everything looks great, the treatments seem to be doing exactly what we want them to, the piece of the tumor that was left behind hasn't grown and nothing has spread."  That's what I want.  And is sure seems like Keeghan deserves that much.

OK - my rant is over - for now.

Shannon

19 June 2006

It was a great weekend visiting Corpus Christi!  We all had a great time.  I've added new pictures and videos for everyone to view.

We had Mike's pinning-on ceremony in the hematology/oncology clinic on Friday.  He was actually promoted to Major on May 1st, but we've been waiting for a good time to have the ceremony so that the kids could pin on his new rank.  Check out the videos to see some of the ceremony!

Keeghan goes into the hospital on Thursday.  By the time he gets out, the house will be packed up, so he's enjoying his last few days in this home.  There's no sadness on his part though - he is JAZZED to get moved to Washington, DC!

His week in the hospital will be a bit stressful for both he and I.  Because he has to be extra hydrated for this round of chemo, we've been told that they will be coming in to make him pee A LOT!  Since Mike will be getting the house ready for the packers, I will be at the hospital 24 hours a day.  I'm thinking sleep is not going to be easy to get!

I'll try to keep updating the website after we get out of the hospital.  I plan to make sure I have internet access.  I just don't know how much time there'll be to upload pictures.  But don't worry - once we get to DC, there will be TONS of new pictures and videos to share!

S.

14 June 2006 - again!

Hey everyone - I finally found a site to store video files on.  I only have one loaded up right now, but if you click on the "Videos" link you can find it.  Now that I've finally figured it all out, I'll try to get more up in the next few days.

S.

14 June 2006

Just a quick update on how things are going.  Keeghan is doing fantastic!  He has been in great spirits, going to his appointments with no problems, and just enjoying life.  PT kind of hurt him yesterday though.  Bethany was making him work the "bum region" as we call it and let me tell you, he was one sore boy last night!  This morning he woke up and said he was even more sore today.  But he had fun while he was there, so it's all good.

The move is coming together a bit more.  It looks like we may be able to stay in the Fisher House at Lackland AFB for the two weeks between when we move out of our house and when we leave for Houston for Keeghan's appointments at MD Anderson on July 12th and 13th.  While in Houston, we will also be staying at the Fisher House there, which is free for active duty military members.  If all goes well in Houston (meaning no further surgeries), we will leave from there and head directly to Washington, DC.  My biggest headache now is finding a place to kennel the cats for all of that time.

We may be heading to Corpus Christi this weekend to visit the grandparents.  Keeghan has his chemotherapy appointment Friday, so he'll be feeling pretty lousy Friday night.  But he's usually feeling good by Saturday morning.  It will be nice for him to get to see his cousins again though, so hopefully everyone can deal with a crappy-feeling Keeghan Friday night!

Hopefully more pictures will be posted by the weekend.  But if not, I'll have tons next week!

S.

11 June 2006

So far, it's been a great weekend for us all!  Even though Keeghan was feeling pretty bad Friday afternoon after his chemo, he slept well that night and had an outstanding day yesterday.  Today we've been chilling out.  We took a trip to Wal-Mart to buy jingle bells to donate to the clinic (one of the nurses thought the idea of getting a bell every time you vomit was awesome and is now going to incorporate it into the bead program at Wilford Hall).

Just so everyone can see exactly how many beads Keeghan has, check this out:


Note the jumble of jingle bells at the end!  One of my favorites is the big bald head bead which commemorates his hair loss!

More pictures have been posted to the pictures page, so be sure to check those out also!

S.

9 June 2006

It has been one month today since my first post here.  At that time, I figured I would post something small along with a few pictures, just to let friends and family know what Keeghan had been going through.  Then - HOLY COW - the website virtually exploded!!!

As I type this, there have been 1494 hits and 146 entries in the Guestbook.  It's insane!

