Mum’s horror call 10 minutes after doctor’s visit
Before she noticed a rash on the body of her 18-month-old daughter, Kirsty O'Brien said she "didn't even realise" that kids could get cancer.
"I'd had four children - Ava was my youngest - and they were all so healthy. We were never even at the doctors," Ms O'Brien told news.com.au.
"And the bubble I was living in, I didn't even realise that kids got cancer. That was something I thought happened to people who were older and didn't look after themselves. I just could not fathom how it could happen to a child who had been healthy up until that point - especially with no precursor of them even being unwell. It was just something I couldn't believe."
At first, she was told the rash was "something viral and not to worry" - but two days later, when Ava woke up from her nap, Ms O'Brien said she was "just deathly pale white and sweating, with these two golf ball-sized lumps on her neck, underneath her ears on either side".
"I took her straight up to my local medical centre and they thought it was mumps, and I said, 'Nope, no way, please take a blood test'. They did, and by the time I'd driven home - which is about 10 minutes - they called and said, 'Come straight back, pack a bag'."
It was then that Ms O'Brien was told her daughter had acute lymphoblastic leukaemia.
The family were assigned a team of doctors at Randwick Children's Hospital, a port was placed underneath Ava's skin, and she began chemotherapy a day later.
"Ava did everything that you were meant to do, she went into remission after the first month, she had nine months of what they call intense treatment and then at the end of that, she did 18 months of oral chemo at home," she said.
On the eve of a regular check-up - seven months after Ava, then four, stopped treatment - Ms O'Brien was getting her out of the bath when she noticed "that same rash, just a really small tiny one, on her hip".
"And I showed my husband and he was like, 'Don't worry about it, it's nothing, you know you're going for a check-up tomorrow', because I was always looking for something to go wrong," she said.
"And then we went the next day and you have your bloods in the morning, and then they see you in the afternoon and look at the bloods and they just kept us waiting for so long. And finally they called us in and they said, 'There's a problem with the bloods and it can only mean one thing: that she's relapsed'. And I just could not believe it."
Following her initial diagnosis, Ava's treatment had been "textbook". But from the minute they were told she'd relapsed, Ms O'Brien said "our whole life just changed".
"It was horrible. It was the worst thing I've ever been through, and I know that she's ever been through," she said.
"The chemo that they started her on was so intense that she didn't walk, talk, smile, laugh - some days she wouldn't even look at me. She just was so sick and just not herself, and she was like that for 35 days."
When, on December 1, Ava became allergic to one of the drugs, developed pancreatitis and was admitted to the ICU, Ms O'Brien said it marked a "turning point" for their family, having realised "how serious this was going to be" as they waited on a bone-marrow transplant donor for Ava.
Not long after, they were told a matched unknown donor from overseas had been found, and "here we are, six years post transplant now".
"The transplant itself is non-invasive - so a little bit of a let-down in terms of thinking, 'Oh, is that it?' - but it's the treatment that leads up to it. And then, you just wait and slowly, each day after day, you see her bloods change and you can see her starting to get her health back, and her body starting to work normally," Ms O'Brien said.
"It was just such a miraculous thing where you see the body learn how to work for itself again."
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Once the fear of Ava's cancer returning started to subside, Ms O'Brien said her family decided they needed to "give back", becoming involved with the Children's Cancer Institute.
"We sort of thought, 'OK, well we've been given this, we need to try to give back'. And we thought it was a really important way of empowering Ava to own her story, rather than feeling like she was a victim or that it was something that we didn't want to talk about - so that's how we became aligned with them," she explained.
"There's so many charities that support kids with cancer, but we just picked this one because they focus on the research and they focus on finding a cure and I think that's really important. So this year it's about Ava getting herself out there and really shining the light for them."
Looking back on Ava's diagnosis, Ms O'Brien said it's "surreal" to see her daughter, now 11, living a healthy, normal life.
"After Ava's transplant, in the ward there's a whole wall and it's of all the kids that have had transplants and where they are now as adults, and it tells their little story and has pictures," she said.
"And every night I'd walk out and look at the wall and think, 'That's going to be Ava one day, she's going to come through it and her picture will be up here, and we can talk about her having a great life'. And when we were in it, the treatment was just so debilitating and just took away all of her vibrancy, you can't imagine - you think, 'Is this worth it? Is what I'm doing going to give her an actual great life?'
"And to see this is just always that dream that just kept us going. Every day we're so grateful, and it doesn't ever not pass my husband's and my mind every morning that we're so grateful Ava's health today. This is just the best outcome ever."
Ava is an ambassador for the Children's Cancer Institute's CEO Dare to Cure challenge, which takes place on Friday, October 23, and dares CEOs to take on challenges like bathing with snakes and walking on fire and glass to raise money for children's cancer research.
Originally published as Mum's horror call 10 minutes after doctor's visit