‘Didn’t like having her hair washed’: Tiny clues before horror diagnosis
Long before the official diagnosis there were several blink-and-you’d-miss it moments that forecast just what was ahead for little Ava. This is her story.
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When Ava Pearce started Prep this year, hop, skippity, jumping down her street in excitement, the neighbours came out of their houses to cheer her on.
They stood behind their fences to wave and call out well wishes to the five year old as she passed, and why not?
The residents of this Coorparoo street on Brisbane’s southside would have given her a ticker-tape parade if they could.
Because while the school Ava attends is just down the road from where she lives, the Bluey fan, chocolate fiend, dress-up queen, and world champion popcorn eater had travelled an exceptionally long and perilous path to get there.
Ava has an ependymoma posterior fossa tumour wrapped around the brain stem in the middle of her brain. It is a particularly aggressive tumour, one that, despite this tiny girl’s giant efforts to vanquish it, keeps attempting to fell her. Or in Ava’s mother Amanda’s words “it just keeps knocking her down, and she just keeps getting up again”.
What that translates to (since her official diagnosis on Sunday, November 25, 2018) is a list of medical and surgical treatments so long and arduous, it seems remarkable that she has an atom of energy left, and yet.
Yet, here she is, clambering up on the couch at the Pearces’ home to sit close, smile widely and say “Hi, I’m Ava”, and then clamber back down when she has had enough of the adult conversation around her. “Bye,” she calls over her shoulder as she runs off to play with the family’s Boston terriers, Dexter and Maggie.
On the couch, Ava’s parents Amanda, 46, chief-of-staff at BHP, and Damien Pearce, 50, an IT consultant, are watching home movies; Ava as a baby, a toddler, on a swing, in a cubby, and later, zipping around the oncology ward on her tricycle, drip and feeding tube careering wildly behind her.
“There,” Amanda says, freezing a moment on screen. “Just there, did you see it?”
It is a blink-and-you’ll-miss-it moment of Ava as a toddler, playing happily, then putting her hand to the back of her neck.
She touches it for an instant, her smile vanishing, then returning just as quickly as it disappeared. It is a quicksilver hint that beneath her smiles, something was terribly wrong with the little girl dancing and giggling in the video.
Amanda Pearce smiles as an image of Ava as a baby plays on the screen. “Oh, I was so happy when we had Ava,” she says.
“I had her later in life, at 40, I was just thrilled when she arrived. Like a lot of other women, I had miscarriages, and I had come to believe I wouldn’t have children. I’d always wanted them, but I hadn’t met the right person, I was building a career and then, well then there she was, and she was absolutely perfect. I could hardly believe it.”
Ava was born on June 10, 2016, a sibling to Charles, 14, Freya, 12, and Brenna, 11, from Damien’s first marriage, and Amanda laughs, “spoiled rotten by them” from the moment she joined the family – and with gusto.
“Damien always says I gave birth to a toddler. She only crawled for three weeks, and then she was up on her feet. She was walking at nine months, we spent so much time looking for her because she was out the door exploring, rock collecting, you name it, she was into it. She was so happy and so healthy.”
And then, one day in August, 2018, not long after her second birthday, Ava began to vomit, and the Pearces began the rollercoaster ride they’ve been on ever since.
“When Ava first started vomiting, we were told, as we all are, as makes sense, that she had probably picked up a bug at daycare. So it would go away, and then she’d say ‘sore tummy’ and we’d take her to the doctor and give her Panadol. And then a week or so later she’d vomit again, and they’d say it could be the Ekka flu, everyone gets it around this time of year,” Amanda recounts.
But not everyone was at the Emergency Department at least once a week – as the Pearces were for about six weeks – while Ava was treated for possible stomach bugs, for dehydration, for all sorts of childhood ailments parents the world over know all too well.
“She would be fine for about a week, and then the vomiting would start again, so back we’d be at emergency, while they did ultrasounds and X-rays of her stomach; at one stage they thought she might have some sort of stomach superbug,” Damien says.
