Before leaving for Houston, we had 2 decisions to make. Do we go through with the transplant with the current potential 9/10 donor? And if we do, which center do we get this done? After visiting Texas Children’s Hospital (TCH) and consulting with CHLA, we are convinced that we need to proceed with the transplant. Though the match is imperfect, 9/10 is good enough. Our concern was that the mismatch would be a major one instead of a minor one. And indeed it is a major mismatch. But clinically, though Timothy appears to be healthy, has had too many infections and symptoms already. He was diagnosed at 2 months, which is really early. He has been hospitalized 4 times and he is not even 2 years old. And one of the main concerns TCH doctors have for Timothy is his bowel inflammation issues. They say kids with this particular issue tend to have a difficult time with the transplant. And statistically, to wait for a better match, perhaps 10/10, is very slim. (By the way, the search is still being done daily to see if there’s a better match.) TCH has done major mismatch transplants for CGD patients with great success.
Now the question is where? We have consulted with two centers so far: CHLA and TCH. I have spoken to the BMT doctor in UCSF and am waiting for responses at UCLA and Stanford. I will also be looking into Seattle as well. All these places were recommendations from either CGD families or a CGD expert. Texas is a huge potential… but it’s out of state. When we think of the logistics, it gets pretty tough. To go through a BMT is a long process. We would have to be near the transplant center for at least 4-6 months. There’s so much to consider… finances, family and friends support, and church support. I know it’s going to be a difficult and long journey. And I worry about Claire, how she’s going to handle all of this. We need to make a decision soon.
I am thankful for God’s leading and guidance thus far. But I do dread the BMT future.