Acute Myeloid Leukemia (AML)
For many teenagers, high school is an exciting time – new friends, driver’s licenses, college applications – but for Carly Nguyen, it was a time interrupted by a life-altering diagnosis. After several weeks of feeling fatigued and having little to no appetite, Carly visited her pediatrician, who ordered blood tests that came back abnormal. She was immediately sent to Children’s National Hospital in Washington, D.C., where she was diagnosed with Acute Myeloid Leukemia (AML), a rare and aggressive form of pediatric leukemia.
In March 2015, Carly, then age 16, started chemotherapy under the care of Shana Jacobs, M.D., an oncologist who specializes in leukemia treatment for children. After one round of chemotherapy, it was clear that the best option for Carly was a bone marrow transplant. However, finding a donor match would be difficult: 70% of patients cannot find a matching donor within their family. Making her odds even slimmer, Carly is Vietnamese and Asian-Americans are underrepresented in national bone marrow registries. Fortunately, Carly’s donor was found during her second round of chemotherapy through the Be the Match database.
As it turns out, the donor had registered eight years prior at an Asian-American Donor Program event after learning about the need for mixed-heritage donors. Thanks to her donor’s selfless act, Carly was able to receive the bone marrow transplant she desperately needed in August 2015 under the care of David Jacobsohn, M.D., Sc.M., division chief of Blood and Marrow Transplantation. Carly’s transplant went well, even though it was still potentially risky given that the best donor available was still not a perfect match.
“Neither of Carly’s siblings were matches so we knew the road to finding her a donor could be a long one,” said Dr. Jacobsohn. “We were so pleased – and surprised – to find a close match, what we call a seven out of eight, so soon. Without a perfect match, Carly was still at risk for complications such as Graft-Versus-Host Disease, but she did really well. It just shows the importance of multi-ethnic donors and the impact one person can have on someone else’s life."
Today, 19-year-old Carly is cancer-free and studying nursing at Catholic University of America. She plans to work in pediatric oncology and help children in the same way her team at Children’s National helped her. On May 4, 2018, Carly met her donor in person for the first time at an event focused on raising awareness about the need for more multi-ethnic bone marrow donors. Carly and her donor, Gerard, hope their special relationship will inspire more people to join the bone marrow registry.
“It’s really amazing what my donor and care team did for me – I can’t thank them enough,” said Carly. “Today, I never take a day for granted. This experience has taught me that I can find happiness in the small things.”