Childhood Cancer

Childhood Leukemia

Finding a Donor

Finding a donor can be a stressful and time-consuming task. The search may begin in first remission for children with acute myeloid leukemia (AML), during the chronic phase for children with chronic myelogenous leukemia (CML), and soon after diagnosis for children with JMML. Searches of the registries are expensive and usually take six to eight weeks. 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. Appendix B, Resource Organizations, lists registries, foundations, and programs that can help you find a donor and obtain financial assistance, if necessary.

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 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 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.

If a sibling or other relative is identified as the best donor, that person needs to have the risks of donation fully explained. The medical team should explain that although the transplant is the best treatment, results of the transplant cannot be predicted and the success or failure of the transplant is not the donor’s fault. The American Academy of Pediatrics has issued guidance for when the donor is a child, which can be found at http://pediatrics.aappublications.org/content/125/2/392.

My son was 5 when he donated marrow to his younger brother who had refractory T-cell ALL. We didn’t want to make too big a deal of it in case it didn’t work. So, we told him that he had something his brother needed and we would be going to the hospital. He asked if it would hurt and we described the process in terms a preschooler could understand. They took cells from both hips, and he said three things as soon as he woke up: “It didn’t hurt.” “Did William get my bone marrow?” “When do I get a toy?” He needed pain meds for a few days, but a year later, he doesn’t remember that there was any pain related to the donation.

If an unrelated donor is identified in the database searches, the potential donor is given an extensive explanation of the entire donation procedure and a complete medical exam. Because the amount of marrow that is removed contains less than 5% of the donor’s developing blood cells, it only takes a few days for the body to replace the marrow. The donor is usually sore for a day or two and may feel a bit tired for several days.

The procedure often results in a mild anemia that resolves after several weeks. An iron supplement may be prescribed to hasten this process. The main risk of donating marrow is from the use of anesthesia. However, in an otherwise healthy donor, the risk of a severe complication is very small. After a discussion of these possible risks, the donor must then make a final commitment to provide stem cells for the child in need.

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 our transplant center flew out to pick it up.