What is most amazing to me are the posts from people we've never met before, i.e., the posts from people in Australia!  I'd love to know how they found out about Keeghan!  Besides Australia, we've had people from England, the Czech Republic, Germany, Canada and the U.S. sign the Guestbook - that truly is incredible and we appreciate it so much.

Keeghan has had a pretty good week.  He still loves physical therapy.  He had his first occupational therapy appointment yesterday and will start weekly OT appointments next week.  Today he conquered one of his biggest fears - having his port accessed.  He's had it accessed a few times now, but even using EMLA cream, he still gets scared and usually ends up in tears.  Yesterday, when he had to have blood drawn, he was busy crying and telling me how scared he was and that he didn't want to have it done, and suddenly I said, "Keeghan - it's done!"  He looked down at his chest, saw that the needle was in, and said, "OH!  I didn't even feel it!"

So today when we went in for chemo, he told me that he was "probably still going to cry."  While he was on the table and his favorite nurse, Angie, was getting the needle ready, he started telling me again how he didn't think he could do it without crying, even though he knows it doesn't hurt.  He says it's just the whole idea of it that freaks him out.  While he was busy telling me all this (not crying yet), Angie cleaned up the site and just stuck the needle in!  Keeghan knew she was going to do it soon . . . but she got it done before he could even get himself worked up about it!  No tears at all!  Angie and I both decided that definitely deserved a Bravery Bead!

By the way . . . including the jingle bells and the beads that we chose for his "outside appointments" such as PT and OT, he is now up to 104 beads!  He had the whole strand with him at the hospital today, and while he was waiting for his radiation appointment an older gentleman in the waiting room asked him what they were.  We explained how the program worked, and that Keeghan got a new bead for each of many different treatments/procedures.  The man asked how long he'd been accumulating beads and I replied, "About 7 weeks."  His jaw dropped!  He called Keeghan the "Miracle Man."  His radiation appointment was just before Keeghan's, so when the tech came to get him, he stood up, walked over to Keeghan and held his hand out to shake Keeghan's hand!  It was very touching!

I plan to post more pictures over the weekend.  We didn't get as many taken this week as we had planned.  Usually I take pictures while Mike and Max amuse Keeghan (standard operating procedure in our house), but poor Max got sick this week.  She started off Wednesday with a sore throat and by that evening was running a fever.  She ran a fever off and on again yesterday, so Mike took her to the doctor today.  What is funny is that the doctor said it could be allergies, or it could be a cold, or it could be strep.  I love the way they narrowed it down!  They put her on an antibiotic and recommended that she start allergy medicine again, so I guess they're covering all bases.  Either way, for right now we are having to keep the kids somewhat isolated from each other, which really stinks for them.  Keeghan is no longer neutropenic (YAY!), but we still don't want to take too many chances.

Ok - this has turned into a MUCH longer post than I originally planned.  Sorry!  I'll shut up now!

S.

6 June 2006

Wow - what a great couple of days Keeghan has had!  After so many miserable times last week, it's been a nice change!

After radiation yesterday, we got home and were hanging out - bored out of our minds!  So we decided to go the pool.  Keeghan swam, dived, played with Max, wrestled with Daddy and just generally had a great time.  We only stayed for an hour so as not to tire him out too much.  But swimming has always been one of Max and Keeghan's favorite things to do, so it was good to see him having fun and being a normal kid for a while.

Today was a busy day, starting with physical therapy, which he does at a civilian rehabilitation hospital.  Keeghan REALLY enjoys these appointments.  Having Max there today made it even more fun because he had her to play catch with.  He got to ride this weird contraption (see the picture on the "Keeghan's Journey" page) that was sort of like an eliptical rider, but it actually moved across the room.  It was so cool!  He had to ride it forward and then backward a few times.  Max was jealous - she wanted to try it out for herself!

After PT we headed down to Wilford Hall for radiation and then an appointment with an endocrinologist.  Keeghan will not have to see an endocrinologist often - probably once every 3-4 months.  But they want to track the functioning of his pituitary gland just to make sure everything stays normal.  I guess the biggest concern, due to a possibility of the radiation affecting his hypothalamus, is making sure that his pituitary is putting out a normal amount of growth hormone.  For right now though, this appointment was just to establish a baseline of where he's at.

