Diagnosis: Retinoblastoma
Our journey is one of perspective, persistence, hope and gratitude. This is our story.
Our first child, Eloise, was born in October of 2013 – a tiny bundle who loved to be swaddled and rocked. Just after her first birthday, we began noticing her right eye wasn’t always tracking. Our family doctor asked us to watch it, and, as the months flew by, her eye began wandering even more and 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.
Dr. Skov was quick to detect that Eloise had advanced strabismus. She began an eye patching regimen that started with 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. After two years of patching and glasses, things did improve, but not enough. Eloise had corrective surgery in September of 2016. The surgery went as well as we could have hoped. Her alignment was perfect and that was the best news we could have imagined!
In the meantime, we had a second daughter, Eleanor, who was born in January 2016. Eleanor had the most joyful disposition and the brightest eyes. Later that year, during a routine well-baby visit, our family doctor noticed what she described to be a “slow light reflex” while flashing a beam of light across Eleanor’s eyes. Not knowing what that meant, we waited for the referral to see our ophthalmologist, Dr. Skov, only this time, for the baby.
Dr. Skov began her exam in the room we were well acquainted with from previous visits. At first glance in her eyes, it was clear that Dr. Skov was concerned. We were asked to move down the hall to another room. Using different tools, she looked again. Once again, the concern was evident in her demeanor. She asked us to move a final time, to a room at the end of the hall. 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.”
Retinoblastoma?
My husband and I looked at each other in disbelief. He asked, “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 immediately travel to Toronto to begin treatment at SickKids.
And 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. The next day, we packed our bags and flew to Toronto.
While on the plane, we took Eleanor into the tiny bathroom. As we looked at our sweet girl under the fluorescent lights we saw a “Glow” in her eye. There it was, the sign we had not noticed before. Leukocoria (the Glow) is an unusual red eye reflex that will appear as a white or gold pupil in flash photographs or, as in our case, when light hits the retina at a certain angle. This Glow is an indicator of more than twenty different visual conditions, including Retinoblastoma. We were shocked and wondered how long the Glow had been there.
Once at SickKids, 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. We were told that Eleanor’s tumor was a “C” on a scale ranging from “A” to “E”. We were also told that her particular tumor was very aggressive and would need to be treated immediately.
The following week, Eleanor was administered one round of systemic chemotherapy. 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 prayed that everything would be okay.
Just twenty children in Canada are diagnosed with Retinoblastoma each year. More than half of those cases are genetic. Eleanor’s is not. “It’s exceptionally bad luck,” they told us. And it was. It is. How unimaginably cruel it is for a baby to have cancer. Our hearts were broken.
After 11 days in Toronto, we made the trip back to Calgary and just three weeks later we were back on a plane to Toronto for her next round of chemotherapy, but this time for something new.
Eleanor’s tumor was on the move, but where it was on her retina showed promise. The fact that she had a non-hereditary cancer in one eye only, combined with her age and stage of tumor made her a good candidate for Intra-Arterial Chemotherapy (IAC). IAC is a type of chemotherapy where they target cancer zones directly, as opposed to the whole body. Our small and mighty baby was the perfect candidate to be the first child in Canada to have her retinoblastoma treated primarily with this method.
For the next three months, we would hand our baby girl to the doctors and nurses for a surgery that, at times, took six hours.
After four rounds of IAC, the next step was laser and cryogenics. For five months they performed an Exam Under Anesthesia (EUA) and used laser and cryo to target all of the active areas of the tumor. Finally, after nine months of cancer treatment, they told us they could not see any active cancer cells in her eye! She was in remission.
Eleanor is an incredibly strong little warrior who has won her battle with RB. She is left with very limited vision in the affected eye, but she was able to keep it! Over time, vision loss caused Eleanor to develop a strabismus. Like her sister, she needed corrective surgery (this time done by our new pediatric ophthalmologist, Lisa Lagrou). The surgery was a success and Eleanor’s eye was realigned beautifully. Eleanor patched from the time she was 10 month old until 5 1/2 years old. The patching was very successful (albeit very tricky for a baby), but had corrected all that it could in this time.
Eleanor is now six years old and remains in remission! She is in Kindergarten and far exceeds all of the developmental milestones. She loves to write and illustrate her own books, creating many imaginative stories with her own characters. She is funny, fiery and clever. She is the jokester in our family and, with her sisters (we added a third baby girl in July of 2019), she fills our home with love, energy and life.
They say that “Having hope will give you courage.” If there’s one thing we’re full of these days, it is hope. If there’s one thing all our girls are full of these days, it is courage.
Over in our little corner of the world, our gratitude is immense.
