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Health

Alice lives with a rare childhood cancer. Her Queensland mum is raising awareness

Alice, 5, loves all things pink and pretty, but if you ask her mum she is "all for the rough and tumble of life" as well.

The Queensland girl has had 28 rounds of radiation, weeks of chemotherapy and multiple surgeries since being diagnosed with orbital rhabdomyosarcoma – a rare childhood cancer.

"[It] is a solid tumour that was sitting behind her right eye, intertwined around her orbit and her optic nerve," mum Sian Morley said.

Each year in Australia, more than 75 children aged under 15 are diagnosed with sarcoma, according to the Children's Cancer Institute.

While childhood cancer is "very rare", her family is urging Australians to remain vigilant.

The diagnosis

Alice was born with ptosis, also known as drooping eyelid, but in June 2021 her parents noticed it was worsening.

The family lived in central Queensland at the time and consulted several medical professionals.

"But they couldn't find anything specifically wrong, in their eyes, there were no infections, there were no big problems," Ms Morley said.

Following their instincts, her parents took Alice to her usual specialist, 500 kilometres south in Brisbane.

"Her ophthalmologist pretty much said, 'You need to get to the hospital. I think it might be this, but we need to get more intense scans done.'," Ms Morley said.

The then three-year-old had a same day MRI at the Queensland Children's Hospital.

Five days after her cancer diagnosis, in June 2021, Alice started chemotherapy.

Leaving home

The family of six abruptly left their lives in Calliope behind.

"The only time we went back was to pack up our house and move to Brisbane," Ms Morley said.

She said help from Childhood Cancer Support, an organisation that assists regional families, had made a huge difference.

"They provided us with accommodation within those first couple of weeks of Alice's diagnosis," Ms Morley said.

"Having a home away from home is such a huge help.

"They also offered transport. We could save that bit of money on parking because that's a big difficulty with families in and out of hospital and financially, it's just really hard."

Alice finished treatment in December 2021 with her scans all clear.

An extremely rare disease

Danny Youlden, senior manager of childhood cancer research at Cancer Council Queensland, said just 40 children under the age of 15 are diagnosed with a soft tissue sarcoma in Australia each year.

"The ones that occur in the eye, are really very rare. We're talking about two to three children per year on average," he said.

The signs for different childhood cancers vary, but Mr Youlden said for sarcoma, a lump or swelling that doesn't improve could raise concern.

"The child may have headaches, troubling urinating or having bowel movements. They're quite general symptoms," he said.

"It really is a matter of the medical people being vigilant and if a parent isn't satisfied with a diagnosis or thinks that they need a second opinion, then I would strongly encourage them to do that."

Mr Youlden said the five-year survival rate of children with rhabdomyosarcoma had improved significantly from 64 per cent 30 years ago, to about 80 per cent today thanks to clinical trials.

The cancer returns

In May, Ms Morley noticed Alice's eye had started changing again and a diagnosis confirmed the tumour had returned.

Alice started treatment again in June.

"So far, Alice has had about nine weeks of chemo and she has just recovered from a major surgery to remove her tumour from behind her eye," she said.

"But by doing this, they also had to take her right eye as well. There's a hole where her eye should be now."

This does not stop Alice from running around with her siblings William, 10, Xander, 7, and Henry, 2.

"She is still bubbly, and active, and just taking life as happy as she can, still, even with everything else going on," Ms Morley said.

"She's back on the chemo trail, and will continue on for as long as necessary, and her scans come back all clear," she said.

Talk like a pirate

Ms Morely said the family was taking life day-by-day, leaning on support networks in central Queensland, Brisbane and Sydney.

"We're very lucky, but at the same, it's still really hard," she said.

"There are so many logistical and practical things that come into childhood cancer diagnosis, and especially with having the other kids as well."

"We talk a lot, which is sometimes good, sometimes heartbreaking, but it's got to be done."

Ms Morley urged Australians to support Talk Like a Pirate Day on September 19, a fundraiser for Childhood Cancer Support.

"You never know what life is going to throw at you," she said.

"We never knew that one of our kids would be diagnosed with cancer, you just don't see that coming."

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