“You’re thrown into a world you’re not prepared for” - Sam
When most parents imagine their child’s future, they picture birthdays, milestones and their dreams coming true — not funerals. But this became Sam’s reality when her son, Jett, was diagnosed with brain cancer at just 13.
For 14 months, Jett endured excruciating headaches, severe cramping down the left-hand side of his body and, eventually, difficulty walking. Despite 12 visits to the doctors begging for help, no clear diagnosis was made, and his symptoms were put down to anxiety.
But Sam, a headteacher by profession, trusted her maternal instinct and knew something far more serious was wrong.
After exhausting every option, Sam reluctantly agreed to her mum’s suggestion that Jett visit his uncle in Queensland for a holiday, hoping a change of scenery might help.
That was when disaster struck.
“Just as he was stepping off the plane, the cyst around his tumour exploded and crushed his optic nerve,” explains Sam.
Jett was finally diagnosed with brain cancer — and doctors discovered a massive cyst growing dangerously close to his optic nerve.
The cause of all Jett’s symptoms had finally been uncovered. But it was too late to save his sight, and Jett was left permanently blinded.
“They needed to transport Jett from Mackay to Townsville for urgent surgery,” says Sam.
“His cyst was so large and had moved his brain so far, they didn’t think he’d survive the flight. I had to say goodbye to Jett over the phone.”
For Sam, the early days after Jett’s diagnosis were incredibly distressing and overwhelming. She describes “being given so much information, and you have to make so many decisions very quickly”.
“You’re thrown into a world you’re not prepared for. The process of fighting for Jett’s future was soul-destroying,” she says.
The path ahead is still uncertain for Jett and Sam, and full of scenarios no parent should ever have to face.
“The bit that I’ve found the hardest as his mum has been planning his funeral in my head, but trying to plan for his future at the same time.”
Sam
National Advocacy Service client
But Jett and Sam have found support and practical help through the National Advocacy Service (NAS), a joint initiative of Cure Brain Cancer Foundation and Peace of Mind Foundation.
Since its inception in 2021, NAS has supported over 2,210 families and helped provide over $134 million in funding for people with brain cancer.
Through the one-on-one support NAS provides, Jett and Sam are now connected with vital services such as the NDIS, helping to ease the financial, physical and emotional burdens as they continue to navigate Jett’s treatment.
The National Advocacy Service is 100% community funded. It exists solely because of people like you, whose support powers the moments of support and connection that this vital service provides.