Tomorrow is going to be an easy day - radiation only!  YAY!  So we'll definitely be hitting the pool again tomorrow afternoon!

S.

4 June 2006

Sorry no updates in a while.  The past few days have been rough.  Keeghan wakes up in great spirits.  That lasts for about four or five hours.  Then he gets very tired.  We've been having a hard time controlling his nausea.  So the past two evenings have been pretty miserable for him.  Also, he's neutropenic now, so we're limited on where we can go and what we can do.  Considering the fact that we've always been sort of the "family-on-the-go," this is causing Keeghan to be even more bummed out.

The good news is that Max finished school on Friday, so she's now around all the time.  Keeghan's spirits are always higher when the sister is around!  Of course, it will be interesting to see how it goes this week with having to take her to all of his appointments.  They tend to get a little rambunctious (and Max is truly scary when pushing a wheelchair!).

I'm starting to stress about moving.  Keeghan is half way through this first round of treatment.  We will be moving to Washington, DC soon after he finishes.  My concern is that his last week of treatment is as an inpatient again and is going to be a pretty aggressive round of chemo.  So he'll probably be neutropenic again by the time we move.  The drive will likely take at least four or five days.  I am terrified that he will start to run a fever while we're on the road and we will have to find a hospital to take him to in a strange area, with strange doctors . . . I realize I'm borrowing trouble, but it still worries me.

Today is going to be a relaxing day.  No trips anywhere.  No appointments.  Just chillin' out for Keeghan (and lots of house cleaning and laundry for the rest of us).  Hopefully he'll have a better evening tonight than the past few have been.

S.

1 June 2006

Not the greatest of days today.  I think the daily appointments are starting to take their toll on Keeghan.  He had physical therapy first thing this morning and, while he enjoyed himself there (even throwing a ball at Daddy's head a few times), he was so tired after it was over and still had to go to radiation.

He's having a hard time with the antibiotic (Septra) that he's taking as a prophylaxis.  He's never had an easy time with swallowing pills, and these things are HUGE.  We've been having to break them into four pieces in order to get them small enough for him to swallow.  The problem with that is that he takes each piece with a bite of applesauce or pudding.  By the time he swallows all four bites, he feels sick and has twice ended up vomiting the antibiotic right back up.  So we had the doctor give us a prescription for liquid Septra today.  We'll see how that goes - he has to take 20cc twice per day!  That may end up being just as hard as swallowing the pills!  Thank goodness he only has to take the antibiotic three days a week!

So, he had already started his day with vomiting the antibiotic up before even going to PT.  When we got to the clinic at Wilford Hall and talked to the doctor, Keeghan ended up getting upset and breaking down in tears.  Of course, I'm horrible at dealing with that - so I ended up in tears as well.  It was a regular old Bawl Fest!  But, he got through it all.  Not easily, but he did it.  We talked about it after he was home and settled in bed for a rest and he said, "Not everything is going to be easy Mama, but we have to be strong.  We'll make it."

Yes.  I cried again.  Go figure.

S.


31 May 2006 - again

This is a silly post, but that's where I'm at right now I guess.  I was thinking today about what Keeghan's name means - "little fierce one" - and I thought it would be fun to post that here.  Because he IS the little fierce one.

Mackenzie means "child of the wise leader."  That must mean Mike, because it SO doesn't mean me . . .

 . . . although, Shannon does mean "wise one" . . .

But Michael means "who is like God" (proof that a child's personality isn't well known when their name is chosen - ha!)  Guess we'll have to duke it out over who the wise leader is . . . personally, right now, I think the fierce one is leading us all.

S.

