The start of February 2022 was filled with great excitement for Kenzie and her family. She’d just turned six and was in her school uniform happily looking forward to being back in the classroom with all her Year One friends.
But just 11 days later, the family’s world came crashing down.
As a baby, Kenzie had suffered seizures. As she grew, she became unsteady on her feet, and it was thought she may have mild Cerebral Palsy. By age four, Kenzie’s left foot was a different size to her right and was starting to turn in. Her parents Erika and Simon became increasingly concerned so sought more answers.
“We kept pushing to get a clear diagnosis,” Erika said. “Due to a backlog at the hospital after Covid and the fact that none of us thought it was anything sinister, it was six months before an MRI was scheduled.”
The day of the MRI will forever be etched in Erika’s memory. She took Kenzie to the hospital and assumed it was going to be ‘pretty straight forward.’
But when nurses told Erika the neurologist was coming to see her, she braced herself for the news that no-one was expecting. Scans revealed a 2cm mass in Kenzie’s spinal cord that was pushing on the nerves in her spine causing the issues in her leg.
Within minutes, Erika was meeting with a neurosurgeon as she tried to come to terms with the shock.
“It all happened so quickly. Suddenly we’re facing the reality that our happy, outgoing little girl needed to have spinal surgery to remove the tumour,” she said.
Kenzie underwent a gruelling eight-hour operation led by her neurosurgeon and a team of 10.
“Even though we’d been told all the possible outcomes, you’re never fully prepared. We knew that one wrong move could mean our healthy, dancing obsessed six-year-old could become a paraplegic.”
Thankfully, surgeons were able to remove most of the tumour, and Kenzie then began her long road of recovery in hospital.
Erika said it was heartbreaking watching Kenzie learning to walk again but was in awe of her daughter’s resilience. “She had a huge 10cm cut down her back and was in terrible pain, but she never complained once.”
During those long painful weeks, Captain Starlight was there in hospital bringing Kenzie the happiness she needed on her toughest days.
“Dressed in silver, yellow and purple, the Captain Starlights are hard to miss!” Erika jokes. “Laughter follows them everywhere they go as kids’ faces light up throughout the hospital.”
Kenzie was progressing well with her rehab so was able to go home. Erika said while they were waiting for the final results of the tumour biopsy, they’d assumed life would slowly go back to normal.
Tragically, when the results came in, their life became unrecognisable.
Kenzie’s tumour was a cancerous Grade 2 DLGNT and she needed to start chemotherapy straight away.
“Our lives changed overnight. Both Simon and I needed to keep working because unfortunately, the bills don’t stop. But we juggled through somehow thanks to the support of our family and work.”
Kenzie has an older brother Cooper so Simon and Erika took it in turns to spend nights in the hospital while the other was at home.
The following year was a blur of unrelenting rounds of painful chemotherapy and ongoing time in hospital. Chemo, physical therapy and isolation took its toll on Kenzie.
“The poor kid had a severe reaction, and she lost all muscle strength so was again, unable to walk. It broke my heart to watch her go through it all over.”
Amid the ongoing challenges of hospital, Starlight helped create moments of joy and happiness.
“The Captains turned up to Kenzie’s room when she was in isolation, they gowned up and put on a full performance that made her laugh, just when she needed it most,” Erika said.
While she was in hospital, Kenzie missed her friends at school and missed her beloved dance classes. Erika said as her daughter is such a social kid, having the Starlight Express Room made all the difference.
“Kenzie loved going there to play Mario Kart and Just Dance with the Captains, having her face painted and doing drawings. The Starlight Express Room helps reduce kids’ stress and anxiety because when they’re playing, they’re thinking of something else and not what they’re going through - it reminds them that they’re still kids.”
Even when she was too unwell to move from her bed, Kenzie could still join in the fun via Starlight TV, calling the Captains to chat and request a movie.
“It’s not even possible to think of what hospital would be like without the Captain Starlights! They make even the hardest day bearable - it was something to look forward to every single day.”
Kenzie has now finished treatment, but the nature of her tumour means they live with the possibility of a relapse, and she needs ongoing scans and check-ups in hospital.
Her mum said, “Kenzie has so many happy Starlight memories from hospital, but her best one will always be when she got to ring the bell in the Oncology Ward to mark the end of treatment and the Captains were there to cheer her on.”
True to her determined spirit, Kenzie is back at dance even doing solo performances where Erika said she “danced her little heart out.”
Despite wearing a leg brace, she never gives up and works hard with physio and Pilates to continue to build up her strength. She has even joined Little Athletics and competed in running and long jump.
“This is a huge milestone for a little girl that couldn’t even run 12 months ago, and she has big plans for next year’s athletics season,” her mum said.
Kenzie also has her exciting Starlight Wish to look forward to when she and her family will travel to Heron Island to swim with the Turtles.
“Her wish will be far beyond anything she’s ever dreamed of. It’s something she thinks about every day. It means the end of treatment and the start of healing. As a family, we’re so grateful and couldn’t be more excited for this fantastic adventure ahead.”
