Noah

Noah was diagnosed after four ER visits within eight days for unusual behavior and declining health. The symptoms started with a faint arm and leg tremor on one side that would come and go. It was so faint that I wasn’t even really sure if it was really happening or if my eyes were playing tricks on me. Shortly after, he started acting as if he was depressed and only wanted me to hold him day and night. He would just lay next to me, wherever I was on the floor, in the fetal position when I was unable to hold him. He started sleeping a lot and eventually did not want to get out of his crib. Our local hospital thought he was simply constipated and sent us home, advising us to take Tylenol and use enemas and suppositories. The Tylenol would work just long enough to get him out of bed, maybe eat a few bites of something, and play for 10 minutes. He was even admitted for two days for constipation but again released, even though symptoms had not subsided. After being home for only 10 hours, he threw up once and was now squinting, so I immediately took him back to the ER for the fourth time on March 29, 2025. His heart rate was low, but he was sleeping, so they attributed that to him just having a low resting heart rate. They said that the medicine they used to treat the constipation could make him nauseous and again wanted to send us home with Tylenol and more suppositories. This time, I finally asked, "Are you sure this is not neurological?" They said that blood work and everything else did not point in that direction. I just couldn’t wrap my head around him simply being constipated with the symptoms he had. This doctor finally ordered a CT scan since he was squinting and, I think, to appease me. The CT scan revealed a brain tumor, and Noah and I were careflighted to UCSF from our hometown. He had surgery the next day. A few days later, we were told that he had ATRT.

His tumor location was supratentorial. He had a total resection, and it was a localized diagnosis. He does not have the germline mutation. I am still waiting to verify what his subtype is. We spent nine days at UCSF after surgery and then were released back home and were told we would start the ACNS0333 protocol about four weeks later.

We are now just finishing up with round 1 of high-dose chemo and transplant after finishing two rounds of induction chemo. He has had a follow-up scan and lumbar puncture recently, showing no evidence of disease. My new favorite words.

He has not let treatment slow him down. Even on sick days, he sucks it up and looks forward to playing with his older sister, Zoey. She comes to visit him every day for a few hours.

We have had a lot of wins given the circumstances. The wins are what give us hope.