Children's Cancer Institute

I didn’t know a world existed where your child could be diagnosed with a life-threatening illness, and in one instant everything could slip through your fingers.

- Kat, Novalie’s Mum

Novalie was in her first year of school when the bombshell hit: a diagnosis of leukaemia. Not long after, her mum was diagnosed with breast cancer. Four years and two relapses later, Novalie continues to show us all how to get the most out of life.

Pre-diagnosis

Before Novalie was diagnosed, her mum, Kat, says she was ‘the healthiest kid ever’, who had ‘barely even had a cold’.

A happy and sociable 5-year-old, Novalie liked dancing and swimming and was enjoying finally going to school, having looked forward to it for years. Her little brother, Ledger, was just starting preschool.

For the first time in years, Kat was looking at getting a couple of days a week to focus on her work. ‘In a way, it felt like it was too good to be true,’ she says.

Symptoms

Towards the end of Novalie’s first school term, she developed a cough that wouldn’t go away. She was also low in energy, had a one-off fever, and sometimes complained of sore legs.

‘Novalie would be a bit flat and tired and off her food, and then she’d come good,’ Kat recalls. ‘She was up and down for a while but her symptoms were vague and she didn’t get progressively worse. It’s so weird… you expect if your child had cancer there would be some giant red flag that would jump out in front of you.’

You expect if your child had cancer there would be some giant red flag

- Kat, Novalie's Mum

When Novalie appeared to develop a urinary tract infection, Kat took her to the GP who prescribed antibiotics. However, nothing improved. Kat decided she wanted a blood test done, and went to the Emergency Department of her local hospital.

When the results came back, Kat was asked to get her husband, Nate, to come in. They were advised that Novalie should go immediately to the Royal Children’s Hospital in Melbourne.

‘We’d just had a blood test done and all of a sudden, we were going in an ambulance’ says Kat. ‘That was in May. Novalie didn’t come home ‘til September.’

Diagnosis

At the Royal Children's hospital, an oncologist told Kat that the diagnosis was looking a lot like leukaemia, though they wouldn’t know for sure until a lumbar puncture and bone marrow aspirate were done the following morning.

‘I couldn’t stop shaking,’ she says. ‘I just could not believe that everything could come crashing down in one instant.’

The following day, Novalie was diagnosed with acute lymphoblastic leukaemia (ALL). Because of her extremely high white blood cell count, she was stratified as high-risk.

‘I didn’t know what to tell her’, says Kat. ‘But I remember saying, “No matter what happens, we will do this together, and I’ll always be there with you.”

A Bad Start

Kat and Nate were advised that Novalie would need to be living close to the hospital, and this meant quickly finding somewhere to stay. While Nate and Ledger remained in the family home to continue work and school, Kat and Novalie moved to temporary accommodation in Melbourne. ‘The logistics were incredibly stressful,’ says Kat.

‘I didn’t know a world existed where your child could be diagnosed with a life-threatening illness, and in one instant everything could slip through your fingers – your home, school, your family unit, your job.’

After the first 10 days of inpatient treatment, Novalie was discharged to recover at local accommodation. Soon after leaving hospital though, it became apparent that she wasn’t well. When she developed a temperature, Kat rang the hospital, who asked her to bring Novalie back in.

I thought a leukaemia diagnosis was the worst thing. I had no idea it could get this much worse.

- Kat, Novalie's Mum

As the day went on, Novalie got sicker and sicker, eventually ending up in the intensive care unit (ICU). After deteriorating even further, a medic alert was called, with more than 10 professionals working frantically to keep Novalie alive.

‘They were trying to get lines into her to give her medication, but her body was shutting down. It turns out she had septic shock,’ explains Kat. ‘They told me, “If she deteriorates further, we’re going to have to put her on life support”. I nearly fainted at that point.’

‘I thought a leukaemia diagnosis was the worst thing. I had no idea it could get this much worse.’

