I’ve known most of my life that I might have to have a bone marrow transplant at some point because of Fanconi Anemia. This became very real when my brother, Barry (see picture on left), went into complete bone marrow failure at the age of 19. I was 12 years old at the time and I remember talk of a transplant for him. All of my family was checked to see if we could find a related match. But, the only perfect related match for Barry was me. So of course I was not a suitable donor because I also had FA. Unrelated bone marrow transplants had a very low success rate 23 years ago. So, there was nothing that could be done for Barry and he died in June of 1988.
About two years ago, Matt and I felt that we needed to be proactive with my health because risks increase with age when you have FA. So, in May of 2009, Matt and I made an appointment at Memorial Sloan-Kettering in NYC to meet with Dr. Farid Boulad, a FA specialist and bone marrow transplant doctor (see picture on right). At that point, everything looked great. Dr. Boulad went ahead and entered me into the bone marrow registry just in case something happened in the future. I know God prompted us to do this because he knew exactly what would happen a year and a half later. He wanted us to be prepared!
If you would like to know more information about becoming a bone marrow donor, please go to www.bethematch.org. You could be the one that gives someone else the gift that keeps on giving!
I was diagnosed with MDS (Myelodysplastic Syndrome) on November 16th, 2010 and the search for a donor began. Dr. Boulad wanted the transplant to take place in 3-5 weeks because the MDS was probably going to slip into AML (Acute Myeloid Leukemia), which it did within weeks. I was very blessed to have some 10/10 perfect matches in the registry. It looked like the transplant was going to take place right around Christmas. My first thought was, “Who is going to spend their Christmas vacation at a hospital donating marrow?” But, a few weeks later, Dr. Boulad called and said they had found a 10/10 match. Someone had said, “yes!” The only thing I could know was that it was a young female donor. For the first year after the transplant, the identity of the donor and recipient is kept anonymous.
So you can imagine my surprise when about two weeks after my transplant, a young woman walked into my hospital room and said, “Here is a note from your donor.” I almost burst into tears. I was completely shocked to get a note and so soon. I asked if this was common and she said, “no.” The note had to be very generic and not reveal anything personal about the donor. Here is what the note said:
“I hope that you have a speedy recovery. I’m really glad I was able to donate stem cells to you. When I first signed up to be on the registry I was told that the chances I would be called to donate were slim, so when I got the call I was really excited to be able to help you.
Thinking of you,
Your Donor :)
I wrote a note to my donor today and expressed to her my gratitude for her sacrifice. I told her that I had just adopted two boys from Ethiopia in April and that her gift is going to give me the opportunity to raise my boys! I told her that we would have to meet someday so I could thank her in person. I want to throw her a big party! I cannot wait to hear her side of the story and know what made her decide to donate.
My donor gave marrow on December 27th, just two days after Christmas, and I had the transplant on December 29th. I’ve received some great Christmas gifts throughout the years, but this Christmas I received the gift that keeps on giving.
There is a great need for people to join the National Bone Marrow Registry. Thousands of patients with leukemia and other life-threatening diseases depend on the registry to find a match to save their life. Patients need donors who are a genetic match. Even with a registry of millions, many patients cannot find a match. Donors with diverse racial or ethnic backgrounds are especially needed.
