Just over a week ago, Evie Whipps appeared to be a happy, healthy child living in country Western Australia.
Now her life has been turned upside down after the 10-year-old Bunbury girl was diagnosed with an extremely aggressive brain tumour known as diffuse intrinsic pontine glioma (DIPG).
"We got a phone call from the GP saying that they found something and he used the word glioma," her mother, Pia Whipps, said.
"He just said, 'It is very urgent that you get Evie out of school'."
That was on Valentine's Day.
Ten days later her family of five were staying in a Perth hotel so Evie could receive urgent treatment for the rare tumour that has no cure.
While radiation can slow the growth of the tumour, almost all children with DIPG die within a year or two of being diagnosed.
A 'tough time' for the family
Evie's dad Josh Whipps said it was difficult to put into words how the family's life had changed so rapidly.
"It's been a really tough time for our family, our extended family," he said.
"You always see stuff like this happening and you never really think that it's going to happen with yourself or your own family."
Ms Whipps had heard about a child diagnosed by DIPG in the area prior to Evie's diagnosis.
"I'd seen it, definitely. I didn't fully know what it meant," she said
'It breaks my heart'
For fellow Bunbury resident Rhys Robinson, hearing about another family's battle with DIPG was heartbreaking.
His eight-year-old daughter Heidi was rushed to Perth in 2016 when doctors saw her symptoms.
"I flew up on the plane with Heidi, it was her first plane trip ever which she was pretty excited about … she didn't understand," Mr Robinson said.
"She was a beautiful little girl, full of life. She loved her laughs."
After being told Heidi would die within six weeks without treatment, her family put on a brave face and made every moment count.
This included a family holiday that stepmother Sam Lynn remembered as one of Heidi's happiest moments.
"Her school fundraised for us to go to Bali as a family," she said.
"She was over the moon. She couldn't wait to get out and about … she was living her best life."
Heidi died in 2017, 11 months after she was diagnosed.
Cluster a cruel coincidence
On average, about 20 Australian children a year are impacted by DIPG.
In the greater Bunbury area, there have been several children who have battled the condition in recent years, including Evie, Heidi and a seven-year-old girl who died in 2020.
It is a cruel coincidence that has been seen in other parts of Australia.
But Sydney Kids Cancer Centre specialist David Zielger said it was "not uncommon" to see clusters of rare cancer.
"If you think about if you have a chessboard and you've got 64 grains of rice and you throw those grains of rice onto a chessboard, you're not going to end with one grain of rice on each square," he said.
Professor Zielger said it was a "random" condition that occurred in a small amount of kids across Australia.
"We don't know what causes it … there's nothing we know of in the environment that children have been exposed to that actually causes it," he said.
"We see it occur in children from all different backgrounds, cultural backgrounds, from different ethnicities, from all walks of life, rich, poor, city, country."
"It's an absolutely devastating diagnosis."
A new trial and new hope
Evie's diagnosis comes as doctors in the eastern states launch Australia's first clinical trial that will use CAR-T cell technology to genetically modify a patient's own immune cells and teach them to attack the tumour.
Professor Zielger said that while it was early days, the trial was a promising step forward.
"It's actually one of the first trials of its kind in the world," he said.
"We know it has been tried with children with leukaemia and the results have been really quite spectacular.
"We're really hopeful that we might be able to able to finally start making a difference."
Known as the Levi's Catch trial, it is is named after one of Professor Zielger's patients who died from DIPG.
Family to raise awareness
Ms Whipps said Evie's oncologist told her about clinical trials immediately after breaking the news about her diagnosis.
But Evie's mother said she had many questions about why there were clusters of cases and said she would be searching for answers as soon she had the chance.
Ms Whipps also wanted to raise awareness about DIPG, saying it had been difficult to get some medical professionals to take Evie's symptoms seriously before the diagnosis.
Meanwhile, Evie said she understood that she had "a lump in her head", and that radiology would be the first step of her treatment.
But as the family waited at their Perth hotel on Friday, the 10-year-old said she just wanted to go for a run.
"From a purely kid-factor … if nothing else, she's so bored," Ms Whipps said.
"She wants to run, she wants to jump, she wants to swim.
"We're working round the clock to try to give her all these amazing things … but also, as Mum and Dad, we also have it in the back of our mind that if things do get worse, we've done everything that we could to just make her as happy as possible."
