‘When I heard Clara’s blood test results, I went really cold all over. I knew it was bad.’

clara ansley

Earlier this year, when one-year-old Clara was acting crankier than usual her parents Bridie and Stephen Ansley didn’t think too much of it.

She’d just started daycare, and her teeth were beginning to nudge through. Surely, they thought, her short temper was just normal toddler behaviour.

Little did they know, there was a terrible pain coursing through her bones.

Shortly after, in late February, Clara’s temperature rocketed past 40 degrees and her tiny body was shaking uncontrollably. Her parents rushed her to the emergency room at Gold Coast Hospital.

That night, doctors ran a blood test and delivered the results: Her white blood cell count was exceedingly high.

Upon hearing this, her father Stephen, 40, froze on the spot. As a paediatric trainee with nine years of experience working as a doctor, he understood the significance.

“It didn’t mean anything to my wife but when I heard Clara’s white blood cell count, I went really cold all over. I knew it was bad. I’d only ever heard of that number in kids with leukaemia,” he told Mamamia.

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clara ansley
The Ansley family: Stephen, Finn, Clara and Bridie. Image: Supplied.

But still, he said the doctor assured them Clara just had some kind of virus. Stephen was desperate to believe this was true.

"People kept telling us all through the night it was probably a virus, so I convinced myself it was," he said.

The next morning, on February 28, Clara received a diagnosis that turned "everything upside down": she had a very rare strain of T-cell leukaemia, one that generally carries a devastating prognosis.

"It was horrendous, we couldn't believe it. She was a generally happy and healthy toddler who had never been sick in her life."

Clara, accompanied by her parents and four-year-old brother Finn, was immediately rushed to Brisbane's Lady Cilento Children's Hospital to begin an intense course of chemotherapy and steroids to fight the life-threatening cancer.

Over the following few weeks, Stephen said he watched as his daughter became like a 15kg newborn who needed to be carried around and pushed in a pram.

"She doesn't roll, she doesn't sit.... It's a combination of the steroids wasting her muscles away and the chemotherapy affecting her nerves," he said.

"She's too young to have any understanding of what's going on, it's so heartbreaking to see. She's so wary of anyone coming into the room, wondering are they going to poke and prod her and do something awful."

clara ansley
Clara, one, with her four-year-old brother, Finn. Image: Supplied.

Most crushing of all has has been to see locks of Clara's blonde hair fall away in clumps

"It's just horrible to watch. Giving Clara a shower last night, I was washing her hair and it was falling out everywhere. It's so hard when it's your little girl."

Stephen said he and his wife were exhausted, struggling to adjust to their new reality. Clara needed their love and care 24 hours a day, but they still had a four-year-old son who needed their attention.

Making matters even harder is the fact the Ansleys are from New Zealand. Stephen and Bridie moved to Australia seven years ago after the 2011 earthquake rocked Christchurch. They don't have family support here, and financially, Clara's illness has put them in strife.

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The rights of New Zealanders living in Australia have long been a point of contention, with tax-paying New Zealand citizens living in Australia given far fewer rights than Australians living in New Zealand.

Despite having been born in Australia, Clara will not be deemed a citizen until she reaches age 10. Meanwhile, the family's permanent residency application has not yet been approved. The red tape is preventing Clara from accessing a health care card to reduce the cost of treatments, and her parents are not being given a carer's allowance.

Stephen said it all seemed so "dreadfully unfair to a sick one-year-old", the victim of a flawed system.

clara ansley
Clara in hospital. Image: Supplied.

"She's caught in the gap where she doesn't have access to fallback measures," he said.

"We understand the rules, but it is such a shame that Clara, born in Australia, and set to become an Australian citizen by default at 10 years of age, should be so easily written off in illness in those in-between years."

Stephen has had to put his hospital job on the Gold Coast on hold, without any paid leave remaining, while they relocate temporarily to Brisbane.

Despite being grateful for the help from the Leukaemia Foundation, he estimated his family was looking at medical costs of more than $20,000 over two years - and that didn't include him being out of work nor the mortgage they still had to pay on their Gold Coast home.

LISTEN: Sue Channon talks about what it is like to be a parent of a very sick child and what people can do to make life a little bit better.

On Thursday, March 29, Stephen and Bridie received another devastating blow: an analysis of Clara's bone marrow found she had hardly responded to the chemotherapy.

Clara is now preparing to begin even higher doses of chemotherapy in the lead-up to a bone marrow transplant - a major procedure that is normally a last-resort treatment. It will put Clara in strict isolation and away from her older brother due to risks of infection from children under age eight.

"It is frightening to have it as our only option right at the start. It's perhaps even more frightening to think that if she responds as poorly to this next course of chemotherapy as she has to the last, a transplant may not even be an option."

To help cover their medical costs, Stephen launched a GoFundMe campaign with the goal of raising $50,000.

"She is my special little girl; the one who often gets weak at the knees and drops to the floor overwhelmed when she sees me...  she has to make it," he said.

He also had a message for other parents.

"Often parents have a sixth sense that something is going on with their kids that doctors might not pick up on. You've got to be an advocate for your child. If you think there's something more happening, don't be afraid to push or get a second opinion."

To donate to Clara's cause, click here.

Video by MWN

 

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