Koen

Koen was diagnosed with ATRT at 16 months, after months of balance issues when walking and an acute bout of vomiting. He was a typical, happy toddler who loved bees, birds, books, anything with wheels, and being outside.

On November 9, 2021 his doctors discovered a large mass in his cerebellum, pushing on his brain stem. He had a near total resection a week later, and was diagnosed with ATRT a few days after that.

Upon waking from surgery Koen was unable to move, speak, eat, or even breathe for himself. He slowly began the grueling process of recovering and regaining his faculties.

After a month of recovery he started his first of three rounds of induction chemo, to be followed up by three rounds of high-dose chemo with three stem cell rescues.

Koen completed four weeks of intensive, in-patient rehab while simultaneously receiving radiation therapy, completing treatment in August of 2022.

Although the surgery to remove his tumor left Koen with significant global delays and long-lasting side effects, he continues to amaze and endear his friends and family with his sweet soul and his determination to relearn to walk and talk.

He started preschool in the fall of 2023, where he enjoys participating in circle time and playing with his classmates. Koen loves riding his trike, reading books, swimming, and listening to people sing.

All of Koen’s post treatment scans have been stable.