Children's Cancer Institute

I really didn't think she would survive

- Bec, Bella's Mum

Bella has faced her long, gruelling and ongoing treatment for brain cancer with extraordinary bravery. Her resilience has been a true inspiration to those around her.

Pre-diagnosis

Bella was five years old and excited to be starting school. Little brother Oliver was three years old and attending Kindergarten, and baby brother Theodore had only just been born.

Bella’s mum, Bec, had been working seven days a week running her own business, while dad, James, worked full-time in commercial management . Life was very busy.

‘We’d slogged it out for the preceding few years and 2019 was going to be our year,’ says Bec.

Symptoms

Pre-diagnosis, Bec says there were only two signs that something could be wrong with Bella. One was a most uncharacteristic tantrum she had thrown on her birthday, when she complained her head hurt.

The other showed up a few months later when she had just started Prep, and Bec noticed that she turned her head when looking for something. This led to an optometrist appointment and a diagnosis of a turned eye.

After family members suggested they get a second opinion, James took Bella to see an eye specialist. When he got home, he delivered some shocking news.

‘I’ll never forget,’ shares Bec. ‘I was in the shower. James came in and I asked how the appointment had gone. He said, “They want to book her in for an MRI. It could be cancer.” Even with this information, Bec never thought it would be cancer.

Diagnosis

A few days after the MRI, James took Bella for a follow-up appointment while Bec took Theodore to the paediatrician. Bec, who had spent the past couple of weeks in hospital with her son after some newborn health issues, says she told the pediatrician: ‘If I never see a hospital again, it’ll be too soon.’

After Bella’s appointment, James rang Bec with devastating news. ‘Bella and I are heading straight to Queensland Children’s Hospital,’ he told her. ‘It's brain cancer. We'll meet you there.’

At the hospital, Bec and James spent the next few hours speaking to doctors in Oncology. Five-year-old Bella, still in her school uniform, sat in the room listening and absorbing it all.

Looking at Bella’s brain scan, Bec says there was one thing that stood out.

‘I’d never seen a brain scan image before, and I asked: What’s that big white thing? And he said, “That’s one of her tumours.” And my gut just dropped to the floor.’

My gut just dropped to the floor

- Bec, Bella's Mum

‘I thought, my God, this little girl who’s light and bright and clever and beautiful, who has no symptoms outside of her eyesight… essentially the tumours had crushed the optic nerves between her eyes and her brain.’

Bella was diagnosed with multiple optic gliomas and was almost legally blind. She had surgery to take a biopsy and remove the bulk of one of the tumours. Although she woke up very nauseous after the general anaesthetic, 12 hours later she was back to her old self, walking around saying hello to everyone on the ward.

‘That night, James and I made an agreement that we were going to normalise brain cancer,’ Bec shares. ‘We decided that the best way we can support our kids moving forward is to go, this is something that's happened in our life and in our journey. So we just went on with life.’

Treatment Begins

Bec and James agreed to have Bella enrolled in a randomised clinical trial comparing chemotherapy with a trial drug called Avastin. As it turned out, they were allocated to the chemotherapy group.

This is how Bec describes the routine that became their new normal:

‘On Thursdays, Bella would go in for chemo. We’d try and get a bit of a weekend, but she was quite unwell and by Sunday, almost every week, she’d be back in hospital. We’d get home for half a day Wednesday if we were lucky, then she’d have chemo on the Thursday and the cycle would start again. We did that non-stop the first two years.’

If I’m not fighting this journey with Bella, then there is no Bella

- Bec, Bella's Mum

In July 2020, Vincristine treatment ended. However, scans showed that Bella’s tumours had continued to grow. Bec says although the news was heartbreaking and she was exhausted, she was prepared to do whatever needed to be done to keep her daughter alive.

‘If I’m not on this rollercoaster and I'm not fighting this journey with Bella, then there is no Bella. So if I have to do this every day for the rest my life, I will.’

Immunotherapy

After a few months off, it was time to start a new treatment. Once more, Bella took part in a clinical trial, this time of a new immunotherapy drug called Firefly which had been used in adults with melanoma but never in children.

