When I first met Samuel Symons, he was at the back of a bus full of Year 8 boys and their mothers on a whistlestop tour of China.
It was 2005 when fake high-end brands were easy to buy. Samuel’s classmates fidgeted as Gucci bags and questionable cashmere pashminas passed between us mothers. But Samuel sat contently, muttering fragments of the British television sitcom Black Books. Huge blue eyes and a smile that wrapped around his face. I knew then he was someone special.
Each time we got to a new hotel, Samuel’s mother, Elly, grabbed a small cold pack and got off the bus fast. She had a stash of drugs that needed refrigeration. Samuel had a thick keloid scar across his throat, the calling card of recent surgery for thyroid cancer, and was on medication.
None of this bothered the teenager who was first diagnosed with cancer when he was four — a brain tumour called glioma. Doctors thought that if he survived, the intense radiation of his young brain would make it unlikely he would ever finish high school.
Red and Elly Symons with their sons Samuel, Raphael and Joel when the children were young. (Supplied: Symons family)
Samuel spent most of his childhood in and out of hospital. He had several hundred scans and a dozen operations for brain and thyroid cancer.
“I think after being so close to death that I could give it a little peck on the cheek, even then I don’t tend to think about it,” Samuel later told me.
“I was too busy trying to stay alive and keep living, that I really just didn’t care about death, and never have and never will.”
Guest speaker in 2007 at a fundraiser for Brainwave that helps children with neurological disorders, Samuel had the crowd in stitches.
“You can’t change what’s happening inside you with cancer,” he said. “So what you need to do is try to fix everything around you, like for instance, make sure you have a good bed, good food, all the right drugs — you know, morphine, top of the range.”
I learnt pretty quickly that dry humour was how it rolled in the Symons family.
Samuel’s father Red Symons was the early morning presenter of ABC Radio Melbourne, well known for his stint in the band Skyhooks and the comedy show Hey, Hey It’s Saturday.
When I asked the family if they would consider Samuel telling his story in an episode of Australian Story, Red was reluctant. Samuel’s illness had always been off limits for media.
“I did feel that he might well be misrepresented and treated in a rather tabloid way,” Red said.
“If you’re going to tell this story, it should be told properly. No good could come of him being poor little celebrity, weepy boy.”
Elly Symons (right) says her family will be carrying on Samuel’s mantra of living life with kindness for others. (Supplied: James Pendlidis)
But Elly was proud of the way her son just got on with the business of living in his unassuming and gentle way. Samuel hoped his story might help other young people with cancer.
“I used to think what would it have been like if I hadn’t had any of these surgeries or any of the cancer or anything,” he said. “But then what’s the point of thinking about the past when you can just think about now?
“Cancer itself has given me the determination to do things in life and understand other people.”
So, we agreed I would follow the family for two years until Samuel was 18. Only then would the story go to air.
‘War on abnormal’: Samuel’s final weeks
Elly Symons with her son Samuel on his graduation day from the University of Melbourne. (Supplied: Elly Symons)
Samuel seemed like a “Teflon man”, defying one prognosis after another, including the level of education he attained: in quick succession, Year 12, an arts degree at the University of Melbourne, majoring in psychology, and then a master’s degree in management.
His paid job was in human resources. But it was the volunteer work at the Salvation Army, the Greek Cultural Centre (his mother comes from a Greek and Cypriot family) and with young patients being treated for cancer that really filled him with pride.
Early this year Samuel took me through the new youth centre at the Peter MacCallum Cancer Centre like he owned it. And I guess he kind of did.
He had spent two years on an advisory board set up to provide a nice space within the hospital where younger patients could hang out with friends and family.
“I saw what wasn’t there when I was that age and didn’t want anyone else feeling like this was a cold, confusing place,” he said. “Who needs that!”
Samuel dedicated his time to volunteering at a number of organisations, including the Salvation Army. (Australian Story: Belinda Hawkins)
Just as he was turning 27 in May this year, the Victorian Government gave him an award in recognition of his work.
But by then, Samuel had been diagnosed with a new brain tumour, this time a glioblastoma multiforme.
“At that point, every measure that could be taken was taken,” Elly said.
“Unfortunately, there hasn’t been a significant change in the treatment of brain cancer in decades, and this is something that we really need to put a lot more money into research.”
When Elly suggested the family go on a holiday, Samuel said no, he’d rather go to work and feel normal. And for a while that’s exactly what he did.
His younger brothers, Raphael, 25, and Joel, 20, became his “lieutenants” in the war against abnormal. It was all about football, games and ticking off the youngest. They’re made of the same stuff as him.
Samuel Symons (centre) had a close bond with his younger brothers Raphael and Joel. (Supplied: James Pendidis)
Ten days ago, I saw them by his bedside at the Peter MacCallum Centre, squeezing his hand, worrying about whether he was too hot or too cold, sitting quietly as he slept, just watching him breathe, devoted.
“He was the most resilient person I know,” Joel said. “He flirted with death so many times that it became second nature to him. It stopped scaring him and started humouring him. He took that humour and gave it to everyone he knew.”
Last week Samuel died.
“He wanted everyone to be kind to each other,” Elly said. “And I think that is really something that we should all be striving for, and that’s what we will be doing as his family in his honour.”
His father Red asked for privacy as he grieved the loss of his “beautiful son”.
I thought about the many times that Samuel and I caught up for a chat since that bus trip 13 years ago. Each time he’d farewell me with, “Well, Belinda, we’ve had a bit of fun, haven’t we?”
Yes, Samuel, we all did. And thank you.
Watch the rescreening of The Story of Samuel on Australian Story at 8pm on ABCTV and ABC iview.