as written by his mother, Amanda Devaney
Samuel was a very healthy little boy, never having as much as an ear infection for the first three years of his life. But one day right before Christmas of 2022, his father and I began to notice that Sam’s left eyelid seemed to be drooping. It was very slight at first, but clearly there. Within a few days, it became quite noticeable in the Santa photos we took of him.
Alarmed, we brought Sam to his pediatrician to determine what may be causing this droop of his lid. Sam’s pediatrician was concerned as well and not knowing what the cause was for certain, decided it would be best to “rule out the bad stuff” through imaging. We live in Nazareth, Pennsylvania and were sent to the closest available Children’s hospital, Children’s Hospital of Philadelphia (CHOP).
At CHOP Sam was given a CT and MRI. Unfortunately, through this imaging, they found the “bad stuff”. Three doctors met with us and explained that Sam had a tumor growing near one of the nerves behind his left eye. The tumor was small, about the size of a pea. It was fully in the sheath where the nerves travel to the eye, not in the eye itself or in the brain. But it was large enough to put pressure on the oculomotor nerve responsible for eye and eyelid movement, therefore causing his “droop”. Sam would need a biopsy to determine first if the tumor was cancerous and if so, what type of cancer it was.
A biopsy was attempted on Sam but his tumor was so small that the surgeon was not confident that he was able to extract cells from the tumor as the pathology came back as “normal”. It was decided to wait six weeks to let Sam heal and see if the tumor remained before trying again.
By the time this second biopsy was administered, the tumor had grown exponentially. His eyelid was now completely shut at all times. We knew things were about to get scary. This new biopsy revealed that Sam had a cancer called Atypical Teratoid/Rhabdoid Tumor (AT/RT). AT/RT is rare, aggressive, and typically affects young children in their brain and spinal cord. Sam’s tumor was unusual in that it developed in his eye.
Sam needed immediate surgery to remove (enucleate) the tumor and along with it, his left eye. We were informed that Sam’s eye had been damaged and made nonfunctional by the cancer. He started intensive chemotherapy right after the enucleation, followed by six weeks of proton beam radiation. He then had another year of maintenance chemotherapy in the hopes of eliminating any remaining cancer cell.
Sam finished treatment in October of 2024. He receives quarterly scans to check for any relapse. So far there has been no evidence of disease in these scans and we hope that it will continue to stay that way always and forever!
Despite a very difficult nearly two years of treatment, Sam has been a true warrior. He is outgoing, silly, curious, and incredibly intelligent! He loves building things, swimming, baking, and reading. He receives physical and occupational therapy to adjust to life with one eye and is excited about getting a new prosthetic eye after he heals a bit more…. hopefully this summer!
We are so thankful to his amazing team at CHOP including Dr. Belasco, Dr. Revere, Dr. Storm, Dr. Cole, Dr. Desai and many more. As well as his best friend from Child Life, Miss Julie, and ALL of his favorite nurses. We learned so much from each of these amazing caregivers, they were pivotal in helping us fight this battle with confidence, strength, and maybe a few Legos!
