|Mr. Big Boy on the plane. He did great on|
on the flights!
27 months after diagnosis. 24 months, almost to the day, after his first transplant. We think we've finally reached a point where we can comfortably say that this transplant was a success and that Ethan will survive.
Earlier in the week, we had received really encouraging engraftment numbers. Ethan's CD15 marker, the genetic marker that controls the production of the alpha-L-iduronidase, is 100% donor. Ethan's CD3 marker, which suggests the likelihood that his body might start attacking or rejecting the graft, was 82%--up from 30% at the end of August. (And the doctors say that it will likely come up some more.)
The hard truth is the transplant is a treatment for Hurler's, it's not a cure. We don't know how long Ethan will live. From what we've seen of older transplant kids and Ethan's individual risk factors, I'd say he's got a very good shot of making it into his twenties. There's are a few promising research projects that could help him make it into his thirties or even forties.
Between now and then, whenever "then" might be, we will try to fill each day with fun, laughter and love. Now that he's through transplant, we need to shift our focus some and work to balance his ongoing medical needs and interventions with helping improve his quality of life.
Our journey and Ethan's fight with MPS is far from over. During our time in Minnesota, we received some good news about his hips and legs, some difficult news about his neurological development, and have already scheduled his next surgery (carpal tunnel release in April). But there will be time enough to talk about those in a future post later this week.
For now, it's enough just to breathe a sigh of relief.