Children's Cancer Institute

We have to do better. Not just for kids, but for families.

- Melissa, Chloe's Mum

Chloe’s family knew nothing of cancer in children until their precious little girl was diagnosed with acute myeloid leukaemia. Suddenly they were thrown into a world they didn’t want to be in, and had no choice about.

Pre-diagnosis

Part of a close-knit family, Chloe was a happy 9 year-old who loved her gymnastics and was thoroughly enjoying school, especially maths.

‘Chloe just does her own thing,’ says her mum, Melissa. ‘She’s her, and she doesn't want to be anybody else.’

A doting big sister, she especially loved spending time with her little brother, Flynn. Melissa says that, while he wasn’t the little sister Chloe had hoped for, they are ‘thick as thieves.’

Symptoms

The whole family had had a cold, but while everybody else’s eventually cleared up, Chloe’s lingered. After she seemed to get better then regressed again, Melissa took her to the GP, who thought Chloe had just been unlucky to get one virus after another.

Melissa didn’t think anything was out of the ordinary. It was COVID times, and her own childhood had been full of infections.

However, after Melissa’s mum commented that Chloe didn’t look well, Melissa started watching her more closely. When she then spiked a temperature, Luke, Chloe’s dad, decided to take her back to the GP.

Diagnosis

‘Luke rang me from the doctor’s and told me they’d said Chloe was dehydrated and it was best to take her to the Children’s Hospital where they could do some blood tests and see what was going on,’ recalls Melissa.

‘A couple of hours later, he called me again. I could hear him sobbing on the phone. I said, “It’s cancer, isn’t it?” And he said, “Yes, she’s got leukaemia. Acute myeloid leukaemia.” My knees just gave way.’

Melissa says that while she’s not sure why she said what she did, she’d had a very strange experience the night before. When she gone to check on Chloe in bed, she’d found her sleeping with her eyes open.

‘I remember having a dream that night and seeing the Grim Reaper. I’m not big on any of that sort of stuff, but something inside of me was like, “Something’s not right.”’

I said to him, “It’s cancer, isn’t it?

- Melissa, Chloe's Mum

A new world

With Melissa needing to look after Flynn and strict COVID rules in place, she wasn’t able to come into the hospital to see Chloe until midday the next day. When she did come in, she says she found herself in a whole new world.

‘I was talking to parents in the kitchen and someone asked me, “What does your daughter have?” ‘I said, “Leukaemia. Acute myeloid leukaemia.” And they asked, “Is that the good one or the bad one?”

And I’m thinking, what the **** is a good cancer? No cancer is a good cancer. I later found out we had the bad one.’ Because of COVID restrictions, Luke and Melissa barely spent any time together, swapping over as Chloe’s carers every 24 hours.

‘We’d see each other for an hour a day,’ says Melissa. ‘I was in a world that I didn't want to be in and that I didn't understand, and I felt so alone.’ ‘I look back now and I don't know how we got through it. But we had no choice.’

I was in a world that I didn't want to be in and that I didn't understand, and I felt so alone.

- Melissa, Chloe's Mum

Treatment

Immediately after Chloe’s leukaemia had been diagnosed, she was taken to the intensive care unit to start chemotherapy. After 10 days, she was moved to the oncology ward.

‘Our treatment plan was to be four rounds of chemo,’ Melissa explains. ‘We were adjusting to our new normal, then Chloe’s doctor walked in and dropped the bombshell that the type of cancer that Chloe had was high-risk, and she would need a bone marrow transplant.’

With no closer matched bone marrow donor found, Melissa stepped in to give Chloe her own stem cells. Thankfully, the procedure went better than expected.

‘Chloe breezed through it and we were out in 35 days,’ she says. ‘She was just a champ.’

Relapse

With Chloe back home, back into online schooling, and with visible rosiness in her cheeks, Melissa says life felt good.

‘The night before Chloe’s one-year anniversary, we watched a movie to celebrate. Then the next Friday, Luke took her in for a checkup. When he got home, he walked through the door and I could hear him slam the keys in the drawer. He looked at me and I knew. I just knew.’

‘He said to Chloe, "The doctor told me that unfortunately, your cancer's back." And we all just burst into tears. Flynn was running around going, "What's wrong? What's wrong?"

I just kept saying to Chloe, "You know what, Chloe? We've done it before. We'll do it again. We're not going to give up."

More Treatment

The next week, they were back in hospital for more treatment, with two more rounds of chemotherapy and a second transplant planned. But during the first round of chemo, Chloe got so sick she ended up back in intensive care. At that point, it was decided to bring the transplant forward.

After a precious three weeks together at home, Chloe went in for her second transplant, this time with Luke as her donor.

‘It was different this time,’ Melissa says. ‘It was much harsher, with radiation. Chloe ended up with really bad mucositis and couldn't eat or drink for a month. She was struggling with the pain.’

I was worried that she wasn’t going to come back and be that girl that we’d always had.

- Melissa, Chloe's Mum

‘Chloe was on the heavy meds and she would just sleep most of the day. And I remember I'd call Luke and I'd be crying because this isn't my girl. I was worried that she wasn’t going to come back and be that girl that we’d always had.’

Melissa was also worried about the lifelong implications from the treatment Chloe was having. ‘I was thinking, what quality of life will she have after? It was tough.’

The turning point

A strong believer in the connection between mental and physical health, Melissa wondered if a shift in Chloe’s mindset could possibly turn the situation around.

‘We said to her, "Hey, it's dad's birthday in a week and a half or so, what do you reckon? Do you think we could go home on dad's birthday?" And all of a sudden, she's like, "Okay.” Then everything just turned around. Two weeks later, we were packing our bags to leave hospital.’

Today

Chloe returned home in March 2024. She is no longer on treatment, other than a drug to help with graft versus host disease and some anti-nausea medications.

She has a nasal tube to help feed her while she builds her strength back up, and every week, she returns to the hospital for a checkup and to have the dressing for her central line replaced.

Recently, the doctor asked 11 year-old Chloe what she wants to do when she finishes school. Chloe replied, ‘I want to be a nurse because I want to help kids like me.’

‘I want to be a nurse because I want to help kids like me.

- Melissa, Chloe's Mum

Melissa says that watching what Chloe's going through and seeing how much it's affected her and the family, it’s clear that more needs to be done.

‘Childhood cancer is affecting so many people's lives, and so many families go through even worse than what we went through. We need to do better. We have to do better, not just for the kids, but for the families.’

‘This is not rare. We need more money to get better treatments, better outcomes, and better quality of life. Every dollar counts.’