Only when her doctors told her she was going to die without one did Rachel understand how critical a bone marrow transplant was.
Just two months before hearing these words, the RN had rarely been sick a day in her life. A South Dakota native now living in Lewiston, New York, she loved reading and traveling but especially being with her family: her husband, three teenage children and three cats. Then, in December 2017, she developed an odd fever that hit every night for eight straight days.
Although she looked fine, her white blood cell count proved otherwise, reading at 120,000, or 10 times higher than a normal count. The always-healthy nurse was diagnosed with acute myeloid leukemia. That was a Friday. On Monday, the oncologist told her to go straight to Roswell Park, without even stopping at home. She was admitted right away. Dr. Elizabeth Griffiths, a leukemia expert in the Department of Medicine, started talking to Rachel about a bone marrow transplant (BMT), but Rachel was worried about graft-versus-host disease (GVHD), where donated cells attack the donor’s body. So they started her on chemotherapy. After several weeks of treatment, she was able to go home. But then her white blood cell count spiked to 199,000.
Dr. Griffiths admitted her again and told her, in no uncertain terms, that there was no more time for wait-and-see. Now, two months after her diagnosis, Rachel had to have a bone marrow transplant, or she was going to die. Most white blood cells are produced in the bone marrow. Leukemia is cancer of bone marrow and/or other tissues that produce blood. So when the bone marrow malfunctions like it did in Rachel, sometimes the only hope for survival is to replace it with a transplant from a donor. Finding a donor means finding someone whose HLA, or human leukocyte antigens, match the patient’s. HLA are proteins found on most cells in your body. Matching HLA is critical to the growth and development of healthy new blood cells and in reducing the risk of GVHD, Rachel’s initial fear. The more similar the HLA, the better the chance of a successful transplant. Doctors first look for a match among the patient’s siblings. When that fails, they turn to the public. Fortunately, organizations like Be the Match help patients connect with volunteer donors around the world. But it’s not cheap, and insurance often doesn’t cover the cost of testing those potential matches. This is where generous donations to the Roswell Park Alliance Foundation have come in. “They help us cover the cost of tissue typing, which helps identify a potential donor for a patient who needs a blood or marrow transplant to cure their disease,” says Dr. Philip McCarthy, Director of Roswell Park’s Transplant and Cellular Therapy (TCT) Center and the doctor who oversaw Rachel’s BMT. In 2018 alone, donations funded 68 searches resulting in 68 matches for our patients. Donor support also helps the TCT team find matches faster, which can make all the difference in these situations, says Dr. McCarthy. “With this kind of donor support, we can offer a faster time to providing curative therapy and potentially save more lives. If we can’t get to them in time, their disease could get beyond our ability to treat or control. We may miss our only window of opportunity.”
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Rachel’s donor was found in Europe. In March of 2018, the TCT team performed Rachel’s bone marrow transplant. After the procedure, the doctors and staff monitored her for several weeks to make sure her numbers got back to a good level and her body was healing. A year and a half later, Rachel is doing great. She’s working again at the hospital where she’s been for almost 16 years. And she’s grateful for the role donations to the Roswell Park Alliance Foundation played in her story. “That donors have helped provide this testing is just amazing. I can’t stress enough the importance of not having to worry about trying to finance a donor search. When you get a cancer diagnosis, it is so much to process. I know I was shocked — in complete disbelief at first. You’re confused, tired, scared, ill from treatment, and you just want to put on a brave face for loved ones. There is just no way someone could be organizing a way to get the funds for a donor search. “And in my case, time was of the essence. I am forever grateful to my team at Roswell Park. They were there for me and advocated for me when I wasn’t sure what to do.”