A family's experience with childhood cancer
Evie Weir has been battling advanced neuroblastoma, a form of cancer, since she was two years old. Her mother Sarah reflects on what Evie's cancer journey has meant for the family.
Evie was two years old when she began to vomit frequently. At first, a GP attributed it to a virus and recommended paracetamol, but after a week, her mother knew something was seriously wrong.
Sarah Weir took her feverish daughter to a hospital where she found out Evie had advanced neuroblastoma, meaning cancerous nerve cells had spread throughout her body and even into her young bones.
"It was a massive shock," said Ms Weir, a music teacher. "We were told right then and there she had a 50-50 chance and that it was going to be a marathon of treatments."
For the past four years, Evie, now six, has been taking powerful drugs and undergoing neurosurgery and chemotherapy to beat the cancer. Some scans have shown that she was cancer free.
Throughout their ordeal, the Kids Cancer Project, has been by their side, not only providing them direct support but raising much needed funds for childhood cancer research.
Cancer is the leading cause of death of Australian children, by disease. But only 3 per cent of government funding for cancer research is directed at childhood cancers, which are different from adult cancers.
The charity this September is running Childhood Cancer Awareness Month in an effort to raise $350,000, which is enough to support three researchers dedicated to finding a cure for childhood cancers. Australians can show their support by buying a gold ribbon.
On Friday morning, its founder Col Reynolds parked a big yellow bus outside Westmead Children's Hospital in Sydney, completing a 9800-kilometre journey down the east coast of Australia to raise money for research.
"On the road trip we had 35 events within 30 days and got 8500 pledges signed, which has allowed us to fund one scientist," he said.
"Now it's the awareness month and by the end of September, we would like to raise $350,000 so that we can fund three scientists. The more we can fund, the quicker we can find an answer and better treatment."
He said it was only through research and efforts of charities such as the Kids Cancer Project that, for example, the length of chemotherapy treatment had shortened from four years to six months for children.
"There's never been a specific treatment for children, and chemotherapy causes horrifying side effects in little children," he said.
"You cannot prevent childhood cancer because it's about the cellular structure going crooked, but in adults, you can make lifestyle changes to change the direction of adult cancers," he continued.
"The only way to fix this is by science. There isn't any other way."
The awareness month will kick off with a vigil on Friday night on the steps of the Sydney Opera House, whose sails will be lit gold – the international awareness symbol of childhood cancer.
Fairfax Media is a proud supporter of Childhood Cancer Awareness Month.
Ms Weir will be among those attending. Last year they had a "beautiful" 12 months where Evie didn't need any treatment and her hair regrew.
But at the start of this year, doctors discovered a "spot" in her head. Last week, Evie began taking a trial drug as a "last option".
"We're trying to enjoy the days when she's really good because we just don't know what's going to happen tomorrow or in the future," she said.
"Without research, it's not going to get fixed and I'd love to see one day that moment where we find a cure," she added.
Leukaemias are the most common type of cancer diagnosed among Australian children, accounting for around one third of all cases, followed by tumours of the central nervous system and lymphomas, the Australian Paediatric Cancer Registry, provided by Cancer Council Queensland, shows.
In terms of cancer deaths, the leading cause is tumours of the central nervous system, followed by leukaemias and neuroblastoma. These three cancers account for 75 per cent of all cancer-related deaths among children under 15.
Cancer Council Queensland CEO Chris McMillan said tumours of the brain and central nervous system are responsible for around 3 per cent of cancer deaths in adults in Australia, compared to 40 per cent for childhood cancers.
"Children are very rarely diagnosed with cancers that arise in organs such as the lung, breast, prostate, or bowel," she said.
"These types of cancers are the leading causes of cancer-related deaths in adults."