Jaxon

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

Following the birth of our second son, Brooks, in April, we noticed Jaxon was experiencing a right head tilt and was off balance. We initially brought these concerns to our pediatrician who then encouraged us to bring Jaxon into the emergency department where they requested a cat scan after Jaxon’s head tilt and balance was not improving and he began experiencing vomiting primarily in the morning. It was then we learned following a cat scan that our son had a mass on his brain. Jaxon was immediately admitted to the Hematology/Oncology floor at Connecticut Children's Hospital (CCMC) for an MRI to be completed the next morning. Once the MRI was completed, we learned that Jaxon had a mass located on the left part of his brain between the cerebellum and brainstem. There were no concerns of growth in his spine, and his spinal fluid was negative for any cancerous cells: We were told that he would require surgery. Jaxon underwent surgery on May 8th and underwent a near total resection.

Jaxon is following the ACNS0333 protocol. He completed two cycles of induction chemotherapy at CCMC and recently completed his first of three cycles of high dose chemotherapy with stem cell rescue at Yale Hospital and will finish off his treatment with proton radiation at Mass General.

We are fortunate that Jaxon has not had any new growth since his resection, and his spinal fluid continues to remain negative for any cancerous cells. He is also negative for the germline mutation and has ATRT-TYR.

We are so proud of Jaxon for the strength, bravery, and resilience he displays throughout this journey.