A London, Ont., teenager with brain cancer and her family will have to travel to the United States to receive a cutting edge form of radiation therapy that’s not yet available anywhere in Canada.
Hailey Merrylees, 17, was diagnosed with germinoma — the most common form of a brain tumour — in mid-November after a series of medical tests, including MRIs and biopsies.
After completing three rounds of chemotherapy, she now requires proton beam therapy, an alternative type of radiation treatment that can target cancer cells more precisely and could avoid damaging healthy cells, which she will go to the University of Florida in March to receive.
“She has a legitimate chance to beat this. They are hopeful that she can be cured, not just to extend her life,” Hailey’s grandfather, Bill Merrylees told CBC News.
Hailey’s treatment will take at least four weeks and although it will be covered by the Ontario Health Insurance Plan (OHIP) due to its unavailability in Canada, her family has to pay out of pocket for travel, living accommodations and meals for the duration of their stay.
“She’s responding well to chemo. We hoped she would be able to proceed with her radiation here, but unfortunately due to the type of cancer she has, the doctors want to make sure they get the proper radiation treatment and unfortunately we don’t have that in Canada yet,” said Bill.
High costs a barrier in building proton facilities in Canada
Proton radiation therapy uses proton particles which enter a patient’s body and stop within the tumour, unlike traditional X-ray radiation, which goes into a patient’s body and exits out the other end, explained Dr. David Kirsch from Princess Margaret Cancer Centre in Toronto.
Kirsch, who is head of the hospital’s radiation medicine department, said high costs associated with equipment to build proton beam radiation facilities have been a key factor in why it’s not operational in Canada yet, adding that the therapy’s benefits certainly justify its costs.
“This can be a big advantage for certain kinds of cancers, like children who have brain tumours, where we want to treat the cancer but spare critical normal tissues like the normal brain,” he said.
“Where we think the biggest advantage with protons will be, is that we can decrease the toxicity from radiation therapy, and this is especially important for children, who when we cure them from cancer, will then live many many decades.”
As of May 2023, there are 101 proton facilities across the world, with another 34 under construction, according to a clinical practice guideline document by Alberta Health Services. Kirsch estimates there are about 48 proton therapy centres in the U.S.
Hailey is a Grade 12 student at South Secondary School and is a competitive dancer. She has recently been accepted to King’s University College, a Western University affiliate, which she’s looking forward to attending to pursue her dreams of becoming a teacher, her grandfather said.
“She has been totally positive and very strong throughout the entire process. We’re so proud of her,” said Merrylees. “Even when she’s feeling really tired and sick, she’s been herself and that’s been a big part of her getting through it.”
Family overwhelmed by community support
Hailey’s tumours have significantly shrunk, due to chemotherapy, with her fourth and final round scheduled at the end of this month. But she’s had to be hospitalized and dependent on steroids for a cortisol (stress hormone) deficiency and temporary diabetes.
Hailey will be accompanied to Florida by her parents, who have taken time off from their jobs, and her younger brother. The family launched a GoFundMe campaign of $75,000 to cover costs they’ll incur and so far have raised almost 70 per cent of their goal.
Merrylees said support from their community has been overwhelming.
Travelling away from home for cancer treatment puts an extra burden on families, alongside the costs of both receiving treatment and living in the U.S. for its duration, said Kirsch.
“It really disrupts life for the family,” he said. “People are out of work, of course, when they go to the U.S. for treatment and they’re away from home and their support system as well which creates psychological stress too.”
Kirsch said University Health Network, which includes Princess Margaret, is working with SickKids Hospital and the Pediatric Oncology Group of Ontario to establish Canada’s first-ever particle therapy centre in Toronto, where proton beam therapy would be delivered and would serve all Ontarians and cancer patients from across the country.
The group has already received a $5 million planning grant, as part of their total $1.7 billion project cost request for the facility, which could be approved in the coming weeks, Kirsch said.
