The joy of a first overseas family holiday faded fast when 10-month-old Fio became unwell.
After arriving back home, Fio had a cough, loss of appetite and tiredness. But when dad Adrian felt a lump in his daughter’s neck, he and mum Em took her straight to Emergency.
Doctors initially thought it was a reactive lymph node, but just four days later, Fio’s conditioned worsened.
“She’d become noticeably weaker and was limp, lethargic and struggling to breathe. We were so worried, we rushed her back to hospital,” Em said.
A chest X-ray revealed a clouded area in Fio’s right upper chest, and she was admitted to hospital for further tests and scans.
“Fio was immediately put on oxygen 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 had a CT scan which showed the large mass in her chest extending into her spinal column and neck.
Tragically, the lump her dad had felt just days ago, was a tumour.
Fio was rushed into theatre for a biopsy and to have a central line inserted. She started chemotherapy 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. We were devastated, shattered, and heartbroken. We lived hour-to-hour, fearing for our little girl’s life.”
Fio’s tumour was later confirmed to be stage 4 neuroblastoma.
During those agonising months in ICU, Fio endured four gruelling rounds of chemotherapy, each lasting around three weeks. She also she underwent countless scans- MRIs, MIBGs, CTs, X-rays and ultrasounds - sometimes daily. This was on top of the endless blood tests, medications, syringes, tubes wires, and the constant beeps and alarms.
“The volume of procedures was overwhelming especially for a one-year-old. We were in hospital 24/ 7 for nearly a year. Adrian had to go back to work after the first month, and we lived our life split between hospital and home,” Em said.
Through all trauma of hospital, her mum and dad saw tiny glimpses of their little girl start to shine through.
Fio loved the colour purple, so her face lit up seeing the Captain Starlights when they visited the ward.
“The Captain Starlights brought so much colour and joy to our lives. They are incredible at talking to adults and kids alike, and they're so wildly out of this world, sometimes it was just what we needed,” Em says.
Amid the ongoing anguish of Fio’s surgeries including a tracheostomy, gastrostomy and countless general anaesthetics, the family found moments of joy and respite in the Starlight Express Room.
“We loved to people-watch in the Starlight Express Room and Fio loved listening to the Captains play the Ukulele and sing her favourite songs - Twinkle Twinkle and Rock-A-Bye-Bear. As a mum, it also gave me space to take a break while Fio was napping.”
Em says despite everything Fio faces, her daughter has shown amazing determination.
“Her smile and her spark reminded us that she was still there, still fighting. Day by day, we watched her resilience grow. She’s intelligent, curious and loves being around people.”
Thankfully, Fio is now six months cancer free and has finally been able to come home after her nearly year-long stay in hospital. Her tracheostomy has been removed, and she’s now breathing on her own.
While the tumour has shrunk, 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.”
Physically, it’s hard for Fio as she can't run or move around like other little kids – she needs help to go from lying down to sitting or being on her tummy.
Fio has ongoing therapies to build her upper body strength, and her mum said her daughter has recently mastered commando crawling and has started going to playgroup and loves playing together with her friends and family.
“Fio continues to bring light to every single day. She’s funny, feisty, fabulous and wonderfully cheeky, expressing herself with joyful squawks, funny faces and sign language.”
One of the highlights of leaving hospital was the special “going home” party the Captains threw. Fio was even awarded her own special Captain name 'Captain Chickenwing.'
Fio will need scans every three months to check that she remains cancer-free, and a lifetime of rehab, allied health therapies and other medical treatment.
Em says knowing that Starlight will be there helps bring “a slice of normality,” to hospital life.
“The Starlight Express Room brings a smile to everyone's faces. It’s a place to unwind and take a break from thinking about the next medication or treatment. Everyone's just there for a good time and without Starlight hospital would be a duller, darker place.”
