Dr. Rebecca Deyell, pediatric oncologist at BC Children’s Hospital, with Ellie, treated for a rare childhood cancer at BC Children’s Hospital. Thanks to vital donor support, researchers can explore uncharted paths and treatment options for children like Ellie.

Dr. Rebecca Deyell, pediatric oncologist at BC Children’s Hospital, with Ellie, treated for a rare childhood cancer at BC Children’s Hospital. Thanks to vital donor support, researchers can explore uncharted paths and treatment options for children like Ellie.

Ellie’s journey: Rare condition points to critical research need

BC Children’s Hospital shares need for increased research for childhood cancers

“You would think hearing, ‘Your child has cancer,” is the worst thing you’ll ever hear in your life, but hearing that there’s no known treatment to fix her is a nightmare.”

Osoyoos parents Racyne and Craig were preparing to greet the New Year in 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 headed by ambulance to BC Children’s Hospital where their lives forever changed. Tests revealed a rare, fast-growing form of childhood cancer: malignant rhabdoid sarcoma. Usually found in the kidney or brain, Ellie’s tumour was in a saliva gland below her lower jaw. Because of its location and rarity, doctors didn’t have a standard approach to care.

As the tumour pushed on Ellie’s trachea to the point it was difficult to breathe, her health quickly worsened.

“This made it essential that we call together a big team from all different specialties to safely manage her care while making sure that we maintained her airway,” says Dr. Rebecca Deyell, Ellie’s Oncologist.

Following a tracheostomy to open up Ellie’s windpipe, intensive treatment included chemotherapy, surgery and radiation.

She also was also enrolled in a research initiative which uses genome sequencing on individual tumours to find the best treatment options for that child’s hard-to-treat cancer.

Working to conquer childhood illness

BC Children’s Hospital is BC’s only hospital devoted exclusively to the care of children – specialized care they often can’t receive anywhere else. Last year, more than 99,000 patients visited the hospital, including both its acute care centre and research institute, mental health facility and rehabilitation centre.

BC Children’s also cares for every child diagnosed with cancer. Thanks to vital donor support, researchers can explore uncharted paths and treatment options for children like Ellie, and while rapid advances through clinical research and trials are giving new hope to kids, we’re not done yet.

“I want to see increased research, I want to see clinical trials that are designed for these rare kinds of tumours, and particularly, I want to see results of targeted therapies designed specifically for the gene changes we see in those cancer cells,” Dr. Deyell says.

“This work is critical, and none of it would be possible without donor support. We can’t accept the status quo. We know that we’re not doing enough for these children.”

Ellie’s first two rounds of chemotherapy successfully reduced her tumour by more than 50 per cent. After more chemotherapy, surgery and 25 radiation treatments, tests revealed that Ellie no longer showed signs of cancer.

Despite the difficult journey, Ellie remained upbeat and positive. Many of the hospital’s Child and Youth Therapeutic Services programs, including art and music therapy, played a role in lifting her spirits. “Ellie danced her way through this,” Craig says. “The nurses say they’ve met very few who have handled chemotherapy the way she has. She would be hooked up to the IV pole and still be dancing.”

Seven months after arriving at BC Children’s, the family finally returned home. Ellie returns every three months for follow-up, and it’s likely she’ll need reconstructive surgery on her jaw. But the bubbly six year old is still doing everything she loves, including ballet and hip hop classes.

“BC Children’s Hospital saved Ellie’s life,” Racyne says. “We are where we are now because of everyone at 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 join us on our quest to conquer childhood cancers at bcchf.ca.

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