Colin's Story
Colin was born in February 2022 and was diagnosed with cystic fibrosis (CF) shortly after. By May of that year, he contracted respiratory syncytial virus (RSV), leading to reactive airway disease and a series of viral infections that persisted until January 2023.
Over the next year, Colin’s health worsened. By June 2023, he started showing reluctance to climb stairs, and eventually stopped walking and refused to eat.
This alarming behavior led to the discovery of a spinal tumor, which required immediate surgery for removal. After the surgery in July 2023, the tumor regrew, resulting in an emergency transfer back to Johns Hopkins Children’s Center for chemotherapy.
From August 2023 through May 2024, Colin endured 14 cycles of chemotherapy, each one met with complications requiring hospital admission. In November and December of 2023, he underwent proton beam radiation five days a week to target the tumor area, with general anesthesia each time.
Next, Colin began biweekly phlebotomy sessions to manage iron overload from previous blood transfusions, alongside quarterly magnetic resonance imaging (MRIs) under general anesthesia to monitor the tumor. Unfortunately, in June 2025, doctors found that Colin had developed acute myeloid leukemia/myelodysplastic syndromes (AML/MDS) due to his earlier chemotherapy. Colin underwent induction chemotherapy for his new diagnosis in July, followed by a bone marrow transplant in August.
By September 2025, Colin experienced engraftment, the process of transplanted stem cells producing healthy blood cells, and he was discharged. But within weeks, he developed graft versus host disease, which required increased immunosuppression and phototherapy three times a week.
Colin continues to demonstrate unimaginable strength and resilience through the ongoing challenges of his complex condition.