In the hospital bed lie a teenage boy, dying — his body under attack from the same bone marrow transplant that had just saved his life from leukemia. Lying next to him was a girl, grief erupting from her small body in uncontrollable sobs at the impending loss of her big brother.
She’d thought she had saved his life with the gift of her marrow, but now that gift was killing him.
Thirty years later, the image of those two siblings is still burned into Dr. Stephanie Lee’s mind.
“I just think this shouldn’t happen,” Lee said, tears welling up in her eyes at the memory from her time as a young volunteer at Fred Hutch. “You make these people so sick by trying to cure them.”
Three decades ago, the young woman from Redmond, Washington, about to head off to medical school, didn’t know that that painful moment would eventually serve as an inspiration for her entire career. In fact, it sparked her lifelong drive to improve the survival and quality of life of others facing the same potentially lifesaving, but risky, treatment.
Now, Lee is back at Fred Hutch as a hematologist in the Clinical Research Division and director of the Long-Term Follow-Up Program. Among her several areas of research, the memory of the boy from long ago is echoed today in her ongoing studies of graft-vs.-host-disease, which not only took his life but continues to affect too many transplant recipients today.
Lee is especially interested in the less deadly, chronic form of GVHD, in which the transplanted tissues’ gradual rejection of their host causes debilitating and maddeningly diverse symptoms: from painful dry eye and bark-like scarring of the skin to a gradual and irreversible loss of lung function.
“I just see it as such a huge problem. We cure these people of their leukemia or their lymphoma, and we pretty much give them a different disease that they’re going to be dealing with for many years,” said Lee, who leads a national research network on this once-neglected condition. Thanks to research conducted by Lee and others in this network, doctors now have a better understanding of how this complication occurs and the treatments that work for different types of chronic GVHD, bringing the hope of more effective therapies to the approximately four in 10 transplant recipients who face it.
Lee has also been instrumental in identifying genetic criteria to better match donors with patients who need transplants. Now, doctors can find more exact matches for their patients, which lowers their risk of complications like GVHD and offers better quality of life after transplant.
Could this progress that Lee and others have made over the past three decades have saved the life of that boy 30 years ago? “I would hope so,” Lee said. “The survival rate keeps going up. Just by the numbers, statistically, he would have a better chance.”
Susan Keown is a staff writer at Fred Hutchinson Cancer Research Center. Before joining Fred Hutch in 2014, Susan wrote about health and research topics for a variety of research institutions, including the National Institutes of Health and the Centers for Disease Control and Prevention. Reach her at firstname.lastname@example.org.