It has been quiet and mundane. Many of you have been asking if we have heard any good news re: the bone marrow match. We have had several drives already and more are scheduled, but from what I understand after one registers to become a donor with all the processing time, it takes about 6-8 weeks before we’ll know anything. Also, if Timothy finds a match, we will not know the identity of the donor until a year after transplant. It’s the policy. One year post-transplant pretty much confirms being cured and being free from any dangers of infections and complications. But so far, no news. I do get anxious time to time, but because we are entrenched in our day to day lives I don’t have the luxury to dwell on the unknown. It’s a good thing.
I have also been inquiring other reputable hospitals/research institutes for consults. We are still unsure about where we would have the transplant. As of now, it’s here in L.A., but we are thinking about Children’s Hospital of Texas in Houston. They have done the most CGD transplants at 14. And all have been successful. The only thing about doing it in Houston is, we’d have to relocate for about a year… It’s a huge decision and we need a lot of prayers. But again, all this decision making is moot unless Timothy finds a donor. It would be wonderful if he were to find a match and be cured. I get teary-eyed just thinking about it. Again, I remind myself this is in God’s plan and control. How would I even get through this without this hope in God? Impossible.
Early August, we sent Timothy’s blood to NIH for further testing. According to the chief Infectious Disease doctor, Timothy’s case is ‘interesting’ and his mutation is ‘a bit funny’. If I didn’t mention it before, Timothy’s mutation is novel. The results take about 6-8 weeks. I have heard they freeze his cells and multiply them to do many tests. Some for prognosis and some for research. I am eager to find out the results.
Lastly, I found out last month I am a carrier of CGD. It was a big surprise to me. Our family has no known history of CGD, so I thought Timothy’s case was a spontaneous mutation. Well, it turns out, I gave it to him. I am not sure how I feel about this. Claire also needs to be tested to see if she is a carrier. This knowledge impacts many future plans and decisions for all of us.
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