In part 2 of the 3 part Marlow family story, mom Kari delves into her family’s experience with Eleanor’s eye health journey, and how a routine medical appointment completely changed the course of their lives. Here is the continuation of her family’s story in her own words.
In the meantime, we had a second daughter, Eleanor, who was born in January 2016. Tiny and perfect, Eleanor was born with the most joyful disposition and the brightest eyes you ever did see. Later that year, during a routine well-baby visit, our family doctor noticed what she described to be a ‘slow light reflex’ when she flashed a beam of light across Eleanor’s eyes. Not knowing what that meant (and Google being of little help with such a search), we waited for the referral to see our favourite ophthalmologist, Dr. Skov, only this time, for the baby.
We made the appointment on October 18, 2016. It was a Tuesday. It was Eloise’s third birthday, and we had plans to go celebrate after our visit with Dr. Skov. It was the day that changed our lives forever.
At first glance in her eyes, Dr. Skov knew something wasn’t right. We moved down the hall to another room. Using different tools, she looked again. She asked us to move to one last room. We wrapped Eleanor in a blanket and sang to her while Dr. Skov looked in her eyes with a special magnifying glass. It wasn’t 30 seconds before she said, “she has retinoblastoma.”
Keith and I looked at each other in disbelief. Keith looked at her and said, ‘so you’re saying she has cancer?’
It was exactly what she was saying. As quickly as she had made the diagnosis, she said that she couldn’t help us in Calgary and we would have to travel to Toronto immediately to begin treatment at SickKids. Just like that, everything changed. Forever.
We rushed our baby, who had shown no signs of being sick, to the Alberta Children’s Hospital for eye imaging and quickly booked an MRI – they needed to know if the cancer had passed from her optic nerve into her brain. Fortunately, it hadn’t.
By Thursday night we had packed our bags and flew to Toronto on the latest flight so we could arrive and be ready for exams Friday morning. We met with a skilled and compassionate team of doctors led by Dr. Brenda Gallie and Dr. Sameh Soliman. They answered our many questions and consoled us as we began to comprehend the reality of Eleanor’s situation. The following Thursday, in a small room with a muted coral couch and beige medical equipment lining the walls, they hooked Eleanor up to a systemic chemotherapy cocktail. For two days we held her and sang. We cried. We stroked her beautiful hair that we knew she would eventually lose and watched her sleep. We played with her when she awoke and tried to keep her IV lines straight. We prayed that everything would be okay.