More Bad News

After four days in an induced coma and a week in ICU, Novalie was well enough to return to the cancer ward and finish induction therapy. However, unlike most children treated for ALL, she didn’t go into complete remission.

After testing at Children’s Cancer Institute revealed she still had leukaemia cells in her body, she was classified as very high risk and began higher dose chemotherapy.

In June 2020, Kat had just taken Novalie to the hospital for treatment as an outpatient when she noticed a hardened, thickened area in her breast. She arranged a mammogram, and was delivered devastating news: she had breast cancer.

‘I felt like saying, “My daughter has cancer; this can’t be possible”. It was triple negative breast cancer, which is the most aggressive type.’ There is no known cause for either Kat's or Novalie's cancer and no link between the two.

Tandem Treatment

Now Novalie and Kat were both receiving chemotherapy, with ‘matching ports and matching headscarves.’ ‘It was the most surreal experience,’ says Kat. ‘Suddenly I’m the patient, when I’d been the carer.’

‘For most people, it would be the worst thing that had ever happened to them. But I’d already experienced that, so I just thought: OK, what do we need to do? Let’s get this done.’

‘I thought: if Novalie can do this, then I can. She gave me so much strength.’

Relapse

In September 2021, two and a half years after Novalie’s diagnosis, Kat and Novalie were scheduled to finish treatment within a week of each other. But devastatingly, Novalie’s final lumbar puncture revealed the presence of leukaemia cells.

‘That’s when our world fell apart,’ says Kat. ‘We’d just crossed the finish line, and now they were saying that we needed to start again.’

Once more, accommodation in Melbourne needed to be found, and a new treatment plan put together — one that ‘made the frontline treatment look like a walk in the park’, according to Kat.

Novalie endured intensive chemotherapy, followed by radiation therapy, all during severe COVID restrictions that meant long stretches in hospital without visitors or interactions with others.

We didn’t know how we were ever going to get out of the hospital.

- Kat, Novalie's Mum

During the last round of treatment, her little body couldn’t take any more, and she again ended up in the ICU. A planned seven-day admission for chemo turned into four and a half months. ‘We didn’t know how we were ever going to get out of the hospital,’ says Kat.

In October 2022, 13 months after relapsing, Novalie was finally able to return home, though she still needed two years of oral chemo and monthly checkups.

‘She was just happy to get back to normal life,’ says Kat. ‘It took her a while to bounce back, but during Term 4 she was eager to go to school as much as she could. And then we had the summer holidays, and I remember thinking: Thank goodness, that terrible time is finally behind us.’

Another Relapse

In January 2023, another routine lumbar puncture revealed that Novalie had relapsed again. ‘I just could not believe it,’ says Kat. ‘It was not on my radar at all. She’d been slammed with so much chemo… how did the leukaemia survive?’

It was at this point that Novalie became a candidate for a type of immunotherapy called CAR-T cell therapy. Immune cells from her body were sent to the US to be genetically engineered, and for the fourth time, Kat and Novalie moved to live near the hospital.

When the engineered cells arrived, Novalie received the treatment as an outpatient, and in a couple of hours it was all over. ‘It was trillion times better than the other treatments she’d had,’ says Kat. ‘She didn’t really have any side effects; it was amazing.’

Today

Today, Novalie is in Year 4 and is throwing herself into life. She has a very full schedule of extracurricular activities including violin, singing, musical theatre, dance, and swimming.

During long stretches on the cancer ward, Novalie channeled her love of art into making greeting cards to sell to the doctors and nurses. Since returning home, she has expanded her business, Bee Brave Cards, to an online store and that keeps her very busy. So far, she has donated over $5000 to children’s cancer charities from her card sales.

Novalie still deals with complications from the intensive chemotherapy she received, and returns to hospital every month for a check-up. ‘If there is any sign that the CAR T-cells are not killing her B cells, we know we will go straight to bone marrow transplant,’ says Kat. And even though I’m grateful we’ve got another option, we don’t want it.’