Justin's interview at a nursing home in St. John's, November 2016.
©Brad Dillon Photography
LAB WEST - Labrador West has a major role in production of a documentary on rare cancer form of cancer.
When Gail Hodge's son was diagnosed with Ewing's sarcoma in 2009, the Labrador City woman had never heard of the disease.
“My search for information turned up almost nothing,” she told the Aurora. "It was a long lonely road, my sons diagnosis was scary, and the treatment scarier."
Then little was known about the disease that affects mostly younger children and young adults, but can affect adults as well.
In her quest for information, Hodge found out about the Ewing’s cancer foundation of Canada. The foundation was founded by Tina and Bernie Pernica and their son Reid, who was diagnosed with the sarcoma. The family decided in 2008 that people had to be informed and educated about the disease.
"It's a disease that is often misdiagnosed," Hodge explained, "and one that is often hard to find." Many physicians may only see one or two cases in their entire career.
Hodge was eventually invited to sit on the board of directors of the foundation as director of Eastern Development. Her son completed his treatments and is a survivor.
But that didn't stop her from wanting to spread information and awareness of Ewing's Sarcoma. “The foundation set up an information booth at a major conference for primary care givers several years in a row,” Hodge told the Aurora.
A quest to get the word out led the foundation to brainstorm, and then the idea of a documentary fell into place in a most unique way. A search for a production company to take on a documentary , with limited resources didn't pan out , but in 2016 Hodge met with a young filmmaker by the name of Justin Tobin who was keen to do the project. The young man was himself battling with Ewing's sarcoma. However, before long his fight with the disease meant he was no longer able to take on the project, and eventually he became one of the main subjects in the documentary.
It was back to the drawing board for the foundation, Hodge held a brainstorming session with two local photographers and video makers, Brad Dillon (her son in law) and Josh Bingle. Bingle had worked on previous documentary projects and was friends with an experienced videographer and filmmaker, Danny Bailey of Kitchener Ontario. Before long, a partnership with the Ewing's cancer foundation of Canada was formed, and Creative Focus started the task of producing the documentary.
One of the producers, Brad Dillon of Labrador City, told the Aurora
"At first I was nervous, having to speak with people who had the disease, some knowing they were terminal, and having to speak with families that lost children, I wasn't sure how I would react"
“Meeting Justin Tobin however was a turning point," says Dillon, his energy and enthusiasm set the bar for the rest of the project.”
Tobin and the other participants amazed Dillon with their friendly open and frank discussions about their experiences.
"It put me at ease for the rest of the documentary making process," he told the Aurora.
For Josh Bingle, the experience of making the documentary left him humbled.
"I almost felt guilty for being healthy," he told the Aurora. "To see these people embrace life and their eagerness to share their experiences was an eye opener. Again, Justin Tobin was amazing; he gave it 110 per cent, knowing it would probably drain every bit of energy out of him.”
It did, he was in bed for three days after, but he wouldn't have had it any other way.
Bingle hopes the documentary will make a difference for many people.
"They will learn that early diagnosis is of utmost importance, that a lot more has been learned about this disease and that progress is being made, but there's still a lot more research that needs to be done."
The team criss-crossed the country from St. John’s to Vancouver, interviewing doctors, researchers, families, people with Ewing's.
The result is a documentary titled "Make it stop," a documentary about Ewing's sarcoma.
For Gail Hodge and the Ewing's cancer foundation of, Canada the release of this documentary is a big moment in the foundations reason for being.
Hodge told the Aurora "The documentary will be available to health professionals, and to anyone who deals with children. Teachers, sports coaches and others all need to know what to look for. It will also be available online," she told the Aurora.
The Labrador West screening will be September 7th at the Labrador West arts and culture center at 8 p.m. everybody is invited and there is no admission.
Other screenings will be held in
St. Johns at the rooms September 17th
Richmond Hill Ontario September 23rd and
Fall River Nova Scotia September 23rd.
"It's exciting," Hodge told the Aurora, she's already had to book a second screening in St. John’s. People are interested, I've heard from the Medical school in St. John’s, many of the med students are very interested.
With this documentary Hodge hopes her experience of the lack of information and the little known facts of the disease, when her son was diagnosed in 2009 are days long gone.
"It's a major step forward for the Ewing's cancer foundation of Canada and for working toward the eradication of this disease," she says.