Diagnosis: Retinoblastoma
I was only 21 months old when my family was spending our last weekend of summer at our house in the Hamptons for Labor Day Weekend of 1997. Over that weekend my mom started to notice a silver flash in my right pupil. The flash could only be seen in certain angles and only lasted a few seconds before it would disappear.
My mom thought this flash of light was strange, but didn’t pay much attention as it was infrequent and fleeting. However, one evening in a dimly lit bathroom at a pizza parlor, she realized that the flash wasn’t going away. She had a sense that this was a sign of something more and pointed out the Glow she was seeing to my father. He too felt there was something wrong.
Once back in New York the following Tuesday, my parents took me to my pediatrician. Very early in the pediatric exam the doctor turned to my mother and said she had some serious news. She believed I had a rare form of cancer that affects the retina called Retinoblastoma. We were referred to Dr. David Abramson who at the time was at New York Presbyterian Hospital but later moved to Memorial Sloan Kettering. Just two days later Dr. Abramson confirmed the diagnosis of Unilateral Retinoblastoma and we soon started a chemotherapy regimen.
Doctor Abramson asked my parents to look back at some of the photos that were taken over the summer. My mom is a photographer, so there were many to look at. My parents were shocked to discover that there was a Glow in almost every photo where a flash had been used. No one had ever noticed this silent sign that cancer was growing in my retina.
After two months of chemotherapy the scans showed that although the tumor had shrunk it had also fragmented. It was very close to the optic nerve and brain. Therefore chemotherapy would need to stop and my treatment options were now limited to radiation, which would blind me or enucleation (removal of my eye). The next week on November 15th my right eye was enucleated. I have been cancer free ever since.
As long as I can remember I have wanted to help other children fighting their own cancer battles. When I was just 7 years old I received a make your own book kit for my birthday. I wrote about my life to date called “My Retinoblastoma Story”. Dr. Abramson loved the book so much that he purchased over 500 copies and handed it out to newly diagnosed families. For the past five years I have been working at Sunrise Day Camp in Long Island. This is the world’s first full-summer day camp for children with cancer and their siblings, provided completely free of charge . I also volunteer with quite a few nonprofit organizations such as Candlelighters NYC, a group that offers family support while their children are fighting for their lives, as well as Whip Pediatric Cancer and The Scarlett Fund both of which support and raise funds for pediatric cancer research for Memorial Sloan Kettering Hospital. No family should face this battle alone.
Through all of these initiatives I have become very close with numerous families and have loved far too many children whose lives were stolen by cancer far too soon. I will never give up fighting for these kids because they deserve a future like the one I have been lucky enough to receive. I hope that by sharing my story I will help another mother, father, aunt, uncle or friend notice the Glow of one child in need. Together we can help save vision and lives!
