“I can’t imagine what she’s going through in terms of the pain, the symptoms, the loss of mobility, the frustrations, the chemo, the drugs, the nagging of her parents to come into hospital. Being subjected to treatments and needles, and being poked and prodded by different people every five minutes,” he said. “For the moment, while she is with us, I feel like at least I can try to look up things and read and try to come up with a strategy that potentially might help.
“At the moment, while we still have her, it gets me out of bed every day.”
On Sunday, Dr Dun ran the half marathon in the Lake Macquarie Running Festival as part of his training regime for the Blackmores Sydney Marathon in September.
He hopes to qualify for the Boston Marathon alongside his fundraising team, RUN DIPG, to bring the world’s attention to the devastating disease.
“These children are totally innocent,” he said.
“We still have cancers out there that take our babies, and at the moment, there’s nothing we can do about it. We have to work together to end this.”
Dr Dun has become part of a community of DIPG parents all suffering the indescribable agony of watching their children battle an illness with “horrendous” survival rates.
Many have come to view him as a champion for the cause.
“I am uniquely placed to help, and I feel that responsibility,” he said. “Medicine is all about evidence-based practice. And there is no evidence-based practice for this. It is all an experiment.
“When it is all said and done, this is going to drive me for the rest of my life, to ensure other families have some hope. At the moment, there is none.”
DIPG’s location in the brain stem made it difficult to treat.
“The brain stem transports all the signals that help people breathe and swallow and see, so any disruption – be it as small as possible, or as big as a higher grade DIPG, leads to mortality pretty quickly,” Dr Dun said. “Which is why surgery – the gold standard for a brain tumour, or any tumour – is not possible.
“So we are simply stuck trying to get drugs into a site that is really important, and a site that doesn’t facilitate the transport of drugs from the veins into the tumour.
“That is why we see these terrible survival rates.”
Dr Dun said he and his wife Phoebe, a local GP who is pregnant with their third child, were grateful for the “amazing” support of their family, friends, and community.
A recent community event – The Josie Dun Gift – raised more than $70,000.
“Everyone feels like they want to help, and they know without research dollars there are no treatments, no cures, no improved well-being. So they have taken it upon themselves to do whatever they can, in their own time, to try to help us.