Children's Cancer Institute

When your child is sick, it's the research that gives you that little bit of hope to hold onto

- Sean, Scout's Dad

Pre-diagnosis

Scout was born into a family of four. Her parents, Edwina and Sean, had two boys — Fionn, who had just started school, and Atticus, who was attending daycare — when they decided they’d like to have another baby.

Not shy of a challenge, they embarked on a house renovation while Edwina was pregnant and they were both working.

‘We’re adventurous types of people,’ says Edwina. ‘We don’t sit still for long.’

‘Sean's mum was away for three months so we moved into her place. We were in one-bedroom apartment with two kids, a dog, and me pregnant.’

‘Then Scout arrived, and that’s when everything changed.’

Symptoms

Edwina says that everything about her pregnancy was normal, with ‘absolutely nothing to say what was to come.’ Then some worrying signs began to appear.

‘I was holding her and I noticed there were movements I hadn’t seen before. It wasn’t newborn jitters; it was like she was having a seizure.’

Scout was moved into the newborn intensive care unit where an x-ray was done, and Edwina and Sean were informed that there had been a bleed in her brain, indicating she’d had a stroke.

In the intensive care unit, despite mention of a possible tumour, Edwina and Sean were assured there was no evidence that was the case.

‘They did some scans just before we left, and the neurologist said, “I don’t know where the word tumour has come from, but there’s definitely no tumour; I can guarantee it.” Then they sent us home.’

The neurologist said, ‘There’s definitely no tumour; I can guarantee it.

- Edwina, Scout's Mum

At Hospital

One day about a week later, Sean came home from work and asked Edwina what was going on with Scout’s head. ‘It just looked different,’ he says. ‘It looked quite swollen.’

Edwina decided to take Scout back to the hospital, where a CT scan was done straight away. She was told there was a lot of fluid on the brain, and that Scout needed to be sent by ambulance to Sydney Children’s Hospital in Randwick.

‘I was really scared then,’ shares Edwina. ‘I’m a positive person, so always think bad things won’t happen. But I started to think …this is not going how I thought it would.’

Scout was moved from Emergency onto the ward, where it wasn’t until the next morning that doctors arrived to take her for an MRI.

In a scene Sean describes as ‘quite hectic’, he said a neurosurgeon came in and told staff, ‘Get this child down for an MRI now. We can’t have a child sitting here with a tumour while my theater is available’.

‘We were like, “What? What was that?”’

After the MRI confirmed that Scout did indeed have a tumour, Edwina and Sean were advised that surgery was needed to relieve pressure on Scout’s brain, and that it would be best to have as much as possible of the tumour removed at the same time.

I was really scared.

- Edwina, Scout's Mum

Diagnosis

Following an 8-hour operation, Edwina and Sean were told everything had gone well, and the surgeon had removed as much tumour as he could see.

Scout was enrolled on the Zero Childhood Cancer Program (ZERO) and a sample of her tumour was sent off for genomic analysis, with the results expected back in a few weeks’ time.

Meanwhile, pathology tests at the hospital revealed that Scout had a type of brain cancer known as a high-grade glioma, for which the standard treatment is chemotherapy.

‘When the results came in, we were to have a full briefing on the Monday,’ says Sean. ‘But one of the surgeons popped in to see us on the Saturday. He said, “I’ve seen the results, it's not good. It’s a high-grade glioma. I just want you to be prepared.”’

Treatment

As soon as Scout — still just a newborn baby — had recovered from surgery, she began chemotherapy. Edwina says it seemed like a never ending cycle of Scout receiving chemotherapy and going home, only to get sick and return to hospital.

‘I’d say we spent six months in hospital. We had maybe two nights at home here and there, but the rest the time we were there.’

During this time breastfeeding proved invaluable, not only helping mother and baby bond, but also giving Edwina a sense of control and allowing her to settle Scout when needed.

Sean says this was a particularly hard time for Edwina who was ‘doing most of the heavy lifting at the hospital’, and also for the boys, who were missing their mum.

I've got nothing to say. I don't have a smile for you. I've got nothing

- Edwina, Scout's Mum

‘The kids would be excited about having her home, then they'd wake up in the morning and she’d be back in the hospital with Scout again.’

Usually quite a social person, Edwina found she had nothing to give anyone other than her children.

‘I was like, I've got nothing. I've got no energy; I've got nothing to say. I don't even have a smile for you. I’m sorry, but my focus is my children and the hospital.’

Targeted Therapy

When the results from ZERO came through, it was confirmed that Scout’s cancer was a high-grade glioma with a gene mutation known as an ALK fusion. This meant that a targeted therapy called an ALK inhibitor could potentially be used to treat it.

When the ZERO team tested Scout’s tumour in the lab, they found it was extremely sensitive to an ALK inhibitor called alectinib. Scout now had an exciting new treatment option.

This proved a godsend when, seven months into chemotherapy, scans revealed that standard treatment had failed to stop Scout’s tumour from growing.

Scout began receiving the new drug in November 2023. In January 2024, scans showed her tumour had shrunk by 30%. Then a second scan in March revealed it was stable.

It was like a switch. From stopping chemo to starting the trial, she was a completely different child.

- Sean, Scout's Dad

Just two weeks into the new treatment, Scout’s demeanor changed noticeably.

‘It was like a switch,’ Sean says. ‘From stopping chemo to starting the trial, it was like she was a completely different child. She was more active, more vocal, everything changed. And that was because of this treatment.’

‘When your child is sick, you lose all hope. And it’s this research, ZERO, that gives you that little bit of hope to hold onto. When you’ve got none, that little bit means a lot.’

Today

Today, Scout is still receiving alectinib, and the treatment continues to hold her cancer at bay. Every two months she has a scan to check how things are progressing.

Edwina says Scout is doing really well. ‘She’s saying “mummy” and “daddy”, and loves her brothers who make her laugh so much. And now that her central line is out, she’s having baths, and swimming lessons, and she loves the beach.’

‘For the first time, it feels like she’s a normal little baby,’ Sean agrees.

For the first time, it feels like she’s a normal little baby.

- Sean, Scout's Dad

While Edwina and Sean are thrilled with Scout’s progress, they are aware there will be long-term health consequences to face. After Scout’s stroke, they were put in touch with the Cerebral Palsy Alliance and Scout was placed on an early intervention program.

‘Already now, Scout’s right-hand side doesn’t do what her left-hand side does,’ says Sean. ‘And she’ll probably always have a bit of a limp, or a brace at some stage.’

‘But we are also so lucky,’ Edwina adds. ‘We really know that.’