IT is still an uphill battle for three year old Austin Roper, but the brave boy is still smiling as he fights his battle with leukaemia.
Austin was diagnosed with acute lymphoblastic leukaemia on April 24, 2017, and spent months living at Ronald McDonald House in Newcastle with his parents, Alana and Nathan, while receiving treatment.
A fortnight before Christmas, Austin was given the good news that he was able to begin maintenance treatment and was allowed to return home to Port Macquarie.
This stage entails chemotherapy for the next two and a half years.
“He has oral chemo every day, IV chemo once a month and chemo into his spine once a month to begin with, and then every three months after the first year,” Alana said.
Now back home, the Ropers still face the daunting prospect of Austin relapsing.
“We’ve been given our odds with him to relapse, which is 20 percent. And that is always on your mind,” she said.
“It takes a second for anxiety to kick in, especially when I notice similar symptoms from before his diagnosis.
“Things like stopping his eating, looking lethargic and tired… that anxiety takes over and you think worst case scenario.”
It’s a long and hard road, but we are filled with hope.Alana Roper
His room, filled with Lego, other toys and his family dogs, will no doubt aid Austin’s next two years of treatment.
“Being home is a massive difference. He can forget for a bit, and get back to normality,” Alana said.
“Nathan can go back to work after seven months and you can get back to doing things that were familiar to you.
“Having quite intensive treatment it was so full on for Ozzie physically and mentally, but he’s doing very well now.”
Being able to celebrate Christmas at home was a huge boost to Austin’s mentality. But Alana knows they are among the lucky ones.
“Christmas was good, but it was also hard. We met a lot of other families whose children passed away throughout the year,” she explained.
“Whether that’s leukaemia or other types of cancer and tumour, it was more than you could ever believe.
“We are lucky that we are at the stage we are at with Ozzie (and) we have so much support back home. Friends, family, the community…it’s amazing.
“For some people it can be confronting to see him, and some people have asked about mentioning the tube in his nose or if we talk to him about it all.
“We don’t ever sugar coat anything with him. He’s picked up everything along the way.
“He understands that he has cancer and he knows that it’s only special people that have it.”
Sadly the treatment process is a normal way of life for Austin. Something he has never grown to cope with.
“He still fights the needles and gets anxiety when we go to the hospital,” Alana said.
“Now that he knows he is home – and hopefully never going to go and live back at the hospital – he can begin to do what ‘normal' kids do.
“He has always wanted to learn to ride a bike. Now, he has a balance bike and he’s taken off on it and rides every day.”
There are the stares, due to his petruding nose tube that is used for medicine, and his small stature, but Alana and Nathan want anything but sympathy.
“I don’t want people feeling sorry. I just want people to treat us like normal,” she said.
“It’s a long and hard road, but we are filled with hope.