At 2 months of age, we thought Carson was blind. At 4 months of age, we were referred to Neurology to investigate his hypotonia – he wasn’t progressing as he should. His head circumference grew 9 cm since birth, he couldn’t hold his head up, his vision was poor, and he was like a limp noodle with lack of muscle development. All results came back perfect, but his MRI at 6 months showed some malformations in his cerebellum which would explain his symptoms. Our PT noticed his soft spot was taut (not quite bulging), so we were sent per neurologist through the ER for a shunt to be placed four months later. CT confirmed hydrocephalus, but they ordered an MRI to compare as it was a large buildup in such a short time frame and wanted to compare same imaging technique. The next morning as I was bed bathing my 10-month-old, the doctors came in and said we needed to talk. I continued bathing Carson until the doctor demanded we sat down (as the nurse was pulling in two chairs). My heart dropped to the floor. I was expecting something awful, but never thought I would hear “Your child has cancer.” It hit me like a rock. So, the next day, we were sent for removal and biopsy. The surgeon only got about 50% of the tumor. Luckily, there was no spread. 3 weeks later, we started chemo. We were only out of the hospital for maybe 20 days during the first three “outpatient” cycles. We followed with three high dose rounds with triple autologous stem cell transplants. He was so, so sick during the six months of treatment – so nauseous and weak but in such good smiley spirit! The bulk of the tumor still remained so we were referred for proton radiation. A second tumor removal was performed, and it was completely successful (all the cells were inactive! – the chemo killed it!!), but we still went for proton radiation as per suggestion by both teams for risk of relapse to drop significantly (his tumor was super aggressive as in 4 months it was not traced to completely blocking his 4th ventricle). We completed 6 weeks of proton radiation to tumor bed only. He is now almost 4! Conquering every obstacle in his way! He had strabismus surgery in both eyes to correct his eye alignment post-treatment. He can walk independently with his walker. He is just starting to verbalize some! He knows all his colors, letters, numbers and shapes. He still receives all services – pt, ot, speech, and feeding therapies. He goes to school part-time. He is our true hero!
Carson J
