鈥淵ou would think hearing, 鈥榊our child has cancer,鈥� is the worst thing you鈥檒l ever hear in your life, but hearing that there鈥檚 no known treatment to fix her is a nightmare.鈥�

Osoyoos parents Racyne and Craig were preparing to greet the New Year in 2017 when they discovered a lump on 2-year-old Ellie鈥檚 jaw.

A month later, after treatment for a suspected infection, multiple appointments and no improvement, the family was headed by ambulance to BC Children鈥檚 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鈥檚 tumour was in a saliva gland below her lower jaw. Because of its location and rarity, doctors didn鈥檛 have a standard approach to care.

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

鈥淭his 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,鈥� says Dr. Rebecca Deyell, Ellie鈥檚 Oncologist.

Following a tracheostomy to open up Ellie鈥檚 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鈥檚 hard-to-treat cancer.

Working to conquer childhood illness

BC Children鈥檚 Hospital is BC鈥檚 only hospital devoted exclusively to the care of children 鈥� specialized care they often can鈥檛 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鈥檚 also cares for every child diagnosed with cancer. Thanks to vital , 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鈥檙e not done yet.

鈥淚 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,鈥� Dr. Deyell says.

鈥淭his work is critical, and none of it would be possible without We can鈥檛 accept the status quo. We know that we鈥檙e not doing enough for these children.鈥�

Ellie鈥檚 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鈥檚 Child and Youth Therapeutic Services programs, including art and music therapy, played a role in lifting her spirits. 鈥淓llie danced her way through this,鈥� Craig says. 鈥淭he nurses say they鈥檝e met very few who have handled chemotherapy the way she has. She would be hooked up to the IV pole and still be dancing.鈥�

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

鈥淏C Children鈥檚 Hospital saved Ellie鈥檚 life,鈥� Racyne says. 鈥淲e are where we are now because of everyone at the hospital 鈥� the nurses, doctors, oncologists and so on. It was the best place to be with the cards we were dealt.鈥�

Learn more about how you join us on our quest to conquer childhood cancers at .