In a video recorded in August 2018, 10-year-old Alec Austen can be seen laughing and joking with his oncologist, but just months earlier, this sweet, intelligent boy told his parents he’d be better off dead.
Unscripted and unstaged, Alec and Dr Luciano Dalla-Pozza tell it like it is.
Difficult diagnosis
It was March 2017. Alec and his identical twin Troy were getting very excited about going on their first big family holiday ever with mum Shirley and dad Peter.
Shirley, keen to avoid any hiccups on the much-anticipated six-week trip to Shanghai and Seattle, took the brothers for a dental check-up as their adult front teeth were breaking through.
“After examining Alec, the dentist told me to cancel our holiday,” said Shirley. “He saw a lump on Alec’s soft palette that hadn’t been there at the boys’ last appointment a few months before.”
“That was on the Friday afternoon,” said Peter. “We were both concerned but not overly worried. While it had grown fast, a lump could be anything.”
The following Monday, Peter spent the day with his son getting x-rays and CT scan before meeting with a dental specialist.
“It was only when I was called to discuss the results and the nurse asked me to leave Alec in the waiting room, that I got a really bad sinking feeling,” said Peter.
It was a tumour. But even after more tests, the position of it - behind Alec’s cheek bone between his jaw and skull - had the most accomplished professors and clinicians from two of Sydney’s largest hospitals baffled.
Surgery scheduled for the following May to get rid of “Larry the Lump”, as Alec called it, would reveal what the family were dealing with.
With the holiday on hold indefinitely, a large team of experts gathered in an operating theatre to work on the 32.5kg boy for what was an incredibly intense and invasive 13 hours.
To access and remove “Larry”, surgeons cut Alec’s lower jaw in half. Then, many layers of skin and arteries grafted from his wrist were used to reattach it and patch the hole left in his palette. Finally came the job of connecting arteries in his neck to the graft site so it would receive blood. Another more shallow graft from his thigh was needed to patch the wrist.
Alec recovers in ICU after an intensive and invasive 13-hour operation.
Alec was rushed to the Intensive Care Unit post-op where he was sedated so he’d remain completely still to allow his jaw to recover. He was hooked up to a ventilator by a tracheostomy tube with surgical drains leading out of his neck. After an anxious five days, tests on the mass revealed it was a rare childhood cancer known as Ewing’s sarcoma.
“The news was shocking, really shocking,” said Shirley, fighting back the tears. “I didn’t know what to do. All I could do was cry.”
“It was heart wrenching,” said Peter. “There was a sense of not being fully across what lay ahead of us, no understanding of what cancer really was, what toxic drugs were going to be pumped into our little boy’s body and their effects during and after treatment.”
Toxicity of treatment
The extremely complicated surgery gave no guarantee that every cancerous cell had been removed, chemotherapy and radiation were scheduled to ensure Alec was cancer free.
It was during the grueling nine-month treatment program that Alec said the words no parent wants to hear.
“Initially I kept asking why had this happened to Alec,” said Peter. “It took a long time for me to accept that childhood cancer is, for many, an unfortunate part of life.”
“But the treatment really affected his personality. I’ll never forget the day he told us, ‘I’d be better off dead’,” Peter said, his voice cracking with uncharacteristic emotion.
Between intense pain, nausea from the chemo, complete ulceration of his mouth from the radiotherapy, the location of his surgery and losing five teeth, Alec’s weight went down to 28 kilos despite being fed through a naso-gastric tube. And being immunosuppressed meant he was exposed to every type of infection.
“We had bags packed at the door ready to go as soon as his temperature would hit 38,” said Shirley. “That happened about nine times and we’d be in hospital for two or three days until he was stable.”
The Austen family L-R: Shirley, Troy, Peter, Alec.
Today, the whole family are glad the intensive treatment aspect of Alec’s cancer journey is over, especially Troy who missed his brother’s special friendship all the months he was sick and low.
However, it’s still a long road ahead. Alec must have MRI, CT and PET scans every three months for the next two years. Peter explained that there are also other long-term effects.
“Alec will need a dental reconstruction when he reaches his teens. And radiation may have damaged his pituitary gland so we’ll need to keep an eye on his growth and development,” he said.
“Plus we don’t know what long term effects the chemo treatment will have had on his heart, kidneys and liver.”
Chance encounter
“While we were unfortunately introduced to the ‘cancer club’, by all accounts we feel incredibly blessed,” said Peter.
Being grateful seems to come easily to this couple, who have been able to find inner strength and rally as a well-coordinated team. Peter can list all the miracle moments that have made both Shirley and himself believe that someone is closely watching over Alec.
The fact Shirley insisted they go to the dentist before the holiday. That their dentist knew the lump was suspicious. That Alec’s medical team were on high alert so when he contracted Sepsis, he was quickly rushed to ICU for life-saving treatment. That Alec has come through this experience a stronger, mature and resilient child. And for one chance encounter.
It was 1 September 2017 and the first day of Childhood Cancer Awareness Month. The Kids’ Cancer Project founder, Col Reynolds was at The Children’s Hospital at Westmead to see Alec’s oncologist, Dr Luciano Dalla-Pozza and present him with thousands of pledges collected from people all over Australia.
“A nurse told us about Col and his bus, so I took Alec outside to check it out,” said Peter.
See the moment Alec met Col for the first time at 3:44.
Later, when Alec was asked if he would like to be in a video with Dr Dalla-Pozza (Dr Luce) to help kids with cancer he didn’t hesitate to say “YES!”.
“Alec really wanted to be in the video with Dr Luce,” said Peter. “He needed to do it. It represented a positive outcome from what had been a really dark and horrible period in his life.”
Peter and Shirley hope their story touches hearts and minds. Their experience has shown them that childhood cancer is horrific and a huge problem, with science being the only solution.
“If it wasn’t for amazing human beings like Col, Dr Luce and all the unnamed scientists behind the scenes, our story may have never have been told. We are forever grateful," said Shirley.
“There are so many grieving families, so many lost young lives, it’s a universe you do not want to be part of,” said Peter. “The most wonderful thing is that scientists are out there dedicating their lives to find new cures so kids with cancer will never have to suffer.”
“The research has to happen. Ten years ago Alec wouldn’t have survived. In another ten years, his type of cancer may not even be an issue,” he said.
“There is one occasion that will haunt me for the rest of my life,” reflected Peter. “While Alec was receiving his final chemo treatment at the oncology clinic, behind a closed door a father was crying and sobbing for quite some time. I knew what he’d been told. It was gut wrenching. I hope that is never me, and I hope it’s never you.”
Alec rings the bell at The Children's Hospital at Westmead to celebrate the end of treatment, cheered on by his number one supporter, Troy.
Alec may carry some hefty battle scars, but he has learned to be proud of them. Every day his family remind him that if he can get through that, he can do absolutely anything, and we are sure he will!