It was around Christmas two years ago that Madison noticed her four-month-old baby boy, August (affectionately known as Augie), had a swollen eye that was visibly bulging.
“It would just kind of come and go, and it wasn’t causing him any discomfort. It wasn’t particularly red. I just assumed he had a blocked tear duct, because that can happen quite frequently with newborns,” Madison remembered.
Madison took him to the general practitioner (GP). When the GP saw Augie’s eye, she gasped.
“Go now, go to the (Royal) Children’s Hospital immediately. Don’t go home. Go straight there,” Madison recalled the GP saying.
Augie and his mum
She took Augie straight to the Emergency Department at the RCH, marking the start of Augie’s terrifying journey with cancer – before he had even taken his first steps.
From there, things moved fast. The doctors ordered an urgent computed tomography (CT) scan. The scan found a mass behind Augie’s eye – a tumour was pushing his eye forward.
It was devastating news that no parent ever wants to hear, let alone is prepared for.
A sample of Augie’s tumour was then sent to a lab for testing. The surgeon soon rang them with the results, sharing that the tumour was malignant. It was cancer.
“At that point, we had no idea what type. We didn’t know if it had spread elsewhere. We didn’t know anything,” Madison shared.
Professor Michael Sullivan, a paediatric oncologist and neuro-oncologist at the RCH’s Children Cancer Centre, knew what he was looking at.
“Augie had a kind of tumour that we see frequently in children his age, called Rhabdomyosarcoma. This cancer of soft tissue can develop at any age throughout childhood,” Professor Sullivan explained.
Augie with a swollen eye
“It was growing so rapidly at this point, it was terrifying. His pupil was sort of halfway down his lid. You could hardly see the black part of his eye,” Madison explained.
“His eye was just falling out of his face,” she added.
The next two weeks were a whirlwind of tests for little Augie.
He had scans to identify how far the disease had spread and then tests such as hearing and heart tests to see if he was well enough to have the treatment the cancer needed if he was to have any chance of surviving.
“To achieve a cure, you need to have a combination of treatments. Chemotherapy is one. Many children require surgery, depending on the location of the tumour, and many children need radiation,” Professor Sullivan said.
“Very few of these tumours can be removed just by an operation,” he further explained.
Augie’s parents were faced with the fact that their precious baby had a rapidly growing tumour, that could make him blind and could spread into his brain or spine. But Augie needed treatment and he needed it urgently.
“We looked very carefully at what was the best type of radiation to give an infant that is so young, because we knew that we couldn’t effectively guarantee a cure without using radiotherapy,” he explained.
Augie and his dad at the RCH
“The really important consideration was, how we could give chemotherapy and radiation to a baby?”
In addition to the chemotherapy that Augie was having at the RCH, Professor Sullivan recommended Proton Beam Therapy (PBT) as the radiation treatment that was needed.
PBT is a type of radiation that is very effective at treating cancers in sensitive areas or near vital organs, including the head, where the cancer can spread into the brain and the spinal cord.
This therapy can be targeted much more precisely than standard radiation, which means there is less damage to nearby tissues or organs.
Unfortunately, there was nowhere in Australia that could provide this life-saving treatment to Augie.
But Madison and Matt were determined to do whatever was needed to save their little boy, so they began to make plans – packing up their lives to go to America for three months for PBT treatment.
Augie at the RCH
Then everything changed.
The family had started to notice signs that things weren’t progressing as they had hoped. Madison began noticing that Augie’s eye, which had dramatically improved with chemotherapy, was suddenly getting worse again.
Further analysis of Augie’s tumour found that he had a gene mutation that had never been seen in the type of tumour he had.
The family again turned to the expert hands and compassionate care of Professor Sullivan.
“I got calls from colleagues, and we had a rapid teleconference and consulted with the team,” Professor Sullivan remembers.
“At that point, we realised we needed to change his chemotherapy. And we couldn’t wait for Augie to go to America,” he explained.
The decision was made – they needed to start radiation as soon as possible.
“Michael rang us, and he just said, ‘Look, I’m really sorry, but chemo isn’t going to be enough for this, so we’re going to have to radiate here,” Madison remembers.
The radiation Augie received here in Melbourne was effective – it saved his life. But it also came with challenges and risks that no child or family should ever have to endure. The full impact of Augie’s treatment is not yet known. What is known is that it has affected his fertility, his eye, and possibly his brain.
Augie and his family
But this year, Madison and Matt are celebrating the festive season with all their children, deeply grateful that Augie is still with them and still showing no signs of his cancer returning.
Having access to advanced treatments right here in Australia could have made a world of difference for Augie and his family. This Christmas, your generous donation can help give children in Australia like Augie access to advanced, life-saving treatments.