Expectations of treatment involved taking multiple tablets once a week at home and coming to the hospital once a month. Because the tablets were large and had to be swallowed whole, Bella, who had never had a tablet before, had to practice with gummies. Bec says the nurses were so impressed when Bella managed to swallow her first tablet, they applauded.

However, it soon became apparent that Bella’s body was not reacting well to the new medication.

‘We presented to Emergency 37 times in the next month. Bella couldn’t wear clothing because her skin was on fire, and she was covered in a rash from head to toe. She stopped eating and drinking. Her whole body ached and she couldn’t get out of bed most days.’

My little girl is broken; our family is broken. We need a break

- Bec, Bella's Mum

When Bella began vomiting blood, Bec called an ambulance. Her heart and kidneys went into failure on the way to hospital. They spent the next 10 days in intensive isolated care. Looking back at photos of that time Bec can barely recognise her own daughter.

After a month break Bella started Firefly again, this time at a lower dose. Over the next four months, the same side effects occurred — this time with the addition of permanent loss of colour in her vision. Things went from bad to worse when Bella started urinating blood.

When an MRI that showed Bella's tumours had grown again, the doctors suggested it was time to start standard chemotherapy again. But Bec had had enough.

‘I told them: My little girl is broken; our family is broken. We need a break. And I spent the last of what we had in our bank account to book flights to Hobart for a holiday. Because I really didn’t think she would survive. I thought we were done.’

Round 3

Although the family had what Bec says was an incredible holiday together, Bella had stopped being able to walk and became completely wheelchair bound.

Returning home a week later, Bella started on standard chemotherapy, Vinblastine. But only two cycles into a proposed 18 cycles of treatment, her body became severely contorted due to one of the tumours in her brain getting bigger. It was time for more surgery.

‘Bella knew what was coming and she stopped talking,’ says Bec. ‘My vivacious, outgoing, creative girl went completely mute. It was a very, very difficult time for the whole family.’

On Melbourne Cup Day 2022, Bella went in for her second brain surgery,a craniotomy. After a 6 hour delay and a 10-hour operation, Bec was called to the intensive care unit. Bella had woken up completely paralysed on her left side, from top to bottom. She suffered multiple strokes leaving her with a permanent acquired brain injury.

Bella said, “I will do it again. I want to live

- Bec, Bella's Mum

6 weeks later at her post surgical checkup MRI, they discovered Bella had fluid on the brain and required an emergency craniotomy that afternoon. Another brain surgery. During the operation they found she had 9 subdural hematomas. For the next five days she lay flat in a hospital bed while drains removed the fluid from her brain. She made it home from hospital just before Christmas.

Less than 12 months break from treatment, during which her tumours continued to grow, Bella chose to go on a different kind of immunotherapy.

‘I have never had more fear or felt more despondent about starting a treatment than I was about this,’ shares Bec.

‘Bella asked me “Am I doing more treatment?” And I said, no, we're done. And she replied, “I want to. I will do it again. I want to live.” With reluctance I said, all right then I will support you in that. I just wanted her to know she didn’t have to do it.’

When Bella had her first post-treatment MRI, Bec couldn’t believe her eyes. The tumours had visibly shrunk. Delighted, she says she slapped the oncologist on the shoulder and told him, ‘We’ve waited six years for this moment!’

Today

With no end date given for Bella’s immunotherapy, Bec says she feels like they are living in limbo. Recently this has been made worse by the fact that Bella recently started to experience significant side-effects.

‘It’s hard to know how long her body can sustain the current medication,’ Bec says. ‘But I’m always optimistic because I believe where there is love, there is hope.’

‘For those first two years, it was: I just want to get Bella to 10. And then when we did, I was like: I just want her feeling the best and having the best quality of life. Now, for the very first time, I’m allowing myself to feel like she could make 15.’

Where there is love, there is hope.

- Bec, Bella's Mum

Bec says cancer is the worst thing and the best thing that’s ever happened to her family.

‘There is so much good that came out of something that was so horrific. It’s not all dark. Little things in life give us so much more joy than had we not had this experience.’

Asked what she thinks of doctors and researchers working in this area, Bec says they give families hope.

‘I want the researchers and the doctors to know that what they’re doing is incredible. And I want people to donate.’

‘Surely there is no more worthwhile cause than giving hope to children?’