The Greatest Gift: Bone Marrow Donors Tell Their Stories
Every three minutes someone in the United States is diagnosed with a blood cancer such as leukemia, lymphoma and myeloma. For 70% of those patients, the only hope for a cure is a bone marrow transplant from someone outside of their family.
This is the daunting statistic looming over the heads of the team at the National Marrow Donor Program at Cook Children’s. Each day, this dedicated group of six sets out to see how many people they can enroll in the National Marrow Donor Program, also known as the Be the Match registry. Equally as important, they’re also tasked with contacting, scheduling and counseling donors who have been identified as a likely match.
“We have the potential to save anyone’s life,” said Jamie Kayser, the program’s director. “It’s not just blood cancers, the donors we identify also save the lives of patients with diseases like sickle cell anemia. We find donors for both adults and children.”
For Kayser, her work is more than a job. She’s one of the millions of people who have been deeply affected by cancer.
“When I was 27 years old, my first husband died of leukemia,” she explained. “He underwent two bone marrow transplants over the course of his treatment. I was not a nurse at the time, but going through it with him, I realized how important nursing was and I decided I was going to become a nurse.”
At the time, Kayser vowed to never work in oncology or in a bone marrow transplant unit. She ended up doing both. Her first role was as an oncology bone marrow transplant nurse at Cook Children’s, which she accepted in 1994. Seven years later she took over her current position as the director of the National Marrow Donor Program at the hospital.
“I say I’m doing the other side of transplant,” Kayser said. “There’s the side where the patients receive the bone marrow transplant and then there’s this side where we register donors, find matches for patients and get them ready to give.”
The National Marrow Donor Program is a nationwide registry. For those enrolled, the chance of being identified as the best possible donor for a patient is one in 300.
“There are two ways to donate depending on what the patient’s doctor requests,” explained Kayser. “The most common way is very similar to giving blood.”
Seventy-five percent of donors are asked to provide blood stem cells through a peripheral blood stem cell donation (PBSC) donation. This was the case for 21-year-old Andrew Kozman of North Richland Hills, Texas. He knew the chances of being identified as a match were rare when he signed up for the donor registry in late 2018. During his PBSC donation, he said he was shocked to receive a call just three months after he submitted his cheek swab in the mail.
“You always hear about the people who have been on the list for years and have never received a call,” said Kozman. “I was fortunate to get a call just months later. Everything has moved pretty quickly since then.”
To prepare for his donation, a nurse visited Kozman’s home for five days ahead of the appointment and injected him with a drug called filgrastim. The medication increases the number of blood-forming stem cells in the bloodstream. On the fifth day, blood is drawn and circulated through a machine that filters out the stem cells. The remaining blood is returned to the donor.
“It was just like getting a normal flu shot. I felt a little sore afterwards, but that’s it,” said Kozman. “I never really gave it a second thought. I signed up and found out that someone needed my help. I thought ‘I could sit in a chair for a few hours if it’s going to save someone’s life.’”
The second way to give is through a surgical procedure called a marrow donation or harvest. Only 25% of donors are asked to provide blood stem cells in this manner. This procedure is done at a hospital while donors are under anesthesia.
“Unfortunately, there is a lot of misconception about bone marrow harvests,” said Gretchen Eames, M.D., medical director of Hematology/Oncology and Stem Cell Transplant Program at Cook Children’s. “It is considered a minor surgery. There is no incision; no stitches or sutures are needed.”
During a marrow donation, blood stem cells are withdrawn through two small punctures in the back of the donor’s pelvic bone. Discomfort during recovery varies from person to person, but Dr. Eames says donors are usually able to manage any pain with Tylenol or hydrocodone. Most people will make a full recovery within a week.
Rebecca Proctor joined the National Marrow Donor Program registry in 2014 when she was a college student. Now a Neonatal Intensive Care Unit nurse at a Fort Worth hospital, she was also surprised to receive a call informing her that she was a match for a patient in need of a bone marrow transplant.
“I was definitely a little nervous when I first got the call,” said Proctor. “After agreeing to a marrow donation, I would have days here and there where I would panic. But I knew if this was going to save someone’s life then I could do it.”
Dr. Eames performed the procedure on Proctor at Cook Children’s, which is one of two bone marrow collection centers in Texas and the second busiest center in the U.S.
“We do approximately four to six bone marrow harvests a month,” said Dr. Eames. “Our donors come from all over the place. Many of them live here in the Dallas/Fort Worth area, but we have people who travel here from California, the east coast and the Midwest because they do not have a national marrow donor collection center where they live.”
For Proctor, the process was much easier than she anticipated.
“Besides a minimal amount of soreness, this really hasn’t been a bad recovery,” she said two days after her donation. “There’s some hoarseness in my throat from the breathing tube, but honestly, this is nothing compared to what my recipient has been going through.”
While donors don’t know who they are giving to, they are likely of the same ethnic background since donors and patients need to be a close genetic match. Given the current makeup of the National Marrow Donor Program registry, the likelihood of finding a match for a white patient is 77%. African American or black patients only have a 23% chance of finding a match.
To improve these odds, ethnic diversity among people on the registry needs to increase. To put it simply, more people are needed to join the registry.
“Everyone, when they turn 18 years old, should sign up for the National Marrow Donor Program registry,” urged Kayser. “We believe every patient should have an equal opportunity to find a match, regardless of their ethnicity.”
To increase those odds, Kayser’s team hosts booths at live events in North Texas as well as West Texas to enroll potential donors. They answer questions, collect information and cheek swabs.
Proctor, like most donors, encourages others to join the registry. Having gone through the process herself, she says she is glad she was able to help someone in need.
“This is something I am so proud to say I have done. Looking back, I would do it again in a heartbeat.”