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 by three rounds of high-dose chemo with three stem cell rescues.

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

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

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 how 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.

Update for Koen's 5th Birthday ~ July 2025

Since completing treatment in August 2022, Koen has continued to have clear scans and make slow and steady progress in his recovery. This spring, he finished his last year of preschool and will be starting kindergarten in the fall!