Children's Cancer Institute

Beau said: there’s always some light somewhere, we’ve got to find it.

-Belinda, Beau's Mum

When 12-year-old Beau, a very active and sporty boy, suddenly couldn't keep up anymore, it was clear something was wrong. But the devastation that followed was beyond what his family could have imagined.

Pre-diagnosis

Like his parents, Belinda and Scott, Beau was always on the go.

Both Scott and Belinda were always busy and loved to stay fit in their spare time. "With two beautiful boys, we thought one of them might enjoy sport as much as we both did," they recalled. Beau was that child—he thrived in any sport or outdoor activity, finding joy in anything active.

While Beau’s older brother, Tye, preferred gaming and science, Beau was mad-keen on football especially rugby league and going fishing.

‘Beau very much looked like me’ Belinda says. ‘People would tell me: He’s exactly the same as you; he looks like you, but he also had an amazing competitive spirit to always do his best in anything like both Scott and me. He was always busy. If he sat down on the lounge for five minutes, it would be a miracle.’

Symptoms

Two weeks before Beau was diagnosed, his parents started noticing big changes. When Belinda took Beau shopping for his 12th birthday on 26th of March 2024, she says he was unusually fatigued.

‘He couldn’t go 10 metres without stopping. I asked him what was wrong, and he said, “I’m just really tired, mummy, I cannot walk very well.” That is when we both knew something was very wrong.

Belinda picked up Tye who was at home and went straight to Emergency, where she met Scott and Beau who had been transferred from the Northern Beaches’ Hospital to Randwick Children’s Hospital by ambulance. There we learnt from a scan Beau had a 16 cm x 9 cm tumour growing in his chest, and that only one quarter of one lung was working.

He could not walk 10 metres without stopping.

- Belinda, Beau's Mum

Beau had also lost a lot of weight, despite eating plenty of food. On Good Friday, Belinda decided to take him to the medical centre, where the doctor suggested he had anxiety.

Beau then went to the family’s regular doctor who did some blood tests, but the results came back normal. When Scott took him back again a week later, Beau started vomiting at the surgery. Scott was advised to take him to the closest hospital.

At the hospital

Belinda was driving on the freeway on her way home from work when she received a phone call she will never forget.

'Scott rang me and said, “He has cancer.” I was going 110 km, trying to breathe, thinking it was a bad dream, trying to get as fast as I could to the hospital.’

We were all in total disbelief.

- Belinda, Beau's Mum

‘It was extremely shocking. You’re in total disbelief, because you do not believe it’s even possible,’ Belinda shares. ‘How does a super healthy 12-year-old go all of a sudden to having this giant tumour on his chest?’

‘The fact that he was so active and played football just two weeks prior … I do not know how. I honestly do not know how he was walking.’

Scott remained at the hospital with Beau while Belinda and Tye returned home as Beau remained in emergency that night.

‘I came back the next day, and that was it, our life had changed. Straight up to C2West, the oncology area, and that is where we stayed trying to comprehend what was happening.’

Diagnosis

Belinda says they entered a crash course on the world of oncology and were quickly overwhelmed with information.

The pathology of Beau’s cancer proved complex, making diagnosis difficult. The best fit was decided to be a rare T-cell lymphoma — a type of non-Hodgkin’s lymphoma.

Beau was enrolled on the Zero Childhood Cancer Program (ZERO), involving full genomic analysis of his tumour. When the results came back, his doctors were surprised to learn that his tumour had a molecular feature (known as SMARCB1) not usually seen in lymphomas.

This led to further testing which resulted in Beau’s cancer being reclassified as myoepithelial carcinoma, a rare malignant tumour which usually begins in the salivary glands.

Treatment

Two or three days into his hospital stay, Beau had surgery to drain the liquid from his lungs and have a biopsy taken. He then began treatment with steroids and chemotherapy.

Belinda says the side effects were terrible, especially painful mouth ulcers which left Beau feeling miserable. However, the chemotherapy appeared to be working.

