Family’s hope for a cure as brave Ava battles brain cancer

·Lifestyle Reporter
·6-min read

When the Pearce family received two-year-old Ava’s diagnosis of Posterior Fossa Ependymoma brain cancer in November 2018, they knew their lives had changed forever.

After months of mystery symptoms (including vomiting and head tilting), and numerous trips to emergency, doctor’s were still baffled. They suggested Ava was suffering from gastro or a pulled neck muscle.

Ava was diagnosed with brain cancer
Ava was diagnosed with Posterior Fossa Ependymoma brain cancer in November 2018 Photos: Supplied

However, Ava’s symptoms continued until one day, as she danced to Emma Wiggle, she lost control of her bladder and started screaming.

Speaking with Yahoo Lifestyle, Ava's mum Amanda remembers saying ‘we are going back to the hospital and we’re not leaving until we get an answer on exactly what is wrong.’

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An emergency MRI finally discovered the terrifying cause of Ava’s symptoms.

A tumour the size of a small orange was growing inside her brain, and had attached itself to her brain stem. 

It had been growing for at least 18 months, and it’s possible that Ava was even born with this tumour.

Ava during her first round of treatment for brain cancer.
Ava during her first round of treatment for brain cancer. Photo:Supplied/ Pearce family

Three brain surgeries and 63 rounds of radiation

“We were suddenly thrust into the world of oncology, hospitals, neurosurgeons. Neither myself or my husband had ever really been sick growing up and so it was a whole new world for us to navigate and to try to explain to Ava’s siblings who were only seven, eight and ten at the time," Amanda tells us.

What followed Ava’s diagnosis was a whirlwind of sleeping in hospitals, and an emergency brain surgery which was able to remove 95 per cent of Ava’s tumour.

“Unfortunately some of the tumour was attached to her brain stem and so it was unable to be removed. We hoped that chemotherapy and radiation would tackle it and get it into remission," her mum explains.

"At this point we had no idea that brain cancer is the leading cause of death for children in Australia, or just how aggressive Ava’s tumour was."

Unfortunately the tumour continued to grow, requiring further surgery and thirty-three rounds of radiation.

Then some good news, the tumour had stabilised and the family moved into watch and wait mode, with Ava attending scans every three months.

Ava has had 3 brain surgeries
All up Ava has had 3 brain surgeries and 63 rounds of radiation. Photo: Supplied/Pearce family

Doctors advised if the tumour was stable for twelve months, Ava’s prognosis would improve, however if it started to grow again within twelve months there was a lower chance of her reaching seven years of age.

As they reached the eleven-month mark, scans showed the devastating reality of further growth.

After another surgery showed that the tumour was completely attached to the brain stem, Ava went through further radiation treatment and a chemotherapy trial.

Support from the Starlight Foundation

“As we went through daily general anaesthetics and radiation treatments for Ava, we only got through with Starlight Foundation support and the support from the hospital," Amanda says.

Pearce family with starlight foundation
"We only got through with Starlight Foundation support" Photo: Supplied/ Pearce family

“The Starlight Room at the hospital, their Captain’s, and the bedside and outpatient support helped us so much. To know that the kids were having some fun and being able to play and do ‘normal kid’ stuff, whilst we could also step away and have a cup of coffee and catch our thoughts was such a great help.

“They made the experience so enjoyable for Ava that the mornings that we’ve had appointments, she's up and asking if we can go early to the Starlight lounge. All of the kids have loved getting to play Mario Kart, and Ava has so many toys from getting to choose a toy every visit from the prize trolley.”

On top of that, Ava’s Starlight Wish was to get a puppy, and so Dexter the Boston Terrier joined their family.

Ava with her Starlight Wish puppy, Dexter
Ava with her Starlight Wish puppy, Dexter. Photo: Supplied/Pearce family

Brain cancer is difficult to treat

The brain has a natural protection system designed to repel toxins. Treating brain cancer with something like chemotherapy is very difficult and many brain cancers are chemo-resistant.

As such, Ava will not be able to receive any further treatment without risking her quality of life. 

Amanda explained that the treatment so far has already caused deafness in one ear.

“As a family, Ava’s quality of life is our main priority. It’s about finding the balance and also living every day enjoying the time that we have together," she adds.

Ava’s tumour has stabilised, and she has been enjoying swimming and kindergarten, and is getting ready to start prep school next year.

Amanda said their oncologist has been left amazed at Ava’s energy and capacity whilst living with terminal cancer.

What’s next?

Ava’s next brain scan is coming up in early November, as she nears the three year anniversary of her initial diagnosis.

Her family don’t know what the future holds, or how much time they have left with Ava, so they make it a practise to embrace every moment together to the fullest.

“We go all out on celebrations - birthdays are an extravaganza, we just celebrated Halloween and we’re looking forward to Christmas," Amanda says.

Ava and Amanda meeting a dolphin
Ava and Amanda meeting a dolphin and embracing every moment together. Photo: Supplied/Pearce family

Advice to other families facing childhood brain cancer

“The best advice we were given along our journey was to take ten minutes at a time. We don’t know what’s going to happen down the road and it can be overwhelming to imagine, so we try to just focus on the next ten minutes, and then the next after that," Amanda says.

"Brain cancer is the biggest killer of kids, yet receives less funding than other more treatable forms of cancer. As a family, we are passionate about advocating for brain cancer research, to know that we’ve left no stone unturned in trying to find a cure, if not for Ava then maybe for other families in the future not to have to go through what we’re going through.

“We never thought this would happen to us, and then it did...and you can’t get out...as a parent, you have to find a way to keep going and it’s thanks to the Starlight Foundation and ongoing brain cancer research that we’ve been able to find ways to continue to move forward.

“It gives us hope - you never know - next week we might be told - it’s here - a new trial - a cure. In the meantime, we’re focused on keeping Ava well and hope a cure can happen within her lifetime.

Ava is an ambassador for Starlight Children's Foundation's Go Big campaign. From 15th November - 28th November, Starlight is aiming to raise $250,000 over the 14 day challenge to deliver happiness to 6,400 sick kids. Sign up today at https://gobigchallenge.org.au/

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