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