RUN DIPG
October 30, 2019
Matt Dun has just won $10,000 and a NSW Premier’s Award. It’s an immense honour that pales in comparison with the soft trill of his four-year-old daughter’s giggles.
That’s the sound that sustains the biomedical scientist as he works late into the night searching for a way to eradicate the terminal cancer consuming Josie.
“She hasn’t been able to talk for a long time but she can still giggle,” Dr Dun said. “When I’m exhausted, I think about wanting to hear her giggle again. That’s what drives me.”
Josie was diagnosed with diffuse intrinsic pontine glioma (DIPG), an inoperable cancer of the brain stem that almost exclusively affects children.
“She is very unwell, but she’s alive,” Dr Dun said on the day of the NSW Premier’s Awards for Outstanding Cancer Research, hosted by the Cancer Institute NSW on Wednesday.
He was named Outstanding Cancer Research Fellow, an award for early-career researchers who have demonstrated exceptional research progress.
“It’s a very great honour … I look up to the researchers who have won in past years. But it’s hard to have any positive emotions at this point. Just being with Josie has been my focus for a long time now,” he said.
“Every time her condition has deteriorated, I have another plan ready to go. I think we’re up to plan F.”
When Josie was diagnosed in February 2018, Dr Dun was shocked to learn there was a dearth of research investigating the signalling networks of DIPG cells that could explain what caused the tumours to grow.
Dr Dun and his colleagues were doing similar work with acute myeloid leukemia at the University of Newcastle and Hunter Medical Research Institute. He pivoted to DIPG in the hope of finding potential treatments that could slow or even reverse their growth.
Breakthroughs in cancer can take decades, but one researcher is racing against the clock to buy more time for his four year old daughter.
“Chucking drugs at DIPG cells isn’t going to work. We need to understand the biology of the disease if we are going to help these kids,” he said.
Every year in Australia, about 100 children die of cancer, 36 from brain cancer and, of these, 20 from DIPG. The life expectancy for children with DIPG is 10 months after diagnosis. Josie is in her 21st month.
Drawing on the findings of the Australian PRISM trial, Dr Dun found a promising drug, Paxalisib, and was able to show in his laboratory that it slowed the progression of DIPG tumour cells.
It’s the same drug that is prolonging Josie’s life.
“[But] I don’t want to give anyone false hope,” he said.
No one drug will be enough, Dr Dun said. His research team is studying the way DIPG tumours become resistant to these treatments so they can identify drug combinations that would kill the cancer cells.
‘My whole family is exhausted’
Dr Dun works mostly from home to be near Josie, who needs constant care. Their family and friends launched a charity, RUN DIPG, within 12 months of her diagnosis to raise funds for his research, and Josie’s mother, Phoebe, sacrificed her medical career so that Dr Dun could keep working.
“It’s been really challenging,” Dr Dun said. “My whole family is exhausted … We will spend our lives dedicated to conquering this disease.
“My research team has been incredible. They have dedicated so much of their personal time, working way beyond what their working hours [require], and they have done some remarkable work.”
Without the funding support from the Cancer Institute NSW, Dr Dun would not have been able to run his own lab, with the equipment he uses to study DIPG tumour cells.
“None of this would have happened,” he said.
Premier Gladys Berejiklian said she was touched by Dr Dun’s personal story and his dedication to cancer research even as his family face their own battle.
“Caring for his daughter while at the same time working to find new treatments that will help other children like her takes remarkable strength,” Ms Berejiklian said.
CONTENT BY KATE AUBUSSON/SYDNEY MORNING HERALD
