Some 100 days after receiving a stem cell transplant to cure his severe aplastic anemia, Behaylu Barry still couldn’t invite friends into his home. He wouldn’t be returning to school until January because his immune system needs the time to get strong enough to fight the pathogens present in indoor spaces. But 13-year-old Behaylu was doing so well that his doctor cleared him to play soccer – outdoors, of course — for the first time since February, when he was diagnosed with the life-threatening blood disorder shortly before he was to join the competitive soccer team that had just selected him.
So Behaylu recently walked on the field with his old traveling team, the Exeter (NH) Hawks, for a two-game pre-season tournament. The Hawks won, 4-1 and 6-1, with Behaylu, playing center midfield, scoring two assists in the first game, three in the second – and a goal in the second game with a head shot from the corner. His mother, Midori Kobayashi, cheered so much and so loudly that she lost her voice.
“Soccer is always pretty awesome,” Behaylu says. “This is the biggest step back to a normal life. One of them was swimming. One was hanging out with friends. Playing soccer is two steps. It’s one giant leap.”
“I know he pushed himself beyond his limits,” says his father, Aidan Barry. “But he’s 13. What do you do? Put him in a cage? It was a magical time for everyone.”
As rare as severe aplastic anemia is, Behaylu’s story is particularly unusual. Adopted from Ethiopia at age 6, his best chance for cure lay in finding a matched sibling donor – a task that his clinicians at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center initially thought was impossible. But Behaylu’s adoptive parents had been paying for the education of his siblings in Africa, and two of them turned out to be perfect matches. On May 12, after undergoing five days of intensive chemotherapy to kill his diseased bone marrow, Behaylu received stem cells from his brother Rediat. Along with his sister Eden, Rediat had come to America on a 30-day journey that had them flying on an airplane for the first time and taking their first hot showers. (See Siblings arrive from Ethiopia to try and save brother’s life.)
Now, with his month-long stay at Boston Children’s behind him and Rediat’s stem cells taking hold, Behaylu’s body is reconstituting the bone marrow that his illness had devastated. It is producing the oxygen-carrying red blood cells, infection-fighting white cells, and clot-promoting platelets whose absence had left him dangerously susceptible to infection and bleeding. Since his transplant, he has been infection-free and has not contracted graft-versus-host disease, which affects 10-20 percent of patients with a matched sibling donor.
“Behaylu is almost certainly cured,” says Leslie Lehmann, MD, clinical director of Dana-Farber/Boston Children’s Stem Cell Transplant Center. “The new bone marrow cells from his brother are doing very well.”
Since returning to his Stratham, NH, home in mid-June, Behaylu has been coming to Dana-Farber’s Jimmy Fund Clinic for weekly check-ups. He’s seen friends in his back yard only – plus a trip or two to town during which he had to stay outside while his friends went into stores. He takes 47 pills a day and can eat fresh produce only at home, after it’s been thoroughly washed according to his clinicians’ instructions. His sense of taste is coming back, and after finally getting the go-ahead in August to eat restaurant food, he tried his favorite, a Five Guys hamburger, albeit without lettuce and tomato.
“We will continue to monitor Behaylu for the first year after transplant – checking his blood work, decreasing his immunosuppression medication and monitoring his lung, liver and kidney function,” Lehmann says. “We have every expectation that he will lead a full and normal life.”
After missing most of the spring semester, Behaylu caught up with his classmates at Cooperative Middle School over the summer, earning high honors, and he’ll complete his first semester of eighth grade through Skype, Facetime, online learning and tutors.
When he returned to his soccer team, Behaylu got no more special treatment than a “Hey, dude, it’s been a while,” which he appreciated.
“I don’t like being special unless it’s soccer, and I scored a goal,” Behaylu says. “If it’s something bad” – like getting severe aplastic anemia – “I don’t want to be known for it, because it’s not something I did. In soccer, I worked for it. I earned it.”