Jaxon, 2 Years, Atypical Teratoid Rhabdoid Tumor (ATRT)

We had the pleasure of meeting adorable two-year-old Jaxon, who is bravely fighting brain cancer for the second time. Jaxon is incredibly strong and has a remarkably positive attitude toward life. He completed building his LEGO set just a few hours after it was delivered and thoroughly enjoyed every moment of it.

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Here is his little story about his diagnosis and treatment journey from his Mom.

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Jaxon was diagnosed with Atypical Teratoid Rhabdoid Tumor (ATRT), at 20 months old in May of 2024. Jaxon was experiencing a right sided head tilt, clumsiness, and vomiting primarily overnight. This was brought to Jaxon’s pediatricians attention and after almost a week of it not improving, Jaxon’s pediatrician urged us to take him to CCMC to have a CT Scan. We were informed that Jaxon was diagnosed with a stage 4, rare and aggressive brain tumor just two and a half weeks after Jaxon’s baby brother, Brooks arrived. Jaxon was immediately admitted to CCMC and had brain surgery a few days later where they were able to remove the whole tumor. Jaxon then went through two cycles of induction chemotherapy at CCMC, three cycles of high dose chemotherapy with stem cell transplants at Yale, and 6 weeks of Proton radiation at Mass General. Jaxon was done with treatment in early January of this year, but we unfortunately received the news Jaxon relapsed after an enhancement was found in his brain. Jaxon started his new treatment plan this past week, the Memmat protocol which is daily oral medication and low dose chemotherapy and weekly intrathecal chemotherapy.

Throughout this all, Jaxon has shown us true strength and bravery. He’s incredible and we are so proud of him.

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