Before having daughter Ariel, Launceston parents Lani and Justin Stevens were part of the 70 per cent of people who didn’t know that more kids die from cancer in Australia than any other disease.
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Now, that is a fact they live with on a daily basis.
At five months old Ariel was diagnosed with an aggressive and inoperable brain tumour.
Now six months post treatment, Mrs Stevens said her daughter was continuing to fight the disease.
“It is an ongoing thing for us,” she said.
“I think people often think that when a kid leaves hospital, everything goes back to normal and everything is fine.
“But we live with this every day and every day we don’t know what is going to happen.”
Living with a shunt designed to relieve pressure caused by fluid build up on her brain, last week Ariel’s condition took a turn for the worse.
After tests revealed her shunt was blocked, the family were flown to Royal Hobart Hospital where they spent three days hoping for good news, but preparing for the worst.
Fortunately, Ariel survived surgery.
In other news:
“It has been a very stressful time,” Mrs Stevens said.
“The shunt she has now, she will live with for life, as well as the complications that come with it.
“The neurosurgeons describe it as plumbing – it is artificial things inside of her body. How her body reacts to that will always be a problem.”
September is Childhood Cancer Awareness Month, aimed at raising support, funding and awareness for families and patients.
When Ariel turns two years old in November, she will have spent the majority of her life in a hospital.
Her treatment, including aggressive chemotherapy, has impacted her sight and her hearing.
The affects on Ariel’s cognitive development are not yet known and every three months she requires an MRI to see if her tumour has grown.
As the couple prepares to welcome their second child in January, Mr Stevens said they were taking each day as it comes.
“Ariel is our everything, but is always hard to know what each day will bring,” he said.
“Being home with her again, the other day were able to just sit outside in the sun.
“It was just so nice to be able to do something normal like that with her, outside of a hospital.”
Mrs Stevens said her entire perspective on life had changed since Ariel’s diagnosis.
“Before we had Ariel I thought cancer in kids was this rare thing, but its not,” she said.
“I think more people need to realise how many children are in our hospitals and the families who are living through this.
“Without awareness, nothing will be done to improve the treatment and the outcomes for children with cancer.”
More information on Childhood Cancer Awareness Month can be found here.
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Jessica Willard
Being a health reporter to me is about more than just reporting the problems. It's about asking why they are happening in the first place and what needs to change to fix it.
Being a health reporter to me is about more than just reporting the problems. It's about asking why they are happening in the first place and what needs to change to fix it.
