At just 20 years old, country artist Keely Johnson has already gone under the knife for six brain operations.
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Two of those happened in just two weeks.
A large tumour in the centre of her brain led to a build up of fluid, she suffers from central nervous system Langerhans cell. histiocytosis – a disease that changes certain white blood cells.
Her time in hospital led her to a new friendship with glioblastoma patient Declan Hegarty.
“I didn’t know once you get it you can’t turn back, you can’t do anything – three to six months and that’s it,” Johnson said.
“I became friends with him in the last couple of months that he was alive and I was inspired by him, his tumour grew in his spine and it paralysed him.
“Once he passed away it was a huge shock for me because I didn’t know kids could get cancer.”
I didn’t know once you get it you can’t turn back, you can’t do anything – three to six months and that’s it.
- Keely Johnson
The loss inspired Johnson to create her own charity, Golden Octopus, that supports not just one childhood cancer but all of them.
At that stage, without a diagnosis, Johnson wasn’t taken under the wing of any charities and her friend Declan’s rare cancer meant he wasn’t either.
“It really put a toll on me that something needed to be done about this.”
At just four years old Johnson had an operation, it was corrected by renowned surgeon Charlie Teo when she was six.
She credits him with saving her life, and she’s continued to be fierce ever since.
"In February I was driving up to Townsville and mum rang me and said my cancer had spread," she said.
"Just hearing those words are like hitting an oncoming truck."
The year she did chemotherapy was one of the hardest in her life.
The hardships she has faced have impacted her music, so has her mentor Lee Kernaghan who she has listened to since she was a young child.
Her debut album titled Fierce is set to be released in March, the title song a powerful reflection of the tough times in her life.
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"Because I look healthy people don't believe I have cancer," Johnson said.
"And I don't feel like I have it, because it's in your brain you don't have any nerves in your brain.
"In my music I try not to affiliate the 'cancer' word, my brand new album coming out next year in March is called Fierce."
Her song Jealous of the Angels is dedicated to all the kids who lost their battle with cancer, and starts off 'I didn't know today would be your last', released in childhood cancer month. "I had to do it to get some closure, if that makes sense," Johnson said.
Her song Kiss Dirt recently hit radio stations ahead of her Queensland tour.
Madeline Link
Madeline Link is a journalist at the Newcastle Herald, with a focus on Lake Macquarie City Council. To keep up with my stories, follow my Twitter @madeline_link, for tips email madeline.link@newcastleherald.com.au.
Madeline Link is a journalist at the Newcastle Herald, with a focus on Lake Macquarie City Council. To keep up with my stories, follow my Twitter @madeline_link, for tips email madeline.link@newcastleherald.com.au.
