Evie’s face lights up whenever she sees a dog in her neighbourhood; the first thing she asks is “may I please pat your dog?”
An outgoing, active kid, Evie loves to chat and has a wonderful imagination making up fun stories about animals and dinosaurs.
So when she was suddenly tired all the time with headaches and bouts of vomiting her mum and dad were worried.
The family GP sent Evie for some initial tests and an MRI. While waiting for the MRI to be scheduled at the children hospital, Evie’s condition went downhill rapidly.
“Evie was getting worse and worse. She was so sick we were needing to pick her up early from school every day,” her mum Angela said. “We went back to the doctors who told us to go to straight to the emergency department.”
The hospital fast-tracked the MRI which revealed Angela and dad Steve’s worse fears.
Eight-year-old Evie had a brain tumour.
“It was all a blur,” Angela said. “Suddenly we’re meeting with neurosurgeons and hearing the words brain tumour. It’s not possible to process that kind of shocking news.”
Evie was immediately admitted to the children’s hospital for urgent surgery to drain fluid to relieve the pressure on her brain. Just days later she underwent surgery to remove the tumour itself.
Tragically the biopsy showed that Evie had Medulloblastoma a form of brain cancer.
The family faced further anguish post- surgery, when Evie lost the ability to talk and move and was diagnosed with Posterior Fossa Syndrome.
Evie spent a gruelling 343 days in hospital.
She endured 30 rounds of radiotherapy, four rounds of chemotherapy and was tube fed during her time in hospital.
The stress and uncertainty of hospital life took its toll on the family. Evie’s mum and dad took it in turns staying with her every night she was in hospital. Both parents had to dramatically reduce their work hours to care for Evie and be there for every medical appointment.
“The hardest part was the never-ending days in hospital and not knowing when Evie might be able to come home,” Angela said.
As well as her cancer treatment, Evie needed intensive rehabilitation including physio, OT and speech therapy. The relentless treatment and daily rehab sessions left Evie exhausted and in pain.
Angela said it was heartbreaking to see her normally chatty bubbly girl not able to talk and needing a wheelchair to get around.
“You could see the frustration in her face, we just focused on doing all we could to get ‘Evie back to being Evie,’” mum said.
Having Captain Starlight in hospital helped Evie along the way bringing a smile to her face during her hardest days.
Evie loved setting challenges for the Captains like being monkeys for the day and would check up on them throughout the day!
Captain Starlight’s afternoon quiz became a daily ritual in hospital which gave Evie something positive to look forward to – and she could take part either from the Starlight Express Room or from her hospital bed, so she never missed out on the fun and laugher she needed.
Evie also loved going to the Starlight Express Room to play puppets, Mario Kart and have Captain Starlight paint her nails at the glitter nail bar!
“Hospital it would have been very difficult without the fun of the Starlight Express Room. Even when she was very unwell, the Captains always put a smile on her face. I can't imagine what hospital would be like without Starlight.”
As her treatment progressed, Angela said the most special moment of all was when Evie spoke her first word.
“After so many months, it was just amazing. She’s been through so much and is still working hard on her rehab – she’s even started taking a few steps on her own.”
And Evie now has a very special four-legged friend alongside her on her journey.
When Evie found out she’d been granted her Starlight Wish, she knew what was top of her list - a puppy!
After dreaming of having a dog for years, Evie’s wish came true with Rex the Spoodle!
“Evie’s wish has brought us so much joy and he helps motivate Evie that one day she’ll be able to walk, run around and play with him on her own,” Angela said. “With Rex, she has a companion for life.”
Evie is also loving training him and teaching him tricks from puppy school.
For now, Evie has finished cancer treatment and is slowly getting back to school and enjoying birthday parties and seeing her friends again. She still requires a wheelchair and walker to get around and continues to have ongoing appointments and check-ups.
Angela and Steve said day-to-day life can be a struggle at times but are focusing on their ‘new normal’ and enjoying having Rex as a wonderful addition to the family.
They are so thankful to Starlight supporters and said, “Starlight brightens sick kids’ days and helps them to enjoy just being kids again. Even when they’re really unwell, it’s so important for kids to be able to laugh and smile and that’s what Starlight does.”
