Huxley is a very active happy boy. He loves being outside and going on walks with his brothers and sister. He loves music and will sing along to almost anything. However, his favorites are The Wheels on The Bus and You Are My Sunshine. He also loves to cuddle and watch his show Ladybug and Cat Noir.
Huxley was diagnosed with Atypical Teratoid Rhabdoid Tumor (ATRT) in July of 2021. He also has Phelan Mcdermid syndrome; one of the symptoms of this disability is trouble with balancing, however, around Huxley’s 3rd birthday his balance got worse along with his eyesight and ability to communicate. Since he does have Phelan Mcdermid syndrome, it puts him at risk for NF2 tumors so he gets an MRI every 2 years and on one of the routine MRIs we found a mass. We repeated the MRI six weeks later to see if the mass had grown and it had. Huxley had surgery to remove the tumor and then 2 weeks later we got our diagnosis of ATRT.
Huxley’s treatment plan is 2 rounds of induction chemotherapy and 3 rounds of high-dose chemo with stem cell rescue. He will then have 6 weeks of radiation and possibly a year of maintenance therapy.
Cancer has changed our life significantly. We have had to go down to one income and Huxley has three siblings that miss him terribly when he has to be in the hospital.
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