Fio's Story

When baby Fio came home from a family holiday with a cough and a little tiredness, her parents never imagined it would mark the beginning of a life-changing journey. Within days of their return, their bubbly little girl was diagnosed with stage 4 neuroblastoma. Fio’s mum, Em, shares their story.  

When our 10-month-old little girl, Fio, returned from her first international trip to New Zealand with a cough, loss of appetite, and growing lethargy, we didn’t think too much of it. Her dad, Adrian, had also been unwell toward the end of the holiday, so we assumed she’d picked up the same bug. But one night, Adrian felt a lump in Fio’s neck. Worried, we took her to the Emergency Department at Westmead Children’s Hospital. Doctors examined her and reassured us that it was nothing serious - just a reactive lymph node. 

Four days later, however, Fio had become noticeably weaker. She was limp, lethargic, and struggling to breathe. Alarmed, we rushed her back to the Emergency Department. A chest X-ray revealed a clouded area in her right upper chest, triggering a flurry of tests and scans. Fio was immediately put on oxygen and admitted to hospital while doctors tried to determine what was wrong. It was an agonising wait as different medical teams and the Oncology Department  worked out the next steps. 

Finally, Fio underwent a CT scan. The results showed a large mass in her chest, extending like fingers into her spinal column and neck. The lump we’d first felt wasn’t a swollen lymph node at all - it was a tumour.  Em, Fio's mum

On January 22, 2025, Fio was rushed to theatre for a biopsy and to have a central line inserted. Chemotherapy began that very night. We had no idea this would mark the start of a 105-night stay in Intensive Care - a period that began with Fio requiring CPR, an experience that was terrifying beyond words. 

The tumour was later confirmed as a medium-risk, stage 4 neuroblastoma. 

We were devastated, shattered, and heartbroken. In those early days, we lived hour-to-hour, fearing for our little girl’s life.

Fio endured four gruelling rounds of chemotherapy, each lasting around three weeks. Along the way, she underwent countless scans—MRIs, MIBGs, CTs, X-rays, ultrasounds - sometimes daily. There were endless blood tests, medications, syringes, tubes, wires, beeps, alarms, consent forms, and procedures. The sheer volume of procedures was overwhelming. 

Yet through it all, tiny glimpses of our little girl began to shine through. Her smile, her spark, her fierce determination - they reminded us that she was still there, fighting. Day by day, we watched her resilience grow. Fio’s bravery has been nothing short of extraordinary.Em, Fio's mum

Fio is now 6 months cancer free and has been able to come home after an 11-month stay in hospital. Her tracheostomy has been removed, and she is now breathing on her own without ventilation. While the tumour has shrunk and is no longer active, it caused permanent damage to her spinal cord. As a result, Fio has no movement or sensation from the waist down. 

We know she will go on to live a full and incredible life, but it breaks our hearts that she will likely be wheelchair-bound forever. This was not the life we’d dreamed of for her.

Still, Fio continues to bring light to every single day. She is funny, feisty, fabulous, and wonderfully cheeky- expressing herself with joyful squawks, sign language, and hilarious face-pulling. 

We’ll have scans every three months to check that she remains cancer-free, and a lifetime of rehab, allied health therapies, and other medical supports ahead of us. We are so privileged to be her parents and have been blessed with the care of the medical teams at Westmead Children’s Hospital.   

Research into neuroblastoma is absolutely critical. This disease has changed the trajectory of Fio’s life forever - and perhaps, with earlier diagnosis or more effective treatments, her journey could have been very different. 

Our hope is that one day, other families won’t have to face what we did - that better, safer treatments will give every child like Fio the chance at the healthy, happy life they deserve. 

 

Help Babies Like Fio

Neuroblastoma Australia is working with researchers to develop more effective and less toxic treatments for all children diagnosed with neuroblastoma.

We need to ensure every child gets the opportunity to grow up and lead a long and healthy life. Your help matters. Your donation to Neuroblastoma Australia ensures that we can continue to help fund the research needed to develop better and safer treatments, and ultimately find a cure.

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