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Lexie's story

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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, 6-year-old who was crazy about dancing. But life for Lexie and her family was about to turn completely upside down.

Symptoms

When Lexie starting complaining of a sore hip, her mum Kelly thought it was just a dancing injury. But after Lexie started to suffer from a sore back and stomach, Kelly began to worry.

Diagnosis

After weeks of uncertainty, 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.

- Kelly, Lexie’s mum

Treatment

Lexie was rushed to 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 a strange and terrifying new world. Soon, Lexie's long blonde hair started to fall out. Their old, carefree existence became a distant memory. Lexie was attached to an array of tubes and machines and subjected to round after round of treatment, including chemotherapy, radiation, stem cell transplantation, antibody treatment, and surgery.

In hospital

Lexie spent more than a year in hospital, going through more than most of us do in a whole 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, as though she didn’t want people to see her that way. Even now, if we start talking about it, she shuts off.

- Kelly, Lexie’s mum

After treatment

Lexie's journey since treatment has not been an easy one. The cancer has spread to her bones. Her muscle tone was poor, and the antibody therapy she received caused damage to her eyes. But in spite of all this, Lexie refuses to be known as the little girl with cancer. She just wants to be Lexie.

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