Dear Friends and Family,
After my most recent letter, many of you have inquired about becoming a bone marrow (stem cell) donor. So this letter is specifically for you, though Nancy and I have no expectations of our friends. For everyone else, feel free to skip the details.
Here is what I have surmised from the growing pile of materials we’ve received.
Be The Match®, operated by the National Marrow Donor Program, is the largest and most diverse bone marrow registry in the world. It is a nonprofit organization dedicated to helping every patient get the life-saving transplant they need.
Joining the Be The Match Registry is easy. Just log on to their website at BeTheMatch.org, where you will find all the pertinent information about becoming a registered potential donor. You can even click “Join” to join the registry immediately by providing your birthdate and general medical information. When they ask for a promotion code, if you type in “Nancy” we will be notified that you have become a donor. A kit will be mailed to you that contains a couple of swabs to obtain cells from the inside of your cheeks to send back to the registry. From those cells, the donor’s specific immunogenic profile, called HLA typing, becomes part of a national database that can be accessed for patients needing a transplant. Donors between eighteen and forty-four are preferred and no financial contribution is required. Donors between forty-five and sixty can join, but a financial contribution of $100 is requested to offset the cost of the testing.
There are currently over twenty-five million people already registered in the program, and a Caucasian has a high likelihood of finding a match from the current bank of traditional HLA immunologic screening samples.
When a donor’s blood is tested and found to have the same HLA fingerprints, it is called a match.
When a transplant doctor requests typing for his patient, it usually takes only one day to check the central computer for potential matches, and when they are found, the names are then sent back to the requesting doctor and transplant center.
The doctor next asks the registry to contact the potential donors to see if they are still available and willing and to do further, more specific testing.
New antigens are discovered each year, and further testing refines an unmatched donor’s sample to see if it is even more closely similar to the recipient’s.
Additionally, a donor is screened for infectious diseases that could prevent a successful transplant—for example, HIV, cytomegalovirus, or one of the hepatitis viruses.
What is the chance you would be a match with Nancy?
It is rare that a non-sibling donor match has been discovered by having a friend’s cells tested. One of those times was in a tribal setting from a close ethnic group and therefore a higher probability.
So in reality, it is highly unlikely.
It is a testimony to your kindness and caring to realize that (any of) you have considered this process. And we are most appreciative.
If you follow this procedure, you might help someone like Nancy in the future. Also, more immediate help for Nancy and others with similar problems will occur with a blood or platelet donation that can be done in Nancy’s name. Patients like Nancy require multiple platelet and blood transfusion during the periods they are receiving strong chemotherapy.
But again, we have no expectations.
And we thank you from the bottom of our hearts just for asking.
Summary: Since so many of you have inquired about how to be a bone marrow donor, I’ve summarized how you might be able to help Nancy or someone like her.
With much love,
Winnie