The surreal moment this man saw a piece of his brain in a bank

Asmall of piece of 21-year-old Max Shearer’s brain is kept locked in a bank in Brisbane.

Shearer has visited the Queensland Children’s Tumour Bank – built to collect paediatric tissue for research into, and treatment of, childhood cancer – just once to observe his donation.

He says the moment he saw the rare tumour, discovered when he was 11 years of age, was “surreal”.

“Seeing this thing that started this whole journey was wild,” he says.

Shearer brushes back his fringe and searches through his thick brown hair for two concealed white lines.

But for these symmetrical scars, there’s no evidence he was seriously ill as a child.

It began with debilitating headaches when he was nine.

“[They] just wouldn’t go away,” he recalls.

“[I wasn’t] able to do anything; I couldn’t stand [or] lay down, I was just in all this pain.”

His parents sought advice from doctors, but no medical explanation was found.

By 2014, the following year, the headaches had become more frequent, and Shearer was regularly ending up in emergency.

“My parents knew something was up … the doctors would do all the tests but when they didn’t find anything, they would just send me home.”

During one episode, when he was about to be discharged from the emergency department at the Mater Hospital, a passing doctor suggested a CAT scan.

Shearer had no concept of what they might find.

“I was in this crazy pain ... lying in this room crying, saying to my mum, ‘What’s wrong with me?’ because I knew something was up, I just had no clue what it was.”

The scan found six tumours on Shearer’s brain.

The largest, about the size of an egg located on the midbrain, had caused hydrocephalus, a condition leading to excess fluid on the brain. This explained the “hectic” headaches.

“There were all these doctors looking at the screen [with the scan results]. It went from one doctor, to two doctors, to five doctors, to 10,” Shearer says.

“Mum just squeezed my hand and said: ‘It’ll all be OK. Don’t worry, we’ll get through this.’ ”

Shearer underwent emergency surgery to drain the fluid on his brain that night. A short time later, he had a dual craniotomy to “debulk” (remove as much as possible of) the primary tumour on his midbrain, and remove another tumour in the ventricle system entirely. The other four tumours could not be operated on.

“I didn’t really have time to think about what was happening, I just had to [go] with it,” he says.

At first, doctors were unsure what kind of brain cancer Shearer had.

The tumours were donated to the Queensland Children’s Tumour Bank and samples were sent to the US for testing, which is where the diagnosis of a rare type of brain cancer called ganglioglioma was made.

The QCTB was established in 2008 and is one of the few free tumour banks in Australia.

It was funded by the Children’s Hospital Foundation, an organisation that has invested more than $256 million for equipment, research and support for sick children.

This year, the foundation celebrates its 40th birthday, a milestone its Director of Impact, Nick Van Dyke, hopes will bolster fundraising efforts.

“The one thing that hasn’t stopped or changed is kids still getting sick and injured, it’s going to continue, unfortunately,” he says.

“But the generosity of Queenslanders has enabled incredible breakthroughs from a research perspective, and new treatments that are now ensuring that kids are getting the best care and getting home as soon as possible.”

Shearer is an ambassador for the foundation and has been fundraising for other sick kids since he was 11, when he ran his first Bridge to Brisbane.

“I wanted to do whatever I could because I knew how hard it was [for kids going through cancer treatment],” he says.

He has raised $150,000 in that time, and will complete his 10th Bridge to Brisbane this year.

“I ran my first 10 kilometres while going through chemo … it was nowhere near as hard as the brain surgery [the year before], so I’ve just kept it up ever since.”