“You might think to hear, ‘Your child has cancer’ is the worst thing you will ever hear in your life, but to hear that there is no known treatment to cure it is a nightmare.”
Osoyoo’s parents Racyne and Craig were preparing to greet the New Year 2017 when they discovered a lump on 2-year-old Ellie’s jaw.
A month later, after treatment for a suspected infection, multiple appointments, and no improvement, the family was taken by ambulance to BC Children’s Hospital, where their lives were forever changed. Tests revealed a rare, rapidly growing form of childhood cancer: malignant rhabdoid sarcoma. Ellie’s tumor was usually found in the kidney or brain and was located in a salivary gland under her lower jaw. Because of its location and rarity, doctors did not have a standard approach to treatment.
When the tumor pressed so hard on Ellie’s windpipe that she could hardly breathe, her health quickly deteriorated.
“It was therefore imperative that we put together a large team from all different disciplines in order to safely manage their care while at the same time ensuring that we were preserving their airways,” says Dr. Rebecca Deyell, Ellie’s oncologist.
After a tracheostomy to open Ellie’s windpipe, intensive care included chemotherapy, surgery, and radiation.
She was also involved in a research initiative that uses genome sequencing of individual tumors to find the best treatments for this child’s difficult-to-treat cancer.
Working to beat teething troubles
BC Children’s Hospital is the only hospital in BC devoted to exclusively caring for children – specialized care often found nowhere else. In the past year, more than 99,000 patients visited the hospital, including both the acute care center and the research institute, the psychiatric facility and the rehabilitation center.
BC Children’s also cares for every child who has cancer. Vital donor support enables researchers to explore unexplored avenues and treatment options for children like Ellie, and while rapid advances through clinical research and trials are giving children new hope, we’re not done yet.
“I want to see more research, I want to see clinical trials developed for these rare types of tumors, and in particular, I want to see results of targeted therapies that are specifically designed for the gene changes we see in these cancer cells,” said Dr, says Deyell.
“This work is vital and none of this would be possible without the support of donors. We cannot accept the status quo. We know that we are not doing enough for these children. “
Ellie’s first two rounds of chemotherapy successfully reduced her tumor by more than 50 percent. After further chemotherapy, surgery, and 25 radiation treatments, tests showed that Ellie no longer showed any signs of cancer.
Despite the difficult journey, Ellie remained optimistic and positive. Many of the hospital’s child and adolescent therapeutic services, including art and music therapy, helped lift her spirits. “Ellie danced through,” says Craig. “The sisters say they have met very few who have used chemotherapy like them. She would be connected to the IV pole and still dance. “
The family finally returned home seven months after arriving at BC Children’s. Ellie comes for a check-up every three months, and it is likely that she will need reconstructive surgery on her jaw. But the bubbly six-year-old still does everything she loves, including ballet and hip-hop classes.
“BC Children’s Hospital saved Ellie’s life,” says Racyne. “We’re where we are now because of everyone in the hospital – the nurses, doctors, oncologists, and so on. It was the best place to be with the cards we were dealt. “
Learn more about how you’re helping us find cancer in children at bcchf.ca.
Family Health and Wellness Philanthropy
