I asked, if I was to take her home now, how long have I got? I was told a week. Maybe two.Kelly, Lexie's mum
Lexie was an active, fun-loving, six year old who was crazy about dancing. When she started complaining of a sore hip, no one could ever have imagined how much life was about to change.
At first, Lexie’s mum Kelly thought it was just a dancing injury, but after Lexie started to suffer from a sore back and stomach, she began to worry.
I was on a mission. I knew something wasn’t right.
After weeks of uncertainty, on the 14th of May, Kelly heard the words that would turn their world upside down. Lexie was diagnosed with an extremely aggressive childhood cancer, stage 4 neuroblastoma. She was given less than two weeks to live.
The whole world just goes – everything. I couldn’t focus on anything but her. I felt, if she goes, I’m going with her.
Lexie was rushed into Sydney Children’s Hospital, Randwick where she began immediate treatment. As the reality of what was happening began to sink in, Kelly struggled with the knowledge that, even with treatment, no one could say whether her desperately ill little girl would survive.
Overnight, Lexie and her mum became part of that strange and terrifying new world. Soon, Lexie’s long blonde hair started to fall out. Their old, carefree existence became a distant memory. From attending dance practice and singing her favourite songs, Lexie was suddenly attached to an array of tubes and machines and subjected to rounds of treatments, including chemotherapy, radiation, stem cell transplant, antibody treatment and surgery.
Christmas in hospital
Six months later, when most children were counting down the days until Santa arrived, Lexie was still in hospital. For other children, Christmas Eve meant hanging up their stockings and putting out biscuits for Santa and carrots for the reindeer. For Lexie, it meant preparing for another gruelling treatment.
Lexie was in hospital for over a year. Just six years old, she went through more than most of us do in a lifetime. She spent six weeks in isolation. At one point, she vomited for 10 days straight.Worst of all were the times Kelly endured the terror of seeing Lexie’s little body shut down. Her precious daughter almost died twice.
She just quietly faded into herself, almost like a recluse, as though she didn’t want people to see her that way. Even now, if we start talking about it she shuts off.
Lexie’s journey to recovery has not been an easy one. The cancer had spread to her bones. Her muscle tone is poor and the antibody therapy caused damage to her eyes. In spite of this, Lexie refuses to be known as the little girl with cancer. She just wants to be Lexie.
It’s heartbreaking to know that the very treatments that are saving children like Lexie are also leaving them with devastating long-term side-effects. At Children’s Cancer Institute, we’re on a mission to make those treatments better. Our research is helping find new ways to deliver therapies that are less toxic, less invasive and have fewer side-effects.
Thankfully, Lexie is doing really well, but she will never hear the words 'in remission'. The fear of relapse is never too far away. If Lexie does, the Zero Childhood Cancer program could be her only hope.