Mum calls for change to child cancer treatments after death of son

A Gold Coast mum is calling for safer cancer treatments for children after the death of her son Henry.

Henry was diagnosed with brain cancer in 2023 and underwent radiation treatment near his brain stem which led to a rare complication that ultimately claimed his life.

“We need safe treatment options for kids,” Alex told nine.com.au.

A cheeky, active boy

In Alex’s mind, there are two versions of her son Henry: The boy that should have been, and the boy he was before he was diagnosed with brain cancer at the age of two.

“He was that cheeky boy. He was so active, and I was running around after him all the time,” Alex said.

“He would have started school last year. He’d be six now. And I picture what he would be like and how he would play with my youngest son, Teddy.”

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She still listens to his favourite music in the car, taking time out from her busy day to properly grieve.

A devastating diagnosis

It was in 2022 that the Gold Coast toddler came down with suspected gastro.

Parents Alex and Mark felt concerned, but not overly alarmed.

The two-year-old was a happy little boy and enjoying life with his two big sisters, Ava and Thea, and younger brother Teddy.

When Henry’s condition failed to improve, his parents took him to Gold Coast Hospital.

He was given anti-nausea medication and sent home, but he wasn’t the same.

Henry was picky about what he would eat, and began losing weight.

A month later, Henry tripped at the beach while chasing birds and hit his head. He was conscious, but unusually unresponsive.

Doctors at Gold Coast Hospital considered a CT scan, but after Henry appeared to recover, they took blood tests, which came back normal.

The following day, Henry took a turn for the worst. He began vomiting and couldn’t get off the lounge.

Back at hospital, a CT scan revealed a mass at the back of his brain, initially diagnosed as medulloblastoma. 

Henry was transferred to Brisbane, where surgeons relieved fluid around his brain before removing the tumour. Follow-up scans showed no visible tumour remained.

Still, Henry was unable to eat, swallow or speak after surgery and was diagnosed with ‘posterior fossa syndrome’, a known surgical complication.

His delayed recovery postponed chemotherapy for eight weeks.

Further testing later revealed Henry did not have medulloblastoma, but ATRT (atypical teratoid/rhabdoid tumour), a rare and aggressive childhood brain cancer.

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The new diagnosis meant Henry underwent six weeks of targeted radiation, followed by three rounds of high-dose chemotherapy requiring lengthy hospital stays.

Watching her son endure cancer treatment was confronting.

“I thought chemo was one drug. That sounds maybe a little bit naive, but I just didn’t know. I thought you got cancer, you got chemo.

“Now I know them inside out. I know it inside and out. I can name like 11 different chemo drugs, and they were the ones that Henry had.

“And I think the thing to know and the thing that really, really blindsided me was that child cancer and adult cancer, we treat them with the same types of drugs.”

In March 2023, nine months after diagnosis, Henry completed treatment. Soon after returning home, Alex noticed he was no longer weight-bearing on his right foot and had stopped using his right hand.

MRIs showed no evidence of cancer, but doctors identified changes in the tumour bed believed to be radiation damage.

Alex later learned it was likely radiation necrosis – a severe complication she had initially been told had less than a one per cent chance of occurring.

“With radiation he was put into a radiation machine where they would shoot the radiation into his brain. At the time there was no visible cancer in his brain, but they were radiating his tumor bed to try and eliminate any microscopic traces that were left.

“He developed radiation necrosis, where the tissue dies, essentially. That in turn caused the death of the tissue in that area which caused him to not be able to swallow or move or in the end breathe.”

Henry’s condition rapidly declined. He lost the ability to crawl, sit unassisted and eat safely. 

Henry died on November 3, 2023, aged three. There was no evidence of cancer, but his body could no longer withstand the extensive radiation damage.

Since Henry’s passing, Alex says the family takes “any and every opportunity to talk about him and keep his memory and legacy alive.”

When asked why she supports the Children’s Cancer Institute, Alex says childhood cancer requires dedicated treatments and cures.

Alex is hoping for research into cancer treatment designed specifically for children, with the hope for better outcomes for younger cancer sufferers.

“We need safe treatment options for kids, and I trust and believe in the Institute to deliver them. We just need to back them.”

The future of child cancer treatment in Australia

Professor Louis Chesler, Executive Director of the Children’s Cancer Institute, told nine.com.au 70 per cent of children who undergo cancer treatment suffer long-term side effects.

“More effective treatments so children not only survive cancer, but go on to live long and healthy lives,” he said.

“Children’s Cancer Institute is giving all Australian children with cancer access to world-leading precision medicine through the Zero Childhood Cancer Program. By using genomics to analyse each child’s cancer in detail, Zero helps doctors identify what is driving the disease and which treatments may be most likely to work – offering families more options and more hope. 

“This approach is particularly important for children with rare cancers, where there may be limited standard treatment options and no clear road map for care.

“Zero helps doctors look at the unique biology of a child’s cancer, potentially opening the door to more personalised treatment recommendations.”

Henry’s family are urging Queenslanders to donate to the Townsville to Cairns Bike Ride and help raise vital funds for the Children’s Cancer Institute. The Townsville to Cairns Bike Ride runs from Thursday 23 - Saturday 25 July.