SOPHIE Berude was six years old, in kindergarten, when she began experiencing a series of ear infections.
She would have a round of antibiotics, only to be sick again a few days later.
"By the third infection, the doctor agreed with me that something more was going on," her mother, Christine Tylee, said. "She'd also been complaining of sore, tired legs, and would even cry when I'd pick her up from school if the car was parked too far away."
Four hours after Sophie had a blood test, Mrs Tylee was in the car with her three children when the GP called.
"She said, 'You need to drop whatever you are doing, wherever you are, and go directly to the John Hunter Children's Hospital'," Mrs Tylee said. "Because I was driving she said, 'I don't want to say more now, we just need to get some important follow up done and it's urgent. You need to go now'."
A nurse was waiting for them at the hospital's emergency department. Mrs Tylee said her head was spinning, wondering what could be so urgent that a nurse was watching out for their arrival.
"I don't even remember how I got to the John Hunter," she said.
They took more of Sophie's blood, and within half an hour, a doctor with a badge that said "paediatric oncology and haematology" came to talk to them.
Sophie had acute lymphoblastic leukaemia.
"It turns out that the reason it was so urgent was because Sophie had zero platelets in her blood," she said.
"She could have died within minutes, even from a paper cut. Her blood had no clotting ability at all. And that completely freaked me out - she had been at school, and she'd probably been that bad for a few weeks. If she'd even tripped over... She was in a really bad way."
Sophie required emergency surgery, but because of her lack of platelets, she needed blood transfusions first.
"It was all so fast," Mrs Tylee said. "They had to pump through as much transfused blood as they could to make the surgery safe."
She was in surgery a few hours later. The Lake Macquarie family was told to expect a "two-and-a-half-year journey" if Sophie was one of the "lucky ones".
"We did get to the end of it, and we are very grateful for that, but we had a few charities dragging us along."
They were pleased other families now have access to a range of cancer charities and support services under one roof at the Hunter Cancer Hub at Kotara.
For families living in rural communities, a 'digital hub' will also open new doors to cancer support services.
The hub shares knowledge and resources between Canteen, Camp Quality, Cancer Council, Leukaemia Foundation, Sleapy's Foundation, Hunter Melanoma Foundation, Hunter Breast Cancer Foundation, and Little Wings.
Mrs Tylee said Red Kite and Camp Quality, in particular, had supported them through that challenging time.
"You cannot go through an experience like that without support," Mrs Tylee said.
"I felt like my world was spinning out of control and a social worker at the hospital, funded by Red Kite, came in and gave us a donation bag full of essential supplies," she said. "They know that most families turn up at the hospital with a child diagnosed with cancer in shock without anything, and that it's usually a pretty horrific time, so they gave us these bags filled with things that families need to get through those first couple of weeks in hospital before they surface to take a breath."
Mrs Tylee said the tutoring Sophie received through Red Kite, as well the Ronald McDonald Learning Program, was "significant" considering she missed about a year's worth of school. Camp Quality had provided fun, laughter and support for her other two children.
"It wasn't just my life and Sophie's life that was turned upside down. It was the whole family," Mrs Tylee said. "We had a three year old and an eight year old when Sophie was diagnosed - and their life kind of came to a halt, as well. Camp Quality also has a puppet show that goes around to schools. So when Sophie was going back to school, the puppets had already been and explained to the kids what cancer is, that it's not contagious, that she'd have no hair and might look a bit different - all sorts of things that made it easier for children to understand and accept."
Sophie, now 12, is doing "amazingly" well.
"She is just embracing life in a way I've never seen before," she said. "So many of her friends died along the way. She knows life is short, so she just goes for it. She just goes for her dreams without fear, because she knows what's really worth fearing, and standing on the stage or skiing down a mountain doesn't even count."
- Families impacted by cancer with children or young people aged 0-25 can access Cancer Hub at cancerhub.org.au or by calling 1800 945 215.
