At the age of three, Sophie Stephenson was facing a life-threatening recurrence of an extremely rare cancer.
Sophie was diagnosed with neuroblastoma at 19-months-old, and underwent a year-and-a-half of treatment before doctors referred to her as having "no evidence of disease".
But three months later, a routine scan showed that Sophie had a tumour in the temporal lobe of her brain.
Neuroblastoma affects about 40 children each year in Australia, and little is known about the characteristics of CNS-relapsed neuroblastoma.
Sophie's parents Brooke and Matthew knew the survival statistics were slim.
When treatments failed to help her, they were determined to save their child's life.
The Adelaide couple enrolled their daughter in a clinical drug trial in Barcelona, but it came at a cost of about $250,000.
An online fundraiser was set up to help the family in its mission to raise $300,000 for the treatment and relocation costs.
Mrs Stephenson said almost $275,000 was raised from members of the community.
"We feel so lucky that the Australian public got behind us and helped us to get the best treatment for Sophie," she said.
"Sophie successfully received the treatment she needed to give her a chance at life.
"Had we stayed in Australia, she would have had no hope, and hope is everything to families like ours."
'A moment we never could have imagined'
The family spent about four months in Spain while Sophie underwent treatment during the pandemic.
"The COVID pandemic contributed to a huge amount of extra stress for our family," Mrs Stephenson said.
The treatment itself, called Omburtamab, was no less taxing.
Omburtmab, a monoclonal antibody that binds to the surface of neuroblastoma cells, was injected into a port in Sophie's brain.
"With the drug being radioactive, I had to wear a lead gown and Sophie and I had to remain in a lead-lined room all day while we waited for her radiation levels to go down," Mrs Stephenson said.
"We then had to take precautions for the next few days to limit exposure of radiation to Matt, myself and our other child, Hannah."
Mrs Stephenson said the family spent most of their time in Barcelona in isolation, "mostly going to parks, beaches and playgrounds when they were quiet".
They then returned to Australia, where Sophie underwent more treatment.
"We spent two weeks in hotel quarantine on returning to Adelaide and then Sophie did another five months of immunotherapy, and then six months of oral chemo through the Women's and Children's Hospital," Mrs Stephenson said.
Sophie finished these forms of treatment about 10 weeks ago and celebrated her fifth birthday in August.
"It was a moment we never could have imagined we would get to see," Mrs Stephenson said.
'We still live with a cloud of fear'
Despite Sophie's latest three-monthly routine scan showing no evidence of cancer in her body, she has ongoing health issues caused by her various treatments, including hearing loss and pain and receives a range of therapies.
"We hold our breath every three months waiting for those results and wondering about our family's future," Mrs Stephenson said.
"While we are so grateful for how far Sophie has come and that she is still with us, we still live with a cloud of fear over our heads.
"Everyone assumes our life has moved on, but the trauma is still quite raw."
Mrs Stephenson said going into the Women's and Children's Hospital causes her significant anxiety.
"Thankfully, Sophie doesn't carry that same anxiety," she said.
"That's one thing I can carry for her.
"We feel relieved every time we hear that Sophie's scans remain clear but are acutely aware that it could change down the track."
