Monday, July 9, 2012

Leukemia and our boy.

If you are a friend or relative, you know that our son has leukemia.  Jack is 6 years old and was diagnosed with ALL (acute lymphoblastic leukemia) the day after Thanksgiving.  "Black Friday" has a whole new meaning to us now.  Jack also has Down syndrome, and children with DS are at a greater risk (20% more) than typical kids.  Still, a longshot.  Guess he should play the lottery.

Anyhow, about the first month of treatment was inpatient at Children's Hospital in Boston.  The following 2 years is outpatient treatments.  That's right, no mis-typing here:  2 years.  At this point in the protocol to treat ALL, we go into the Jimmy Fund Clinic at the Dana Farber Cancer Institute in Boston once a week.  Soon, we'll only need to travel in once every three weeks for the duration of his treatment.  But Jack continuously gets medicine at home and chemotherapy at home too.  And I have the pleasure of giving him his chemotherapy through his port on Saturday mornings.  I never thought I would be loading my little boy with a neon yellow liquid through a syringe, attached to a port under his skin, that feeds into a major vein. But hey, you deal with what lift throws at you.

He's such a trooper.  I mean a genuine hero.  He goes through all of this with a smile pasted on his face.  As I'm writing this today, he is back in the hospital due to a fever.  But he keeps his smile.  And because of that smile, and all he has gone through, he's changed hundreds, if not thousands of lives.  Amazing things have happened to our family:  so many cards and letters that a 55 gallon container can't keep it's top on; friends organizing a Run For Jack 5k; blood drive in Jack's honor, numerous fundraising events; a song written just for Jack; features in multiple newspapers; people we don't know reaching out to us from around the world. As I sit here, I know I'm missing more, as it's all been so overwhelming.  Wonderfully overwhelming. This little boy has made a difference, and isn't that what it's all about?

Here's a little photo collage from his first 7 months of treatment:

Being silly
Loads of mail



More silliness
And more mail  :)
Surrounded by the Red Sox
Loving his little black car
Celebrating his 6th birthday in the hospital
His sister's love
Coming home after our first month's stay
More adventures through the hospital
The dreaded mouth sores
The banner at the blood drive.  And a peek of the beautiful painting made by a friend.
I can play doctor too
Downing the chips after a lumbar puncture
More hospital explorations
Always happy
In the ER, waiting to be admitted, again
Loving on Daddy
Tired, and will fall asleep where it's warm
Even on the floor
Enjoying a little break from our clinic visit
Fooling around with sister
Loving his reflection in the ambulance windows
Still happy  :)
 
Debbie

6 comments:

  1. God bless your family Debbie, yo are very brave for them. Prays to you all, Lori

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  2. I found your blog from the feature of your back to school paper organizer, at first I was going to leave a comment there because I thought it was the cutest and to tell you what a wonderful idea and job you did making it! I ended up getting lost in your blog and your wonderful story of your beautiful family. I bet his smiles light up a room. I know they made me smile when I got to this page.
    xoxo
    Jeri

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    Replies
    1. Oh Jeri, you are the sweetest. So new to blogging, yet it's so therapeutic. Wish I had more time to write. :)

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  3. Life can be so cruel to someone, but that someone can welcome all those "slaps" with a smile, like your child. By reading your posts I was filled with happiness and tears at the same time - so full of emotions and inspiration. Cause that`s what good blogs are about!
    Thank you for leaving a nice comment on my blog.

    Your newest follower,
    Aleksandra

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  4. Debbie, He is so precious and I hate that he is going through this. That said he looks like he is taking it in stride and teaching others along the way to keep plugging along with a smile on your face. DS children are the most loving and sweet children you will ever meet, it's like that extra chromosome has all the sweetness and love that God could fit it. He is special and so are you and your husband. God blessed you with this loving boy knowing you would be able to allow him to flourish as much as possible. Yes, I am sure there are days, but isn't that the case in anything? God Bless you as you walk this path God has chosen for you knowing you are the exact right person to do it.

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