Katie Goldberger
A special "reunion" shows value of bone marrow donations
"When they told me that I could write to you, I knew immediately that I would. But I did not know what I'd say. It feels very weird to have this connection and yet to not know who each other is. I cannot imagine being in the situation that you are in now. You obviously have a great deal of courage to be where you are. . . ."
So begins a letter from "Wendy Bird" to "Hope," written five years ago as Hope was about to undergo a bone marrow transplant at Dana-Farber/Brigham and Women's Cancer Center (DFBWCC). Writer and recipient had never met — as the letter hints, didn't even know each other's real name — but their bond was as real as life.
The letter accompanied an airlifted package that contained Wendy Bird's bone marrow — a perfect immunological match to Hope's own marrow, which had been destroyed by chemotherapy and radiation in preparation for the transplant. Over the next year, as Hope gradually recovered and regained strength, she and Wendy wrote each other regularly, careful not to reveal their identifies, as required by the National Bone Marrow Registry program.
After the mandated year of anonymity had expired, Hope and her parents drove six hours from their home in upstate New York to Wendy's family's home outside Cleveland for a first meeting that felt more like a reunion. To promote the bone marrow registry, Hope had invited the news media to broadcast the event live.
On Thursday, May 10, 2001, Wendy — real name, Wendy Leatherberry — and Hope — real name, Katie Goldberger — talked about their experience to a group of students at Harvard Medical School. The event was part of "Type for Life," a recruitment drive for bone marrow donors at the school.
Leatherberry signed up for the bone marrow registry as a freshman in college, knowing the odds were almost astronomically against her ever being asked to donate. Still, "I agonized over having my blood tested [for the registry]," she said. "I knew that if I got the call to donate, I wouldn't be able to bring myself to say 'no.'"
Goldberger explained how, as a high school senior in 1995, she began having bruises, headaches, and fatigue. A visit to her doctor and a series of tests determined that she had acute lymphocytic leukemia (ALL). Without a bone marrow transplant, her chances of surviving even a year were less than 10 percent.
Leatherberry picked up the thread of the story, describing her reaction to a phone call from the National Bone Marrow Registry. "They told me I was a potential match for a patient needing a transplant and asked if I was still interested in donating. It had been a year and-a-half since I'd signed up. I asked, 'What can you tell me about the patient?' They said she's 17, she's a woman, and she has ALL. As soon as I heard she was 17, I knew I wanted to do this."
She recalled her mixture of excitement and trepidation as her bone marrow was harvested during a hospital stay. "I remember getting nervous the night before the harvest. A family friend told me, 'Tonight will probably be the worst night of your life, but tomorrow will be the best day.'"
The harvest itself wasn't as traumatic as Leatherberry had expected. "I was a bit sore, but it was a good pain. I remember thinking, 'I did this great thing, so it's okay that I hurt a little.'"
Goldberger then described her transplant experience: her fatigue and mouth sores, her family's support, the isolation in a hospital room for five weeks. "The doctors from Dana-Farber and Brigham and Women's were great," she said. "They treated me like an adult. They trusted me to tell them how I was feeling and what I needed."
After the women showed a videotape of their first meeting, DFBWCC's Robert Soiffer, M.D., of Adult Oncology reflected on being a "bone marrow transplanter." "You have no idea how devastating a leukemia diagnosis and the prospect of a bone marrow transplant are unless you've gone through them," he said. "You fear not just for your own life, but you worry what will happen to your family if you die.
"In addition to the amazing strength and resilience that patients have, it's important not to overlook the sacrifice that donors make," he continued. "To say, 'I'll be available if someone in 'Timbuktu' needs a bone marrow transplant,' and to subject yourself to the inconvenience and discomfort of a bone marrow harvest is an act of extreme generosity." Said Soiffer, "The program that matches patients with unrelated bone marrow donors has created a whole new class of heroes."
(Inside the Institute, May 22, 2001)