31 May 2006

Not a lot new today.  Keeghan's radiation treatments are going well.  Physical therapy is fun - and still silly.  The only "new" thing is that his hair is starting to fall out.  He sat in the waiting room for his radiation treatment today and kept running his fingers through his hair just to see how much came out each time!  He decided that he is shedding more than Buddy (his cat).

I don't know if I am ready for his hair to fall out though.  Running my fingers through his hair has always been one of those "mom things" that relaxes him - and me.  I guess head massages will have to take its place temporarily, eh?

S.

29 May 2006

What a great weekend with the grandparents!  Mom, Dad - thank you so much for coming up to visit!  Getting to just hang out at the pool and be a kid is exactly what BOTH Keeghan and Max needed.

Keeghan was a little nervous about whether or not he could still swim, but as you'll see from the new pictures it wasn't an issue at all!  He really enjoyed himself, and wore himself out!  These are the days we live for right now - everyone just being themselves.

The "Keeghan's Journey" page has become incredibly long.  I thought about starting a new page, but decided against it.  Mike and I talked about it and decided that everything right now is part of "the journey" and should be kept on one page so that our friends and family visiting this page get a feel for exactly what a trip it is!  So please accept my apologies for the long scroll!

S.

26 May 2006

Keeghan earned four more jingle bells tonight.  At Benihana's.

The poor baby.  He wanted Asian food tonight, and he's always wanted to go to Benihana's.  So we took him there for dinner.  He made it through the appetizers fine.  Then he got his calamari.  After one bite, he looked at me and said, "I don't feel good."  I knew from the look on his face that it wasn't going to be long before he lost it.  I looked at Mike and said, "He needs to go to the bathroom - NOW!"

He made it to the hallway leading to the bathroom, then it was all over.  The poor kid.  I explained to the chef cooking our food what was going on and he was so sweet.  He immediately asked if we wanted our food to go and cooked it up - quick.  Our waitress was the one that really got to me though.  She had seen us making a toast to two weeks of treatment being complete, so she sort of knew what was going on.  She had even gotten Keeghan a special drink to celebrate.  After he came back from the bathroom, she came and asked him if she could make him a flower.  She then made him an origami flower from a menu!  What was so touching though was that she was squatting down by his chair to make the flower and after she finished it, she handed it to him and then (very impulsively) leaned up and kissed him on the head and walked away very quickly.  Max told me later that while the waitress was making the flower, she could see that she was crying!  On the way home, Mike said that he could see her when she was off getting Keeghan's "special drink" and that she was crying then as well.  I felt bad for making the poor girl cry like that.

As is normal for Benihana's, there was another family at the table with us.  It was two women and two small children.  As it turns out, one of the women was a minister.  She asked what Keeghan's name was and if we would mind if they added him to the prayer list at their church.  Of course my answer was, "Not at all!"  So luckily it all turned out well and no one was upset.  Other than Max.  She was angry.  Not at Keeghan though - she was angry that he is having to go through all of this.  I'm with her on that one.

Keeghan is now settled on the couch downstairs watching television and is feeling fine.  He had actually been having a really good day.  He's been in a great mood all day, even being his normal snarky self with Daddy talking about how he was going to "beat him up" this evening.  Mike says he doesn't think this evening's puking episode had anything to do with chemo at all.  Apparently Keeghan told him in the bathroom that it was the texture of the calamari that got to him!  Funny, eh?

I won't gross anyone out any further!  Suffice it to say that a few more angels got their wings tonight!

S.

25 May 2006

WOW!!!!!  Over 1000 hits on this site in the past three weeks!  UNBELIEVABLE!

First off, let me say thank you to all of Richard, Lois, Lynda, Donna and Heather's friends and co-workers.  Knowing that all of you are out there taking time from your busy days to look at this site is wonderful.  Not just to Keeghan either - I can't tell you how much it does for Mike and I to read your comments and know that you're all rooting for Keeghan.  We have been so touched by the outpouring of prayers and support from you all (or "y'all" as Lynda would put it).  Sorry Lynda, I just couldn't resist that one!

