Angus was nine when diagnosed with cancer - now he has written a book about his 'life or death' battle

Angus Cunningham was just nine when a cancer diagnosis upended his young life.

After months of treatment he was given the all-clear, but just over a year later it was back, resulting in a life or death battle that continues to shape his life today.

Now 22, Angus has written a book about his fight with childhood cancer and its aftermath, including the huge toll it took on his mental health.

He's done so to thank those who supported him, including the charity that helped save his life.

Angus was in year four when he noticed the lumps in his neck.

He told nine.com.au this week the naivety of childhood meant his first thought was that it made him more like his revered older brother, Henry.

"Henry had a benign tumour on his rib and I had always been a bit jealous of it," he said.

But when he showed the golfball-sized lumps to his parents, Steve and Trisha – who both had medical backgrounds – they were immediately alarmed.

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After a trip to the GP, blood tests, an X-ray and ultrasound initially found no cause for concern, he was referred to Sydney Children's Hospital and underwent a biopsy.

Angus clearly recalls sitting in a room with his parents at a follow-up appointment when a surgeon said the words "Hodgkin's Lymphoma".

Moments later he would meet Toby Trahair, the oncologist who would oversee his treatment, which was to begin immediately because the disease had already spread to both sides of his neck.

While Hodgkin's Lymphoma is considered one of the more treatable cancers, with a five-year survival rate of about 90 per cent, it is considerably rare in children Angus's age – an ominous sign of what was to come.

Angus's idyllic childhood in Sydney's Sutherland Shire, where he lived with his parents and three brothers, including Noah and Darcy, was tested as they navigated their new life as a family touched by childhood cancer.

Angus underwent a course of chemotherapy, which lasted three months and came with the usual side effects, such as hair loss.

"To me it felt like forever," Angus said.

"But I wasn't really scared because I was a kid and very naive."

The local community rallied around the family, with Angus's schoolmates even shaving their heads in solidarity.

By the end of that year, there was no sign of cancer and life somewhat went back to normal.

Angus had a blood clot where his chemo port had been, and needed twice daily injections of blood thinner. He also went back and forth to hospital for regular check-ups.

He sailed through year five then started year six.

He had been elected school captain and was excited about the mid-year trip to Thredbo when the lumps in his neck came back.

"I noticed them and I knew straight away what they were, and my parents knew," he said.

"We went to see Toby and I think I knew straight away it was not good. It was unspoken, but I knew it was bad."

This time, the cancer had spread throughout his abdomen.

Unbeknown to him at the time, his prognosis was poor.

"My mum and dad kept it from me at the time but it was 50-50 that it would respond to treatment," he said.

"I can't even imagine being told someone you love, your child, has a 50-50 chance.

"It was life or death."

While his parents downplayed how serious it was, Angus, by then 18 months older and wiser, was scared.

He had developed anxiety around his health, which was made worse when he started treatment.

He could not have the same treatment again, so was given a newer chemotherapy drug, Brentuximab, which was meant to have fewer side effects.

But Angus recalls he had a terrible reaction to the first round of the drug, which "set the tone" for the rest of his treatment.

"I remember I would have a panic attack every time I would get a needle," he said.

After two rounds of treatment, tests showed little improvement, so doctors changed track again – this time putting him on a much stronger form of chemotherapy.

"I was very, very sick and lost all my hair again," he said.

After tests showed the cancer was still growing, they moved on to radiotherapy – something rarely prescribed to children because of the risks involved.

"I remember the burns and the taste in my mouth, and not wanting to eat," he said.

This was followed by a stem call transplant, which saw Angus placed in isolation.

"I have never been more sick in my entire life," Angus recalled. "They pretty much almost kill you to make you better."

Angus left hospital in a wheelchair and went home to recuperate.

"I remember looking in the mirror and I didn't recognise who was looking back at me," he said. "I looked like a skeleton."

A PET scan later revealed he was cancer-free, but he still had a 50-50 chance of another recurrence, so his parents did their own research.

They learned the drug he previously tried, Brentuximab, when used as an adjuvant (preventative) therapy, could lower the chance of recurrence.

Their oncologist was on board, but the drug was not approved under the Pharmaceutical Benefits Scheme (PBS) for adjuvant therapy in recurrent Hodgkin's Lymphoma so his parents were told they would have to pay for it themselves – something they were preparing to do when charity Rare Cancers Australia offered to fundraise the $187,000 needed.

This led to a 2015 appearance on Nine's A Current Affair and raised enough money for Angus's treatment, with some left over to help other rare cancer sufferers.

"It was a massive thing both in the shire and nationally, to see a whole country really come together for someone," Angus said.

It wasn't just the money – it was the way the local community supported his parents and siblings by setting up rosters to drop and pick up kids at school and after-school activities, making sure the boys had a home cooked meal every day and their laundry was done.

"Everyone rallied around the family," he said.

Angus underwent 16 rounds of Brentuximab – something that was tortuous.

"My anxiety was so bad," he said. "I was older so I could get on the internet and read about side effects.

"At one point I honed in on the fact it had been linked to mad cow disease."

The treatment worked, but his mental health continued to suffer in the years that followed, and when he was in year 10, he was diagnosed with post traumatic stress disorder and a panic disorder.

"I would feel like I was going to die," Angus said.

Today, Angus remains cancer-free, but the treatment that saved his life has left him with a higher chance of developing other illnesses.

"Thyroid cancer, cardiovascular disease, skin cancer – the treatment means I burn easily – leukaemias, lymphomas, abdominal cancers," he said, his voice trailing off.

Despite being an adult, he still sees his childhood oncologist for his check-ups, and is a big supporter of Rare Cancers – the charity that saved his life.

While he had shied away from telling his story and tried to 'block out' his cancer battle, in 2022 Rare Cancers asked if he would speak at CanForum, which is held each year at Parliament House in Canberra.

It unlocked his memories, including some he wrote down as a child.

He started journalling, and within months, realised he had the makings of a book, which he wrote over the next three years.

He also read snippets of his mother's diary from that time.

"It was probably the hardest thing I have ever done. There were times I had to stop," he said.

"Being older, I was able to grasp the enormity of what they went through."

The result is the memoir Twice Before Twelve, which will be released on February 27 to coincide with Rare Disease Day.

He has dedicated the book to his parents, who have raised thousands of dollars for cancer-related charities, but it is also for his brothers.

"My family is never going to be the same," he said.

"Seeing your brother go through that but also everyone's attention was on me.

"Mum or Dad were always at the hospital. I acknowledge their suffering as well."

The memoir is also a show of gratitude for the community, who rallied around him when he needed it most, and the charities that supported the family, including Steven Walter Children's Cancer Foundation, Canteen Australia, Starlight Children's Foundation Australia and others.

"As much as it's my story, it's everyone's story," he said.

"It shows the goodness of everyone when someone is sick and how they all just showed up."

Angus said life never goes completely back to normal when someone has had cancer, but hopes the book offers hope to families and children battling cancer today.

"Just keep on going. It gets better," he said.

"I know it is hard. It's hard missing school and school camps and graduation.

"It's such a cliché, but what doesn't kill you makes you stronger."

He said his battle with childhood cancer also gave him a unique appreciation for life that he might not have otherwise.

"It is easy to get caught up in work, or failing a uni assignment, but after cancer you are a superhero almost.

"You are able to get through anything."

The medical information in this article is general in nature. Please see your GP or specialist health care professional for advice that is tailored to your health needs.

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