Just over two weeks ago, doctors in Melbourne told him that the cancer in his brain and sinus – which had been roughly the size of an iPhone –  had now spread to his spine.

“We were like, ‘OK it’s spread we still have to deal with it’ and then about half-an-hour later they pulled us into a private room and just said they had another look at the scans. And because of where it’s gone, and how big it is, and how much it’s spread, that it’s incurable and you’ve got a matter of weeks to months,” Aaron said.

“That was pretty hard to hear, but you know, you’ve got to deal with it.”

Through it all, Aaron has not lost his sense of humour and that has helped him and his family deal with the realities that lay ahead. 

“I just joke about it all the time,” Aaron said. “There’s no point being sad about it. It’s not going to help. Might as well still enjoy the time I’ve got.”

While receiving treatment in Melbourne, Aaron met a fellow sarcoma sufferer who runs the Laughter with Cancer program.

Mum Andrea said: “She just decided to laugh through it every day and we were the same. We were like the comedy act up in the ward at one stage.”

But if Aaron and his family have just one piece of advice, it’s go to the doctor and get checked if you are worried about your health.

“We’ve seen a lot of young people down in Peter Mac that have had leg aches, back aches for years and it turns out to be something hideous,” Aaron’s dad Alan said. 

It was just before Christmas last year when Alan dropped in to visit his son and realised that the sinus problem Aaron had was something worse.

“He had two months worth of sinus treatment and I hadn’t seen him for 10 days and I walked into his flat and I knew then it wasn’t sinus, it was something else. Something more hideous,” Alan said.

Alan and Andrea rushed Aaron to Warrnambool Base Hospital where at midnight they did a CT scan which revealed a mass measuring 7.5cm by 4.5cm by 4.5cm.

He was sent to St Vincent’s Hospital in Melbourne where they took a biopsy through his nose before being transferred to the Peter MacCallum Cancer Centre where they did an MRI, PET scan and tested his bone marrow and spinal fluid.

It was initially thought that it was a blastoma – a type of cancer that doesn’t spread –  but by New Year’s Eve further tests revealed it was a ethmoidal rhabdomyosarcoma which had started in the sinus and spread to the brain. 

The cancer was so rare, it was usually only seen in children aged up to eight, or in the elderly, Aaron said. 

“It’s hardly ever in people in my age. In the entire European Union and the United States you’d probably get four or five cases a year, if that. In the last 10 years there was only 40 people with it,” he said.

To undergo treatment in Melbourne, Ambulance cover has meant he has been able to use patient transport flights  – all up he has had about 10 flights to Melbourne. 

“The way Aaron was with his symptoms, a few hours in a car was too much pain and pressure,” his brother Aiden said.

Aaron may be able to have any further radiation treatment in Warrnambool when the new cancer centre opens.

Aaron had spent Christmas, New Year’s and his birthday in a Melbourne hospital. 

“I got chemo on New Year’s and got my second round of chemo on my birthday. So that was a nice present,” he said.

He underwent harsh radiation treatment and chemotherapy over five months and the tumour shrunk significantly. 

“He’s gone through hell and back. He’s had all the radiation treatment where your face is totally burnt, so he’s really pushed the boundaries as far as pain levels go,” Alan said.

The radiation treatment ‘fried’ Aaron’s tastebuds so much that food suddenly had no taste. “Food was just plastic in my mouth. Made me want to vomit whenever I had it, so I was just surviving off the shakes that you drank because it was just like drinking water, slightly thicker water and didn’t make me gag,” Aaron said.

Aaron pushed himself to drink the shakes because he didn’t want a feeding tube. And after not eating any food for four or five months, Aaron surprised his dad and took him out for dinner on his 53rd birthday.

And while Aaron now has 40 to 50 per cent of his taste back, some of his favourite foods he just doesn’t like any more. In fact, the taste of food had started to change in the months before he was diagnosed and he lost his sense of smell.

Aaron’s family say that while ‘cancer sucks’,  it has also brought out the best in people. They have received so much support from family, friends, employers and strangers, some of whom are even fighting their own cancer battles but have gone out of their way to cook a meal or help out.

“If love could cure cancer, it’d be gone,” Alan said.

They have been overwhelmed by the support from Warrnambool City Council where Aaron works as an Occupational Health and Safety officer.

Others such as Jarrod Hawker from The Loft and Josh O’Dowd at The Seanachi have rallied around Aaron, running fund-raisers. On Saturday, a worldwide 24-hour online gaming marathon will be staged to help raise money.

A My Cause page campaign has also raised over $9000 to help get Aaron to The Great Barrier Reef – a place he’s always wanted to visit – and they will head off as soon as they get a medical plan.

From July 9, Gail Jaensch will walk from Melbourne to Portland as part of the Walk for Brain Cancer fundraiser which she has called Steps for Aaron.

Andrea said Aaron had just found his niche. 

“He had the perfect job and he had plans,” she said. 

Aaron had always wanted to go to Canada and was planning to visit New Zealand with his dad as well as set off on a few camping trips. 

“That’s all gone by the wayside,” Alan said, although they are planning a ‘glamping’ trip. 

“We’re trying to put together some kind of bucket list. Once you actually have to make a bucket list, it’s actually quite hard,” Aaron said. 

But for now, he is happy just hanging out with friends and watching movies and playing video games. “Watching them sitting there talking about computers, playing games… Wow… that’s the norm of my life, and it’s about to end,” Alan said. 

“I know we’ve been planning to get up to the Great Barrier Reef but just what we’ve been doing with all his mates coming around, that’s creating wonderful memories and sometimes you don’t have to leave home to get that quality of life,” Andrea said.

“Speaking as a father. It’s so hard losing your son. He’s been a terrific kid,” Alan said. 

“Aaron, doesn’t drink, doesn’t smoke, doesn’t take drugs, doesn’t fight down the street. Good kid. Super fit. It just shows you that this disease is pretty indiscriminate and picks on some pretty descent people and other people seem to get away with breathing. A hard thing for us is we don’t get to have grandchildren with Aaron. You don’t get to see that. He’s my little boy.”

It hit Alan hard when about 30 friends and family came to visit in Melbourne recently. 

“You’re looking at your child and thinking, this should be a wedding, this should be a birthday. It’s a get together to say how much they loved him. So that was excessively hard for me that day,” he said.

Because of the rarity of Aaron’s cancer, the doctors at Peter Mac were consulting medical professionals all around the world, but through it all Aaron said they were “amazing”.

“We never knew how it was going to pan out till the end. Our plan with  Aaron was just to go through the 10 months of treatment and wait for what the scans were. Then they thought he’d go St Vincent’s and operate on whatever was left. That was our whole plan. It just didn’t work out that way. I think they were just as surprised and devastated as us,” Andrea said.

Aaron could still opt to have chemo into his spine, but doctors have said it would be such a minute benefit and he would be bedridden. So instead he will have radiation treatment on the tumours as they pop up, or get bigger, to relieve the symptoms. 

“It’s incurable, so I’d rather have quality of life towards the end rather than being really sick towards the end,” Aaron said. “They said weeks to months, but definitely not years.

“I always sit there thinking it’s a bit weird. I don’t really focus on the fact that I’m dying. I just wake up and do whatever I want to do. Just having fun and be happy really.”