I also want to thank all of our extended military family for visiting the site and signing in.  One of the best things about being a military family is the network of wonderful people you meet along the way.

Most importantly, to the family - seeing your posts always brings such a smile to Keeghan's face (and mine as well).  I love you all.  It's absolutely horrible to have to go through something like this - I can't even put into words the feeling of watching your child go through it.  But I couldn't ask for a better family to go through it with.  Knowing you're all out there for us makes the weight of it all a little less scary.

Things with Keeghan are going well.  His daily nausea has become less of an "all day long" thing, which is wonderful.  The poor little guy needed a break.  Unfortunately it seems like his headaches are getting more frequent - something we'll be talking to his doctors about tomorrow.  He had his first physical therapy appointment today, which went exactly as I thought it would.  The therapist made him do a bunch of "silly" things (in Keeghan's mind) in order to determine where his biggest weaknesses are.  Every time she asked Keeghan to do something, i.e., play catch with a ball, walk on a balance beam, or balance on one leg for as long as he could, he would just look at me like, "Is this really helping me?"  It was funny the way he kept rolling his eyes and grinning.  But he was still the compliant patient that he always is and played along!

His left leg has improved so much, the therapist said that his strength is only slightly less than the right leg.  To my untrained eye, the problem isn't so much in a lack of strength in his leg as it is in a lack of being able to control it.  He can balance on his right leg up to a count of 15, but only up to a count of 5 on his left leg.  When he walks he swings his right arm freely, but holds his left arm very stiff.  I think holding his arm like that sort of throws his gait off.  He doesn't use his left arm for much of anything if he can help it.  But he CAN use it.  I think he's just gotten lazy, not trusting it to do what he wants it to and therefore using his right arm for everything.  Hopefully the physical therapy will help fix that.

Nothing else new - it's been a nice, boring couple of days.  Tomorrow is the first outpatient chemo appointment.  I know Keeghan is nervous about it, but he'll have both Mom and Dad with him.  I'm sure he'll be less anxious once he's been through it.

I hope everyone has a fun holiday weekend.  Our kids are excited to see the grandparents (Max for monetary reasons, right Grandad??).  Hopefully the kids will hang out at the hotel with Gramma and Grandad long enough that I can maybe get my house clean!  Wish me luck!

S.

23 May 2006

Nothing new today - but we did get more pictures posted of Keeghan with his doctor, as well as some pics from the "laser room."  You can now see the infamous "scale face."

Also - keep a lookout for a certain brave dog that went through surgery with Keeghan!

S.

22 May 2006

Another day.  Another radiation treatment.  Another BEAD!

It's been a good day.  Keeghan was in good spirits.  It was a good feeling for him to go to the hospital for his radiation treatment but then get to go home afterward instead of just going back up to the ward.

We decided yesterday that the Bravery Beads program needs to add a new bead - for puking!  It just seems like there should be SOME kind of bead acknowledging that, you know?  Especially for a kid who has never really been much of a puker (unlike Max, who was practically a fountain as a baby).  So Max and I went to the store last night and picked out a few different kinds of beads to let Keeghan choose from.  But just for fun, we also bought a bag full of little jingle bells.  We figured that throwing up is nasty business, so there should be some kind of happy bead to commemorate it.  Sure enough, Keeghan agreed (do we know our boy or what?).  So he now has three jingle bells on his strand of beads.

He and I were talking about the bells in the car today, making jokes about the old saying that every time a bell rings, an angel gets its wings.  So now whenever he pukes, we can say, "Keeghan's busy giving an angel its wings."  Or we can just say he's "ringing bells."  We even started humming Christmas carols.  It was pretty funny - and a little disturbing.

Jingle bells, jingle bells, jingle AAAAAWWWWWWLLLLLL (insert the sound of puking here) the way!

Yes, we're strange.  Sorry.  But it was some fun times laughing in the car with my boy!

