Jaxon

Jaxon was diagnosed with ATRT on May 8, 2024, at 20 months old.

Following the birth of his younger brother, Brooks, in April, Jaxon’s family noticed he was experiencing a right head tilt and was off-balance. After bringing these concerns to his pediatrician, Jaxon was referred to the emergency department when his symptoms persisted and he began experiencing morning vomiting. A CT scan revealed a mass on his brain, and Jaxon was immediately admitted to the Hematology/Oncology floor at Connecticut Children's Medical Center (CCMC). A subsequent MRI confirmed a mass located on the left side of his brain between the cerebellum and brainstem. There were no concerns of growth in his spine, and his spinal fluid was negative for cancerous cells. Jaxon underwent surgery on May 8 and achieved a near-total resection.

Jaxon followed the ACNS0333 protocol, completing two cycles of induction chemotherapy at CCMC and three cycles of high-dose chemotherapy with stem cell rescue at Yale New Haven Hospital, followed by proton radiation at Mass General. His family felt fortunate that Jaxon had no new growth following his resection, and his spinal fluid continued to remain negative for any cancerous cells. Tests also confirmed Jaxon has the ATRT-TYR subtype and is negative for the germline mutation.

Reflecting on his resilience, his family shares, "We are so proud of Jaxon for the strength, bravery, and resilience he displays throughout this journey."

Update for Jaxon's 3rd Birthday, August 18, 2025:

Jaxon completed proton radiation in January. In May, almost a year after his initial diagnosis, scans revealed a relapse in a different area of his brain. Thankfully, his spine remained free of disease.

Jaxon transitioned to the MEMMAT protocol and has been handling the treatment well. To celebrate his third birthday, Jaxon and his family took a Make-A-Wish trip to Disney World before he started preschool.

Overall, Jaxon has been enjoying life as an active toddler, which he missed out on last year from being in treatment and not feeling well. He enjoys being and playing in the water, and spending time with his younger brother, Brooks, who remains one of his favorite people (even when they're fighting over the exact same toy!).

Update for Jaxon's 4th Birthday, August 18, 2026:

Jaxon completed proton radiation again in October of last year to the area of relapse. The radiation has shown to be effective, and his scans have been stable. He has another scan at the end of August. There was an area in the recent radiation field that doctors have been watching, and his family is hopeful it is just treatment-related changes. They will have more information at this upcoming scan. 

Jaxon has been on the MEMMAT protocol for almost a year now. He’s tolerated it well, and the family is fortunate to be able to take a break until his next scan. In the meantime, Jaxon finished his first year of Pre-K. His family shares, "We’re so proud of the progress he’s made and continues to make."