It started like a common flu. But by the middle of the night, seven-year-old Desmond was so unwell he was in the emergency department at their local country hospital.
His mum and dad were filled with fear as their little boy struggled to breathe.
“Des was coughing and nauseous. We saw his stomach was oddly distended. He had to stay upright -as soon as he even tried to lie down, he couldn't breathe,” his dad Aaron said.
When blood tests showed abnormal results, Des was taken by ambulance to the children’s hospital in Sydney.
In the ambulance, Robyn was by Des’ side as he was placed on oxygen, still unable to lie down.
She remembers the immense relief when hours later, they finally arrived at the hospital, desperately hoping for answers.
Des was taken straight into ICU where surgeons drained 1.5 litres of fluid from around his heart and lungs.
Over the coming days, Des underwent countless tests and scans. Tragically, x-rays showed a large, life-threatening mass around his heart and Des was diagnosed with T-Cell lymphoma.
“They sat us down in a separate room with the medical team and gave us the bad news. The shock of the cancer diagnosis took the wind out of our sails,” Aaron said.
Des started chemotherapy the very next day.
It was the Christmas school holidays, but instead of being outside happily playing on his bike or horse riding, Des was in a hospital room away from his little brother Jediah.
“We couldn’t go home for three months straight,” his mum said. “Des is an active country boy and being stuck inside four walls was so challenging - he couldn’t even open a window. He missed his horse, his dogs and all his school friends. His whole world was turned upside down.”
Des endured rounds of painful chemotherapy, multiple general anaesthetics for various procedures and operations, including a central line insertion and lumbar puncture.
During those long months in hospital feeling a world away from home, Captain Starlight brought some brightness to Des’ days.
The Captain Starlights visited Des on the ward with fun games and activities that always brought a smile to his face. He loved playing Mario Kart together with his dad and the highlight of the week was the Friday night UNO games and Bingo.
“The Captains joke around and make him laugh,” Aaron said. “Without Starlight, hospital would be a darker, duller place with nothing to look forward to other than more treatments. It makes the time go faster.”
Des’ treatment was gruelling and managing the ongoing side-effects took its toll. He suffered complications including serious infections, appendicitis and COVID meaning yet more time in isolation.
His mum said their son is naturally very social, active and full of energy, so the loneliness and isolation of hospital was tough.
“He’s not into technology - he’s happier playing LEGO or helping out making pizza, sushi and curries.”
But, despite everything he faces, Des has stayed incredibly positive and the support from his friends has helped keep his spirits up.
Having the fun and distraction of the Starlight Express Room gives Des a place to play and feel like himself again.
“Starlight gives kids something to look forward to during the challenges of everyday hospital life. When kids are laughing, playing a game or winning a prize, it brings back a sense of normality in a world that can feel anything but normal,” Aaron said,
After months of treatment, the family were relieved to hear the news that Des’ cancer was responding well. He will need to remain on chemo to make sure it doesn’t return.
For Des’ mum and dad, having Starlight there makes a real difference during a time filled with so much worry and uncertainty.
“As parents, it makes our job easier too, with someone new and exciting for Des to interact with. Hospital treatments can be overwhelming, but Starlight breaks it up - keeping kids happy, occupied and distracted, and bringing laughter, light and brightness into their day.”
