Isla's story

‚ÄčIsla fell off her chair while blowing bubbles in the backyard when she was nearly 2. Her right hand was shaking when she got up, leading mum, Kelly, to think Isla had simply given herself a fright.

But at breakfast the next morning Kelly noticed that Isla’s hand was shaking again as she went to eat her food.

Assuming that she had hurt herself when she fell, Isla’s generation practitioner monitored the hand and had it taped by a physiotherapist. But then Isla’s other hand began to shake too.

Isla’s condition went downhill fast, and she was unable to walk without assistance or even hold her own head up by the time the family from regional Western Australia were able to get to a specialist in Perth.

Isla was sent straight to hospital for an immediate MRI, as doctors suspected there was an issue with her cerebellum function. Doctors also noticed that Isla had reduced muscle tone in her legs.

“My husband was petrified they’d find a tumour, but I hadn’t even considered that,” explains Kelly. “I thought maybe she had a really mild form of multiple sclerosis or something.”

The MRI came back clear, but they squeezed Isla in for a last-minute ultrasound just to be sure.

“I had no idea they were looking for a tumour, so I left my husband at home and went alone, thinking I’d be back in time for lunch,” recalls Kelly.

But during Isla’s ultrasound, the technician bought in a senior radiographer and then they pulled Kelly into a conference room. For the first time, Kelly feared that something was seriously wrong.

And then they broke the life-changing news that Isla had a tumour in her adrenal glands.

“I just couldn’t believe it,” says Kelly. “I was pregnant with my son, Finn, and it all happened so fast. I had to call my husband to meet me at the hospital… it was just chaos.”

After further testing, doctors confirmed that Isla had a neuroblastoma and a genetic disease called Opsoclonus Myoclonus Syndrome (OMS), which is an autoimmune disease that means Isla is more predisposed to developing tumours.

“The doctors told us that it was low risk tumour and they would cut it out and that would be that,” says Kelly. “So she had the surgery and didn’t have to have chemotherapy or anything.”

Isla then started being treated for the OMS, which involved weekly hospital visits and supressing her immune system to stop it from attacking her organs.

Isla’s family relocated to Perth to be closer to the hospital, allowing them to focus on Isla’s treatment.

But then a few months later, Isla started acting funny. She developed very severe mood swings, was walking in a wobbly way and she started sleeping a lot more.

“I just knew something was wrong. I had been told it was very rare for the cancer to come back, but her symptoms reminded me of another girl we had met in hospital that had Leukaemia,” says Kelly. “I kept telling myself I was being paranoid, but I can’t explain it, I just knew.”

Isla’s cancer was back… and this time it was in her bone marrow.

That was the beginning of 15 months of gruelling treatment, made all the more difficult by the OMS which can’t be treated at the same time.

Isla’s family moved once again to be even closer to the hospital.

“Everything changes… your whole life before the diagnosis just doesn’t exist,” says Kelly.

“Since the relapse, Isla’s treatments have all been studies, which means they are clinical trials. These are the only hope we have… that’s why we know medical research is so important.”

Isla will finish the final phase of her in-patient treatment this September. This round has been particularly tough on Isla: her whole body is peeling because of the treatment, she feels sick constantly and has mood swings from the medication.

Sometimes Isla cries to her mother ‘I just want to be happy’ because she doesn’t know how to express what she’s feeling.

“It’s really hard because we don’t know how to comfort her, we don’t know how to make her feel better.”

The treatment seems to be working and doctors are happy with the outcome for Isla. “But if it comes back, we have very limited treatment options. You can buy time, but the odds would be against us,” explains Kelly.

For now, Isla and her family are focusing on the fact that the latest round of treatments are working. Isla turns 4 in November and is starting pre-school next year.

“I’m really looking forward to seeing her play with other children. When she talks, it’s like she’s an, adult because her whole life she’s been around doctors and grown-ups… it makes me really sad.”