Canadian initiative fuelled by Terry Fox’s dream may be only hope for young cancer patients

Young cancer patients in rural or remote areas did not always get the testing available

Seeing children suffering with cancer when he was being treated himself broke Terry Fox’s heart and inspired his Marathon of Hope.

Now, those efforts have fuelled a unique initiative to give kids and young adults across the country a chance to live when there are few, if any, treatment options left.

READ: Terry Fox’s story through the eyes of his younger brother, Darrell Fox

Eight-year-old Marlow Ploughman of Shannonville, Ont., has relapsed four times and is on a new drug thanks to genetic testing involving a project that brings together collaborators from over 30 pediatric cancer research and funding organizations.

The girl was diagnosed at age 2 1/2 with late-stage rhabdomyosarcoma, or cancer of the soft tissue, such as muscle, after a vine-like tumour was found in her calf, said her mother Tanya Boehm.

After three rounds of radiation, chemotherapy protocols and at least four clinical trials, there were no therapies left to try as the cancer spread to the girl’s neck and lungs.

A program called Terry Fox PROFYLE, short for Precision Oncology for Young People, seemed to be the only hope for Marlow, Boehm said.

PROFYLE provides precision treatment by sequencing tumour samples on a molecular level and analyzing the vast amount of information at any of three labs in Vancouver, Toronto and Montreal for patients up to age 29, regardless of where in Canada they live.

Until now, young cancer patients in rural or remote areas did not always get the testing available, let alone the collaboration of scientists and researchers from across the country to guide treatment.

“It presents options and time,” Boehm said. ”We were told with Marlow when the cancer came back the first time that she was going to die. … I think it’s fantastic that finally, families like ours have hope.”

Marlow’s oncologist and project leader, Dr. David Malkin of the Hospital for Sick Children in Toronto, said the focus of the five-year project is the approximately 20 per cent of pediatric cancer patients whose disease is considered hard to treat.

“Every pediatric centre across the country is part of PROFYLE and several of the adult centres will also be able to enrol their patients into the study. Even in the pilot phase we have had patients from all provinces now enrolled,” Malkin said.

About 40 people are participating in the study and about half of them have had their tumours sequenced because of the partnership that has so far provided $16.4 million, including $5 million from the Terry Fox Research Institute.

“One of the reasons that PROFYLE is so important is that the cancers that occur in young people are inherently different than they are in adults,” said Malkin.

“We need to be collecting much, much more information on the sequences of childhood and young adult tumours and personalize it and make it more precise so we can work with industry and pharma and develop ways that we can get these drugs for kids,” he said.

About 1,900 youth under age 18 are diagnosed with cancer every year in Canada, and about a third of them would be eligible for PROFYLE, he said, adding that only two other programs in the world come close to what PROFYLE offers.

“What is unique about PROFYLE is that it’s truly national.”

Patrick Sullivan, whose three-year-old son Finn died of rhabdomyosarcoma in 2008, has raised over $2 million for the BC Cancer Foundation and is on the executive committee of PROFYLE, for which he has committed another $250,000.

He said Finn, who was “introverted with a heavy streak of silly,” would have qualified for PROFYLE but the cost of molecular sequencing and analysis was far too high in 2008.

“It not only offers hope for families, which would have been enough for me, it offers a way to integrate this type of approach for kids, adolescents and young adults and for all Canadians,” he said.

Dr. Victor Ling, scientific director of the Terry Fox Research Institute in Vancouver, said Fox, who was diagnosed at age 18 and died four years later, would have qualified for PROFYLE.

“We did not know how to do DNA sequencing in those days, we did not have the drugs that we have now.”

Darryl Fox, Terry’s brother and a senior adviser at the Terry Fox Research Institute, said Terry was passionate about meeting young cancer patients, especially during the Marathon of Hope.

“We’re bringing not only children’s hospitals and fundraisers together but in 1980 he united a country. He brought Canadians together for a common cause and we continue to do that and this program is an example of that.”


@katslepian

katya.slepian@bpdigital.ca

Like us on Facebook and follow us on Twitter.

