My name is Ethan Yan, and I am a 15-year-old who was diagnosed with RB at 2 years old and want to share my Glow story.
Shortly past my second birthday, I had just completed my two-year checkup with my pediatrician, and as any parent would hope, the pediatrician had found nothing abnormal with me. I had been checked from head to toe, and everything seemed to line up correctly. Walking out of the doctor’s office, I was a perfectly healthy two-year-old boy. Just two weeks later, I was with my parents, who were driving to Home Depot at dusk, hoping to get some hardware supplies for a sprinkler installation in our yard. As we sat in the parking lot over the bright streetlights, my parents exited the car, ready to begin their errands. We entered the store, with me sitting in the front of the shopping cart, and quickly made it to the sprinkler aisle. My mom began to examine each of the sprinkler heads, looking for the one that was the correct size for the installation. Without anything to do, my dad began to play with me as I sat still in the shopping cart. I turned my head to the right, and the shining white lights of the Home Depot aisle caught my eye at just the right angle, and in this one instant, my dad saw a glint of white flashing from my left eye.
Suddenly, he exclaimed to my mom, “I think I saw something white in Ethan’s eye!” My mom, who had been carefully perusing the sprinkler installation guide for the correct measurements, looked up toward me. She looked at me, scanning over my left eye.
“There’s no way,” she replied, “it’s just the glare from the light.”
My parents dismissed it at first, and we expedited our shopping, leaving the store just five minutes later, my parents’ concerns having been raised slightly – but not enough to cause panic. As I got into the backseat of our car, the glow of the streetlights and the darkness of the night met to form another glow in my left eye – brighter and more apparent this time. My parents took notice, and they both once again began to carefully check my eye. At first, it seemed innocuous – a small white dot haphazardly dropped in my pupil. However, my parents, who are doctors, knew that this glow was all but harmless – it was likely cancer, unless it could be proven otherwise. The first reaction was denial – we had no family history of cancer, and retinoblastoma was a rare disease.
After our trip, my parents continued to check my eye, and each time, their worry grew. The next week, they brought me in to see an opthamologist, and he confirmed my parents’ worries: there was a tumor in my left eye. It was devastating. The tumor had grown large enough that it shed out into the fluid within the eye, making it too late for traditional chemotherapy drugs to target as the medication could not successfully enter the eye fluid. The doctor delivered the grave news. Because of this, the choice was to enucleate my left eye. My parents say that this was the hardest time of their whole lives, having to make the decision to take their baby’s eye out. My mom was crying the morning of the surgery, and the nice anesthesiologist, who had started comforting my mom, gave some sage advice: “The kid’s anxiety will reflect the parents’ anxiety. Be strong for Ethan.”
They did that, and I have grown up happily with a prosthetic eye. I wish that my pediatrician would have caught my condition earlier so that I would have been able to keep my left eye. As we look back to the pictures even before my second birthday, the glow was there. Yet none of us had noticed at that time. I hope that through KTG’s spreading awareness of leukocoria, that in the future, no family will have to go through this scenario.
