One morning 12-year-old Fleur went to school, feeling a bit tired as it was the end of the school year. All seemed to be OK but later that morning she collapsed at school.She was rushed to Perth Children’s Hospital and was soon fighting for her life with a suspected brain haemorrhage in intensive care.
The next day, a neurologist ordered an emergency MRI which tragically revealed Fleur had Stage 4 Brain Cancer.
"The world stopped. Fleur was very close to passing away that day," her mum Miranda said. "We had to decide very quickly what to do and authorised the neurologist to remove the tumour to save her life."
During this traumatic time Fleur also suffered a stroke which resulted in brain damage and partial paralysis on her right side. She remained in hospital for months undergoing intense therapy and treatments.
Sadly, further tests showed the tumour cells had spread throughout her brain, brain stem and spinal cord - untreatable with conventional chemo and radiation therapies because her cell mutation was so strong.
"Fleur's cancer is very difficult to treat, and we have learned this beast of a tumour is always lurking in the dark and can re-grow rapidly. The doctors are uncertain what the next steps will be, at the moment she's on an experimental drug to keep her stable but for how long, we don’t know," Miranda says.
While in hospital, Fleur felt a world away from her former life where she was fit, active and had a green belt in taekwondo.
Her mum said every aspect of her life has changed as Fleur now needs 24/7 care, meaning Miranda can no longer work. The hardest part for Fleur has been the loss of her independence and feeling 'different' to other kids.
The Captains make our daughter happy and feel accepted for who she is and reinforce to her that she is not strange or different. They always welcome her and give her spirit a lift. There are no amounts of energy tablets or exercise that can give her that.Fleur's mum, Miranda
"Fleur needs her peers around her to help her feel better. The energy she draws from the Captains and the Starlight Express Room helps her enormously and she’s well known in the room,'" her mum said.
The family lives with ongoing anxiety around Fleur's illness progression and Fleur asks many questions about her prognosis. She now returns to hospital for checks every month and an MRI every second month and has therapy at home.
"Fleur has worked really hard to get this far, but we don't know what the future holds and to us, she's our living miracle. While this is our reality, we are so thankful that Starlight is there helping to light up our lives in hospital."
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