But just as the vomiting episodes subsided, Ava, then just two, began to tilt her head to one side and the Pearces – again like parents the world over – tried Nurofen, heat packs and massages to treat their daughter’s sore neck.
“The doctors said to alternate between Panadol and Nurofen, and that it should go away,” Damien recalls. It did, and for about another week all was well, until a phone call came from Ava’s daycare saying she was lethargic, unwell, and asking for her mother. “We took her home on Friday afternoon, and on Saturday she was fine, running around in her Emma Wiggle outfit.”
The Pearces were at home when Ava suddenly screamed, clutched the back of her head, wet her pants and collapsed on the floor.
There is a moment parents the world over know as well. The moment “before”. The one where the doctor takes a breath and you pray that whatever he or she says next will be good news; that there is nothing to worry about; that your child has a “bug”, or a virus, or some other minor ailment.
And in that “before” moment, as Amanda and Damien Pearce know all too well, you promise that you will do just about anything if only your child will be all right, even as all the signs – the social worker in the room, the doctor’s quiet voice and concerned face, the strange, clunky medical machinery you have not seen before – are telling you it isn’t.
The Pearce’s moment came on Sunday, November 25, 2018.
“The doctor said I am sorry to tell you, but the MRI has shown that Ava has a large brain tumour. And I just … everything went in slow motion and I went crazy. I was saying, ‘No, no not my baby’ and I was asking, ‘Is it because I had her at 40? Is it something I’ve done?’” Amanda recalls quietly. Such is the terror contained in such moments, when all that you know disappears, like a blink-and-you’ll-miss-it moment caught on video camera.
But, as hopeless as it felt at the time, from that moment on, Ava began to fight.
“She is our warrior princess,” Damien says. “She never, ever stops defying the odds.”
Following Ava’s diagnosis, doctors and specialists at the Queensland Children’s Hospital, including neurosurgeon Dr Gert Tollesson and oncologist Dr Rick Walker, outlined their treatment plan for Ava.
They explained that the tumour wrapped around Ava’s brain stem was about the size of a small orange.
Because of its size, it was blocking the flow of fluid around Ava’s brain and down her spine. The pain, Amanda says, must have been “excruciating”.
“That’s why she was vomiting, when the fluid built up, just the pressure of it, and that’s why she didn’t like getting her hair washed, because it was squashing the tumour, but she couldn’t tell us what was going on, except for those really quick moments when she touched the back of her neck.”
Ava underwent surgery on November 28, 2018 – three days after diagnosis. It was an eight-hour operation, as Ava’s parents, grandparents, aunts, daycare teachers, friends of the family and neighbours held their collective breath. Ava survived the operation but, following it, could not wake up properly.
For 10 days she lay in intensive care, unable to fully wake, swallow or talk. It was discovered the little girl had had a stroke while in surgery, and when she did fully wake, Ava was frightened, in nappies, unable to speak, and looking at everybody with big, bewildered brown eyes.
But after 10 days, Ava began to – as she would do again and again – “perk up”. And after just three and half weeks, she was on that tricycle, zooming around the wards and heading home – temporarily – for Christmas Day.
Five per cent. That’s how much of the tumour was left after the operation.
The surgeons and medical staff at the hospital had managed to safely remove 95 per cent of the tumour, a remarkable achievement, given its perilous location.
But the five per cent remaining – while it seems such a tiny fraction – would prove, and continues to do so, almost impossibly stubborn. Almost. Because, as Amanda and Damien Pearce note, their girl has never given up, and neither will they.
From January 4, 2019, Ava underwent seven weeks of chemotherapy.
From March 4, Ava was given a general anaesthetic every weekday for 33 days while she underwent radiation. From 7am to 1pm, she would lie dreaming, strapped to a table. A plastic mask lay moulded over her face, with nose and mouth holes cut out for breathing, and painted by the nurses to resemble Bluey, her favourite cartoon pal.
