After a year of waiting, the Bone Marrow Foundation allows bone marrow recipients and donors to know each other if both parties agree. I think a year is a good time frame as the transplant has at least a year long recovery and I am guessing that a little space to consider whether to communicate is a healthy thing.
Treatment of Sue's form of Leukemia depends on a donation from another person (some other diseases use self/autologous transplants). None of Sue's three brothers were a full match (each had a 25% chance). So Sue depended on someone out in the public walking around healthy with a closer blood genetic match than her brothers. Out of the millions of people registered for bone marrow donations (but most people have not made themselves available to be found), there were around fifteen potentials.
But Hopkins only recommends marrow donation (as opposed to peripheral stem cell donations which are based on harvesting the stem cells from the blood of the donor). Although there are ongoing studies to compare the success of each, Hopkins had reason to believe the advantages of the marrow donation outweighed the negatives (for example, lower level of GVHD-the foreign immune/blood system attacking the recipient versus a couple days longer before the new blood system starts working). Unfortunately this difference kept some of the potentials from donating.
But there was one.
We knew it was a man on the east coast of the US. I scanned the flight schedules guessing which city it might have been as we knew when the donation was to arrive at the local airport. Until the marrow arrives in the room and given to the patient there is a bit of anxiety as the patient's old blood system has been destroyed by chemo and only a donation in a small window can well.... you get the idea.
Little did we know that the donor was being asked even to the last minute whether he continued to consent (I knew that a donor could pull out at any point, but I figured once the person gave consent that the doctors would stop asking). Although the donation procedure is not very dangerous compared to many others and outside of scars the body recovers quickly (the body rebuilds the marrow, unlike a kidney donation). But it is uncomfortable and I did not know that there was a tremendous amount of paperwork and it seems very little assistance to the donor.
It is sad that most potential donors have to pay to be part of the national bone marrow registry in this country. Donors are saving lives and should not be allowed to have to be inconvenienced beyond the actual donation by paying or losing time from paid work.
So who are these heroes that step up to save lives of unknown recipients by being donors. In Judaism there is the notion of Tzedakah which tells us how to treat others with justice. A great rabbi suggested a scale of Tzedakah with the second highest form that of giving anonymously to those that do not know who the giver is. But the highest form of Tzedakah is when the donor gives the recipient the means and opportunity to not need continued charity. Truly, a marrow donation is that highest form of Tzedakah, because it gives the recipient to new blood system so that the recipient's own body can produce the blood and immune response that is necessary for life (no longer does Sue need donated blood).
25:35 When your brother becomes impoverished and loses the ability to support himself in the community, you must come to his aid. Help him survive, whether he is a proselyte or a native [Israelite]. *Leviticus 25:35
In all the waiting, in all of the anxiety, in all of the hoping, into our life came a person who gave Sue the chance to live and thrive, who actually gave a part of themself not knowing who it was that was being saved and at some effort and surely some trepidation.
So it was a wonderful thing for Sue to be able to tell her donor
Thank you Bruce.
