Nine Out of Ten

It is confirmed.  9/10 match.  Not perfect, but may be good enough.  I am trusting God this is His leading and guidance.  We need to meet with the BMT department.  I have a LOT of questions and concerns that I want to ask and bring up.  This also means, we are going to try to fly out to Children’s Hospital of Texas to get a 2nd consult on the transplant.  It’s unbelievable, at the same time what it’s suppose to be.  My mind is racing with things I need to do, people I need to email, logistics of possibly relocating to the fears of transplant risks. 

Thank you for your prayers.  I have been encouraged beyond words from people close and far, even from people I have never met.  THANK YOU.  Your prayers have been my strength when doubts cloud over me.  Please continue to do so as we make many life-changing decisions for our family.

Please continue to spread the word about bone marrow registry.  This prospect of hope can be given to another family…

Lastly, would you lift up a prayer for Timothy’s health today?  He had a fever today.  He hasn’t had a fever in a long time, since April.  I am hoping it’s just viral and will go away soon.  He was pretty cranky today :(.  Anytime he has a fever, it’s nerve-wracking for Daniel and myself. 

A Quick Update…

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.