Children’s Cancer Foundation launch Light Up Australia campaign

Hayden Clements has fought brain cancer since he was five and advocated for fellow cancer kids — but his own battle is far from over.

Brain cancer survivor Hayden Clements, 11, met Ricky Ponting and Gillon McLachlan to launch the Children’s Cancer Foundation’s Light Up Australia campaign. Picture: Tony Gough

Hayden Clements was 45 minutes into what would have been 10-hour surgery on his growing brain tumour when his parents received a crucial call.

The then-five year old’s oncologist at Melbourne’s Royal Children’s Hospital had found another viable treatment option: a clinical trial that would be funded by the Children’s Cancer Foundation (CCF).

Hayden had already begun the trial – which involved having two types of chemotherapies for a year, plus steroids, operations, rehab and regular testing – two weeks before he landed on the operating table, and the call revealed it had shrunk the tumour in his brain stem by 5mm.

“That was enough to save him having the surgery,” his mum, Simone Clements, said.

“They were going to operate on an inoperable tumour (because) the tumour was being quite aggressive to treatment.

“The trial not only saved his life, it saved the quality of his life. If he had the surgery, he probably would be permanently paralysed.”

Hayden was diagnosed with pilocytic astrocytoma shortly after his fifth birthday. Picture: Instagram

Testing and operations remain a regular part of the now-11 year old’s life. Picture: Instagram

For the next six years, Hayden’s condition steadily improved. He has even become a childhood cancer advocate, sharing his experiences with 23,000 Instagram followers.

“He’s gone from being in a wheelchair to wearing an ankle foot orthosis to running around with his friends,” Ms Clements said. “He inspires all of us.”

His and his family’s desire to give back to the CCF led to him meeting two of its high-profile supporters, cricket legend Ricky Ponting and outgoing AFL chief executive Gillon McLachlan, to kick off the non-profit foundation’s Light Up Australia campaign.

But the timing of the campaign is bittersweet for Hayden, his mum, dad Richard and siblings Carlee, 11, and Riley, 15. On the eve of its launch, the 11-year-old’s latest MRI results found a “potentially concerning growth”.

“We are heartbroken,” Ms Clements said.

“We knew that potentially his tumour could and might regrow one day.

“All we can do now is monitor this, we do not know what will happen. We assume that at some point, this tumour may impact on Hayden physically again. We may face chemotherapy again and he may go back to where he began, which is really disheartening.

“But for now, while it remains small and is not impacting him, we take one day at a time.”

Hayden with his twin sister, Carlee. Melbourne landmarks will light up in yellow to support the cause. Picture: Tony Gough

Coinciding with International Childhood Cancer Awareness Month in September, the Light Up Australia campaign aims to raise awareness and funds for the CCF’s 37 programs covering clinical trials, research and care, and support services for children and their families.

CCF chairman Jeremy Smith said among these was the “revolutionary” Victorian Paediatric Cancer Consortium: a virtual network linking eight institutes including the Royal Children’s Hospital, Peter MacCallum Cancer Centre and Melbourne and Monash Universities, to “drive children’s cancer research in Australia for many years to come”.

In addition to funding the expensive clinical trial, the CCF’s support for the Clements family also involved paying for counselling and putting on morning teas during their hospital stays.

The foundation will light up Melbourne landmarks, including the MCG, Bolte Bridge and Rod Laver Arena, in yellow on the night of September 1 to kick off the campaign, which aims to add to the $2.8m raised at August’s Million Dollar Lunch.

Each week, 20 Aussie kids are diagnosed and three die from cancer, making it the nation’s deadliest disease for children.

But in 40 years, only 12 drugs have been approved for childhood cancer compared to more than 500 for adults.

To donate, visit: donate.childrenscancerfoundation.com.au/LightUpAustralia

CHILDHOOD CANCER IN AUSTRALIA

-20 children will be diagnosed with cancer each week

-3500 kids diagnosed per year are under the age of four

-Three children will die of cancer every week

-Cancer kills more children than any other disease in Australia, with one in five children diagnosed not surviving

-More than half of childhood cancer survivors are left with chronic, long-term physical, cognitive and mental health issues from the treatment toxicity

-Cancers that occur in both adults and children act differently in children and require different treatments

-In 40 years, only 12 drugs have been approved for childhood cancer treatment while more than 500 have been approved for adults

-At least 4000 family members per year are affected by childhood cancer

Source: Children’s Cancer Foundation