Just that kid who loves life
Family’s joy as Ivy rings cancer bell
After more than 800 days, five-year-old Ivy stands with her family and eyes the bell before her.
At first she is tentative – overwhelmed by the occasion – but then she breaks into a smile, curls her fingers around the rope and rings the golden bell with all her might.
Everyone who hears the sound echoing down the hall of the Royal Children’s Hospital Kookaburra ward immediately knows what it signals.
Ivy has beat her cancer.
When a 3-year-old Ivy was first diagnosed, it was the thought of this moment that kept her parents Nicole and Corey going.
She remembered the first time they thought “something’s not right here”.
“She woke up at about 10 o’clock at night with a really bad tummy ache,” she said.
“We had her in our bed and we’re trying to comfort her … and she was screaming so badly.”
Over the next 10 weeks they watched in despair as their daughter continued to suffer, “crawling to the toilet at night because her legs hurt so bad”, refusing to let her parents pick her up because it was too painful and, towards the end, losing weight.
Nicole said they went to emergency six times and attended countless GP appointments, only to be told their daughter was a “happy, healthy child”.
But they knew “something was wrong” – especially when she spent Christmas Day and New Year’s Eve sleeping on the couch instead of playing with her cousins.
Finally a doctor at Bendigo Hospital agreed, and spent a few days running tests before advising the family to head to the Royal Children’s.
As she drove to Melbourne that night – under strict instructions not to stop anywhere – Nicole Decker had no idea it would be the last time she saw her two sons Mason, now 9, and Jaiden, now 11, for almost four weeks.
When Ivy was officially diagnosed with Acute Lymphoblastic Leukaemia on January 6, Nicole said they “felt like the rug had just been pulled out from under us”.
Their youngest child began chemotherapy the next day.
Of the 200 hundred plus children at the Royal Children’s Hospital diagnosed with the same condition every year, Nicole said one or two would respond so well to chemotherapy they were considered to be in remission by day eight. Miraculously, the family later found out Ivy had been one of them.
But that didn’t mean her treatment was over and for more than two years little Ivy’s body was flushed with chemotherapy, to try to ensure cancer did not return.
It was brutal, and the steroid treatments left Ivy too weak to climb the “tiny little brick step” outside their house on her first day back home.
Nicole said they were terrified of catching Covid and spent a total of 10 months in Melbourne – required to be within 50km of the hospital during the intensive treatment stages.
“Being away from the kids and even our home was really traumatic,” she said.
Nicole said Ivy had to be at the emergency department within an hour of developing a fever or other complications.
“It was absolutely terrifying for me,” she said. “I felt like I needed a medical degree. How do I recognise the difference between her being tired from chemo versus her being tired because she needed a blood transfusion?”
But she said as hard it was to watch her daughter – who also developed extreme separation anxiety – suffer, her “extreme sensitivity” to leukaemia was a “blessing”.
“A lot of the kids don’t have those symptoms,” she said. “Ivy was really clever in telling us that something was wrong.”
In some ways, kids on the cancer ward age far beyond their years.
When they drove past the hospital one day, Ivy said she didn’t want to talk about that place. “She turned to me and said ‘Mum, I know I would have died if I didn’t go there,” Nicole said.
But Kookaburra children are still kids at heart.
“She felt like crap a lot of the time, but on the days when she was feeling well, you’d see her singing and dancing and smiling and drawing,” she said. “It was just absolutely unbelievable.
“She’s just that kid who loves life. She’s always happy.”
She started prep this year, where she has so many friends Nicole jokes it takes half an hour for her to leave the schoolyard.
One time, towards the end of treatment, Nicole said she apologised to her “superhero” about the needles and told Ivy she wished she could have them for her.
“She goes ‘oh Mum it’s all right, let’s just go and get on with it’,” she said. “I’ll go and have my medicine and it will all be okay.”
Ivy was right.
As Nicole said to her daughter, the hospital “looked after you and made you all better, and for that I’ll be forever grateful”.
“There were tough times yes, but I honestly do believe that I gave birth to my hero,” she said.
On the Saturday that Ivy had her last chemotherapy tablet, her parents hired out the local hall, strung up a pinata and invited all their family and friends.
At her party, Ivy didn’t talk about cancer.
She talked about the tooth fairy – grinning to reveal two-missing front teeth – and the purple cake she could not wait to cut into.
She swapped her sparkly sandals for runner and smiled as her cousin snapped a polaroid of her next to her “last day of chemo” sign.
The sign declared Ivy was brave, strong and beautiful in metallic gold letters, with ‘I kicked cancer’s butt!’ scrawled underneath for good measure.
Running around in her pink, glittery dress and surrounded by all the people who hold her dear, Ivy’s story was ending how the stories of all RCH children should – at home, with family and friends, celebrating the life ahead of her.
It was this moment in time, this snapshot of a giggling child surrounded by a community that pulsed with love and laughter, that touched on the importance of the Royal Children’s Hospital more than any words could ever do justice.
And as Victorians continue to throw their support behind the Good Friday Appeal, the more kids like Ivy will get to throw parties like this.
Originally published in the Herald Sun, Friday, 7th, April, 2023
Words: Sarah Booth
Pictures: Mark Stewart
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