Get local stories you won't find anywhere else right to your inbox.
Sign up here

Just Posted

B.C. Green Party leader Sonia Furstenau outlines her party's climate action platform at Nanaimo's Vancouver Island Conference Centre earlier this month. (News Bulletin file photo)
Green leader Furstenau declared victor in her home riding on Vancouver Island

Cowichan Valley voters elect freshly minted party leader for her second term

New Democratic leader John Horgan during Monday's campaign stop in Sidney. (Wolf Depner/News Staff)
NDP John Horgan wins Langford-Juan de Fuca

BC Green candidate Gord Baird takes second place early in the polls

(BC Hydro outage map)
UPDATE: Power restored to more than 3,000 Sooke residents

Two polling stations impacted by outage

The mottled sky, the lights coming on at water’s edge and in Victoria West, and the reflections on the building windows make for a scenic sunset photo in Victoria’s Selkirk neighbourhood. (Don Descoteau/News Staff)
Sunset on the Selkirk in Victoria

Send your photos to editor@vicnews.com for a chance to see them in the paper

Christopher Mauro, right, assistant manager of the Sidney Save-On-Foods, and Nick Luney, youth initiatives director for the Victoria Pride Society, celebrate the success of a pandemic fundraiser for the local Pride Society. (Courtesy Save-On Foods)
Grocery managers across the Island pull together for Queer youth

With Victoria Pride Parade and Festival cancelled, Save-On-Foods staff found a way to raise funds

B.C. provincial health officer Dr. Bonnie Henry gives a daily briefing on COVID-19 cases at an almost empty B.C. Legislature press theatre in Victoria, B.C., on March 25, 2020. (Don Craig/B.C. government)
B.C. sees 223 new COVID-19 cases, now 2,009 active

Two new care home outbreaks in Surrey, Burnaby

Canada’s Chief Public Health Officer Theresa Tam responds to a question during a news conference Friday October 23, 2020 in Ottawa. Canada’s top physician says she fears the number of COVID-19 hospitalizations and deaths may increase in the coming weeks as the second wave continues to drive the death toll toward 10,000. THE CANADIAN PRESS/Adrian Wyld
Canada’s top doctor warns severe illness likely to rise, trailing spike in COVID-19 cases

Average daily deaths from virus reached 23 over the past seven days, up from six deaths six weeks ago

100 Mile Conservation officer Joel Kline gingerly holds an injured but very much alive bald eagle after extracting him from a motorist’s minivan. (Photo submitted)
B.C. driver thought he retrieved a dead bald eagle – until it came to life in his backseat

The driver believed the bird to be dead and not unconscious as it turned out to be

White Rock RCMP Staff Sgt. Kale Pauls has released a report on mental health and policing in the city. (File photos)
White Rock’s top cop wants to bill local health authority for lengthy mental-health calls

‘Suggestion’ included in nine-page review calling for ‘robust’ support for healthcare-led response

A Le Chateau retail store is shown in Montreal on Wednesday July 13, 2016. Le Chateau Inc. says it is seeking court protection from creditors under the Companies’ Creditors Arrangement Act to allow it to liquidate its assets and wind down its operations.THE CANADIAN PRESS/Ryan Remiorz
Clothing retailer Le Chateau plans to close its doors, files for CCAA protection

Le Chateau said it intends to remain fully operational as it liquidates its 123 stores

Green party Leader Sonia Furstenau arrives to announce her party’s election platform in New Westminster, B.C., on October 14, 2020. THE CANADIAN PRESS/Jonathan Hayward
B.C. Green party says it’s raised nearly $835,000 in 38 days

NDP Leader John Horgan is holding his final virtual campaign event

U.S. border officers at the Peace Arch crossing arrested two men on California warrants this week. (File photo)
Ottawa predicts system delays, backlogs unless court extends life of refugee pact

Canada and the United States recognize each other as safe places to seek protection

The possibility of the Canadian Premier League expanding to the Fraser Valley has been floated online. (Facebook photo)
Canadian Premier League possibly eyeing Fraser Valley expansion

Soccer league looking to add ninth team to the mix, B.C. markets potentially rumoured

Most Read