After my annual eye checkup at the Dean McGee Eye Institute last week (nothing’s changed), my doctor recommended I see a geneticist for further testing. Because Stargardt’s Disease is just one of many similar vision conditions, they can’t definitively diagnose it without performing genetic testing. Part of me thinks that because there’s no cure or treatment there’s not much point in having the test performed, but if or when a treatment is ever developed, a person would need to have already had genetic testing performed. In terms of how this may eventually help my prognosis, I put it up there with having my head cryogenically frozen on the slim chance that they can cure Stargardt’s Disease in the future. (Hopefully the same surgeon will have pity and reattach my noggin to a slimmer donor as well.)
As we were preparing to leave I checked my phone and found a voice message informing me that the geneticist rescheduled for next week. This gave us a little free time before our next planned stop: Gage’s bell ringing ceremony.
Our very good friends Tim and Dawn have kids close in age to our own. Three years ago, their 10-year-old son, Gage, was diagnosed with leukemia. The sadness I felt was, I’m sure, one-millionth the amount of sadness they felt, and I felt a ton. Tim and Dawn, along with Dawn’s mom, Carol, are some of the nicest people we know. We’ve known the three of them for 20 years now. We even went on vacation to Las Vegas a few years ago with Tim and Dawn. When I was younger, I imagined my friends and I having kids the same age and growing up as friends, too. This is something I didn’t imagine.
Between chemo and blood transfusions and everything else I lost track of how many times Gage visited the hospital over the past three years. It’s more times than everybody in my family has gone in their lives, combined. For a while it seemed like Gage was getting sicker and sicker, and then he started getting better and better. His hair fell out, and then it came back — longer, this time. A couple of years ago when I saw him, no one was allowed to touch him without thoroughly washing their hands first. Today, he seems as normal as any other rascally kid.
Today was Gage’s bell ringing ceremony. After three long years (almost a third of his life), the doctors say his cancer is in full remission and he has survived both the cancer and the treatment. With all of his classmates, family, and local friends gathered, Gage grabbed the rope and rang the bell three times, symbolizing both an end and a beginning.
The ceremony took place on the 10th floor of OU Children’s Health Center. Ten feet from where I stood was another small child being treated for cancer. As people gathered the kid put on his headphones to drown out the noise and began playing a game on his phone. When I mentioned I felt bad for disturbing this child, I was informed that the bell ringing ceremony is actually good for them — a sign of success, a ringing of hope.
Gage hugged and high-fived everyone as we made our way downstairs to share some cookies before heading out our next doctor’s appointment. Susan took a picture of Gage and Mason together and I’ll tell you what, if the worst thing that ever happens in our family is that I go blind in one eye, I’ll never complain again.
I don’t want anything to happen to my special family members…….and I pray every day that they find a cure for your eye disease.