Frejya Christiansen was just five years old when she was diagnosed with melanoma.
"She had been horse riding with her sisters and she was complaining about her neck hurting," explains her mum Lizzie Christiansen Young, who was massaging her daughter's neck when she felt something underneath her skin "literally pop up".
Her GP initially thought it was a swollen lymph node brought on by a virus but scans later revealed a series of lumps in her neck.
"It was like she had a bunch of grapes in her neck. There was one major mass and all these smaller tumours around it," says Lizzie.
Doctors in Canberra initially suspected another form of cancer before she was diagnosed with soft tissue melanoma.
"I thought melanoma was something you got when you were 65," says Lizzie, who was told her daughter's best chance was to transfer to Sydney Children's Hospital so she could be treated by Dr Antoinette Anazodo, a leading oncologist who has experience treating paediatric, adolescent and adult cancers.
"They could not follow normal treatment protocols. Because she had an adult cancer she had to have adult treatment," says Lizzie.
Frejya was accepted into an immunotherapy trial on compassionate grounds but the treatment had to be abandoned after it became too toxic for Freya's young body.
She later underwent surgery in Melbourne to remove the tumours followed by radiation.
Each year in Australia, about 30 children or adolescents are diagnosed with melanoma, according to Dr Anazodo.
"Childhood cancer affects 1000 children every year in Australia and melanomas would make up 3 per cent of those," she says.
"Because I have dual training as a paediatric and adult oncologist, I am often referred cases of a child with an adult cancer and vice versa."
Dr Anazodo treated three childhood melanoma patients last year who ranged in age from five to 12, all of whom had different forms of melanoma.
She said children aged 14 to 15 are most at risk of developing paediatric melanoma.
According to a new report released by the Australian Institute of Health and Welfare last year, melanoma is the most commonly diagnosed cancer among Australians aged 15 to 24, accounting for 707 new cases between 2010 and 2014.
Melanoma occurs when abnormal cells in the skin grow in an uncontrolled way. Melanoma forms from melanocytes, the cells in the outer layer of the skin that form melanin (the pigment that gives your skin its colour). It can spread to other parts of the body.
Dr Anazodo said there were a number of different types of childhood melanoma, including congenital melanoma and others that form in and around birth marks. Other forms include malignant blue nevus, spitsoid melanoma and nodular melanoma.
Dr Anazodo said nodular melanoma is the most common form of melanoma affecting children and accounts for 40 to 50 per cent of all melanoma cases in children.
Unlike the majority of melanomas that affect adults, it is rarely dark coloured, but is skin coloured or red.
She said children who are fair skinned and have blond or red hair are most at risk of developing this type of melanoma, which is linked to sun exposure.
"It is UV induced and can be caused by DNA damage due to sunburn or extreme exposure to sun," said Dr Anazodo, adding the rate of this type melanoma is higher among girls, due to the fact they are more likely to sunbathe to achieve a tan.
Dr Anazodo said the "ABCDE" checklist used by GPs and the general public to detect skin cancer was amended for children in 2013 after it was found symptoms were different in children and teens.
Despite this, she said many GPs and parents still failed to spot the signs of melanoma in children and adolescents, meaning later detection.
Dr Anazodo says parents sometimes make multiple trips to the doctor but because childhood melanoma is rare, "it is not something GPs are thinking about". As a result, diagnosis is delayed, meaning the melanoma has grown deeper into the skin.
She said the children she treated last year all had long delays between noticing symptoms and diagnosis.
"They do present later, not because parents aren't taking them to the doctor. The melanomas are therefore thicker, more advanced," Dr Anazodo said.
She said parents should visit a doctor if they have any concerns about a lesion or lump on a child's skin.
"If you notice anything unusual, get it checked," Dr Anazodo said. "If you feel you are not being listened to, seek a second opinion."
Dr Anazodo said there are no recommendations regarding how often children's skin should be checked for signs of cancer but anyone with a predisposition to developing melanoma, such as fair skin/fair or red hair combination, birthmarks, congenital issues or multiple moles
should be checked regularly.
"We do not want to make people more anxious but the earlier diagnosis means people are diagnoses at an earlier stage and that leads to a better prognosis," she said.
Dr Anazodo said sun protection was still the best way to safeguard against melanoma and she was concerned that some parents take risks with their children's skin.
"I was absolutely horrified this summer," she said.
"We have to protect our children from a very young age and we need to need to modify behaviours."
She recommends limiting exposure to the sun, always wearing sun protection and applying a
sunscreen that is right for your skins tone and reapplying as soon as you get out of the water as the best ways to prevent melanoma.
"If you have UV damage as a young child that increases your chances of having melanoma as an adolescent or young adult," she said.
Meanwhile, Lizzie is concentrating on making memories for Frejya, now 7, and her two sisters, aged 9 and 11.
They were told in April she was officially in remission, but Lizzie says her health battles are far from over.
"When she was initially diagnosed, I was told palliative care was an option," says Lizzie.
"I was told [she may have] five months. Then I was told 12 months with a poor quality of life. We did not think she would be here at the end of 2017 or 2018, and here we are," she says.