One more day at home could have killed Nicole's toddler: 'You could see her bones'

If Nicole Jamieson had waited one more day to take her daughter Ivy Hyde to hospital, she probably would have died ¨C but doctors told the worried mum it was just a cold.

Hyde seemed like a perfectly healthy little girl until she was three years old and a call from daycare staff out of the blue set off alarm bells in Jamieson's mind.

"The daycare rang me and said 'Ivy's not her normal bubbly self. She's just really tired. She just wants to lay down and fall asleep all the time'," Jamieson tells 9Honey.

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They went straight to the doctor the next day, but he brushed Hyde's peculiar symptoms off quickly. He told Jamieson it was a common cold or flu and to give Hyde some Panadol.

"She went back to daycare and she was fine for a day or two. Then they rang me again," the Central Coast, NSW mum says.

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She rushed her daughter to the doctor's office again and was told that it could be whooping cough. They ran a few tests on Hyde at the local hospital but they all came back negative.

Once again, mother and daughter were sent home even though Hyde's health wasn't improving. In fact, it was getting worse.

"We ended up going to the hospital one night because I thought she was having an asthma attack," Jamieson says.

"They said 'it's just a cold or an infection or something like that. Just give her Panadol, she'll be okay'."

Over the next seven weeks, Jamieson took Hyde to three different doctors looking for answers. Every time she was told it was nothing to worry about and sent home.?

It was only when she took Hyde to a local GP after her belly became unusually bloated that someone realised something was terribly wrong with the little girl.

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"He knew instantly what was wrong with her. He just looked at her and said, 'she's anaemic. We need to get her blood checked and she has her liver scanned'," Jamieson says.

Urged to get the tests done as soon as possible, Jamieson drove 45 minutes to the only clinic that had an appointment available. That same day, she got the call that changed her life.

"That same doctor rang and said, 'we've got the results, you need to take Hyde to hospital. They're waiting for you. You just need to go'," she says.

"I said to him, 'what is going on? I need to know because I need to prepare myself'. And he said, 'I think Ivy has leukaemia'."

Those five words floored her. At the time Hyde was sitting slumped in a chair in front of the TV after days of refusing to eat or drink because she was so ill.

"All I could hear was Ivy in the background saying, 'mummy, it's gonna be okay. It's gonna be okay'," she says.

That night Jamieson threw a bag together and raced her baby girl to John Hunter Children's Hospital, where further tests confirmed Hyde had advanced acute lymphoblastic leukaemia.

"Ivy's illness was one of the worst that they had seen. If we had left one more day without going to John Hunter hospital, she probably wouldn't have been here today," Jamieson says.

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The very next day Hyde had to undergo a lumbar puncture before beginning treatment, which would involve chemotherapy.?

Usually the puncture lasts 45 minutes, but hers took close to three hours because she went into cardiac arrest three times. Jamieson had no clue until after the procedure.

"I understand why they didn't tell us, because we were so overwhelmed with everything that was going on. I think I just would've been more broken than what I was," she admits.

Soon after, three-year-old Hyde began chemotherapy to save her life but the treatment itself wreaked havoc on her tiny body and she began vomiting uncontrollably.

"She just couldn't physically eat. Her stomach just couldn't take it. Every time she tried, she would just vomit," Jamieson says.?

Eventually she had to have a feeding tube inserted to keep her nourished, but even then there were complications.?

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After a short stint at home, Hyde's health took another turn for the worst and Jamieson rushed her back to hospital for her toughest battle yet.

"She was in the ICU for 14 days. She was just this little bundle of nothing on all these medications for about nine days because her body just shut down," she says.

"She was very, very tiny. You could see her bones¡­ they had to stop treatment because she was on so many different medications. Her body needed to fix itself before anything else."

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One of Hyde's lungs had collapsed and her liver was dangerously close to failing. By that point she weighed just 10 kilos and Jamieson feared that her little girl may not survive.

Thankfully she pulled through, but for close to two years Hyde and her family's lives revolved around hospital trips and chemotherapy sessions to try to save her.

Hyde finally finished treatment in January, 2018, more than two years after her initial diagnosis.

Though she was declared cancer-free soon after, Hyde had to re-learn how to eat after two years on a feeding tube and teach herself to walk again, having lost all her muscle tone.

She also has epilepsy and is on the autism spectrum, which can complicate recovery, and even now at 10-years-old she tires much quicker than other children her age.

Seeing her daughter survive such a devastating illness has made Jamieson more protective of her, especially when it comes to getting sick.

"With everything that's happened with COVID-19, I keep her close. I don't want her to be walking around and bumping into people," she says.?

At the shops she often has Hyde sit in the trolley just to be safe but total strangers go out of their way to tell her off for it, saying Hyde's 'too old' for that.

"It's about keeping her safe. People just comment on things that they don't really think about," Jamieson says.

"That's why I wanted to work with the Children's Cancer Institute, I want people to be aware of what happens to so many children. Because when Ivy was diagnosed, I had no idea."

The family are sharing their experience as ambassadors for the institute's 86K For a Cure campaign, in support of the 86 children diagnosed with cancer each month in Australia.?

It's estimated that close to 90 children lost their lives to cancer in 2022 alone.

"It's heartbreaking for all the families that have lost children because of their cancer, but I'm kind of grateful that I have my child," Jamieson says.?

"That sounds selfish but we're lucky that she did survive."

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Not only will the money help fund medical research into finding better treatments and ultimately a cure, the campaign will also raise awareness of what kids like Hyde go through, even after treatment is over.

"I don't want her to be pushed down by the negatives of the world. I just want her to become the person that she was meant to be. No matter what it is," Jamieson says.

"Nothing's going to stop her. Even though she has developmental delays, even though she has autism, even though she has epilepsy, she had cancer and she's beat that."

She's urging Aussies to get on board by taking on the challenge of conquering 86km of walking, running or some other movement to create a better future for kids with cancer.

Jamieson also hopes that sharing Hyde's story can help others be more educated, understanding and compassionate towards kids who are battling or have battled cancer.

Children's Cancer Institute's 86K For a Cure campaign runs through the month of March and raises money to help fund medical research into finding better treatments and a cure. More info here.

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