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Playing offense against a rare disease
In January 2023, 14-year-old Jack began experiencing pain in his legs while running. For an avid soccer player, this was a problem. “I could barely run, and it got to the point where I couldn’t even finish the warmups,” Jack remembered. Appointments at an orthopedic clinic and his regular pediatrician revealed nothing obviously wrong with his legs. After one appointment, Jack mentioned to his father, Brett, that a teacher had said he looked a little pale. Brett agreed and they headed to Connecticut Children’s Urgent Care Center in Farmington.
The Urgent Care Center team evaluated Jack, then sent him to Connecticut Children’s Emergency Department for blood tests, which revealed his hemoglobin was alarmingly low. That’s when Jack met Kerry Moss, MD, who would become Jack’s pediatric hematologist/oncologist and inspiration. He was admitted to the medical-surgical floor for a bone marrow biopsy. A week later, he was diagnosed with myelodysplastic syndrome (MDS), a type of blood cancer. His bone marrow wasn’t making enough healthy blood cells.
Relocating for a bone marrow transplant
MDS is rare and mostly affects older men. “It’s one in four million for a child to be getting this disease,” Jack explained. In adults, MDS can be managed with repeated blood transfusions or chemotherapy, but repeated treatments can have adverse effects for younger patients. Dr. Moss recommended a bone marrow transplant.
While a donor match was sought, Jack received twice-weekly blood transfusions at Connecticut Children’s. When it became difficult to get an IV into Jack’s arm—without platelets, his veins couldn’t heal—a catheter called a PICC line was inserted and threaded into a vein near his heart. Two months later, Jack headed to Boston for the transplant. For the next 30 days, his parents alternated weeks with him, while his younger brother, Joe, traveled to visit relatives and family friends.
“At that point, we still didn’t know how the bone marrow transplant was going to be. We were going down a very rough track,” Jack’s mother, Lesley, said. “If anyone could get through it, it was Jack. But not all children fare as well as Jack did. So having to put Joe in a car and not even know what life would be like whenever he got back to Connecticut a month later and how healthy his brother would be, that’s something no parent should ever have to do.”
