On Christmas Eve, instead of trying to guess what was under the tree, Ava was undergoing her last treatment for Acute Lymphoblastic Leukaemia at John Hunter Children’s Hospital.

While her parents, Danielle Luke and Jade Close are glad the ongoing treatment is finished, she may not be out of the woods yet.

Ms Luke said a temperature of 38 degrees will see her straight back in hospital and she wouldn’t be released unless she had displayed no temperature for a straight 48 hours and nothing else is wrong.

“She’s still on medication – she’s on antibiotics to stop pneumonia,” she said.

“She’s on it until February.”

Monthly blood tests will help doctors keep track of Ava’s progress but there are still risks of side-effects from the chemotherapy including possible heart problems and softening bone tissue.

“The first year will definitely be the worst,” Ms Luke said.

“The worry is always there. It’s not going to go away because there are so many risks.

“We just don’t know what’s around the corner.”

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It has been a long road for Ava’s family, with her diagnosis made on September 7, 2015.

Ms Luke said Ava had a cold so she took her to a doctor who thought she looked a bit pale and ordered some tests. Her iron levels were high so the next day, more tests were done and Ava was rushed to Tamworth Base Hospital. Within a few days Ava was in surgery in John Hunter having a portacath inserted so intense chemotherapy treatment could begin.

“It was a crazy couple of days,” Ms Luke said. 

“It was pretty scary considering it became something like that.

“It was overwhelming.”

Ms Luke said she lived at Ronald McDonald House for the first nine months with Ava and her older sibling Kodiee to be close to John Hunter Children’s Hospital. Mr Close had to continue working and drove back and forth to Newcastle. 

One of the most trying periods of the treatment was the first month as Ava’s body tried to adjust to steroid treatment. The treatment swelled her face and stomach and made her ravenously hungry and heavily impacted her emotions.

“She ballooned. You wouldn’t have recognised her,” she said.

“She went up two to three clothes sizes. I had to go to Kmart.

“She couldn’t even walk [sometimes]. We had to get a pram because she was so heavy [with fluid].”

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After the initial nine months, the family moved back home and Ava had 18 months of “maintenance” treatment, which included intravenous chemotherapy, oral chemotherapy and lumbar punctures. Wingz4Kid was a great help to the family, saving them hours of driving to get to Newcastle.

Over the 27 months of her treatment, Ava underwent about 30 surgeries including lumbar punctures and bone marrow aspirates. At first, Ms Luke said Ava was diagnosed as “high-risk” so lumbar punctures were performed weekly and three different chemotherapy drugs were administered through her spinal cord.

Her compromised immune system meant Ava could no longer go to public places where she might pick up a virus or infection, and if any of the family became sick, they had to wear face masks to protect her.

Another major adjustment was hair loss.

“She was pretty upset when she started losing her hair,” Ms Luke said.

Mr Close said Ava became secretive and they discovered she was keeping the hair she lost.

“She was pulling it out and putting it under her pillow,” he said.

“She was saving it to put it into birds’ nests.”

Every time Ava had a procedure of some sort, she was given a bead and the reality of her treatment hits home when you see a full bag of the beads she has collected since 2015.

The youngster has also missed a lot of schooling and experienced memory loss.

“She had short-term memory loss for a while but she’s got good problem-solving skills so that sort of balanced it out,” Ms Luke said.

Despite the difficulties, Ms Luke said the family formed connections with other families in the same situation, and Ava made plenty of new friends.

“It wasn’t a bad experience for her at hospital because she got to see her little friends and the nurses were nice,” she said.

A highlight of 2017 for Ava was getting up close and personal with the animals at Australia Zoo, handfeeding giraffes and cleaning tortoise shells. The special experience was organised by the Make-A-Wish Foundation in June.

“She wanted to hand-feed a tiger but she was too young to do it,” Ms Luke said.

The new year ahead will mean a lot of change for the family who have decided to move back to New Zealand. Ms Luke and the two children will leave Australia’s shores on January 22, with Mr Close to follow in February or March. Their new home is an hour from Starship Hospital in Auckland.

The family moved to Gunnedah five years ago and hoped to raise enough money to buy a house but after Ava’s life-changing diagnosis, their priorities have shifted.

“With everything that’s happened, it’s changed our perspective on life,” Ms Luke said.

“I’ve missed being around family and it will make it easier having help.”

Ava’s parents said it will also be good to spend some time together again.

“We’ll actually be able to have date night again,” Jade said.

Ava and Kodiee are excited about the move and were busy putting together a puzzle of New Zealand when the Namoi Valley Independent visited on Wednesday. Kodiee and Ava will be attending school this year in Huntly.

“It’s going to be all new to Ava when she goes back,” Ms Luke said.

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