Children's Cancer Institute

You’ve given us and families like ours the opportunity for our child to grow up and live their life, and that means more than words can say

- Faye, Charli’s Mum

At 9 years of age, Charli was a very positive and upbeat girl who was full of life. Sociable and outgoing, she loved going out walking or cycling with her friends. Then came a thunderbolt from out of the blue that left the whole family reeling.

Symptoms

After missing six weeks of school during the first major COVID-19 lockdown in NSW, Charli should have been returning to class but instead stayed at home, tired and lethargic, with hugely swollen glands on either side of her neck. Faye consulted with a doctor via Telehealth and Charli was put on antibiotics, with no result. Faye decided Charli must have glandular fever and requested that blood tests be done. At 9 PM that same night, at home watching a movie with husband Will, she got a phone call from the pathology centre. “All I remember hearing was that it was pathology about Charli’s blood test and the word leukaemia and go to Wollongong Hospital immediately - everything else was a blur. That’s when the whole nightmare started.”

We thought she had glandular fever. Nothing serious was ever on our radar.

- Faye, Charli's Mum

Diagnosis

After waiting at the hospital for hours, Faye and Will were told that Charli would be transferred to Sydney Children’s Hospital the next morning – a Saturday. By Monday, they had a definitive diagnosis: acute lymphoblastic leukaemia.

“I’d kept asking, even in Wollongong Hospital: is there any chance that this isn’t leukaemia?,” Faye recalls. “I was hoping that someone would say, ‘Oh, we’re not really sure, maybe it could be this….’ But deep down we knew it was going to be leukaemia. It was just a case of what type of leukaemia.”

Treatment

There began months of ‘tag teaming’, with COVID preventing Faye and Will from being together with Charli at any one time. Faye describes it as ‘a year of text messaging.’ “We were handing over notes about our sick child to each other as we passed in the hallways, with a complete overwhelm of information every time.”

Within a month of what was expected to be at least nine months of treatment, Charli got very sick and had to stay in hospital for 34 days straight. It was during this time that she began to hallucinate from the drugs she was on, leading the hospital to test of meningitis and encephalitis. Faye describes this as “probably the worst time” they went through, though there were others that came close.

It’s so hard to see your child so distressed, and it’s utterly exhausting.

- Faye, Chali's Mum

A Vicious Cycle

After eventually returning home, Charli came down with a high temperature that night and needed to be taken straight back to hospital – the first of what would turn out to be many such times.

“I would do the weekdays in hospital, then Will would come back from work on Friday and go straight to the hospital. He’d do the weekend, and then I’d come back on Sunday night and we’d start again,” explains Faye. “We spent easily a year doing that, because she was just in and out of hospital the whole time.”

We need better treatments, because the treatments were just horrifically toxic and have really taken their toll

- Faye, Charli’s Mum

Side Effects

Charli experienced a range of debilitating side-effects during treatment, including mucositis that became so severe she couldn’t swallow, pancreatitis, and liver failure. A condition called avascular necrosis in her right hip also put her in a wheelchair for months.

After initially being cooperative and compliant, she began to get very upset when procedures needed to be done. Everything, including the drive to hospital, became traumatic. “Even the simplest things at that point become difficult,” Faye explains. “That really starts to take its toll.”

Today

Since finishing treatment in May 2022, Charli has been in chronic pain, unable to walk the dogs or play any sport. Faye is also noticing effects on Charli’s mental health, and worries about potential late effects such as fertility issues.

“I think most people’s perceptions of cancer are sitting in a recliner, getting chemotherapy in your arm, losing your hair, and feeling sick. And yet the reality is that it’s not only the treatment that’s awful − the side effects and the recovery can be even more debilitating,” she explains.

Looking to the future, Faye says what she most wants to see is better treatments.

“I don’t want other children to go through what our Charli has gone through, and what so many other children have gone through. We need to find better options. We need to invest in the things that are going to make a difference.”