‘In September, he had surgery to remove what was left of the tumour. The surgeons came out and said there were just two little, tiny points on the phrenic nerve, but everything else was clear.’

We had to tell Beau, we are sorry, we are going to need more treatment

- Belinda, Beau's Mum

Beau began 31 days of radiation therapy. So confident were the doctors that therapy would be successful, Beau’s central line was removed and plans were made for him to ring the ‘end of treatment bell’ and go home for Christmas. However, a scan on 15 December showed that the cancer had spread.

‘It was everywhere again,’ Belinda says. ‘We had to tell Beau, we are sorry, we are going to need more treatment. That was incredibly hard. He was very, very angry’. It was heartbreaking for us all, but Beau was determined to fight.

More treatment

Belinda says after being told they still had treatment options, the family tried to have the best Christmas they could.

‘There was an element of sadness knowing that this could be our last Christmas together.’ Beau even said to me “mummy this could be my last Christmas”. As a mother, to hear those words and not cry in front of him, was one of the most difficult times I have ever experienced. Both Scott and I were determined to have a great Christmas and try to remain positive.’

Soon after, Beau’s condition began to deteriorate. When he developed a temperature, Belinda took him back to the hospital, where a scan showed that he again had liquid in his lungs.

‘That was another three weeks in hospital where, honestly, we thought he was not going to live,’ she shares.

That was when things dramatically changed.

- Belinda, Beau's Mum

A decision was taken to put Beau on a trial treatment from the US (Tiragolumab) but while waiting for the drug to arrive, Belinda and Scott grew increasingly anxious.

‘Beau was getting worse. He started to have lumps and bumps appearing, and serious pain in his spine. He fractured his leg because there were tumours on his bones and he had to go in a wheelchair for six weeks because he could not walk. That was when things dramatically changed.’

In mid-January, the family was presented with two options: take Beau home and focus on quality of life, or give him highly toxic chemotherapy with an estimated 2% chance of success. They chose quality of life. He had experienced so much already.

‘Beau told me, “Mummy, I want to get out of here. I just want to go fishing. And I want to go to the football.” That was his call and wish. He did not want to be in hospital anymore.’

The final chapter

It was at this stage that the palliative care team became involved. Belinda says she believes Beau knew he did not have long to go.

‘Deep down, he knew. We did not need to tell him that he was dying. He said to me, “Mummy, I hope to get to my birthday.” He knew what was going on.’

‘We had these conversations about what he was going to send me. When you are sad, I am going to send you birds, I am going to send you sunsets, I am going to send you rainbows.’

‘He left me a draft email that I found four days after he passed away. He left his brother a birthday present wrapped up. He was so thoughtful and caring.’

On 18 March 2025, eight days before his 13th birthday, Beau passed away.

Reflections

Belinda says that, despite going through a horrific 12 months and experiencing the full depth of grief, there are also positives to be found.

‘There is no way to talk about grief easily. But there is some positivity to come out of it. That is the only way we can get through it. As Beau said “there is always some light somewhere, we just must find it.” This was something Beauy taught me.’

How are any of the other areas important, if there is no treatment?

- Belinda, Beau's Mum

‘Beau wanted to help kids. He wanted to be that inspiration in people's lives. So that is what we do, as hard as that is. Scott and I are very passionate about being able to make some kind of difference as this was Beau’s wish. Recently I discovered on one of Beauy’s social pages he had set up a cure for cancer funding page. As you can imagine I was in tears having no prior knowledge of this. It showed just how passionate and caring he was about helping others fight cancer.’

Belinda and Scott are both strong advocates for childhood cancer awareness and funding, particularly when it comes to research.

‘Research is so important, because there are so many unknowns,’ she explains. ‘There is a lot of other areas that need funding also, but if you do not know what you are dealing with or how to fix what you are dealing with … how are any of the other areas important if there is no treatment?’