Surviving sarcoma: Ashleigh’s story

21 Jul 2023

What’s it like to have cancer as a child? In our third blog for Sarcoma Awareness Month, we share the story of Ashleigh Larkin, who was diagnosed with sarcoma as a toddler.

At two years of age, Ashleigh was a happy, sociable little girl who loved going swimming and interacting with other kids her age. She was also a huge fan of all things Disney, especially Mickey & Minnie Mouse.

When everything changed

On Ashleigh’s second birthday, her dad, Wayne, found a lump on the right side of her neck. When she went to see a GP the following day, they said it was the mumps. 

Ashleigh’s mum, Linda, took her to another GP, as she felt that the initial diagnosis wasn’t right. Ashleigh went for an ultrasound, and the person doing the scan said they wanted a senior radiologist to look over the scans the following day.

At this stage, her parents felt very concerned and decided to take her to Emergency at Sydney Children’s Hospital, Randwick. A surgeon was called in and a biopsy was scheduled for the following day. A few days later, they received a phone call with the diagnosis: Stage 3 rhabdomyosarcoma.

Treatment begins

Ashleigh’s parents were told to be back at Sydney Children Hospital at 9am the next day to start her treatment plan.

“When I first found Ashleigh’s lump, it was the size of a pea,” says Wayne. “In two weeks, it had grown to the size of a golf ball.”

Ashleigh underwent a five-hour surgery to remove the tumour as well as her sternocleidomastoid – one of the largest muscles responsible for rotating the head and flexion of the neck. Following that, she had five weeks of daily radiotherapy  requiring a general anaesthetic each time because of her age   and then 21 months of chemotherapy.

Ashleigh finished treatment just before her 4th birthday.

Ashleigh’s life today

Today, Ashleigh is 28 years old. She suffers from a long list of side effects, and never has a day without pain. She had a total left hip replacement at the age of 20, and suffers from hypothyroidism, post-treatment chronic fatigue and constant nausea, as well as third degree burns due to her radiotherapy.

Despite all this, Ashleigh lives life to the full. She works fulltime in graphic design, advertising and marketing, socialises with friends in her time off, and does charity work to help other patients and help create awareness of sarcoma.


“I consider myself so lucky to be here,” says Ashleigh. “I’m also lucky to have the best parents in the world to help and support me every step of my journey.”

“A lot of people say to me ‘don’t you get annoyed that you have all these after-effects?’, but I know they treated me for that moment, not for what was going to happen in 20 years, and I wouldn’t change a thing, ‘cos I’m still here!” 

“I am the person I am today because of my journey. I’ve been able to cross paths with some truly amazing people on this journey, some of whom are sadly no longer with us. And I consider myself so lucky to be able to create awareness and help create a cancer-free future.”

The need for more effective and safer treatments for children diagnosed with sarcoma is urgent.

On Sunday 15 October 2023, join the 19 for 19 challenge to honour the 19 precious years that Anya lived for.

Every kilometre we embark together will help us to move one step closer to improving the outcomes for children diagnosed with osteosarcoma.

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