'Worst nightmare': Willow's mum went into a dark room and came out heartbroken

Kirsty Lawton sat in her daughter's hospital room, chilled to the bone by what she knew was happening just one wall away.

"To sit in the room knowing that next door there's a child dying, it's your worst nightmare," the mum-of-three tells 9honey.

This is the agonising reality parents of sick children live and witness in hospitals around Australia, and the world Kirsty was plunged into when daughter Willow got sick.

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It began with a limp when Willow was two, which doctors initially misdiagnosed after x-rays.

When Kirsty demanded more tests on her third trip to the GP, she was told to take Willow to the local children's hospital. That's when they found the cancer.

"I got taken into this dark room and told the news," Kirsty recalls. "I had to go outside, and straight away I just vomited. My whole body was just not mine.

"She had a 10-centimetre tumour in her body. It's just crazy … how can a two-year-old body hold so much cancer?"

Willow was diagnosed with Stage 4 high risk neuroblastoma and admitted for treatment immediately.

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So began years of gruelling cancer treatment, including six rounds of chemotherapy, a 10-hour surgery, more chemo, immunotherapy, radiation and two stem cell transplants.

Every new treatment came with more terrible side effects and Willow did three stints in the ICU, spending six consecutive nights there at one stage. 

For a while, Kirsty feared she was going to lose her baby girl.

"She nearly died. She had fluid in the heart. She was arrested in the CT room. She was on all of these breathing machines and medications," she says.

Because everything had happened so fast and Willow needed so much attention and care, Kirsty's two older sons Bailey and Harrison sadly had to take a backseat.

"I feel so guilty that I can't give them my time," she says, "I just feel like I'm constantly running on empty."

Over the last three years, Willow has spent 489 nights in hospital, most of them with her exhausted, devoted mum by her bedside.

Kirsty wants to be there to see her daughter through the sometimes scary parts of cancer treatment, but being surrounded by sick children is downright heartbreaking.

Especially because Kirsty knows so many don't make it.

On several occasions, she's had to leave the hospital as children she has come to know take their final breaths. Seeing their families experience that grief is just too devastating.

"I had to leave because I couldn't see that. I couldn't be in the hospital while their child was dying," she says of one particular instance.

"When I got back, the room was empty."

Knowing that Willow's life was on the line as she went through cancer treatment was terrifying, but the Starlight Children's Foundation offered a light in the dark moments.

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For Willow, the Starlight Captains were the highlight of every hospital stay, playing games with her and making her laugh.

For Kirsty, their arrival offered a brief respite where she could take a step back and just breathe, knowing Willow was happy with the Starlight Captains.

"Every time you go to the hospital now, whether it's an admission or outpatient, Willow always wants to go to the Starlight Express Room," she adds.

"And she's also been able to take her brothers too, that's been something really positive for the family … the impact that it's had on her has been amazing."

It should come as no surprise Kirsty is supporting Starlight's 30-day virtual cycling challenge, Tour de Kids, which aims to raise $750,000 to support seriously ill children this September.

Being the parent of a sick child is like "living your worst nightmare", and the experience is even harder on the children themselves, which is why organisations like the Starlight Children's Foundation are so vital.

They offer crucial support services for sick kids and their families, services Willow and her family are still leaning on even now she's in remission.

Because the cancer journey doesn't end when a child goes into remission.

"The cancer is not there, which is amazing, but she's immunocompromised so she gets every virus that goes around," Kirsty says.

It means frequent hospital visits on top of regular checkups and tests to make sure the cancer isn't coming back, which, unfortunately, it very well could.

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Now five, Willow has to live with lingering side-effects from cancer treatment and the last three years have been incredibly traumatic for her whole family.

And it would have been a hell of a lot worse without Starlight in their corner, which is why Aussies need to get behind initiatives like Tour de Kids so no sick child or their family has to go through this nightmare without support.

Willow's family are sharing their story in support of Starlight's Tour de Kids challenge, which aims to raise $750,000 to help brighten the lives of over 19,000 sick kids. Register now at tourdekids.org

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