Keene, 11, and Heeth, 9, were a typical sister and brother pair. Keene found her younger brother annoying at times for being too loud or messy, but she loved him as any big sister does. In February 2021, when Heeth was diagnosed with aplastic anemia, this sibling bond was forever changed.
Heeth had been fatigued and experiencing headaches and bruising, but the tough, energetic kid never let on that he wasn’t feeling well. Heeth was first admitted to the hospital early in 2021 when his parents, Molly and Todd, found an unexplained rash. After several blood draws, a bone marrow procedure, and many tests, the family learned the shocking news of a blood disorder. Aplastic anemia is a rare blood condition that occurs when the bone marrow cannot make enough new blood cells for the body to function normally. Stem cell (bone marrow) transplant is currently the only cure for aplastic anemia, with the best cure being a sibling match bone marrow transplant.
Heeth’s care team worked quickly to find a stem cell donor. Within a matter of days, Keene was tested to see if she was a match. She not only was a viable match—she was a perfect match. The team began preparing Heeth and Keene for the transplant process, although neither child seemed to understand the gravity of the procedure. Keene was so eager to help her brother feel better; they were excited, like it was an adventure they were embarking on together.
Unfortunately, the transplant from Keene didn’t happen due to her low cellularity (cell clusters). She was devastated that she couldn’t help to save the day for her family and make her brother feel better. Instead, Heeth received an antithymocyte globulin (ATG) treatment, and when that didn’t work, an anonymous donor’s stem cells were used for Heeth’s bone marrow transplant. Within a week after the transplant, Heeth was back in the ICU with a swollen face and fever. The transplant didn’t work and Heeth needed platelets every other day.
When Heeth returned home, he was so sick that he would sleep most of the day and make daily visits to the clinic for platelets. Despite how frightening this situation was and atypical for a child to endure, Keene never left her brother’s side. She helped her parents care for him by reading him books in the bathroom while he was sick and sitting with him when he was too tired to leave the couch. Eventually, desperate to feel better, Heeth asked his parents to go back to the hospital. At that time, Heeth’s parents and Leslie Lehmann, MD, clinical director of the Pediatric Stem Cell Transplant Center at Dana-Farber, decided to test the family again to find another possible match for Heeth’s treatment. Again, Keene was a perfect match, but the low cellularity was still a concern.
Dana-Farber’s Bone Marrow Failure and Myelodysplastic Syndrome (MDS) Program is recognized as one of the nation’s best pediatric treatment and research programs, and Dr. Lehmann and her colleagues refused to give up on finding the best treatment for Heeth. Like every patient, his case was unique. Dr. Lehmann spent countless hours reading international research papers, conferring with other Dana-Farber doctors, calling Molly on Sunday nights to share her thoughts on a plan to save Heeth’s life. Ultimately, Dr. Lehmann and Molly agreed to move forward with the stem cell transplant from Keene, despite the challenges.
While their parents were petrified, Keene was again excited to help Heeth and both children were incredibly brave leading up to and during the transplant. The kids often made jokes about the procedure, like when Keene said, “Maybe once you have my cells, you’ll start cleaning your room.” Heeth replied, “Probably not.”
As Heeth was recovering from the procedure, Keene visited every day. He would watch the clock waiting for his big sister to arrive, which kept him motivated to improve. Keene’s visits were just as important to Heeth’s recovery as the transplant itself; together they would decorate cookies, put Snoop Dogg on and dance around, do puzzles, and watch silly movies. Since Heeth returned home at the end of March 2022, Keene continues to be a protective big sister. She is known in her hometown as one of few people who continue to wear a mask, but she wants to protect her brother from COVID-19. She also encourages Heeth through his breathing exercises and physical therapies.
Generosity and thoughtfulness are threads that tie Keene and Heeth. While in the Jimmy Fund Clinic at Dana-Farber, experiencing his own treatment, Heeth wanted to write letters to the other patients to make them feel better. For Keene, she started to ask her mom about how she can help Dr. Lehmann and thank her for saving Heeth’s life. The family is acutely aware of the effort that Dr. Lehmann put in to finding a treatment beyond the standard of care.
This led to the creation of Knitting for Knowledge, Keene’s project to sell scarves she has knitted to raise funds for Dr. Lehmann’s research. Already, Keene has received about 50 orders—mostly from friends and family—and the 11-year-old now skips play dates and TV to knit. Not surprisingly, she puts great thought into the detail of each scarf, picking out colors that might bring out someone’s eyes or match their lipstick. Keene’s best customer, though, is Heeth, who wears his scarf on the couch when he gets cold.
While Keene and Heeth were close before, it’s obvious how the experience of aplastic anemia has bonded these siblings. Heeth continues to adore Keene and want to be her best friend, and now, Keene is Heeth’s number one fan as well, even choosing to tolerate some of Heeth’s loud singing from down the hall.
Help support patients like Heeth by joining The Dana-Farber Campaign, our ambitious, multi-year fundraising effort to prevent, treat, and defy cancer. The Dana-Farber Campaign will accelerate the Institute’s strategic priorities by supporting revolutionary science, extraordinary care, and exceptional expertise. As a community, we have the power to create a more hopeful, cancer-free future—in Boston and around the world. Together, we can defy cancer at every turn. Learn more about The Dana-Farber Campaign and how you can get involved at DefyCancer.org.