A question I’m often asked is, “How did it all start?”
It starts with our daughter Ellie—our healthy 10-year-old daughter who played on every sports team. To us, she was the picture of vitality.
One day we noticed what we thought was an innocent bump on her left cheek. Our general practitioner (GP) wasn’t concerned, thinking it was just a benign tumour made of fat tissue. We didn’t think too much of it until it started to grow. Ellie didn’t like how it was changing her face, so we made an appointment with a plastic surgeon to have it removed. Like our GP, he also assumed it was a little benign cyst and that it was nothing to worry about.
Two weeks later, we visited our plastic surgeon for Ellie’s routine post-op meeting. I observed the nurse’s energy and knew that something was wrong. It was the way his eyes darted between me and his computer screen that made the air in the room shift. At that exact moment, I felt my world fracture.
The plastic surgeon took me into the hall and told me Ellie’s biopsy was abnormal and needed to be sent away for more tests. Ten days later, we received the devastating news—our little girl had a type of cancer called rhabdomyosarcoma.
Struggling to make sense of our new reality, we met Arvinder, our POGO Interlink Nurse. When she called to book her first home visit with Ellie, I remember confessing to her that I was terrified and didn’t know how to get through this. She quickly replied, “Don’t worry; you’ve got me now, and I’m going to get you through this.”
Arvinder kept her promise. She’s made multiple home visits; connected us to every single resource we can access; met with Ellie’s teachers and explained to them how her treatment has affected her learning, academics and more, and, above all, she held our hands every step of the way.
About two months into Ellie’s treatment, we were at the hospital for a long day of chemo. Our oncologist asked me to step out and meet her in a small room down the hall from where my husband was sitting bedside with Ellie.
She calmly told me that Ellie’s biopsy indicated she may have a genetic mutation that would make her chemo-resistant. If Ellie was positive for this gene, it meant her treatment plan and chances of survival would change drastically. This also meant that our son, Oakley, might carry the same gene, making him vulnerable to a cancer diagnosis as well. Once again, the air in the room changed, and I was thrown even deeper into a place of fear and uncertainty.
Returning to the room where Ellie was receiving chemo, I had to sit across from my husband and text him every word I could remember our oncologist saying. My hands were trembling while I wrote to him, watching his face absorb this news two feet away from me. We were unable to react, hold each other or say anything without Ellie catching on. Instead, we just sat there silently while tears filled our masks.
Something interesting happens when you’re faced with the traumatizing and terrifying possibility that you could lose your child. It turns out we have this hidden reservoir of strength buried deep inside us. All parents have it, I assure you. And when your child’s health or wellbeing is threatened, the doors to this reservoir get ripped off their hinges and you are flooded with a strength and resilience you didn’t know you had.
During the seven agonizing weeks that we waited for Ellie’s genetic test results, we waited to find out if our daughter would survive this or not. We made her comfort our primary focus, trying to find as many moments of joy and peace as we could. We did everything we could to turn our fear and grief into love and beauty for our daughter. And it worked. When Ellie looks back at her treatment, she mostly remembers it as a cozy, warm and family-centered time. She remembers us all cocooned on the couch, sitting by the fire, taking long warm baths (which we did every 45 minutes, day and night, to relieve the pain). We did everything we could to make her feel hugged, when in reality, we were clinging to the edge trying to maintain our grip.
Finally, I got the call confirming Ellie was negative for the genetic mutation, and we were cleared to proceed to our next phase of treatment—precision radiation called proton therapy, which was only available to us in Jacksonville, Florida. This moment will go down as the most glorious release, the greatest exhale a human being can ever make. It changed every breath I’ll ever make again, and it changed my entire life.
When we returned home to Canada after two months in Jacksonville, Ellie continued chemo at the POGO Satellite Clinic at Credit Valley Hospital—a warm and lovely treatment space not too far from our home. Her nurses, Lindsay and José, walked Ellie through every step of the process and gave her control over her treatment. We saw the same faces every week, which helped alleviate Ellie’s fears. And when she would get a fever in the middle of the night, we had our cozy, familial place to go to.
It’s been 10 months and Ellie’s scars have healed, her hair has grown back and she is back in school and on all her favourite sports teams. But as I said before, cancer doesn’t have a clear ending. It’s not over when chemo is done or when a child rings the bell. Ellie’s collateral damage is still to be determined. There is the real possibility of complications later in life and we all live with the fear of relapse or secondary cancers when she’s older.
Despite my worries, I find comfort in knowing that POGO is still on this journey with us post-treatment. Ellie will be monitored regularly for the rest of her life at a POGO AfterCare Clinic. If any late effects are detected, they will be caught early and treated, and the information about her childhood diagnosis and its treatment will continue to be available to us and used as a guide.
I want to make note of a beautiful thing that happens during a child’s treatment. You’ll notice when a parent is talking about their child’s cancer, everything is framed as “we.” “We” have chemo today, “we” have a port flush, “we” have bloodwork, “we’re” being admitted. And families speak this way because our child is an extension of us—if they’re going through something, you better believe we’re going through it right beside them, every step of the way.
I cannot speak for other families, but for ours, the “we” extended beyond our family unit. Arvinder, our POGO Interlink Nurse became part of our “we.” Lindsay and José at the POGO Satellite Clinic became part of our “we.” Not merely as part of a service or an access point, but as part of our team and our family, who we simply could not have done this without.
To us, POGO is and forever will be part of our “we.”
Adapted from Samantha Taylor’s speech at the 2024 POGO PJ Party
