My son, Ethan, was diagnosed with ATRT brain cancer in November 2022. This is a very rare and aggressive type of brain cancer. Ethan was a happy and seemingly healthy 2.5-year-old who was meeting all of his milestones. Suddenly, during the first week of November 2022, he started having trouble walking. He was having trouble with his balance and within a few days was starting to crawl again. This was the only symptom he had. We took him to his pediatrician who referred us for an MRI. To our shock and devastation, the MRI showed a large tumor in his cerebellum and he had hydrocephalus from the fluid buildup in his brain. Ethan was immediately admitted to the hospital and we were emergency transported in an ambulance from the hospital at Mizzou to St. Louis Children’s Hospital. After a biopsy of the tumor, we received the devastating diagnosis of ATRT brain cancer.
We spent 130 nights in the hospital during Ethan’s treatment. Ethan had his tumor resection surgery and multiple rounds of brutal chemotherapy including a stem cell transplant.
Ethan was treated at St. Louis Children’s Hospital which is about 2 hours away from where we live. During this time my husband and I switched off being in the hospital with Ethan or being home with our older son, Jonah, who is 6 years old. Our family was separated during this time for about 5 months. This was a very difficult and challenging time.
Ethan’s cancer diagnosis has changed so much. We miss our life before his diagnosis and we never thought anything like this could happen to our family.
Ethan’s diagnosis, treatment, and spending so many nights in the hospital were very traumatic for our whole family. Right now we are focusing on cherishing the time we have together and helping Ethan heal from his treatment. We also try to maintain a sense of normalcy for our older son, Jonah.
Ethan recently had his routine MRI on October 18th, 2023 and he had clear scans! His type of cancer is very aggressive and there is a high chance of relapse, so this is amazing news!
Hope session by Ashley Shippy Photography | Facebook | Instagram