Like lots of parents of toddlers, Amanda and Damien were all too familiar with the phase of the 'terrible twos.' So when their two-year-old daughter Ava became unsettled and not her usual bubbly self, they put it down to the normal phase of development.
But when Ava suffered ongoing bouts of gastro, was constantly tired and then had a stiff neck, they began to worry.
Amanda said the episodes of gastro were so severe, they became regulars at Queensland Children's Hospital Emergency Department. It was distressing for the family to see their normally happy and active little girl so unwell.
"Ava lives life to the fullest and teaches us to live happy every day. She loves making up jokes and is always busy playing with her dolls, painting, drawing or jumping on the trampoline," Amanda said.
When Ava’s condition didn't improve, doctors ran numerous tests to check if she had a twisted bowel or kidney or stomach issues. With still no answers, Ava had a full brain and spine MRI under a general anaesthetic.
Amanda will never forget the feeling of dread as she walked into the room where doctors were waiting with the results.
The MRI showed a brain tumour the size of an orange wrapped around Ava’s brain stem. She was diagnosed with Posterior Fossa Ependymoma grade 4.
"I felt the whole world crumble in that moment. Scared and shocked doesn't even come close to describing what we felt," her mum said.
As the family struggled to come to terms with the diagnosis, Amanda said as a mum she questioned everything she'd ever done. "I was looking for some kind of reason why this happened, but there wasn't one. Tragically, it's just something that happens to way more kids than I ever imagined."
Ava needed urgent treatment and hospital has consumed her world ever since. Doctors operated straight away and Ava then had seven weeks of chemotherapy. She then endured a second surgery followed by 33 rounds of radiation under a daily general anaesthetic. Sadly, Ava needed a third operation on the tumour with a further 30 rounds of radiation. She is now undergoing 12 months of gruelling chemotherapy treatment.
Amanda said it's heartbreaking watching Ava go through so much pain and trauma. The isolation of weeks on end in hospital and the unrelenting treatment takes its toll on Ava. She misses her three older siblings Charles, Freya and Brenna terribly.
"Damien and I try and juggle full time work and hospital but it's very hard. All our family live interstate so it's even more difficult during COVID. We just focus on keeping things as normal as possible for all our kids." Amanda says.
Ava needs additional care and support for simple everyday tasks like dressing, bathing and eating and her treatment means she can't always do all the things her friends are doing. She's missed being with her friends at kindy and Amanda worries as Ava starts to realise she’s 'different' to other kids her age.
Amid so much heartache, Starlight helps Ava do all the things she loved before she got sick. In the Starlight Express Room, Ava can take a break from the reality of treatment and just be a kid.
"The Starlight Express Room has given us a lot of fun and a place to escape from hospital life. It's fantastic for Ava and she loves the fun and adventure the Captain Starlights provide," Amanda said.
Ava making craft in the Starlight Express Room
Playtime in the Starlight Express Room
When Ava's brother and sisters visit her in hospital, they love going to the Starlight Express Room to spend time together playing games and doing arts and crafts.
The Captains also bring much-needed laughter to the hospital wards and are no match for Ava's jokes!
Her mum said that despite everything Ava has been through, she takes it all in her stride.
"I believe the experience has helped shape Ava as she is today. She has handled hospital so well and loves going there so she can visit the Starlight Express Room to play."
Amanda said without the fun that Starlight brings to kids in hospital, the stress on families would be huge.
"Starlight has an immense impact. It helps kids forget about hospital and their treatment for a moment. Every cent you donate puts a smile on a sick child’s face. And that is priceless."
