THE two things that "completely level" Aaron and Mindi Binnie are hearing about a child dying from DIPG, and learning of another being diagnosed.
"Because you just know that those people are about to have the worst experience of their life," Mr Binnie said.
Since September, the Charlestown family has been on a "rollercoaster ride" after three-year-old Victoria was diagnosed with diffuse intrinsic pontine glioma (DIPG) - a highly aggressive and difficult-to-treat brain stem cancer with an average survival of about 10 months.
They were told Victoria would likely have between six and 12 months to live.
"We had been noticing that each third or fourth morning, Victoria would throw up in the morning, first thing, and then get on with her day, like it hadn't happened," Mr Binnie said. "In hindsight, we realised that she probably hadn't been quite as active as usual either. But then the vomiting started to become more regular."
An MRI revealed the "absolutely devastating" news on September 26, 2018.
"We had it in our mind at the time that it probably wasn't anything serious, but we'd get it checked out to make sure," Mr Binnie said.
"And that's when the rollercoaster ride really started. I soon realised that my understanding of brain tumours, and of cancer itself, was probably a bit naive.
"When you really start to understand the diagnosis - that it's something that grows like a root system into a very important part of the brain that they can't get to; and hear the prognosis - that there are months to live, your world just starts crumbling down."
Victoria underwent a biopsy, and then radiation therapy under general anaesthetic in Sydney for six weeks. Mr Binnie said their friends and family tried to keep life at home as "normal as possible" for their older boys - Harrison, eight, and Alexander, seven.
"We'd go home when we could at the weekends. It was a really tough six weeks to go through," Mr Binnie said.
"Unfortunately the biopsy Victoria had didn't harvest enough DNA from the tumour, which meant we weren't able to find any targeted therapies for her particular tumour type."
They were also hoping the radiation would shrink Victoria's tumour enough to make her eligible to trial immunotherapy.
"We'd been given a ray of hope with the radiation, thinking we might be able to get some significant changes, but unfortunately it didn't get any real reduction in Victoria's tumour," he said.
"Once those results came out, we were devastated. Again. Because it meant she couldn't trial the immunotherapy, which hadn't been done on many DIPG cases before. It was unproven, but one of the only attempts at actually curing the cancer.
"Everything else at the moment just seems to be a band-aid for the tumour, to stop it growing and maybe reduce it, before it mutates into the next form.
"So that was a little ray of hope that was dashed. Now it's back to band-aids."
Victoria is due to turn four on July 24. She is still talking, but no longer walking.
"The impact of the trials and the operation and the tumour itself have meant she is not living a normal life right now," Mr Binnie said.
"We are just trying to make the most of our time with her. Keep everything at home under control and everyone together. You can't think of too much else, and anytime you think of the future, you kind of question whether Victoria is part of it, or not.
"And that is when you start to come undone."
Victoria has trialled different treatments for DIPG, but it had been difficult to strike a balance between finding something that could prolong her life, without further impacting on its quality.
"The only other option we had available was another experimental chemotherapy based in Sydney, but that meant that for four weeks, twice a week, we would have to travel to Sydney for eight hours a day - with about five hours of travel on top of that - to do the chemo, and come home.
"We had already struggled going down there constantly for another trial. And it was such a huge day for all of us, especially Victoria.
"It was going to impact too much on the quality of life we were after for Victoria, especially because we don't really know what kind of time frame we have with her.
"Hence, we decided to go down another path in Newcastle, where we can be at home, and near our local hospital, closer to our support network."
The family have been working closely with Dr Matthew Dun, a Hunter cancer researcher whose daughter, Josephine, is battling the same deadly disease.
Both girls have been trialing a drug that targets a mechanism that might be driving their tumours.
"We are in limbo," Mr Binnie said. "We don't know what's to come in the future with Victoria, but we know the work Matt does around this through HMRI and RUN DIPG is crucial.
"We need to get as much funding as possible to help if anything is ever going to change. It is frustrating, and heartbreaking, to watch your child suffer with something that has no cure, and no clear way of attacking it.
"But Matt is on an absolute mission, and that passion is inspiring. I can't thank him enough for what he has done for us, even when he is going through the worst time of his life as well."
A Go Fund Me campaign, called Little Victoria "Tori" Binnie, has also been set up to fund her experimental treatment.
Dr Dun said DIPG may be rare, but it was responsible for the most paediatric-associated disease deaths.
"It's something that we just shouldn't stand for," he said. "We shouldn't stand for a less than 1 per cent survival rate. These kids didn't do anything to anyone else, they need our support, and the government needs to get on board with this."
Dr Dun said it was "just not viable" for pharmaceutical companies to invest money in rare childhood diseases.
The pipeline was "too long" and "too expensive".
"If a drug company came up with a drug for DIPG, it would take them 10 years, and cost them 100 million bucks, and they would treat 15-to-20 kids a year - so there is no return on investment for them," Dr Dun said.
"So it is up to people like me and HMRI and the University of Newcastle, and other academic institutions, to tackle rare childhood diseases, because otherwise, there will be no improvement. That's what we are facing.
"It's a real battle. A really expensive battle.
"And it's a battle that needs to be funded by the government, and things like RUN DIPG and other fantastic philanthropic organisations, because otherwise, we are never going to make headway for any of the rare childhood cancers that take more kids than any other disease.
"It is costing us a fortune to try to do, but we are determined, and we will continue."
Dr Dun's fundraising group, RUN DIPG - which also raises money through marathons, swims, dances, treks, and paddles - has raised about $90,000.
It has helped fund two full time post doctoral staff, a research assistant, and two students to help Dr Dun piece the puzzle together.
"There is good work going on, but in terms of breakthrough treatments, we don't have one yet," he said.
"But we just keep fighting."
Josephine was the first child to receive a drug that Dr Dun discovered in trials for adult brain cancer.
"Everything she is on is still experimental and being worked up in our lab, and it has kept her alive until now," Dr Dun said. "But we have had to totally fund it ourselves. We have had to run marathons to do it."
Dr Dun said DIPG robbed children of their ability to move.
"Josie can't move, she can't talk, she can't walk, she can't swallow," he said. "It just robs them of any kind of freedom.
"So, we run, and we will continue to run."
Dr Dun said they had also raised money separately to support Josie's treatment, which costs about $900 a week.
"When it's experimental, you have to pay for it all yourself, because the drugs are not on the PBS," he said.
Dr Dun would love to see a research centre specifically for children in the Hunter - a HMRI just for kids - that could support clinical trials.
"Our inability to conduct paediatric clinical trials is the reason why almost every kid with cancer has to go to Sydney or Melbourne or travel internationally to get the treatment - particularly if it's a rare cancer," he said.
He would also like to see paediatric radiation requiring a general anaesthetic become available at John Hunter Hospital.
"We were in Sydney for eight weeks all up, and it was a nightmare being away from home. Our son was only one at that stage, and we had to leave him everyday with his grandparents while we went to the hospital from 8am until 3pm, every day," he said. "It was just a nightmare."
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