Mike and I were talking a few minutes ago about how Keeghan's personality has changed some.  He's much more somber.  He still has his sense of humor.  He still quotes Dane Cook (his absolute favorite comedian) every chance he gets.  But in general he's more serious.  I have to think that this is normal though.  He's been through so much in just a few short weeks.  And the chemo and radiation are still really new.  I know he's nervous about the first time he has to go into the clinic for a chemo treatment and having to have a needle stuck in his port.  I think until he has been through all of these things at least once, he'll continue to be a bit anxious.  He's still sore from the surgery to have the port inserted, so he's very guarded in his movements.  I'm also thinking that the fact that he's headed toward being neutropenic may have something to do with his seeming more subdued than normal (I'm sure all you doctor types out there can give me some feedback on that).

The bottom line also is that the kid has cancer.  He's ten-years-old and is having to wrap his mind around THAT.  I'd be pretty somber too.

He's still Keeghan though.  I was laying on his bed today talking with him and I made a comment that I needed to go fold some laundry.  He said, "No you don't.  You need to stay here and have fun with me."  I agreed that I DID, in fact, "need" to stay and have fun with him.  He then said, "Just tell Daddy that we need a maid to do the laundry."  Typical Keeghan - Daddy can solve all problems just that easily!

He's tired and going to bed now.  He's so peaceful and beautiful when he sleeps.  I only hope that all of his daytime worries go away and he forgets all about all of this while he's sleeping.  He deserves to get at least some peace of mind, even if it's only at night.

S.

22 May 2006

Post from Keeghan:

I'm doing ok and I'd like everyone to know that I've got a four-week break at home from the hospital.  Radiation gives me a headache, but only for 30 minutes (or something like that).  The radiation table turns and spins and stuff.  There are lasers shooting around the room.  They're just like the lasers that scan stuff at the HEB (grocery store).  The most noise I hear though is when the table moves and makes a "jshjshjshjsh'ing" noise.

Chemo makes my stomach hurt.

Thank you to everyone who has signed the Guestbook.  It makes me feel better to have people signing and thinking about me.  Aunt Lynda signs it every day - that's funny.  It's pretty cool too.

Cancer sucks!  But I can beat it.

By the way Grandad - when do I get to make bets with you?

I'm going to go get songs for my iPod now.

Keeghan

21 May 2006

We're home!  Keeghan was discharged first thing this morning, so he's now settled in and watching a movie with Max on his bed.  The poor kid looks like he's been through hell, but hey - he has, right?  But his spirits are still high.  He truly is amazing!

I have to tell everyone about this cool program that Keeghan was introduced to while in the hospital this week.  It's called Bravery Hearts.  It is a program for kids being treated for cancer.  They put together a string of beads that can be displayed any way the child wishes, i.e., hung on a wall, worn as a necklace, etc.  There are different types of beads representing each different type of treatment the child may go through.  So for every surgery, IV stick, test or scan, radiation treatment, transfusion, etc. Keeghan gets a new bead.  One of the other patients on the ward this week was a 16-year-old girl that has been going through chemotherapy since last October.  She walked Keeghan down to the Hematology/Oncology Clinic to get him started with his own collection of beads.

By the time we counted up how many MRI's, CT's, surgeries, IV's, ambulance rides, admissions - the list goes on! - that Keeghan had already been through and got a bead for each one, he started off with 56 beads!  As of discharge this morning he had 64.  We almost have each type of bead memorized so that we can go down the line and tell people what they all represent.  It's like Keeghan's "Badge of Courage"!

Chemo is finally starting to show some side effects.  The past two mornings have started with vomiting, but not a lot and it doesn't last long.  It still stinks for him though.  But considering the amount of chemo he has been through this week, he's still doing amazingly well.

A special thanks goes out to my friend Connie, a.k.a. The Rock Fairy, for sending Keeghan a box full of cool rocks!  They arrived yesterday so Mike brought them to the hospital.  For those of you who don't know, Keeghan LOVES rocks.  All kinds, colors, and sizes.  So he was absolutely thrilled to see them all and to show them off to everyone that walked in the room!

