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Ava's story


Ava's Story

At just six months old, Ava was diagnosed with high-risk neuroblastoma when a tumour was found in her chest and abdomen. As the tumour wrapped itself around her spine, this bright and bubbly baby girl underwent 10 rounds of chemotherapy and two operations, before the tumour was revealed to be gone. Now a happy, healthy eight-year-old, Ava’s parents are thankful for the incredible research that has gone into cancer treatment for getting them through this nightmare.

As their daughter Ava turned six months old, Tony and Jen just getting used to being parents. They had a happy, healthy baby girl and there was nothing out of the ordinary.

But one Friday night, Tony was at a friend’s house when he received a call from Jen that something was wrong. When he got home, he found Ava was choking, her eyes were rolling back in her head and she couldn’t breathe.

They took her to hospital where an x-ray revealed fluid on her lung and a collapsed lung. A CT scan the next morning found a mass in her chest and abdomen consistent with a tumour. Tony and Jen weren’t sure what was happening.

“You look down at Ava in her cot, tubes everywhere and it was like ‘well what does that mean?”

From there, teams from the ICU, surgery and oncology units briefed Tony and Ava. They had found a tumour that was thought to be neuroblastoma, the most common solid tumour in early childhood. An anxious day awaited as they stayed by Ava’s bedside, anticipating the results of Ava’s biopsy to discover the severity of the cancer.

The results revealed Ava had high-risk stage 4 neuroblastoma that had spread to her bones. The tumour was too large to operate so high-dose chemotherapy began immediately. Fortunately, the results also showed that there was no sign of the gene MYCN present, which indicates an aggressive form of neuroblastoma. Tony had mixed feelings.

“You’ve got this strange situation where you’ve been told your child has cancer and your crying because of that but you’re happy because it’s not the worst diagnosis.”

The family settled into their new routine, one week of chemotherapy, two weeks off. When Ava woke in the hospital for the first time, she spent a day screaming, but all her parents could do was wait and trust the treatment was working for their precious daughter.

Waiting for scan results was a traumatic experience. But the first can revealed that the tumour had reduced by 50%. Chemotherapy continued, but after six more rounds there was no further progress.

Now nine months old, doctors decided to operate on Ava. They managed to remove the tumour from her chest, but parts remained in the abdomen and they discovered it had wrapped around her spine. Now in a highly dangerous position, the only option was to undergo another four rounds of chemotherapy.

Further scans revealed no progress in shrinking the tumour and Ava spent her first birthday in isolation. It was not how Ava’s parents imagined their first year as parents.

“The amazing thing to take out all of this is, is how the kids respond. She was just a happy, smiley, cute kid the whole way through.”

There were still signs of the tumour, so a second operation took place. The surgeon indicated a false positive. The tumour was no longer there. Another set of scans just before Christmas showed the same results and doctors were confident of ending the treatment. Three days before Christmas in 2011 treatment stopped and Ava was able to go home.

The next two years were still hard. The anxiety continued through regular check-ups and the fear of relapse. Tony said adjusting to everyday life was a significant challenge.

“You would think you would be relieved with that original all clear, but you still need to get the all-clear every three months. So you’re all clear, but you’re not. In the back of your mind you're always thinking what if.”

Today, Ava is a happy, healthy eight-year-old girl. She plays football, much to her father’s pride (or frustration), participates in scouts and knows all the Pokemon. She participates in drama and has been in a few productions.

Ava says when she grows up she wants to be an adventurer, like her hero Bindi Irwin. Her love of animals led to her volunteering at a pet shop, where each Friday she grooms the cats.

Tony was warned that the high doses of chemotherapy would affect Ava later in life, but so far, there have been no signs. He says they are thankful for the advancement in treatment, but also considers their family lucky that Ava responded to conventional treatment. Many children don’t.

“Twenty years ago treatment was very aggressive and left children with a lot of collateral damage. Through research, they understand more and more what’s going on and have a greater understanding of how to treat each child.”

Despite these advances, Neuroblastoma still claims the lives of more children under five than any other cancer. The survival rate for high-risk neuroblastoma, like that which Ava had, is just 50%. In addition, every child’s cancer is different and they will react differently to treatment. What works for some, won’t work for all.

About 20% of neuroblastomas have tumour cells that contain many, even hundreds of copies of the cancer gene (oncogene) MYCN, representing a powerful marker of aggressive, high-risk neuroblastoma.

Our research continues to look at ways to address these high-risk forms of neuroblastoma, developing new drug combinations, looking at drug resistance and tailoring treatments so that each child gets a unique treatment which gives them the greatest chance of survival.