Children's Cancer Institute

No one should have to go through this.

- Samantha, Allegra's Mum

Allegra was still learning to walk and talk when she was diagnosed with Wilms tumour. At 14 months of age, treatment took a huge toll on her little body — not to mention her parents.

Pre-diagnosis

Allegra’s mum, Samantha, describes life pre-diagnosis as ‘pretty straightforward’, though it was certainly not without its challenges. Allegra had been born on Day 3 of the first big COVID lockdown in Sydney, and Samantha and her partner, Brandon, were trying to navigate life as first-time parents.

‘Ally was our little rainbow baby,’ says Samantha. ‘We had a fair few losses before her, so I think finally becoming parents, we were in a bit of a bubble.’

With Allegra starting to walk and talk more, Samantha decided to take more leave from work. ‘I wanted to spend more time with her,’ she explains. ‘Two weeks later, she was diagnosed.’

Symptoms

Having recently had some early childhood vaccinations, Allegra had experienced a few fevers and other minor side effects, which Samantha says was to be expected.

But when Allegra’s fevers persisted, followed by lethargy, bad rashes, and an uncharacteristic lack of interest in her milk bottle at night, Samantha knew something was not right.

With their GP unavailable for an appointment, Samantha decided to take Allegra to the local hospital. Here, a doctor gave Allegra fluids with Panadol and Nurofen, but declined to do any tests.

Samantha, a registered nurse, insisted that Allegra be seen by the paediatric team, saying she wouldn’t leave without at least a blood test having been done.

‘I knew something was wrong, I just didn’t know what,’ she says.

Mum guilt gets you. You think, why didn't I notice? Why didn't I do anything sooner?

- Samantha, Allegra's Mum

At the hospital

Allegra had a blood test done and was admitted for observation. The next morning, the paediatrician shared the test results with Samantha, who says her mind immediately went to ‘worst-case scenario’.

Repeated blood tests showed similar abnormal results, but the doctors weren’t sure what the cause was. Eventually an ultrasound was done which confirmed that a solid mass was growing on Allegra’s kidney.

When the doctors told Samantha they were liaising with Oncology at Westmead Children’s Hospital, she says she didn’t know what to think or feel.

‘When you hear the word oncology, when it is not what you expected, it’s like everything just goes into a haze,’ she shares.

Diagnosis

At the Children’s Hospital, Allegra was taken for full body scans, then went to recovery. A few hours later, the oncologist, accompanied by a large number of other staff, walked into the room.

‘He said, “It was what we expected. It’s cancer,”’ says Samantha.

‘He told us they’d have to do surgery to remove the tumour. He said Ally would need chemotherapy, but that they wouldn’t know further about what she’d be on until they did the biopsy.’

She had to have an epidural for three days to manage the pain.

- Samantha, Allegra's Mum

Allegra’s surgery went on for many hours, and it wasn’t until late that night that her parents were able to see her. It was at this point they found out the cancer was bigger than expected and had spread to the lymph nodes.

‘Ally had to have an epidural for three days to manage the pain,’ Samantha recalls. ‘She was so unsettled and she just looked so miserable. Having a baby on Panadol and Nurofen and epidurals and morphine… it’s not something you expect to have to deal with.’

Treatment

With a diagnosis of Stage 3 Wilms tumour confirmed, Allegra had a central line put in and began chemotherapy. Two weeks later, she began radiation therapy at the adult hospital, for which she needed sedation.

‘It was hard, having to watch her get sedated and to put your trust in someone else that she'd be okay,’ Samantha shares.

Having already lost weight after surgery, Allegra then had to deal with the side effects of chemotherapy, particularly nausea and vomiting.

With Allegra unable to keep anything down, not even anti-nausea mediations, a nasogastric tube had to be fitted — a traumatic experience.

‘She screamed, she cried, her hair was going everywhere, all over the room,’ says Samantha. ‘As soon as they got the tube in, I had to get her and walk out, because she was so inconsolable. Any time we attempted to walk back towards the treatment centre, she would just scream. It was terrible.’

Anytime we attempted to walk back towards treatment centre, she would just scream.

- Samantha, Allegra's Mum

Today

Following eight months’ therapy, and now just over a year off treatment, Allegra is today a happy and energetic toddler. She recently started swimming lessons, and is dancing at school as well as on Saturdays.

‘She started day care this year, she’s making friends, and she’s becoming her own little person,’ says Samantha. ‘Her hair is growing back so now we can braid it, and she’s excited about putting all different things in there.’

‘Getting to see her be a normal kid …it’s something I wasn’t sure was going to happen, and it’s such a big thing.’

Reflections

Looking back on her experiences, Samantha is philosophical. ‘As a mum, you just do what you have to do. But it’s taken a big mental toll. Cancer sucks, you’d never wish it on anyone.’

Ironically, she says some of the hardest times are after treatment finishes, when the responsibility of full-time care weighs heavily on parents.

‘People expect you to be happy. They say “Oh, so she’s off chemo, that’s good. The cancer’s gone.” But from my perspective, it’s terrifying. Because in reality, all it takes is one cell. You're living on edge 24/7.’

Slow down and enjoy what you’ve got, because it can change so quickly.

- Samantha, Allegra's Mum

When asked if her perspective on life has changed, Samantha says she focuses much more on the now, and tries to cherish every moment with her daughter.

‘I think the main thing is to try and slow down and enjoy what you’ve got, because it can change so quickly.’

Her message for people who support research into childhood cancer is simple: Thank you for everything you do.

‘At the end of the day, we need to find better treatments and cures for our children. No one, no children, no families, should have to go through this.’