Ava's story

A tragic experience for this Defence family revealed the desperate need for greater scientific knowledge around childhood brain cancer.

No treatment and a zero survival rate. How can this be the case?

Vanessa Antalan is asking the question after losing her beloved daughter Ava in October last year. Ava was just five.

“I don’t understand how this worst case even exists,” Vanessa, a Wagga Wagga-based HRM professional in the Royal Australian Air Force, her voice still torn by grief.

“How does that even happen? How do we live in a place where there is no treatment, no hope and no chance when a child has a particular brain cancer? It’s 2021!”

“And it’s such a horrible disease. With the radiation treatment, after about two weeks Ava could no longer walk. Then she lost the ability to speak properly. It’s as if the child becomes trapped in their own, little body – they can’t swallow, can’t talk, can’t eat, can’t move.”

In the space of one week, the family’s life was turned inside out.

Vanessa’s husband LeeVan, who also serves in the Air Force, and Ava’s little sister Amelie, were out for dinner with the family one Sunday night in 2019 when Ava, who’d just had an ice cream and was playing with friends, vomited. The doctor suggested it was a bug of some sort.

A few days later at day-care, Ava fell asleep just before lunch was served. By the next Saturday, Ava was feeling nauseous and wobbly on her feet. On Sunday, Vanessa took Ava to the local hospital, where she was sent for a scan that revealed a tumour the size of an apple on Ava’s brainstem.

Mum and daughter were bundled onto an emergency flight to Melbourne. The nurse who saw them from the hospital, Vanessa recalls, waved them off with tears in her eyes.

Two days later, in Melbourne, Vanessa and LeeVan were told Ava had a highly aggressive tumour known as diffuse intrinsic pontine gliomas (DIPG). It is a condition, the medical experts told them, that has no treatment and a zero survival rate.

Ava had no chance. She was going to die.

Find out more this May: Brain Cancer Awarness Month.

Finding focus in fundraising

Instead of waiting for their daughter’s life to end, Vanessa and LeeVan bought a camper trailer and travelled to Tasmania. Their goal was to offer Ava as much adventure as possible in the time she had left.

Between hospital stays, they also took the girls on a trip to California, fortunately prior to the pandemic.

“Ava’s favourite animal was the sea otter, and there are no sea otters in Australia,” Vanessa says. “She saw sea otters and humpback whales. We contacted the Monterey Bay Aquarium and they organised for us to be able to feed them.”

The family also made a decision to play an active role in fundraising for Pirate Day 2020, a day of dressing up and raising awareness and funds for childhood brain cancer research.

“When all of this happened with Ava, charities were suddenly giving to our family,” Vanessa says. “Our situation was so surreal and terrifying. People felt they should give to us. And we realised it can happen to anybody – anybody can be told their child is going to die, and there’s nothing that can be done to save them.”

Vanessa and LeeVan were supported by their friends and family across Australia. Events were held at their childcare centre and at the Air Force base, raising over $16,000 to fund research into children’s brain cancer.

“It helped us to focus on something,” Vanessa says. “It helped us find meaning in a time of madness. Fundraising gave us an outlet.”

Read more: Ava's Pirate Day

This can’t all be for nothing

Two years ago, if anybody had asked her about her family’s life, Vanessa would have said everything was perfect.

“We didn't even have a GP,” she says. “The girls never needed the doctor for anything other than vaccines. Then the rug was ripped out from under us.”

“Honestly, I still feel like I’m in a nightmare that hasn’t ended. Three months ago, we had a baby. Of course, it’s beautiful to have this amazing new life in the world, but all I can think is that Ava missed out by just three months on meeting her sister.”

“And I’m so scared. I watch my kids like a hawk. What if it’s genetic? Science doesn’t know enough to treat it, so how would we know? What if there’s a gene we’ve given to our new baby? It’s like living in constant terror.”

Vanessa takes strength from the powerful relationship she has with her husband, the special moments she shares with her children and the inspirational memories she has of Ava.

“She was such a special girl,” Vanessa says. “I know everybody says that about their kids, but she was kind. She was the kid who always wanted to share. She was clever. I feel if she had the chance, she would have done something amazing with her life. So this can’t all be for nothing.”