Hear Them Raw: Lily Laws wasn't expected to see her 18th birthday

Orange teenager Lily Laws shared her story on The Land's podcast series, Hear Them Raw. Photo: Emily H Photography
Orange teenager Lily Laws shared her story on The Land's podcast series, Hear Them Raw. Photo: Emily H Photography

Orange, NSW, teenager Lily Laws is about to turn 18.

Her Mac laptop is filled with plans. She has assigned out the speech roles, decided on the important people attending and even selected the music.

These aren't the details for her birthday party. These are the plans for her funeral, but she isn't going to let death knock on her door just yet.

"One of the doctors told me that if we didn't discover the tumour I would have died by my 18 birthday because it began to push my brain down my spinal cord, which will make you brain dead," she says without any concern.

No laughing matter

April 1 is a day recognised globally for humour and pranks. But Lily experienced none of those things this year.

She had been unwell for months and doctors simply told her she had signs of depression or mental illness.

Struggling with chronic headaches and unable to concentrate, she dropped out of her studies.

It wasn't until a doctor looked at her eye sight that they realised she had lost all of her right side peripheral vision. She was taken straight to hospital.

Lily (centre) with her friend Sapphire and mother Del. Photo: Emily H Photography

Lily (centre) with her friend Sapphire and mother Del. Photo: Emily H Photography

"When we first got there one of the doctors had a look at me and because I said I was having constant headaches he put it down to a pressure and spinal fluid so he told me I needed to lose weight because that was what was causing my headaches," she says.

"I was a little bit offended but facts are facts.

"He sent me for a cat scan just in case and one of the doctors came back and it just happened to be the first of April and he said, 'I've got some bad news...you've got a brain tumour'.

"I was like, oh okay, is this an April fool's joke?"

A scan of Lily's brain shows the tumour on the right hand side of the screen.

A scan of Lily's brain shows the tumour on the right hand side of the screen.

She was airlifted to the RPA and spent the next two nights in intensive care before being moved to St Vincent's Private Hospital where surgery took place to remove the tumour that was a quarter of the size of her brain on April 4.

Following a six day wait for pathology results, Lily received news not even a bookmaker would have been backing.

Her tumour was Anaplastic Ependymoma grade three, along with being rela fusion positive.

In simple terms, it was a deadly combination that could genetically modify itself to match her cells.

What a chance

They say you have a one in 14 million chance of winning Powerball. They would have been good odds for Lily.

Her cancer is so rare only seven to 10 people, usually under the age of 10, are diagnosed in Australia.

Lily's mother, Del, couldn't believe what she was hearing.

Lily shared her story on The Land's podcast, Hear Them Raw.

Lily shared her story on The Land's podcast, Hear Them Raw.

"Absolutely gut wrenching and I think, why didn't I notice any of this?" she says.

"It all pointed to that but we didn't know anything about tumours (or) cancers. We have never lived it. We certainly do now."

Lily's cancer was like a newborn baby. Only discovered in 2016, little was known about it.

In a bid to kill any remnant cells, Lily began radiotherapy on June 5.

It was her one and only round of the prevention measure. The next step could be America.

The scar after the tumour was removed.

The scar after the tumour was removed.

"There are only four doctors that have been specifically trained in Ependymoma, and because rela fusion positive was only discovered in 2016, it's sort of a cat-and-mouse game," Lily says.

Two American hospitals offer trial and treatment work in these situations and Lily and her Mum intend to travel there if they have to.

But it won't be cheap. A consultation alone will set them back US$65,000, that's almost $100,000 Australian.

Like any rural town, they unite when times are tough and people have made cookies, candles, key rings or held events through the Love For Lily Facebook page.

Looking ahead

Lily doesn't like to beat around the bush, she is brutally honest but also incredibly selfless.

When she was diagnosed, she decided to plan her own funeral. Not because she was giving up, but because she didn't want to be a burden.

"One thing I did do when I was diagnosed was I planned my own funeral, not because I thought I was going to die but because I thought, well if I am going to go out, I might as well go out the way I want to," she says.

"That way it's less stress for my family and that way my family have just got to set it all up because it's all laid out.

Lily and her dog. Photo: Emily H Photography

Lily and her dog. Photo: Emily H Photography

"As sad as it is, so far I have had such a good life so if I was to die tomorrow it wouldn't bother me because I know that I have so many loved people around me and, yeah I would be missed, but I've had such a good life so I'm just going to keep on doing stuff I want to do and be happy.

"If I was to pass away tomorrow I know I would hurt a lot of people because I have so many amazing people and that's what scares me the most because I don't want to cause pain to people that have done so much for me even though I have no control over it."

It's Lily's attitude that has kept her own mother strong.

"If there is this one per cent chance, Lily has got it," Del says.

"Everything that has gone wrong with her, she still gets up and she still gets going."

Lily Laws will turn 18. It's still a few months away but it's going to be big.

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This celebration will be more than just a coming of age, it's about survival.

"It has been hard to think, well in a couple of years you might not be here, but then I just think, well you've got a couple of years, make the most of it, do what you can, have fun," she says.

Listen to Lily's full story by searching for Hear Them Raw on your favourite podcast app.

This story 'I wasn't going to hit 18' first appeared on The Land.