real life

"She had a 0% survival rate." Taylah, who died age 7, was brave until the end.

“She’s dying” were the words mouthed to me that day that will forever remain engraved in my mind.

It’s that moment you always hear of happening to someone else, but never think will happen to someone close to you. It’s naïve, but until it hits someone you love personally, it can be hard to fathom. For me, my story with brain cancer is not my own, but of my brave little friend Taylah.

It was a Tuesday in June 2014, in Denmark, Western Australia. I had just returned home from a girl’s weekend with friends, including Taylah’s mum Tegan. While we were away, Taylah’s grandpa had noticed she was a bit wonky and off-balance. She seemed to be lacking strength on one side and was running sideways. 

Following a doctor’s appointment, they thought Taylah may have had a bleed on the brain – the result of a knock to the head at a recent birthday party. At the time, that seemed like the most daunting, horrible thought.

But what I would have given now for that to have been the outcome.

Hours later, Taylah had been waiting patiently all day, and it was getting late. The doctor finally came to see Tegan with the news no one wants to hear – the CT scan had shown a mass at the bottom of Taylah’s brain, and she needed to be sent to Princess Margaret Hospital in Perth.

From there, Taylah went back home for a peaceful night (and a sleepless night for everyone else) before she headed to Perth the next day.

And so the journey began. After a few long days of tests and scans, Taylah was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), an inoperable tumour in the brain stem with a 0 per cent survival rate.

From there, Taylah began six weeks of intense radiation and chemotherapy and stayed at Ronald McDonald House, four hours away from the comforts of home and family. While this treatment enabled her to celebrate one last birthday and a Christmas, it was also a kick in the guts watching a six-year-old endure such torture and knowing there would be no positive outcome at the end. 

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Taylah after her treatment. Image: Supplied
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Ever the bubbly, bright ballerina that she was, Taylah took it all in her stride. I still remember trying to laugh through tears when I arrived to see her one night and she showed me her party trick – she could pull her hair out in clumps without it hurting.

She chose to shave her hair when it became too much, and would proudly tell people why she had no hair – "Because I have cancer," she would say matter of factly. Taylah was the bravest person I know and I still admire her strength and courage every day.

From diagnosis to saying goodbye, we had just 11 months with Taylah. She remained in school until a week and a half before she died. She laughed at her inability to stand up straight and thought it was hilarious when she lost movement on one side of her face, with her crooked smile and pirate eye.

Never one to back down without a fight, Taylah fought right until the very end, and lost her battle with brain cancer on the 28 May 2015, at age seven.

A year after we said goodbye to Taylah, myself along with Tegan and my mum Theo formed the group ‘Team Taylah’, in order to raise much-needed funds in support of Cure Brain Cancer.

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Emmalee, Theo and Tegan, AKA Team Taylah. Image: Supplied.

While it was too late to save Taylah, it was important to us not to let her death be in vain, and to do everything we could to one day stop other people from enduring the nightmare we all had.

Hearing the words ‘there is nothing we can do’ shouldn’t be the norm that it is today for so many battling this hideous disease.

Each year in November, we travel four hours from home to Perth to join the Walk for Brain Cancer. With the help and support of countless people and local businesses, we’ve been able to raise over $26,000 since we started in 2016.

You can see more about Team Taylah and the Walk for Brain Cancer here.

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