Day -2

 

Fred stayed in bed for most of today.  He's not feeling great. He says that he's tired and that his stomach feels "upside down." But he's hanging in there, and he got everything on his job list checked off.  He even had some FaceTime visitors early this afternoon.

Today was the last of chemotherapy, and in my mind it's a big big milestone.  Up to now the goal of his medical care has been to sustain him by giving him blood to last until he needs more. (We sometimes call it "filling up his tank.")   When we realized that a transplant was Fred's only option, it was at a time when (ironically enough) transplant was not an option. So, for the last year and a half, we added to his medical care the goal of undoing the damage so many transfusions had done. The goal this week has been those two things, plus knocking out his immune system. Essentially, we've taken a boy who learned how to swim just three weeks ago, and we stuck him in isolation and made him sick. (click to read more.)

But as far as I'm concerned this is the biggest milestone we've ever reached (medical or otherwise) because now we are at the point, finally and for the first time, where healing begins. I know the risks of transplant, and I would be lying if I said I didn't think about that. At the same time something deep inside insists that it is okay to hope for the best.