Nine-year-old Evie was a “perfectly healthy kid” running around at play dates and racing off to school when she started getting migraines.
They went away, so her doctors and family thought nothing of it — until Evie complained of “seeing double” while playing tennis in December 2020.
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Evie’s doctor sent her to the Sydney Children’s Hospital for neurological testing.
“That’s when the whole nightmare began,” mum Bridget Poolman told 7NEWS.com.au.
“They called us into a room and said they found a mass.”
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Testing confirmed it was diffuse intrinsic pontine glioma (DIPG) — a highly aggressive and difficult-to-treat brain tumour.
The cancer is always fatal and has a life expectancy of just nine to 11 months after diagnosis, according to the Children’s Cancer Institute.
“Beautiful” Evie only got five and a half.
About 20 Australian children are diagnosed with DIPG each year, yet treatment protocols for the cancer have not changed in 60 years.
While “nothing is ever going to bring Evie back”, Poolman is among the families and experts raising awareness of the deadly disease and calling for more funding for research in hopes of finding a cure.
Nine-year-old Evie Poolman was an ‘old soul’ who was kind, funny and active. Credit: Supplied to 7NEWS.com.au
Poolman vividly remembers the gut-wrenching moment she received Evie’s diagnosis, just days after Christmas.
“I was in utter shock, you know when you feel your stomach fall out of you,” she said.
But even then, the family stayed strong, hopeful they would have treatment options to explore.
“We thought, ‘Well, there’s so much they can do with breast cancer and prostate cancer and all the other cancers, that will be something we can do here’,” Poolman said.
However, they soon learned the harsh reality of DIPG — there is no cure.
The tumour forms in the pons, a part of the brain responsible for cardiac function and respiratory control, explains University of Newcastle cancer researcher professor Matt Dun.
“Geographically, it’s difficult to get at,” he told 7NEWS.com.au.
“Taking a chunk of that tissue and brain stem would have devastating consequences.”
Dun shifted his cancer research focus to DIPG after his daughter Josie was diagnosed in 2018.
His work granted the four-year-old extra time, with Josie living for 22 months after her diagnosis — about a year longer than what doctors initially expected.
Dun and his research team are dedicated to unlocking the secrets of the disease in hopes of discovering treatments and, one day, a cure.
The only recognised treatment option is palliative radiotherapy, which does not aim to cure the cancer, only slow its growth to control symptoms and try to prolong survival.
“It offers a couple extra months for some children … unfortunately, it didn’t do anything for Evie,” Poolman said.
“Evie received the same treatment as Karen Armstrong in 1962 when she was diagnosed before Neil Armstrong walked on the moon in 1968,” Dun added. “It’s ridiculous.”
Professor Matt Dun’s children with a photo of their sister Josie, forever four years old. Credit: Supplied to 7NEWS.com.au
‘A death sentence’
The survival rate of childhood leukaemia is about 90 per cent, according to Children’s Cancer Institute. Poolman hopes the same can one day be said for DIPG.
“When you look at what they’ve done, it’s incredible … it’s no longer necessarily a death sentence, whereas (DIPG) absolutely is,” Poolman said.
Families and experts say more funding for DIPG research is desperately needed.
The Poolmans are also among the brave families who donated their child’s brain tumour to researchers working to understand the cancer.
“You’re thinking about the most complex cancer located in the most precious region of the body, and it’s only been studied for 10 years,” Dun said.
“In the past 60 years, 1200 children in Australia alone have died from having the same treatment, knowing it’s the same outcome,” Poolman said.
“If we wait another 60 years, that’s every year the kids are going to die from that guaranteed.”
Currently, much of the funding comes from charities set up by families of patients, such as Run DIPG, a charity dedicated to improving outcomes for patients, families and communities impacted by DIPG founded by Dun and wife Phoebe Hindley.
Poolman donated Evie’s last artwork she painted at school before she died, a lone Anzac soldier, to a Run DIPG fundraising auction, with the artwork selling for $100,000 at the weekend.
“I always had a big question mark around it because it was so beautiful, and it’s such a recognisable image and it means to much for so many people,” Poolman said.
“For me, it stands for all the children that give their lives to this, but they still give themselves to research and so they still fight on, trying to find the cure even though they’re not here.”
Evie’s last artwork she painted at school sold for $100,000 at a fundraiser for Run DiPG. Credit: Supplied to 7NEWS.com.au
The path to a cure
Despite their best efforts, community fundraising is just a “drop in the ocean” of what’s needed for scientific research.
“It shouldn’t be up to the families in real time to do fundraising for research. It should be up to the government,” Dun said.
“I’m banging on the door and I’m hoping that change can come, and we can have sustainable funding models which will mean that we can recruit Australia’s best minds to tackle the world’s worst tumour.”
Work by Dun and his team has helped inform an international clinical trial at 36 hospitals, including Australia.
“It’s underpinned by the work of our team thanks to the generous and courageous donations of families who have left their child’s tumour to research,” he said.
“Without those critical donations, we would still be a very long way from effective treatments for the disease.
“We still are in some way … but we’re getting closer to at least having a recognised therapy or a recognised combination of therapies. At the moment we don’t have anything.”
Evie Poolman. Credit: Supplied to 7NEWS.com.au
For Poolman, a better understanding of DIPG could save other families from the same pain.
“We need for foundations, for big business, for philanthropy to get behind it because you know the kids, they are the future CEOs, they are the future scientists, they are the future astronauts.
“They are the future and they never get to live that out.”