Our journey began in 2020, when Hannah was an infant and the world was going crazy managing a pandemic. Day care centers were closed, I was working remote, and well child visits were being done virtually. One day, when Hannah was about 10 months old, I was getting ready to change her diaper. As I laid her down on the changing table, the light in the nursery hit her eye at just the right angle and I saw her pupil completely change color. It happened fast and, at that moment, I didn’t give it a second thought. Until it happened again. Somewhere in my gut alarm bells started to go off. I had heard of “the glow”, but in my mind it was something that showed up in photos. I wasn’t looking at a photo, I was looking at my daughter laying on her changing table smiling up at me. It only happened a few times – and each time was so fast I thought I was seeing things.
By June of 2020, in person well child visits had resumed. Hannah had just celebrated her first birthday. Our pediatrician in Ohio, Dr. Gary Williams, conducted her exam and asked me if I had any concerns. I said, “You will probably think this sounds crazy, but occasionally when I lay her down to change her and the light hits her face just right, it looks like her pupil changes color.” As soon as those words left my mouth, Hannah was placed on the exam table, and he was shining a light in her eye. Within moments we were escorted to a darker exam room where he took his time examining each eye. It felt like time stopped. My gut knew something was wrong, but I had no idea what was coming next.
Hannah was immediately referred to Dr. Arun Singh, an ophthalmologist at Cleveland Clinic. Dr. Singh performed an ultrasound of both eyes which confirmed a large mass in her right eye. Just a few days later, Hannah was examined under anesthesia in an operating room. Within an hour of the procedure starting, we received her diagnosis. It was bilateral retinoblastoma. The tumor in her right eye was massive and took up most of the space within her eye. There were 3 very small tumors in her left eye. Dr. Singh immediately treated the left eye using laser and cryotherapy. Hannah’s right eye was scheduled for enucleation.
Just 4 days after her diagnosis, at 12 months old, Hannah underwent the enucleation of her right eye.
Between July 2020 and February 2024 Hannah had numerous exams under anesthesia, 2 MRIs per year, a CT, and more covid tests and pre-op visits than we care to count. The tumors in her left eye recurred for about 18 months post diagnosis. Her care team continued to monitor her closely before deeming her cancer free and a survivor. She is brave and bold and beautiful.
Hannah’s glow didn’t show up in a photo. Flash photography is just not part of our day to day, and I would guess with cell phones replacing cameras, many people don’t have flash photos of their young children. Hannah’s cancer was discovered because my gut told me to speak up. If I had not spoken up at that appointment, her cancer would have been far more invasive given the size and grade of her tumors. Trust your instincts and never ignore “the glow”.
My daughter is a survivor today because somewhere along the way, I heard about the glow.
