On Friday, I received a letter from NMDP (National Marrow Donor Program) stating the search has begun for Timothy’s BMT (Bone Marrow Transplant). Today, I confirmed with CHLA (Children’s Hospital Los Angeles). Our insurance has FINALLY approved the search, the work up and the transplant procedure. The whole deal! After stalling and giving us the run around for 7 months, with two simple words “legal action”, the insurance company decided to approve it. The search is on. I also spoke with our BMT coordinator and she informed me that there are some possible matches. Since the registry’s database does not have the complete HLA typing, they requested more blood work from the possible donors. But she also mentioned that Timothy’s particular HLA type is not a very common one and she didn’t think he would find a 10/10 match. I felt another surge of anxiety today.
We are also in the process of getting a third consult on Timothy’s condition and BMT option. Dr. Steve Holland (with NIH) is THE guy for CGD in the nation. We are in contact with him.
Please pray for us. We need His guidance and peace. BMT is a huge procedure with many risks. We want to be at peace knowing this is His will for Timothy. And also for the 3rd consult… we need a confirmation either way for the BMT. And lastly for a 10/10 match and nothing less.