When Joe Robinson’s wife, Ellen, asked him to join her at a bone marrow drive for a local woman with leukemia, the answer was a quick and definitive “no.”
It was December 2002, and Robinson, then 27 and a newlywed living in Northwest D.C., was terrified of needles and squeamish around blood. Ellen assured him that he’d only have to endure a simple finger prick to determine his tissue type. The drive aimed to find someone whose tissue type matched the young woman’s, and then have that person donate bone marrow to save her life.
“I told her, ‘I’ll pass. Have fun,’ ” Robinson says.
But it was snowing that night, and Ellen, who grew up in Rockville, was hesitant to drive herself. So Robinson, who grew up in Massachusetts, offered to drive her from their home to the Washington Hebrew Congregation on Macomb Street NW and wait while she was tested.
Once they arrived, Robinson says he “felt guilty” upon seeing a photo of the sick woman. “She was just a couple years younger than me,” he says. Plus, “there were all these other people getting tested.”
So Robinson consented to the finger prick. Organizers of the drive explained that even if he wasn’t a match for the young woman, his information would be entered into a global registry where doctors could find potential donors for their patients.
Robinson and his wife went home, and “I forgot about it by the next day,” he says. “Really, I never thought about it again.”
Ten years passed. Then in January 2012, he got a call from the donation center at the Marrow Donor Program at the National Institutes of Health in Bethesda, letting him know that he was a potential match for a 60-year-old woman with leukemia—that his bone marrow could save her life. Would he be willing to donate?
Anita Cutler, a speech pathologist in Peabody, Mass., had lived a healthy life until she was diagnosed in November 2011 with acute myeloid leukemia, or AML, a fast-developing form of the disease. Her doctor told her that the prognosis was grim—a 5 percent chance of surviving five years without a bone marrow transplant.
Doctors typically look first to siblings for a match. But Cutler’s brother was older than 60—outside the ideal donation range of 18 to 44. That meant her best chance of survival was the National Marrow Donor Program’s Be The Match Registry, which is sponsored by the Minneapolis-based National Marrow Donor Program (NMDP). There are more than 10.5 million potential donors on the registry. Still, Cutler’s doctor told her that only about 50 percent of patients who need a bone marrow transplant succeed in finding a donor.
Sarah Pogue, a registered nurse who serves as senior coordinator of the NIH Marrow Donor Program, one of the donation centers within the NMDP system, says some racial and ethnic groups are tougher to match than others. That’s because their tissue types are more variable and because the groups may be underrepresented on the registry, she says. For example, African-American patients are 30 percent less likely than white patients to find a match, according to the NMDP.
In some cases, potential matches may not be available to donate—a donor could be pregnant, for example. And potential donors sometimes can’t be located because they failed to update their contact information with the registry, Pogue says.
Cutler’s fiancé, Larry LeBlanc, was optimistic she’d find a donor, and she decided to share his attitude. Still, Cutler couldn’t avoid thinking about all she’d leave behind if she didn’t find a match—especially her 3-year-old granddaughter and her grandson, who was due to be born within a few months.
“I felt like my whole life was going out the window,” she says.
Robinson says that when he first got the call from NIH, “I really thought about not doing it.”
So much had changed since he was tested at the bone marrow drive almost 10 years earlier. He and his wife now lived in Bethesda and had three kids—a 5-year-old and 2-year-old twins—and Robinson’s job as vice president of EEI Communications’ training center in Alexandria, Va., kept him busy nonstop.
Robinson listened as a nurse explained that there are two ways to donate marrow. One method involves placing a donor under general anesthesia while a doctor uses a needle to draw marrow from the back of the donor’s pelvic bone.
The other method involves a peripheral blood stem-cell (PBSC) transplant, a nonsurgical procedure that extracts stem cells from the donor’s blood, then returns the remaining blood to the donor. The stem cells are then transplanted into the recipient. Recipients’ doctors decide which method is needed. Roughly 70 percent of the 30 or so annual donations performed at NIH are PBSC transplants, according to Pogue.
Robinson’s potential recipient needed the stem-cell transplant. The procedure would include receiving two daily injections the week before the donation. The donation itself would require Robinson to be connected to multiple needles for several hours. Robinson called his wife at work in a panic after hanging up with the NIH representative.
“This is a guy who practically passed out when they did the finger prick,” Ellen Robinson says. “I joked that I wished it was me who’d been picked, because I know I’m a better patient than he is.”
Though he was initially reluctant to donate, Joe Robinson quickly found himself reconsidering.
“God forbid if I needed it, or somebody in my family needed it, I would want someone to do that for me,” he says. “And yeah, it’s a little bit of discomfort to me, but to the recipient, it’s their life. Thinking about it that way, how could I say no?”
Robinson says things moved quickly after he agreed to donate. An initial blood screening confirmed that he was a perfect match for the recipient, and a physical exam confirmed that he was healthy enough to donate. Doctors scheduled the procedure for Friday, Feb. 24, 2012—less than 30 days after he received the phone call from NIH.
The process moved even more quickly for Cutler, whose oncology nurse called early in February to let her know that a donor had been identified. The nurse told her to prepare for ablation—three rounds of high-dose chemotherapy that would essentially destroy her own immune system.
Pogue informed Robinson that his recipient was beginning the ablation process, and that he was still free to back out at any time, though the intended recipient would almost certainly die if he did.
“No matter what your fears are, you realize at that point that it has to get done,” he says.
A week before the donation, Pogue began coming to Robinson’s home in Bethesda each night to give him two shots of filgrastim, a drug that would increase his bone marrow production. Pogue explained that he’d feel some pressure in his bones as the amount of marrow increased.
“I tell people it felt like having the flu without the head cold,” he says. “Your bones just kind of ache.”
