I would like to introduce our story with a little background. I am a 38-year-old retinoblastoma survivor. In 1984, my mom was able to capture the glow in my right eye with flash photography. This Glow led her to discover my cancer, and quite possibly saved my life. As a result, I have always been familiar with “the Glow”.
Later in life, I married and moved to Los Angeles. My husband and I wanted to start our own family. However, I was concerned that I may carry the RB1 gene and could possibly pass this along to my child. I expressed these deep concerns to both my reproductive endocrinologists and my obstetrician. They all told me (without suggesting any genetic testing) that I had an isolated case of retinoblastoma as there aren’t any other known cases in my family. They reassured me that I would not pass this cancer on to my child.
After experiencing a few years of infertility, two reproductive endocrinologists, and three cycles of In Vitro Fertilization, I was finally pregnant. Our son Rocky was born completely healthy. My worries about passing retinoblastoma to Rocky would not subside. I expressed these concerns to Rocky’s pediatrician. Again, I was reassured that he was free of cancer and was not offered genetic testing for him.
I only learned that I carry the RB1 gene mutation after Rocky, at 9 months old, was diagnosed with retinoblastoma. I am still stunned until this day how little the medical professionals I consulted knew about retinoblastoma and the RB1 genetic mutation.
Since I have always had a suspicion that Rocky could develop RB, I had remained alert to any signs that it was developing. I became very concerned when Rocky’s right eye began to veer outward. I informed my pediatrician of his wandering eye and was told that if Rocky were to develop a tumor, she would be able to see it with a light wand. However, I was still not convinced. I took Rocky to an ophthalmologist for a thorough exam. The ophthalmologist dilated his pupils and told us he saw a lesion in Rocky’s right eye but was unable to tell us for certain if Rocky had RB. The same evening, I took an intentional flash photo of Rocky to try capture the Glow. There it was, a clear golden glow. My heart sank. All I wanted to do was to endlessly scream. There was so much pain and guilt, the worst rumination I have ever experienced.
With the help of my pediatrician, we were able to see the RB specialists at Children’s Hospital in Los Angeles. Two days later he was diagnosed with unilateral RB. Pediatric ocular oncologist Dr. Jesse Berry and her team at CHLA were really the light at the end of the tunnel for us. She has and continues to shed so much knowledge, care and true dedication to treating RB in her young patients. Rocky was successfully treated with monthly EUAs, laser treatments, and three cycles of systemic chemo.
We are currently two months out of chemo and still under the watchful eye of Dr. Berry. We visit her every four weeks. Rocky’s once large tumor is now calcified scar tissue, which Dr. Berry is continuing to shrink with laser treatments. We were told that the chances of the cancer reoccurring is still a possibility, but for now, we are so grateful to have a brilliant, spunky, and very loving cancer-free Rocky!