When we started our little family, we never imagined we would be staying up late, learning about things like retinoblastoma, Inter-Arterial Chemotherapy (IAC), strabismus surgery and eye patching. When you picture your life one, five or 10 years out, you don’t think about early childhood cancer or vision loss. You imagine your life with family vacations and carefree summers, like those you had when you were young. When we started our little family, we didn’t imagine we would be taking monthly trips to SickKids Hospital in Toronto or that we would be juggling life with (a hoped!) cumulative total of 10 hours of patching each day. We also didn’t imagine loving two small, amazing, strong people so fiercely. Our journey is one of perspective, persistence, hope, and gratitude. This is our story.
Eloise was born in October 2013 – a wee 5lb 4 oz bundle who loved to be swaddled and rocked. Just after her first birthday, we began noticing her right eye wasn’t always focusing. It was intermittent and not something we really talked about until we started spotting it more frequently. Our family doctor asked us to watch it, and, as the months flew by, we knew something wasn’t right. After two referrals and a misdiagnosis (where we were told what we had been noticing was an optical illusion), we met with a pediatric ophthalmologist, Dr. Carolyn Skov, who was quick to detect that Eloise had a strabismus. She began an eye patching regimen that started at two hours and would eventually increase to six hours a day. She was given glasses (the sweetest pair of purple glasses to match her funky, cool personality) and the diagnosis that if things didn’t improve quickly, she would need surgery.
Things did improve, but not enough. Surgery was booked for September 12, 2016, and we prepared for what that process would be. To fix her strabismus, they would surgically remove the muscles from her eye and reattach them to improve the alignment. As the date drew closer Eloise began to say things like, ‘Eloise is brave,’ and we were so proud of how she was dealing with all the changes in her life (after all, she had a baby sister who was born earlier in the year, too).
The surgery went as well as we could have hoped. Her eye was cherry red and bloodshot with the tiniest stitches you could imagine – but the alignment was perfect, and that was the best news we could have imagined. Like all muscles, the extraocular muscles need to work in order to get strong – there is no quick fix. Eloise had another new lens prescription and more patching to keep up the momentum gained from the surgery.