13 years (Day +4749) . . .
Thirteen years ago we sat in a crowded hospital room and watched as a small bag of stem cells went into Jack’s central line. We were hopeful, but terrified.
Our doctors had not promised that the transplant would work and they were painfully honest about the risks involved with the procedure. They reminded us again and again, that in the case of ALD, a transplant was not a cure. Instead (if successful) it would stop the progression of the disease — the idea of these new disabilities being permanent seemed surreal. I had also done enough Googling in the four weeks since Jack’s diagnosis to know that a transplant was often followed with complications like infections or Graft vs Host Disease and sometimes with ALD, it accelerated the loss of the myelin.
We found little comfort in any of the information we’d been given, but we had no other option to save our son, so there we were — watching the cells as they entered Jack’s body.
29 minutes. Drip, drip, drip.
Dan made a set-list of our favorite music and we tried to keep our fears at bay. We made small talk with the doctors and nurses and told jokes. Jack was only 8-years-old and we promised him he would feel better soon and focused on the bonus of having a second birthday to celebrate every year.
Our family has been through a lot over the last thirteen years — both good and bad, but we’ve also had a lot of parties for Jack since we watched those cells enter his small body. One gift from ALD is that it has made our family learn to really appreciate the good days.
Today is a good day. We are healthy and the sun has promised to come out so that we can sit outside and jump in the pool. There will not be any food trucks or crowds of people, but we will still enjoy every minute of this day – and every day – with our boy.
Happy Birthday Sweet JackO!!!
Stay Tuned for Friday – Jack receives his High School diploma. Big week for the Torreys!
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