Children's Cancer Institute

If there's ever a moment to celebrate, celebrate it, because you never know what's around the corner.

- Mel, Tom's Mum

Tom’s family knew about childhood cancer, with a relative having been through it. But that didn’t make it any less of a shock when Tom was diagnosed at 7 years of age.

Pre-diagnosis

It was 2022. Tom was in his first year at school, his little brother Noah had started preschool, and life was good.

Having recently come out of COVID-19 lockdown, Tom was enjoying being back at school, seeing his friends and playing soccer.

‘It was just day-to-day living which, in hindsight, was lovely,’ says Tom’s mum, Mel. ‘We took it for granted at the time.’

Symptoms

The first sign that something might be wrong came when Mel was doing a photo shoot as part of her work and decided to include Tom and Noah as models. Ironically, it was for a cancer awareness campaign.

‘Tom had some photos taken wearing a beanie and, oddly enough, he looked like a cancer patient,’ says Mel. ‘He had this colour under his eyes that, no matter what I did in editing, I couldn't get rid of.’

Oddly enough, he looked like a cancer patient.

- Mel, Tom's Mum

A blood test was done to check Tom’s iron levels, but the results came back normal. Then, about six months later, he started getting leg pain at night. Another trip to the doctor followed, and another blood test came back normal.

Tom was very slow to recover from COVID-19 and his leg pain was worsening. Then on a family holiday, he felt unwell in the car. Blood tests were done again, and a third time the results came back normal.

A decision was made to take Tom to Sydney Children’s Hospital Emergency Department where a physical examination and ultrasound were done. Neither found anything unusual and he was sent home.

Five days later he was back again after Tom’s father, Dave, noticed that Tom had a lump.

At the hospital

At the hospital, a doctor who had seen Tom’s file from his earlier hospital visit examined him and delivered some shocking news.

‘She’d read Tom’s file from Monday,’ says Mel. ‘She immediately said “I think we might be looking at some form of sarcoma.”’

While the news was devastating, Mel says she knew something was seriously wrong and, while waiting in Emergency, had considered the possibility that it could be cancer.

‘Having had that previous experience with cancer with Tom’s cousin, I guess your thoughts go in that direction quicker than someone else’s would.’

She immediately said, ‘I think that’s a sarcoma.’

- Mel, Tom's Mum

In just five days, Tom’s tumour — which went undetected on his earlier hospital visit — had grown to the size of a lemon.

‘It was getting bigger very quickly and the pains at night were becoming horrendous,’ says Mel.

In what seemed like particularly cruel timing, it was now only two days before Christmas, a very important event for Tom and Noah.

‘Tom is a really sentimental kid, very family orientated, so taking Christmas away from him was huge,’ Mel shares. ‘The boys’ devastation just made the whole thing worse.’

Diagnosis

Mel describes the first week in hospital as ‘a massive blur.’

‘On the 23rd of December, we heard the word sarcoma. On the 24th we were moved onto the ward at Sydney Children's Hospital. On the 25th they confirmed it was cancer. On the 26th the preliminary biopsy came back, and on the 27th they had named it.’

Tom’s diagnosis was metastatic embryonal rhabdomyosarcoma, a cancer of soft tissue. Because of the size and rapid growth of the tumour, and the fact that it was found to have metastasised to Tom’s lungs, his prognosis was poor.

‘Tom’s [survival] rates were pretty bleak,’ Mel shares.

Treatment begins

As fate would have it, Tom’s treating oncologist, Dr Glenn Marshall was on the same team that had successfully treated Tom’s cousin several years earlier. Mel says this helped ease the fear of the unknown and gave them some reassurance.

‘I was really scared. ‘Tom’s cancer was rare, it was in a rare location that made it inoperable, and it was an old [treatment] protocol he was on. Really, it came down to trusting the professionals.’

With Tom’s cancer classified as high-risk, he began high dose chemotherapy straight away. Within a week of treatment his tumour had shrunk, and his prognosis had improved.

Unfortunately, he experienced severe nausea — a side effect of chemotherapy combined with an allergic reaction to the saline solution used to clean IV (intravenous) lines. Later, it was discovered he also had a rare reaction to cyclophosphamide, one of the chemotherapy drugs, which led to progressively decreasing oxygen saturation levels during treatment.

There’s a lot of things that still trigger him.

- Mel, Tom's Mum

‘Tom’s nausea was a huge hurdle for us" shares Mel. ‘He’d vomit in the hospital car park. He’d vomit at the hospital doors. He’d even vomit if a nurse or doctor walked in to see someone else in the room, or at the sound of the chemo cart rolling down the hall.’ While the Starlight program at the hospital provided much-needed distraction, helping Tom get through treatment, the nausea—whether from chemo, anxiety, or both—was relentless and continues to be an ongoing issue.

‘There are still many things that trigger him,’ Mel says. ‘Certain smells, certain tastes. We always travel with a vomit bag ...it’s never far away.’

‘It was a very traumatic time. His life was upended so quickly and at such an important time of the year, and it escalated so quickly, particularly the pain. I guess this is what resulted.’

More treatment

As well as 35 rounds of chemotherapy, Mel and Dave were advised that Tom also needed radiation therapy.

'Tom was so much happier with radiation than with chemo,’ says Mel. ‘On the other hand, for us it was the most exhausting part. Signing that form for radiation was difficult because the effects of radiation are long-term. I found that a huge emotional challenge.’

A low point in Tom’s treatment came when he developed sepsis - a result of E.coli entering his bloodstream - and he was put in an isolation room in the intensive care unit.

‘That was terribly traumatic for Tom,’ says Mel. ‘He hated it. That was a time where I felt like everything was spinning out of control.’

In April 2024, treatment was finally over. Tom’s extended family gathered for ‘bell ringing day’ — when a patient in the cancer ward rings a special bell to mark the end of treatment.

‘It was a big moment for the entire family,’ Mel shares.

Signing that form for radiation was hugely difficult.

- Mel, Tom's Mum

A new normal

Now almost a year since his treatment ended, Tom continues to go to hospital for regular monitoring, with three monthly PET, CT and MRI scans, as well as chest x-rays scheduled in between.

‘I feel like I get about two weeks of breathing space after a good scan, and then the anxiety starts to build again,’ Mel says.

On Tom’s PET scans, his tumour looks to be stable but shows ‘minimal activity’ — an effect the doctors believe is inflammation caused by radiation, which could be there for years.

‘I don’t know that there'll ever be a time when I won’t be concerned about it,’ shares Mel.

Meanwhile Tom, who has gone up four shoe sizes since finishing treatment, is thoroughly enjoying being back at school and seeing his friends.

‘That’s where his happiness lies, just in normal everyday life,’ says Mel. ‘It’s been an absolute joy to see.’

Recently, Tom has had to deal with the death of two close friends he made on the cancer ward — tough life lessons for a nine-year-old, but Mel says he has ‘his own beautiful way of dealing with it.’

‘Tom had a lot of questions about death when he was first diagnosed. We talked about it quite a bit and I think that’s helped set us up for open and honest conversations about it since.’