“Dear Bone Marrow Donor,” wrote the patient before heading into a transplant, “… this is my only chance to be cured.”
The patient, Dr. Gayle Winters, didn’t sign her name: That was against the rules. She pasted her message into a glittering gold thank you card, dropped it off at her doctor’s office — and sent it through an unusual, anonymized postal system that connects grateful patients with their stem cell donors from around the world.
Winters, a pathologist at Brigham and Women’s Hospital, found her donor through Be The Match Registry, which every year helps thousands of blood cancer patients find bone marrow or umbilical cord blood from anonymous volunteer donors. Unlike those who donate hearts or lungs, bone marrow donors are still alive, so patients have the rare chance to say thanks.
Be The Match lets patients thank donors directly, with one catch — for at least the first year, communication must be anonymous. Writers are forbidden from using any part of their name, their pet’s name, or even a geographical clue like, “go Red Sox.”
The policy allows the flow of gratitude while protecting both sides from coercion, said Lynne Snediker, the registry’s senior coordinator of posttransplant communication: For instance, a donor can’t track down the recipient and demand money; and the patient can’t pressure the donor for more cells if the first transplant fails.
The policy, in place since the registry began in 1987, has created an elaborate postal system, in which three censors — at the donation site, Be The Match, and the transplant recipient’s hospital — read each letter to look for clues to a person’s identity. They redact them with scissors and markers. Snediker said the volume of communication grew so much — up to 20 letters a day, plus anonymized emails — that she now shares the task of reviewing correspondence with several people at the registry’s Minneapolis headquarters.
Last year, 16 percent of donors and recipients exchanged letters, Snediker said.
Winters, who’s 62, found herself writing one of those letters in March 2015. The previous fall, she had noticed “great big bruises” on her body. “It was so bad that somebody asked me if I was a victim of domestic violence,” she said.
It turned out she had myelodysplasia, a disorder in which the bone marrow creates abnormal blood cells — and which can progress to leukemia. Her doctors at Dana-Farber Cancer Institute started her on chemotherapy, and “my only chance to be cured was to do a stem cell transplant,” she said.
Winters has no brothers, sisters, or children — no potential donors in her family. So her doctors looked for a stranger with matching tissue type. Depending on a patient’s ethnic background, the chance of finding a donor through Be The Match ranges from 66 to 97 percent. Winters got lucky: the registry found a match within a month.
Winters said she was pretty scared going into her transplant: As a doctor, “we know, probably too well, everything that can go wrong.” The transplant might not take. She could get an infection from taking immunosuppressant drugs. Or she could develop graft-versus-host disease, where the donor cells would attack her body.
Just before her transplant, she penned a letter to her donor.
“It’s hard to know how to express enough thanks to someone who is willing to go through bone marrow donation for a total stranger,” Winters wrote.
“I was so afraid of what would happen if they didn’t find someone. When I got the call that they had identified a donor, there was a huge sense of joy and relief.”
“People say doctors make the worst patients,” Winters continued, “but I assure you I will be a patient first and do everything they tell me to do. And, most importantly, I will take good care of your stem cells!”
She signed the letter, “Your Bone Marrow Recipient.”
Meanwhile, Winters wondered about her donor: “Where was she? What made her go through the registry?” All she knew is that it was a 39-year-old woman.
Near Columbus, Ohio, Nicole Thaller was wondering about Winters, too. A special education teacher, she had been inspired to join the registry after her friend’s mother died while awaiting a bone marrow transplant. In March 2015, her time to help came. She spent 12 hours in the hospital, where staff drew her blood from her right arm, extracted the bone marrow, and returned the blood to her left arm.
A courier put her cells in a cooler and hand-delivered them to Boston. Afterward, Thaller was sore for five days because her body was regenerating bone marrow. But that was nothing, she said, compared to cancer and chemotherapy.
“I cannot begin to fathom everything that you have gone through,” Thaller wrote on a yellow card just before her hospital visit. “I donate my bone marrow to you with all the positive energy I can gather and expect nothing from you in return.”
By the time the letter made it to Winters, there was a chunk cut out where Thaller had signed her name.
About a third of stem cell transplant recipients at Dana-Farber choose to get in touch with their donors, said Jane Antin, the donor services staffer who handles their letters. She reads them at her desk, which has four pairs of scissors. She keeps copies of the letters — which now fill five big binders — in case they get lost in the mail. About two-thirds of the donors write back, she said.
After her transplant, Winters didn’t write for a while. She was cooped up in her house for eight months because she was immunosuppressed. Last November, she wrote Thaller to announce that she was back at work.
“Thank you again — so much!” Winters wrote. “It’s been a long road but it’s also amazing it works.”
Be The Match handled over 900 requests for direct contact last year after the period of anonymity lifted. At Dana-Farber, about 1 in 5 donor-recipient pairs choose to reveal their identities to each other, Antin said.
Winters and Thaller leapt at the chance to do so. They began to email each other. Winters, who grew up in Chicago, was tickled to find out that they are both Midwesterners.
Winters reported good news: She has no sign of myelodysplasia. The transplant succeeded, and all of Winters’ blood is now made up of Thaller’s cells.
“Your generosity has made a huge difference to me,” Winters told her.
Thaller, a mother of two, also got answers to some burning questions. Thaller suffers from seasonal allergies and takes medication for obsessive-compulsive disorder. She was concerned that those afflictions might be passed through her cells.
“Do you feel any different now that you have my bone marrow?” Thaller asked in a May email. “Do you like different foods?”
“I hope it is not too bold to say that I feel like we are now connected forever,” Thaller added.
Winters sent back assurances: “I am absolutely no different than before my transplant — no new allergies, like the same food, have the same personality (I think).”
This time, she signed the letter, “All the best, Gayle.”