I need a nap now.  The hospital had a planned power outage that started at 7:00pm last night and was still going on this morning.  All essential items were running on generator power, but one of the things that WASN'T running was the air conditioning.  Hello?  Do these people not know that this is south Texas??  Needless to say, it wasn't a good sleep night!  So I'm going to go snooze on the couch for a bit.  Love to you all!

Shannon

18 May 2006

I'm home again!  My double-shift wasn't so bad (of course, it wouldn't be as I was hanging out with my little man)!  Keeghan has now had three radiation treatments and three rounds of chemo.  He says that he has a headache for about 30 minutes after the radiation and that his scalp is a little itchy.  Dr. Gardner, his radiation oncologist, says that many patients have different "reactions" to radiation and that having a slight headache is not uncommon.  So far regular children's Tylenol has worked to treat it, so we're happy with that.

And just so everyone knows, I have a picture of "scale face" now but I can't post it here yet (I forgot and left the laptop at the hospital and it has the camera software on it).  I'll get it posted this weekend though.  I also have an adorable picture of Mike and Keeghan and a couple of the kids giving each other a goodbye hug today, so I'll post those too.

The chemo side effects haven't changed.  Seriously - his worst "side-effect" so far has been sleeping through the whole second medicine!  He's getting Zofran for nausea every 8 hours, whether he's nauseous or not, so maybe that's what is making this all seem so easy . . . so far.  I keep waiting for the nightmare to start though.  We usually sit and watch a movie through the cis-platinum dose, and then they give him 50 mg of Benadryl, which knocks him out so that he sleeps through the two-hour etoposide dose.  He wakes up about 30-45 minutes after the chemo is finished and is fine.  It's been so weird!  The doctors keep telling me just to be ready when it gets bad, because it will.  Of course, maybe they need to talk to Grandad Barry about "The Keeghan Factor."  The kid has not been TYPICAL in any way yet.

One little concern of mine (because this is all new and I don't know what a lot of it means yet) is that Keeghan may have to have a blood transfusion tomorrow.  I really need to get the lingo down, but Dr. Harford said today that something in his last blood count was at 9.9 and they don't like for it to drop below 10.  Because it was so close they didn't do a transfusion today, but if it is even lower tomorrow they will.  I know they told us to expect him to need transfusions, but I didn't expect it this soon.  I don't know if that is bad, good, or just normal?

Starting tomorrow morning I'll be on double shift again.  This time is mostly by choice though.  The only thing left on the honey-do list for Mike is taking the monster cat B.B. to get his shots tomorrow.  But Keeghan likes having me there, and Mike SO does not sleep well in hospitals.  He wakes up over every little sound.  I, on the other hand, sleep just fine at the hospital.  I wake up when they come in to take Keeghan's vitals, but go right back to sleep once they leave (much like Keeghan does).  My only real issue with spending the night is the doctors that come in at 6:30am when we're both sound asleep and want to talk to me!  First of all, I'm not completely awake yet and have had no coffee, so I'm not responsible for what I might say.  Secondly, I don't want to face them when I'm talking because I KNOW my breath is lethal.  It's awkward.  Someone needs to do something about that whole early-morning-waking-parents-up thing!

I apologize for not having new pics yet, but I promise I will have soon!  So please keep coming back.  We love the comments that we're receiving!

Shannon

16 May 2006

First day of radiation and chemo, and no big problems!  YAY!  Keeghan is a funny little guy though.  He thinks the radiation part is fun, mainly because he likes the mask that they made for him to wear during it and the fact that for an hour afterward he has waffle marks all over his face!  He thinks it makes him look like he has scales!

