The ‘king of kids’ – that’s how friends and family describe 14-year-old Spencer. He’s kind and compassionate, always willing to lend a hand and is like everyone’s big brother.
“He’s so happy-go-lucky,” his mum Louise says. “He’s been through some rough days but always comes out with a smile on his face and ready with a joke.”
Some of Spencer’s roughest days began when doctors discovered a lump on Spencer’s leg.
A keen soccer player, Spencer had developed a sore knee, so Lousie sent him to the physio. When his condition didn’t improve, the physio arranged for a scan.
Tragically, tests revealed the family’s worst fears – the tumour was cancerous.
“Our whole world stopped,” Louise said. “I was struggling to cope with the fact that maybe he needed knee surgery and then I hear the word ‘cancer.’”
Sadly, there was more tragedy to come.
Further scans showed a primary tumour located on Spencer’s pelvis and lesions on his lung and spine.
Spencer’s cancer known as Malignant Melanotic Nerve Sheath tumour is extremely rare and is currently inoperable. It attacks his nervous system and impacts his movement and internal organs.
“That news just broke me completely,” his mum said.
Spencer was admitted to the children’s hospital and endured five rounds of chemo plus 35 rounds of radiation on his pelvis.
Louise said the hardest parts of hospital for Spencer was the isolation and loss of independence.
“Before cancer, Spencer was a true teenager; he loved going out with his mates and was always playing sport. Suddenly he’s stuck in hospital, with limited movement and unable to do the things he used to love.”
Hospital took its toll on the whole family. Spencer’s younger brother Baxter struggled with the upheaval and seeing Spencer so sick. Louise had to stop fulltime work while husband Rob needed to keep bringing in income and “holding the fort at home.”
Amid the pain and sadness of hospital, the Starlight Express Room gave Spencer the positive outlet he needed.
“He’s a kid who usually clocks up over 30,000 steps a day, so the Starlight Express Room was a great distraction to get him up and out of the ward especially after so much time in isolation,” Louise said.
Baxter also loved going to the Starlight Express Room to play games with his brother and not feel like he was in a hospital. And they all became huge fans of the daily quiz!
“Being together in the Starlight Express Room helped us feel like a normal family again,” Louise says. “Our whole world was flipped upside down and for a while we didn’t know what was going on, but we knew as soon as we walked through the Starlight Express Room doors we’d be happily distracted.”
When Spencer was later transferred to Gosford Hospital to continue his treatment, Captain Starlight remained part of his journey. They arrived at the hospital with the familiar fun and laughter helping to distract Spencer from his chemo and break up the long, hard days of treatment.
“To have the Captains in Gosford made the world of difference to Spencer. There’s always lots of waiting around so it was nice he got to joke around with them. As it’s a general hospital, it’s not as equipped for kids, but the Captain Starlights make everyone’s day that much brighter.”
Louise said the best thing about the Captains is their sense of humour and their ability switch things up to make a teenager smile.
“Starlight allowed us to have time together as a family and helped us forget for a moment what was actually happening. The positive impact Captain Starlight had on not only Spencer, but his younger brother was what we all needed - they completely turned chemo around.”
While Spencer faces ongoing treatment, he’s doing his best to remain upbeat amid so much worry and uncertainty. One positive is knowing Captain Starlight will be there in hospital helping to bring back his signature smile.
