A home once filled with music and laughter feels empty without Gabriel Rey.
The piano he used to play hasn’t been touched since the 12-year-old Calgary boy lost his battle with diffuse intrinsic pontine glioma, or DIPG.
“The voice, the shouting, the running around, the, ‘Do your homework first before you play your gadgets’…. Those are the things that you miss. The hugs, the kisses,” said Gabriel’s mother, Anna.
The childhood cancer that took Gabriel’s life shows up in part of the brain stem, making surgery to remove it incredibly difficult and in most cases impossible.
But the families of those who have suffered are still fighting for their kids.
The Reys added their voices to a petition asking the federal government to declare May 17 as the national day of DIPG awareness in hopes that bringing attention to the disease can one day lead to a cure.
Living the nightmare
It started with Gabriel’s parents noticing his eyes drooping. He began stuttering and losing his balance, sometimes coming home from school with scraped knees.
Realizing something was wrong with their son, his parents, Anna and Marlon, took him to urgent care in June 2021.
They were immediately sent to the Alberta Children’s Hospital.
The seriousness of Gabriel’s condition became clear when the oncologist there brought his parents into a separate room.
“She started with, ‘It’s confirmed. Your son has a brain tumour called DIPG,'” Anna said.
Faced with the unimaginable, the family was told to “make memories.”
“Every day you make memories with your child. So, I felt angry with what I heard because all of a sudden it’s like, no hope,” said Anna.
“But as a mom, you hope for something. You hold onto something.”
The disease moves quickly. So did Gabriel’s parents.
They began researching their options tirelessly, eventually flying as far as Rochester, N.Y., to find clinical trials that might give their son a chance.
Despite their best efforts, Gabriel died in May, less than a year after his diagnosis.
‘There was no hope’
Through their heartbreak, Anna and Marlon discovered a community of people suffering the same experience they were — not only the loss of a child, but the burden of finding help themselves.
“We were pretty much told by the hospital there’s no cure, to go home and make memories. There was no hope,” said Tanya Palmowski, of Edmonton, whose son Tyler died in 2020 of DIPG.
“So we went home and we researched everything ourselves. We talked with every single doctor in the States who deals with DIPG. We made spreadsheets. We tried to get on every wait list for clinical trials in the States.”
Tanya and her husband Luke even took their son to Germany to get a three-month supply of an experimental medication, which cost the family about $20,000.
After Tyler died, Luke and Tanya began sharing what they’d learned to help other families.
But instead of having to teach from their experiences, they want to see a resource centre created that would help alleviate some burden, directing parents to information and options for clinical trials.
They hope that marking a day of awareness will help lead to such a resource.
Both the Reys and Palmowskis struggled with the lack of treatment options available to their children.
The rapid progress of DIPG is treated with radiation, which only leads to short-term improvements in a patient’s condition.
Based at the Alberta Children’s Hospital, Dr. Lucie Lafay-Cousin is leading a national study on DIPG to figure out a unified approach to prolong survival without sacrificing quality of life.
“What triggered our study was that everybody was doing a little bit of different things, you know, different doses of radiation at different times,” Lafay-Cousin said.
We were pretty much told by the hospital there’s no cure, to go home and make memories.– Tanya Palmowski
According to Lafay-Cousin, the collaborative network of researchers working on pediatric oncology both nationally and globally is encouraging for progress.
“I’m hopeful that in the next five to 10 years, we’ll probably be in a different place in terms of controlling and curing that disease.”
Researching a cure
The Canadian Institutes of Health Research, which distributes funding for approved research applications, invested more than $1 billion into all cancer research between 2016 and 2021, the federal agency said in an emailed statement to CBC News.
But over the past ten years, only about $1,523,000 of that funding has gone toward DIPG research projects, according to CIHR.
With a life expectancy of just one or two years for the majority of kids diagnosed with DIPG, change can’t come soon enough.
The Reys hope that by declaring a national day of awareness, more researchers will apply for funding and help lead the way toward a cure.
“As a parent, we are the voice of our child because they can’t advocate for themselves,” said Anna.
“Maybe this is what Gabriel wants — for other families not to go through this.”
The petition to mark May 17 as the national day of DIPG awareness closes on Aug. 16.