Ava's Story

"In the back of your mind, you're always thinking: what if?"

Ava was just 6 months old when she was diagnosed with neuroblastoma. After two operations and round after round of chemotherapy, she was finally declared cancer free. Today, she is a happy and healthy ten-year-old, with two very grateful parents.

Pre-diagnosis

As their daughter Ava turned six months old, Tony and Jen felt like they were just getting used to being parents. They had a bright and bubbly baby girl, and everything was going fine. But one Friday night, Tony was at a friend’s house when he received a call from Jen to say that something was wrong.

Symptoms

When Tony got home, the found Ava was choking, her eyes were rolling back in her head and she couldn’t breathe. They rushed her straight to hospital.

An X-ray revealed that one of Ava’s lungs had collapsed and she had fluid on both lungs. The next morning, a CT scan showed a mass in her chest and abdomen. Tony and Jen weren’t sure what was happening. “I was looking down at Ava in her cot, tubes everywhere, and thinking: What does all this mean?” says Tony.


I was looking down at her in cot, tubes everywhere, thinking: What does all this mean?

- Tony, Ava's dad

Diagnosis

At the hospital, the medical team told Tony and Jen that the mass in Ava’s body was likely to be neuroblastoma, the most common solid tumour found in babies. An anxious day followed, as they stayed by Ava’s bedside waiting for the results of her biopsy.

The news was bad: Ava had stage 4 neuroblastoma that had spread to her bones. But there was some good news too. There was no sign of the MYCN gene, which makes neuroblastoma grow very aggressively in some children. Tony says he had mixed feelings.

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

Treatment

Ava’s tumour was too large to operate on, so high-dose chemotherapy began immediately. The family settled into a new routine: one week of chemotherapy, two weeks off. All Tony and Jen could do was wait, and trust that the treatment was working for their precious daughter.

After the first round of chemotherapy, a scan revealed that the tumour had reduced in size by 50%. Chemotherapy continued, but after six more rounds, there was no further progress.

With Ava now nine months old, the doctors decided to operate. While they managed to remove the tumour from her chest, they found it had wrapped around her spine and it could not be completely removed from her abdomen.

Ava spent her first birthday in isolation. It was not how Ava’s parents imagined their first year as parents would be. “The amazing thing was how Ava responded to all this,” Tony says. “She was just a happy, smiley, cute kid the whole way through”.


Ava was just a happy, smiley, cute kid the whole way through.

- Tony, Ava's dad

Recovery

After four more rounds of chemotherapy and a second operation, the tumour seemed to have gone.. Three days before Christmas 2011, treatment stopped, and Ava was able to go home.

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

“You’d think you would be relieved, but you still need to get the all-clear every three months,” he explains. “In the back of your mind you're always thinking: What if?”

Today

Today, Ava is a happy and healthy ten-year-old girl. She loves drama, plays football, participates in Scouts, and knows all the Pokemon. Every Friday, she volunteers at a pet shop where she grooms the cats. Ava says when she grows up she wants to be an adventurer, like her hero Bindi Irwin.

Tony and Jen were warned that the high doses of chemotherapy would affect Ava later in life, but so far, there have been no signs. They consider themselves very lucky that Ava responded to conventional treatment, and hope she stays healthy as time goes on.

“Twenty years ago, treatment was very aggressive and left children with a lot of collateral damage. Through research, they now have a greater understanding of how to treat each child”, says Tony.

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