“They’d say, ‘OK Ava, let’s get your Bluey mask on’, and she loved that so it made what came next easier,” Amanda says.
“They also made her a Bluey advent calendar where she would put the sticker on Bluey to count down how many days of radiation she had left.”
After that treatment, Ava underwent scans every three months as the surgeons explained to the Pearces that despite all they had done, the tumour was highly aggressive, chemotherapy resistant and would likely grow back at some stage. It was, Damien says, the worst kind of waiting game.
At the end of August, the news was good, with no tumour growth.
At the end of November, the news was good, with no tumour growth.
So too, February, 2020, as the Pearces began to allow themselves to hope.
“We’d been told that if she could go 12 months without a recurrence, it would be a significantly positive diagnosis, so we were all pretty hopeful,” Amanda says.
They came so close to that milestone, but, at the end of June, 2020, the tumour had once again grown. Since then, Ava Pearce has indeed been “knocked down” by the tumour and she does indeed “keep getting up again”.
She underwent another seven-hour operation in July, 2020, but this time the surgery was unsuccessful. The team, led by Tollesson, tried everything they knew, every strategy they could, but they could not remove the new tumour – it was simply too risky. Now deemed inoperable, it was decided to try radiation and chemotherapy again.
“This time the radiation was for 30 days, combined with a year of chemotherapy from a trial out of Canada,” Amanda says.
“This time she was awake for the radiation because she was a bit older, and this time she wore a Coco, the pink poodle from Bluey, mask. She loves it.” Amanda smiles, “She loves everyone at the hospital, the staff are so very lovely to her.”
Everyone is very lovely to Ava Pearce because as anyone who knows her will tell you, she is lovely right back, keeping her sense of mischief and humour through her 12 month trial of chemotherapy, ending in November 2021.
The news was good then; the tumour’s growth had stopped, which meant Ava could do the one thing that was on her wish list (apart from meeting Bluey). She could start school with all the other Preppies in her neighbourhood.
On that day, when Ava walked to school, and her neighbours came out from behind their front doors to cheer her, she was, her parents say “just like all the other kids who were starting”. Excited, nervous, proud of her new uniform and school bag.
And she loves her new school. She loves playing with the other kids, learning all the colours in the rainbow, the dress-up corner, quiet time, noisy time, all the times she has there.
She knows, her mother says, that she has some “bad cells” inside her head, but she doesn’t know the full story. She doesn’t know what her family knows.
Her latest scan, in April this year, showed the tumour has grown again, by 15 per cent. This time around, the treatment options are limited. Her doctors are working around the clock trying to find the next option for her; the next trial, the next drug, perhaps even a cure.
“She is an amazing little girl,” Amanda says, “and we will never stop trying to help her live. If it’s not her week for a cure this week, then maybe it’s next week, or the one after that – and if her week doesn’t come, then maybe it’s someone else’s week. We have to keep trying because Ava isn’t alone in the fight against childhood brain cancer. There’s lots of Avas out there.”
Amanda Pearce is right, there are lots of Avas out there.
Brain cancer kills more children in Australia than any other disease – one Australian child dies from it every nine days.
The Children’s Hospital Foundation supports the hospital’s multimillion-dollar Children’s Brain Cancer Centre, the first paediatric brain cancer research centre in Australia. It has already achieved significant medical and surgical treatment breakthroughs.
Led by Dr Tim Hassall, from the Queensland Children’s Hospital, who is also one of Ava’s doctors, the centre is doggedly working towards improving diagnosis, pain management, drug delivery, outcomes, quality of life and ultimately a cure for children with brain cancer.
Friends of the Pearce family have launched a GoFundMe page to help with all the costs associated with Ava’s ongoing treatments and care. In the meantime, the Bluey fan, dress-up queen and world champion popcorn eater turned six years old yesterday.
And while she blew out the candles on her cake to make her (long list!) of wishes, her parents, family, friends and neighbours, of course, have only one.
That Ava Pearce keeps hop, skippity, jumping down her street, cheered on, every step of the way.
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