Children's Cancer Institute

If there had been a treatment that could have stopped the spread of her cancer, Zoe might be here with us today

- Edwina, Zoe's Mum

Zoe was still in her mother’s womb when doctors found what they believed to be a benign tumour growing near her tailbone. But things went from bad to worse soon after she was born. Throughout the emotional rollercoaster that followed, Zoe inspired her parents with her strength, calm, and resilience.

Pre-diagnosis

When Edwina and Steve found out that Zoe was coming along, they were excited to be becoming parents for the first time. After being together for more than 10 years, they had recently married and moved to Canberra, where they bought their first family home.

‘The year that Zoe was born was a really big one for us. It was house, wedding and baby all in one year,’ says Steve.

The pregnancy had been going well, and all the ultrasounds and tests had been coming back normal. But at 28 weeks, everything changed.

Diagnosis

‘I noticed that Zoe wasn't moving as much as she had been,’ Edwina says. ‘It took about three visits before someone eventually scanned me, because everyone was like, "Oh, it'll be fine, don't worry about it." By the time I got scanned, Zoe had a 10 centimetre tumour.’

The doctors decided Zoe likely had what is known as a sacrococcygeal teratoma, a tumour that grows near the tailbone and is often benign (not cancerous). While the news wasn’t as bad as it perhaps could have been, it came as a huge shock to her unsuspecting parents.

We were reassured that surgery could remove the tumour.

- Edwina, Zoe's Mum

‘When they do the scan, they don't want to say much, so there was a wait period at home. Those couple of days when we didn't know what the diagnosis was, it was incredibly stressful,’ shares Edwina.

After being assured that Zoe’s tumour could be removed by surgery and that she’d be home after a few weeks of recovery in the hospital, Edwina and Steve relocated to Sydney so they could be close to the specialist surgical team at the Royal Women's Hospital.

Zoe's Birth

Regular scans showed that the tumour was growing by about 1 cm each week. The doctors continued to believe it was a teratoma that was growing outwards from the tailbone, which could be removed relatively easily.

‘That message was pretty consistent,’ recalls Steve. ‘It's external, it's external’. So, I was getting more and more relaxed. ‘Then about a week before Zoe’s birth, they were looking at it, going, "This doesn't quite seem like a teratoma anymore. Maybe it's something else."’

This doesn't quite seem like a teratoma anymore. Maybe it's something else.

- Edwina, Zoe's Mum

Everyone was in for a shock when, just under 37 weeks into her pregnancy, Edwina’s waters broke and she was rushed in for an emergency C-section. When Zoe was delivered, it was immediately obvious that the tumour was on her leg and not her tailbone.

In fact, the tumour encompassed her entire right thigh and accounted for a massive 40% of her body weight. She was rushed to Intensive Care, receiving blood transfusions through the night in an attempt to keep her stable.

In the early hours of the morning, surgeons came to see Edwina and Steve and told them Zoe needed an amputation, or she wouldn’t make it through the day. That afternoon, the surgical team removed Zoe’s right leg from the hip. Zoe now weighed just 1.8 kg.

A New Diagnosis

Zoe was recovering well from the surgery, and Edwina and Steve hoped the worst was behind them. ‘We were like, OK, she's lost a leg, we can deal with that. We just have to get through this, then we'll get her home and it'll be fine,’ says Edwina.

Initially, it seemed like this might be the case. But a few days later, Edwina was changing Zoe’s clothes when she noticed a few small bumps on her back. Her heart sank as she realised this could be a sign that Zoe’s tumour had metastasised.

After an agonising wait, the results of Zoe’s testing came back: she had stage IV alveolar rhabdomyosarcoma.

Edwina and Steve had faced an emergency C-section, their newborn’s leg amputation, what seemed like a good recovery, then a diagnosis of cancer, followed by the discovery it had spread … all in the space of less than a week.

Treatment

With her cancer now well advanced, it was clear that Zoe needed to start chemotherapy straight away. But at less than two weeks of age and having just undergone a full leg amputation, the doctors would need to tread very carefully.

After consulting with experts in the UK and US, they put Zoe on a combination of drugs and waited for the results.

‘She was taking it so well, like such a champ,’ says Steve. ‘I had a Google spreadsheet where I was tracking how she was growing. Everything was going fantastic, the lumps on her skin had all but gone and we’d kind of grown a bit optimistic.’

They said: We’re really sorry. There's no hope.

- Edwina, Zoe's Mum

Just before Christmas, Steve and Edwina were told they could take Zoe home for a break after completing her first round of chemo. But first, they needed to do a few scans to check on her progress. Steve remembers casually asking the doctor about the results.

‘He asked, “Is Edwina coming in?”. I was like, Yeah, she's coming in an hour. And he said, "Okay, good, I'll speak to you then." That was it. And that's when my gut kind of dropped.’

On her way to the hospital, Edwina had no inkling that a bombshell was about to drop.

‘We sat in a room and a whole lot of people came in. I was holding Zoe in my lap. Then they showed the MRI scan to us, and they said, "We’re really sorry. There's no hope.”

The cancer had spread throughout Zoe’s brain and was now considered untreatable.

‘It was soul destroying. There’d been so many ups and downs. And just when we thought things were going well, to hear that news… We were both in tears.’

Palliative care

Edwina and Steve chose to move into Bear Cottage, a palliative care hospital for children.

‘It was the best thing we could have done,’ says Edwina. ‘It was a beautiful place to stay. They looked after us so well, and they gave us the chance to spend whatever time we could with Zoe.’

‘We cuddled her constantly. She'd sleep on my chest through the night. We went walking to the beach every day with her in a carrier. We made some lovely canvas footprints, with my footprints, Steve's, Zoe's one foot, and then we've got our new son, Theo's footprints around it.’

I knew she wasn't going to make it, but I couldn't stop myself from trying.

- Steve, Zoe's Dad

Over the course of two weeks, Zoe began to lose strength and to sleep for longer periods. Edwina and Steve had no idea how much time they had left to spend with her, which was really difficult. Then one night she experienced a cluster of seizures, and continued to get progressively worse. Steve and Edwina held her for the next 16 hours trying to keep her as comfortable as possible..

‘That was really, really challenging for me,’ shares Steve. ‘I knew that she was leaving us, and I knew that she wasn't going to make it, but I couldn't stop myself from trying to save her.’

Eleven weeks after she came into this world, almost to the hour, little Zoe passed away.

These kids shouldn't have no options. It's just not fair.

- Edwina, Zoe's Mum

Reflections

Edwina and Steve say their experience with Zoe made them painfully aware of the limitations of treatment for children with cancer, and the importance of research.

‘I just can't believe that there are so many cancers out there that are too hard to treat,’ says Edwina. ‘Zoe was treated with generic chemo from the 1950s, and it was like, well, we'll give that a go and hope for the best.’

‘These kids shouldn't have no options. It's just not fair. Zoe could still be here if we had options.’

Supporting research into high-risk childhood cancers such as sarcoma has become a priority.

‘I think contributing to fundraisers and research organisations like Children’s Cancer Institute is a way of continuing on some legacy for Zoe,’ says Steve. ‘It's as close as we can get to her being alive, seeing her create an impact in the world.’

‘Cancer at any age is terrible, but cancer in your child is truly awful. Any parent would trade in a second.’

Edwina and Steve continue to help find a cure for childhood cancer by fundraising throughout the year.
If you'd like to join them in making a difference, click the link and donate today - https://www.ccia.org.au/fundraisers/edwinaleslie