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 with a tired baby, dotted with purple bruises from IV starts (and fails) and dark circles under her eyes from a body fighting to get strong. We had a nurse come to our house each day to administer injections, and we took her for blood tests every two days while her immune system hit its lowest levels. 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 tumour 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 the tumour (a ‘C’ on a scale ranging from ‘A’ to ‘E’) 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. Unlike systemic chemotherapy, where there can be many side effects (such as hearing loss and compromised immune systems, just to name two), IAC posed fewer risks after the procedure was complete. 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, wrapped in her soft woodland-printed blanket, we would hand our sweet baby to the nurses for a surgery that, at times, took six hours. Sitting in the surgical waiting room, we waited as they inserted a line through Eleanor’s femoral arteries (alternating with each surgery), beginning in her groin and going all the way through to the back of her eye, where they could apply the targeted chemotherapy that would ultimately increase her quality of life between treatments. It was a complicated surgery, especially on someone so small. After each procedure, we had to keep her lying flat for six consecutive hours to ensure she wouldn’t bleed out through the surgical sites. We were admitted twice. Eleanor’s face swelled like a balloon to the point where she didn’t look like herself, but her beautiful blue eyes always radiated a joy that kept us all going.
After four rounds of chemotherapy, 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 tumour. Then, in July, after nine months of cancer treatment, they told us they could not see any active cancer cells in her eye. We were relieved…but at the same time, we were scared. It’s a funny feeling because we don’t feel quite safe yet. Every six to eight weeks, Eleanor will still have EUA’s to monitor all of the cells in her eyes. We attempt six hours of patching for her a day – no easy feat for an active toddler who doesn’t mind ripping her patch off and lovingly calling it ‘garbage’ as she kindly gives it back to you – and we wait. We wait for her bad eye to regain strength and we wait to make sure the cancer doesn’t return. Assuming the cancer keeps its distance, in five years, Eleanor can say she is cancer-free. Her retina will forever show the scars of a battle well fought – a battle she won.
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 both our girls are full of these days, it is courage. Together, we need each other, and together, I think we make a pretty good team. These brave souls shine with hope and optimism. They show us what it means to be strong. How truly lucky we are to live in a place and a time when vision, eyes, and lives can be preserved and saved. Over in our little corner of the world, our gratitude is immense.