We have had a change of plans. We discussed the transplant with the doctor and he does not see the need to wait any longer. Aaron has had 3 strep infections in the last 3 months. We don't know how this is happening since we all stay pretty isolated. As part of his condition, he can get infections easily and the infections are harder for him to get rid of. They can also break down his body in ways that do not happen to people with normal immune systems.
We decided to go ahead with the transplant. Waiting any longer is not benefiting Aaron. We have located 2 very good 7/8 live donor matches. I was hesitant because I wanted a full match. However, the doctor says they do not see much difference in survival in 7/8 vs 8/8 matches. Waiting another year is not likely to yield a better donor. The doctor is very confident with the donor he chose. We picked the best hospital in the U.S. for his transplant and I have to believe they know what they are doing :)
We will drive to Cincinnati to be there October 3rd. There is 2-3 weeks of pretransplant studies that will be done (CT scans, Echo, Ekg, labs, etc...). As these are a little traumatic for children, they like to spread them out over a period of time. On October 25th, Aaron will be admitted to the bone marrow unit and chemo will begin on the 28th. A 10 day course of chemotherapy should wipe out Aaron's own immune system entirely. On November 7th he will receive his new bone marrow. Following the transplant, Aaron will be watched closely for at least 100 days to monitor for complications and progress.
We are ready. We have had a year to come to terms with this and we are ready.