Monique Squires was about to turn four when she was diagnosed with an aggressive form of brain cancer.
Her mother and father, Danielle and Darryl Squires, were shocked.
“She was complaining about headaches, some type of dizziness. Some mornings she’d wake up and vomit, just very randomly. Then one day her eye turned in,” Ms Squires said.
“We were flown to the Royal Children’s Hospital where later on we were told that Monique had DIPG (Diffuse Intrinsic Pontine Glioma), a very aggressive brain tumour, and there was nothing they could do.
“I’ve never experienced shock in my life, my whole body just shook.”
Monique was given only months to live and received radiation treatment to try and prolong her life.
“Both of us were crying, saying, ‘There must be something, please, there must be a miracle’,” Ms Squires said.
“The answer we got was ‘No, sorry there’s nothing we can do. Sometimes we don’t have the answers’.”
Monique died 13 months after she was diagnosed, leaving behind her twin sister Zoe, now six, and her older sister Olivia.
Danielle, Olivia, Zoe and Daryl Squires hope other families don’t go through what they did. (ABC News: Danielle Bonica)
At the Royal Children’s Hospital in Melbourne the Federal Government announced it would put $5 million towards a national trial offering personalised treatment to children with high risk brain cancers.
The trial was started by Zero Childhood Cancer in late 2015, with the Children’s Cancer Institute (CCI) in Sydney and the Kids Cancer Centre at Sydney Children’s Hospital.
CCI executive director Michelle Haber said the funding would be a “game-changer”.
“Brain cancer is the most common solid tumour in children and it’s responsible for the highest number of cancer-associated deaths in kids,” Professor Haber said.
She said about 70 children were diagnosed with high risk brain cancer each year in Australia, and statistics showed about 40 per cent would not survive.
“It’s a shocking statistic and it basically hasn’t changed for the last 30 years or so,” she said.
“This program is based on the premise that the reason that we can’t cure the majority of these kids is that a one-size-fits-all approach does not work, because each child and each cancer is different.”
Each child in the program will undergo genetic profiling and be tested for their response to specific drugs to find which ones are most effective and might lead to recovery.
The Squires family, who live near Echuca in Victoria’s north, spent many hours travelling to and from Melbourne for treatment.
“It was a tough journey, full of hospital appointments, radiation therapy treatments, it wasn’t easy,” Ms Squires said.
“She got to have a Make-A-Wish … we went up to the Gold Coast and she got to meet her idol Scooby-Doo. She did experience some good times in her tough times.”
Ms Squires said she wanted the trial to provide other families with hope.
“It’s too late for us, but you can’t dwell on that,” she said.
“It does give you hope speaking to these professors and researchers that in their heart and soul that they want to stop children like Monique passing away from this terrible disease.”