One minute four-year-old Frankie was happily jumping on the trampoline enjoying the summer holidays with her three big brothers.
The next, she was in hospital facing an unimaginable road ahead.
“Frankie had been unwell for about 36 hours with leg pain, fever and some red spots on her shoulder. But after a night of terrible pain, we went straight to emergency,” her mum Kate said.
Sadly, tests revealed Frankie had Acute Lymphoblastic Leukaemia. She underwent her first surgery that afternoon and started treatment the very next day.
Suddenly, instead of spending precious time together as a family, Kate and dad James felt torn in two.
“Our three boys Alexander, Henry and Charlie moved to their Nanna and Pop’s house, and friends helped out over those initial weeks. I stopped work to care for Frankie and manage her medical needs,” Kate said.
Frankie is chatty, bubbly and loves making friends. At home, she’s always busy with Lego and making pretty things like paintings, bracelets and jewellery. She especially loves being outside making special potions or playing in the water.
It was overwhelming for Frankie to suddenly be in the scary world of hospital away from her family and all the activities like dance classes and gymnastics that brought her so much joy.
In hospital Frankie faced endless blood tests, long days of fasting, and rounds of oral, IV and subcutaneous chemotherapy, immunotherapy and steroid treatments. She also had fortnightly chemotherapy administered through lumbar punctures meaning nearly 20 general anaesthetics this year alone.
“On top of the pain and fear of every treatment, the isolation from her friends and family has been the hardest part for Frankie. So many steps in this journey have required enormous acts of courage and bravery from such a young child,” her mum said.
From the very start, Starlight has been there with moments of happiness helping the family cope with every tough day in hospital.
When Frankie was first admitted to the oncology ward, Captain Starlights visited with fun and games and her brothers were excited to check out the Starlight Express Room. As Frankie’s treatment progressed, she was able to visit too to play games, make balloon creations, have fun cooking with the Captains and enjoy a break from her hospital room.
She especially loved the face painting, and her mum jokes that her daughter was a regular at the craft table and on the Starlight Express Room stage!
“I’m not sure how we would have made it this far without the Starlight Express Room,” she said. “It’s such a happy place on really dark days. It’s a safe place where everyone is respectful, happy and kind. It gives Frankie something to look forward to and as parents, a space to breathe, chat to other families and let your child be a kid for a little bit.”
Kate said despite all the side effects of Frankie’s treatment - especially losing her hair, her daughter has been so brave doing her best to cope with her treatments while re-building strength after losing the ability to walk.
“So many parts of this journey have required her to show maturity way beyond her age. Having fun, laughing and playing have helped Frankie cope, recover and build resilience.”
Even on days when Frankie was unable to leave the ward, she could still find moments of fun and adventure with Captain Starlight -whether playing fun pranks, hide and seek or keepy-uppy, to requesting her favourite songs.
“So often, Frankie has not had any choice or control throughout this journey, but Starlight gives her a voice, and she can express who she is,” her mum said.
Once Frankie finishes the first stage of active treatment, she’ll move to a maintenance phase. She’s hoping to be able to start school next year and, in the meantime has been busy trying to master doing a handstand again.
Her mum said while they continue to face a long and uncertain road ahead, every moment of joy and happiness helps ease their stress and worry.
“The Starlight Express Room helps to manage the stress and anxiety of diagnosis and treatment. Frankie gets to be a regular child and play and laugh like kids her age should be. Starlight has helped us create some happy memories of this terrible journey we are on. We thought we had lost Frankie’s smile, and it wasn’t until we heard her laugh that we realised what had been missing.”
