When your precious daughter is one of only 21 people in the world with a particular type of cancer, science is everything. One mum is doing all the fundraising she can to help make a difference - including dressing up like a pirate!
Last year, when little Isla was just four years old, she began suffering headaches that increased in intensity. They came and went. Sometimes they were so painful Isla would vomit.
Doctors believed they’d pass, that a mix of pain killers and rest would see her through. But mum Joanna was worried, nonetheless.
“This went on for months, and in that time she was also pointing to a spot on the back of her neck, so we wondered if it was whiplash or something like that,” Joanna says.
“I remember thinking to myself that it’s so unlikely it would be a brain tumour. After all, I said to myself, what are the chances?”
The headaches increased to the point where Isla was taken to hospital on a few separate occasions. She would be screaming in pain, but simple, over-the-counter medications, would eventually help the pain to go away. She also saw osteopaths and chiropractors, but nothing made the headaches go away permanently.
Then one day, while Isla was at preschool, her carers rang Joanna sounding shaken. Isla was screaming in pain. She was inconsolable. And this time her movements had become unsteady.
“We took her to our local hospital and watched her deteriorate in front of our eyes,” Joanna recalls. “They eventually gave her a CT scan and that’s when they told us there was a problem. They didn’t know whether Isla had a tumour, or what it was. They just knew there was a problem in her brain.”
After further testing it was revealed that Isla’s brain had swollen. She was rushed to The Children’s Hospital at Westmead where she received steroids to reduce the swelling.
Specialists said they didn’t find a tumour. Instead they found what looked like a sugar-coating of cells around Isla’s brain. At first they didn’t know what it was. In fact, the condition was so rare that, in the beginning, specialists weren’t entirely convinced it was cancer. But it was.
A biopsy revealed Isla was suffering with primary diffuse leptomeningeal primitive neuroectodermal tumour (PNET). Only 21 people in the world have ever been diagnosed with the condition. The chances were slimmer than Joanna ever could have imagined.
“It’s inoperable, obviously, because it’s all around her brain,” Joanna says. “It’s a stage four cancer.”
“Isla was put onto a clinical trial where material from her brain and from the cancer were sent away to have the DNA mapped. That showed how the cancer cells are linked to Isla’s DNA, and if there might be any other treatments the cancer might respond to.”
The tests revealed that, in fact, Isla had no tendency towards any type of cancer, meaning her condition made even less sense. It also revealed there were no additional treatments that might be more effective than a standard protocol.
Isla has completed six weeks of complete cranio-spinal radiotherapy. The physical tolls on her body, Joanna says, have been confronting. Radiotherapy was followed by chemotherapy, and Isla’s treatment continues now.
Pirates for a day
To help discover kinder, more effective treatments for children's brain cancer, Isla and Joanna decided to host a Pirate Day on Friday 22 May. At the time of publishing this story, they'd raised over $26,000 - vital funds that will be distributed by The Kids’ Cancer Project and The Pirate Ship Foundation to fund bold childhood brain cancer research.
“Isla had already done her part to help further research into brain cancer by participating in a medical trial and donating her tumour cells to The Children’s Hospital at Westmead Tumour Bank,” Joanna says. “But our family and friends wanted to do more because the statistics around childhood brain cancer are so awful.”
Read more: Proudly supporting the Tumour Bank at The Children’s Hospital at Westmead
Science, Joanna says, is all powerful in the battle against kids’ cancers, particularly brain cancers. And when a child is one of just 21 in the world to have a particular type of cancer, the only people who can make a difference are those at the very leading edge of research.
“Brain cancer is devastating on so many levels,” Joanna says. “It has completely changed our lives. The only treatments currently available are extreme and debilitating, which is why we are supporting medical research to find kinder, more effective treatments and hopefully, a cure, so that no child or family need suffer this in future.”
Where the money raised goes
In 2020, funds raised through Pirate Day events will be directed to a study lead by Associate Professor Joshua McCarroll, Team Leader of the Gene Therapeutics and Drug Delivery group at Children’s Cancer Institute and the Australian Centre for NanoMedicine, UNSW.
Read more: Behind the science | Associate Professor Joshua McCarroll
To register a Pirate Day event, visit pirateday.com.au or donate today and help fund the discovery of more effective treatments.