Nothing brings a smile to Paige’s face like when she’s playing on the swings with her friends, dancing, listening to music and doing arts and crafts. She’s always happy to help out at home and loves to snuggle with her mum and dad.
The first sign that anything was amiss was when her teacher noticed a loss of fine motor skills in Paige's right hand. Her parents Amy and Leif were concerned but were told it wasn’t unusual for five-year-olds to still be figuring out which hand was preferable.
At the same time, her right leg became weak, and she struggled playing sport. Paige also began getting sick in the mornings and her parents couldn’t figure out why.
“Paige progressively stopped doing all the things she loved - she didn’t want to play games or ride her bike or scooter,” Amy said.
When Paige said to her dad “my hand doesn't listen to me,” alarm bells rang. “We knew something was wrong and we needed to act,” Amy said.
They took Paige to the Emergency Department where doctors performed Neurological observation tests. Not seeming to find anything wrong, Paige was sent home.
Amy said she was still worried and knew in her gut something wasn’t right. So she arranged for Paige to see a Paediatric Physiotherapist – a decision that marked a turning point in Paige’s health journey.
“The physio’s report validated our observations and fears,” Amy said. “We were advised to pack our bags and take Paige to hospital.”
By the time they arrived at the hospital, Paige’s right arm was ‘stuck’, bent at the elbow with her fist by her face and she was limping on her right leg.
Paige had her first CT scan, followed by an urgent MRI.
“Not long after the scan began, the room flooded with people and my heart sank,” Amy recalls. “A doctor came in and delivered the words I did not want to hear, “I’m so sorry, your daughter has a brain tumour.”
Paige was admitted to the Neurosurgery ward and was started on multiple medications ahead of her first brain surgery just days later.
The tumour was impacting one of her ventricles, causing pressure and subsequently the headaches and vomiting. She needed a shunt inserted to drain the fluid that was building up in her brain.
Doctors also performed a biopsy of the tumour and confirmed it to be a Pilocytic Astrocytoma – ordinarily a slow growing tumour.
Sadly, Paige’s tumour did not follow the textbook definition of ‘slow growing.’
Her condition deteriorated and she experienced facial droop, difficulty speaking, memory issues and loss of control of her right side.
Paige underwent a second surgery to insert a port access and was started on chemotherapy. Waking up from each surgery and seeing her wounds was confronting and scary.
Amy said hospital and treatment was overwhelming for Paige – but that all changed the moment Captain Starlight visited Paige’s ward.
“The Captains brought, fun, laughter and joy to a five-year-old girl who didn't understand why she had to stay in hospital. The balloon animals, stickers and jokes - all brought a smile back to her face again.”
Over the following months, Paige was increasingly unwell with fatigue, headaches and vomiting and was constantly in and out of hospital.
The long stays in hospital were unrelenting and impacted the whole family. Amy had to leave her job to care for Paige - adding to the family’s stress. While her dad and big sister Evavisited regularly, Paige felt sad and just wanted to go home.
“The disruption to Paige’s day-to-day life and the physical and mental restrictions were hard and frustrating,” Amy said. “She had to become a champion at staying still for every MRI.”
When she was able, Paige loved going to the Starlight Express Room to play with the Captains and socialise with other kids. She especially loved playing Bingo.
“Paige strongly associates the Captain Starlights with happiness and laughter. The break they provide from the stress of hospital helps kids and families rejuvenate and increases resilience,” her mum said.
Those moments of happiness were vital to help Paige and her family cope with every new medical hurdle.
When Paige’s condition was still not improving, doctors ordered another MRI. Tragically, the results showed that the tumour was growing at an exponential rate.
“No one expected the tumour to grow that drastically; it was a terrifying situation,” Amy said.
Paige was rushed in for emergency brain surgery to revise the shunt tubing and insert a second line, as the tumour was now crushing both ventricles.
Paige was started on a new trial medication and happily, over recent months, Paige’s condition has stabilised as the tumour reduced in size. As well as her ongoing cancer medication, she has ongoing treatment including Occupational, Physio and Speech Therapy.
Amy said without Starlight, their hospital experience would have been that much darker.
“As well as providing happiness, Starlight creates a sense of community where kids from all over the hospital can come together to play and socialise. It’s so important for kids to live in the moment of positivity and Starlight brings those moments during stressful times. When kids are engaged with play, they can forget their stresses and worries and just be kids.”
Paige is strong enough now that she no longer needs her wheelchair and is returning to school, riding her bike and dancing. Her mum said while she faces a long road ahead, her daughter’s future looks bright and with Starlight there, her hospital days will be that much brighter too.
