Finding a donor

Finding a bone marrow donor can be a stressful and time-consuming task. The search may begin after relapse for children with ALL, in first remission for children with AML or some types of high-risk ALL, during the chronic phase for children with CML, and soon after diagnosis for children with JMML. In some families, tests show that a sibling or parent is a partial or identical match. Other children, especially those from minority groups not well-represented in the donor files, can wait months or years for a match, or a match may not be found.

My advice to parents just beginning the process is do not rely on anyone else to make all the arrangements for a donor search and financial arrangements with the transplant center. We were focused on my son's relapse treatment and thought a donor search was ongoing. We then found out that over two precious months had been lost in a delay for financial approval. I foolishly relied on my doctor and his staff to make arrangements and follow through, and it just slipped through the cracks. I should have been on the phone several times a week making sure that the search had begun and that the transplant center was happy with the financial arrangements. I have a lot of guilt over whether those months made a difference in my son's outcome. I'll never know.

The first step in determining if a person is an HLA match is to obtain a sample of blood and send it to a laboratory for analysis. Each full sibling and biological parent is also HLA-typed. If a match is not found, then the search widens to the unrelated donor registries or placental blood banks. Appendix C, Resource Organizations, lists registries, foundations, and programs that can help you find a donor.

Christie had a rare HLA type, and we could not find a match in all the registries worldwide. We decided that we had to do it on our own and began a donor drive in our town, which is predominantly Italian. The Red Cross discouraged us, saying that we probably wouldn't get a good response, that they could not process the blood without the money ($45 per person) in hand, and that it would be better to spend quality time with Christie. But when the community of Rochester found out, it just snowballed. Dave and I went on TV and advocated for Christie, stressing the importance of Christie's bone marrow drive, and told people that this might help their own child one day. The first day of the drive, people lined up outside and stood for hours in the freezing rain and cold. The response was so overwhelming that late in the day they ran out of supplies. Large corporations became involved; GRC did a telethon that raised over $50,000. We typed over 4,000 people from Rochester and received letters from all over the country. It was just a beautiful thing. Christie was such a powerful little person, and she came to represent so much to our community.

We felt that it was an omen that Jody's older sister and younger brother were perfect matches. They chose Marieke because she was older, but after all of the workup and tests, they discovered that she was CMV (cytomegalovirus) positive so they used 2-year-old Christoph's marrow. Marieke was very disappointed.

While they were trying to find a match for JaNette, the church started a fundraiser and donor sign-up drive. They signed up over 600 people in two days, and United Blood Service had matching funds available to offset some of the costs. Meanwhile, we found an unrelated donor who lived in Milwaukee. She donated the marrow there, and a nurse from UCLA flew out to pick it up.

If a sibling or other relative is identified as the best donor, that individual needs to have the risks of donation explained fully. This should be done in a non-threatening setting without pressure from the childs parents. The transplant team should explain that although the transplant is the best treatment for the patient, results of the transplant cannot be predicted. The success or failure of the transplant is not the donors fault. Some centers will have a psychologist verify that a minor donor truly understands what is being requested, and that they have not been pressured by parents to agree.

If a child needs a marrow transplant from an unrelated donor, the national and international registries are asked to conduct a computerized search of their databases. This will identify any donors with the same HLA type as the child. The registry contacts the potential donor to ask if he will donate more blood samples for additional tests.

If the testing shows compatibility, the donor is given an extensive explanation of the entire donation procedure and a complete medical exam. The donor must then make a final commitment to provide marrow for the child in need.

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