When I was diagnosed with cancer at age 10, SickKids became my second home
I was always an athletic kid. While learning gymnastics in my Grade 4 phys-ed class, I did a roll and landed awkwardly on my left side. The pain was severe enough that my mom and dad took me to emergency, where the doctors thought it was a pulled muscle. They recommended cold and hot compresses and some physiotherapy. Six months later, while I was trying on a new swimsuit, my mom noticed a lump on my left side. X-rays confirmed I had a large mass around my ribs.
In July 2011, I checked into SickKids and a medical team diagnosed me with Ewing’s sarcoma. It’s a rare illness that accounts for just one per cent of all childhood cancers. I never asked about my chances or the risk of recurrence. Somehow I knew instinctively that I’d be okay.
SickKids became my home for the next 10 months. My parents asked me to make a list of all the things I wanted from my room, and I included nearly everything in my closet—every Aéropostale T-shirt, every pair of track pants—and all my nail polish so I could paint the nurses’ nails. I brought my own bedding and put stuffed animals on every available surface. Doctors had to step over the beads I used to make necklaces and bracelets, which were splayed across my floor. I did all I could to make it my own space; I wanted the hospital to feel like home.
While other kids my age were riding their bikes and heading to the mall during the summer, I was undergoing surgery and several rounds of aggressive chemotherapy and radiation. Doctors removed the majority of my left chest wall, three ribs, half of my left lung and 20 per cent of my diaphragm. When my hair began falling out from the chemo, I taped it to the bald dolls the hospital staff gave me to visually explain my surgeries; if I couldn’t have hair, I thought, at least they could. My fingernails and toenails also came off and I’d occasionally flick them at people and laugh to lighten things up. On my IV pole, I had a stuffed gorilla that, when tugged, would let out a boisterous roar. Sometimes in quiet hallways, I’d yank on the toy just to scare the nurses. My friends and I would laugh as we ran down the hall, away from the disapproving doctors.
When the summer ended, I wasn’t strong enough to go back to school, but I did my best to create my own community at SickKids. When my chemo regimen kept me cooped up in my room all day, I demanded that I receive it in the evening. That way, I told my doctor, I could participate in daytime activities, like meeting Toronto FC players when they visited the hospital. My doc had never had a child tell him so adamantly how her treatment should work. He could do nothing but oblige. On weekends, the other kids and I would make jewellery, do crafts or just hang out in the playrooms. It was as close to a normal life as we could get.
When new kids couldn’t get comfortable, I tried to help them settle in. There was a shy little girl named Megan who would often retreat to her room. One night, I decided to throw a party for the two of us to mark the series finale of Wizards of Waverly Place, the kids’ show starring Selena Gomez. I told Megan she had to come, and I said the same to her doctors, who by then knew not to argue with me. My dad bought us heaps of junk food—chips, candy, chocolate, popcorn and soda—and we watched the show, then stayed up past midnight playing Clue. I walked Megan back to her room at the end of the night and, on the way, I gave the gorilla on my IV pole a tug, much to Megan’s delight.
In April 2012, I completed my treatment and returned home, but my mind was never far from the hospital. I wanted to do something to give back. At first, my mom suggested we hold a barbecue to raise money. I told her she was thinking too small and I proposed a gala. We made it happen on a Friday night in September at an event venue in Vaughan, raising more than $62,000 for the hospital. When my shoes got uncomfortable that night, I kicked them off and danced barefoot while my medical team and parents looked on. They knew something I didn’t. Follow-up tests had shown my cancer had returned—I had three new nodules—but they waited until Monday to tell me that I would have to go back into the hospital for more chemo, more radiation and another invasive surgery. They didn’t want to ruin my moment.
I was at SickKids for 10 more months and was released in July 2013. All told, I had seven surgeries, 28 rounds of chemo and 30 radiation sessions. Since then, I’ve been cancer-free. I’m 15 now and a sophomore at a high school where few people know about my medical history. I feel as though I’ve started a new chapter in my life, where I’m not the “cancer girl.”
I go back to SickKids for routine checkups every six months. Thanks to my fundraising, there’s a plaque hanging in a hallway with my name on it. This way, a part of me will always be there.
Olivia Santarelli established the Olivia Santarelli Fund for Research of Osteosarcoma and is a SickKids ambassador who regularly helps raise funds for the hospital. Email submissions to firstname.lastname@example.org