I had never heard of retinoblastoma until I was sitting with an ophthalmologist with Derek, then 1, while 36 weeks 5 days pregnant with my second child. The Dr. was so kind. He told me to drive to Portland and be the first person in the Casey Eye Institute parking lot the next morning so we could run more testing on Derek. Within 24 hours we met with about 7 doctors and learned so much about childhood cancer of the eye. It was the toughest week of my life. Every doctor I ran into said “You’re about to give birth, and your 1 year old has to have his eye removed the same week?” People around me burst out in tears, but I remained strong.
Derek’s little brother Ben was born on a Saturday, and the following Tuesday, they were removing Derek’s eye. We juggled a lot. While our newborn pretty much slept through the night, we would have to give Derek pain meds throughout the night. Derek’s procedure was a day procedure, driving home from Portland to Eugene that same day was the most unforgettable car ride. We drove almost daily to Portland for the first few weeks. Two months after surgery Derek got his first prosthetic. People always ask him, Is it made of glass? The answer is no, it is made of the same material as dentures. He has had about five made and outgrows them like shoes every couple of years. Derek translates the cost over time into the cost of a Dodge Charger Hellcat.
Now 12, Derek enjoys Boy Scouts and received his arrow of light award. Derek lives with his mom and dad, Christy and Travis, and his little brother Ben on a big farm area that backs to the land of his grandparents. Derek has 5 dogs, a sheep named Bo Peep, and enjoys raising chicks from eggs. He still struggles daily with his blind side and not running into people. Earlier this year he had to have his graft re done (that the part that holds his prosthetic in) which is rare, but it is basically having your eye removed again. He is a strong kid and just wants to finish childhood out camping and playing with friends. He has had well over 600 appointments. We stopped counting.
We learned about Candlelighters two years ago. I had not met another mom with a son with cancer until I met Martha in competitive archery. When we discovered our shared cancer ?experience, she told me about the Candlelighters. It has been cool and life changing. We have met a lot of great people along the way and made so many friends. From the moment we joined, Derek made two friends and enjoys his time with them. We look forward to family camp each year. We cannot keep the kids out of the pool, and they love seeing all their friends.
If I had a wish it would be that no one ever gets retinoblastoma or is affected by it. Get your eyes checked. We take it for granted. We have an eye doctor on every corner in Oregon! There are programs to help with assistance if money is a problem. There are not many symptoms for retinoblastoma. I only knew something was wrong because he had a lazy eye after naps and a white glow to his eye that showed in flash photos. When we got into the Eye Doctor, he already had stage four cancer that was getting close to his brain. We got lucky he is still here. We know others still battling this cancer for years and doing chemo. I am happy that Candlelighters are a thing. Having a kid with cancer or has had cancer is a club nobody wants to be in, but doing it with the support of Candlelighters is a great help for something no one should have to endure.
-told by Derek’s mom, Christy VanMatre McCormick