The chemo, for the most part, was uneventful.  They pre-dose him with medications to counteract the side effects of the chemo, and so far they seem to be working.  The first med given was cis-platinum, and he sat up in bed and talked to me through the whole thing.  After that they gave him a dose of Benadryl, which knocked him OUT.  So he snored (literally!) through the second med (etoposide).  The only slight concern was that he ran a low-grade fever during the etoposide.  But when I left him with Daddy this evening, he was a little tired but in good spirits.  I'm sure it will get worse, but I'm so glad that this first day wasn't a nightmare for him.

It may be a few days before I get to update again as I'm pulling a double-shift at the hospital starting tomorrow morning as Mike has a ton of things that need to be done in the house before Keeghan comes home (and before anyone asks, I'll just say now that yes, I made him a honey-do list!).  Cats need to get to the vet for shots and check-ups, carpets have to be cleaned, and some heavy lifting needs to be done that I can't handle.  I guess it's just what he gets for being the big, strong man of the house (I'm SO going to hear it about that comment)!

S.

15 May 2006

Keeghan is back to being an inpatient, but this time at Wilford Hall Medical Center here in San Antonio.  He had surgery first thing this morning to have his port put in.  He was very anxious about it, but came through surgery like the true trooper that he is.  The rest of the day was pretty relaxed if you don't count every doctor and their dog coming in to perform neuro checks on him!

Tomorrow is the first day of chemo and radiation.  Personally, I am terrified.  I admit it.  I know that this is going to really be  hard for him and, as a mother, it tears me up.  But we're ready to support him in every way possible and help keep his spirits up.  Fantastic Four all the way!

Thank you to everyone that has signed the guestbook here.  I know that Keeghan will be thrilled to see that so many people - many that he's never met - are out there praying for him.  I plan to print it out tomorrow to take to the hospital for him to see.

On a funny note, Keeghan is actually excited to meet some of the other oncology patients on the ward so that he can ask them questions about chemo.  It's amazing that he can see this as an opportunity to make new friends!

For this week Mike will be pulling night shift at the hospital and I will be covering days.  This gives him time with both of us as well as giving Max time with the parental units also.  Thankfully he is only an inpatient for a few days though - I need both of my babies home with me!

More updates later in the week!

Shannon

13 May 2006

I've added more pictures to Keeghan's page as well as to Max's.  Thank you to everyone that has visited this website and is following Keeghan's progress.  Please sign the guestbook to let us know you were here - it does wonders for Keeghan's morale to know how many people are supporting him!

We made another trip to MD Anderson yesterday for Keeghan to see Dr. Weinberg and to get his stitches out.  We were so happy to get to see some of the nurses that helped care for Keeghan while he was in the hospital.  I think they were all quite impressed to see him walk onto the ward without any assistance.

Of course, the trip would not have been complete without getting to see the president of his fan club, Dr. King!  We forgot to get a picture with her though, so we'll just have to go back again!

Keeghan goes into the hospital tomorrow evening for his first week of chemotherapy and radiation.  It's going to be a rough week, but his spirits are high and his determination even higher.  We're looking forward to NEXT Saturday when he gets out of the hospital and doesn't have to go back as an inpatient for four weeks!  I'm sure we'll have plenty more pictures to add by then as well, so please come back!

Shannon

9 May 2006

Once again, it's been ages since I last updated this page.  As many of you know, the past few weeks have not been the best.  Keeghan was diagnosed with a malignant brain tumor on April 20th and then had back-to-back surgeries on April 25th and April 28th.  He will start chemotherapy and radiation on Monday, May 15th.  Our hopes are high for a full recovery.  Of course, we're his parents, so we refuse to accept anything less as an option.

I'm posting quite a few pictures from the two weeks that we spent at MD Anderson Cancer Center in Houston.  Many of them are heart-wrenching, but it was important to Keeghan to record a history of this whole experience.

Mike's orders to move to Bolling AFB, DC have been postponed for the moment.  It looks like we will be moving sometime in July, between when Keeghan finishes his first six-week round of treatment and when he starts his year-long chemotherapy regimen.

Please feel free to contact us anytime.  My new email address is ceili@skeleigh.com.  We love hearing from everyone.

Shannon