When I was eight months old, my parents noticed that my left eye was not tracking with my right eye.
They took me to my pediatrician and were told it was just a lazy eye and nothing to worry about. My parents still felt there was something more. Concerned, they took me back to my pediatrician three more times and each time they were given the same answer. My parents had never heard of Retinoblastoma, or “the Glow”, as this was not common knowledge at this time. But they could not shake the worry that something more was going on.
A few weeks before my first birthday, my mother had an eye appointment for herself. She took me with her to this appointment and asked the ophthalmologist to look at my left eye. At first the doctor agreed with my pediatrician and told my mother that it was probably just a lazy eye. However, after a complete exam, he became concerned. He told my mother she needed to take me to CHEO (Children’s Treatment Centre of Eastern Ontario) for further tests.
Within a few days we arrived at CHEO in Ottawa. Here, my mother was told that I had a blastoma, a tumor, in my retina.
We were given two options for treatment. The first was to laser the tumor, however they did not think this was the best course of action as the tumor was very large (at this time it was 2/3 the size of the eyeball!). The second was to have the eye enucleated (removed). Since the cancer had not yet spread outside of the eye, they recommended this option. My mother decided to have the eye removed and the surgery was set for the day after my first birthday.
While recovering I had bandages wrapped around my head. Being only one, these bothered me and I kept taking them off. Since I would not keep the bandage on, a clear plate was put in my socket to protect it while it healed. A few months later, I had my first prosthetic eye which I wore until I was about seven. Since then, I have have had annual appointments to have the prosthetic resized as necessary. So far I have had three different prosthetic eyes. Other than some issues with not having depth perception, I have adapted well to having vision in only one eye.
In April 2017 I found out I was pregnant. With this new life developing, I started to worry if my child would have Retinoblastoma. I decided to have some genetic testing done and discovered I do not have the mutation for genetic Retinoblastoma.
When I was diagnosed with Retinoblastoma, the doctors told my parents about “the Glow”. My parents looked back at old photos and noticed several that showed “the Glow”. They did not know at the time that this was a sign of the cancer that was developing. I hope by sharing my story I will help inform others of “the Glow”. Hopefully by doing so, parents will recognize “the Glow” and be able to get their children the care they need more quickly.
I have now been cancer free for nearly 20 years. I am very grateful to all of the doctors and nurses who helped me along the way, especially Dr. Denis Dubuc for first discovering the tumor, and for my team at CHEO, Dr. Clarke, Dr. Rocco and Dr. Musts!