Ava's Story

"Before Ava was diagnosed, I never really thought about children having cancer. I had four perfectly healthy kids."

How quickly life can change. One day Ava Barker was a happy and healthy 18-month-old, and the next, she was in hospital waiting to have a diagnosis of cancer confirmed.

Before diagnosis

After noticing a rash on Ava’s body, Kirsty took her to the GP, who said it was probably just a virus and not to worry about it. The next day, Ava woke up very pale, with golf ball sized lumps under her ears. Kirsty took her to the closest hospital. Although the doctors suspected mumps, Kirsty insisted on a blood test. She was driving home from the hospital when the doctor called her and asked her to bring Ava straight back because there was a problem with the bloods. She returned to the hospital, where the doctor told her he was pretty sure it was leukaemia and that Ava needed to go straight to Sydney Children’s Hospital in Randwick.

Diagnosis

Only three months earlier, Kirsty had separated from her husband (Ava’s father). “Now I found myself sitting next to him in the car, thinking ‘I don’t know how I can do this’”. A bone marrow biopsy confirmed the diagnosis of acute lymphoblastic leukaemia (ALL) and Ava began treatment the next morning. It was when the doctor put in Ava’s port (a tube inserted into a vein in the chest, where chemotherapy can be injected) that reality really hit. Kirsty had been very relaxed with her first three kids – none of whom had ever been in hospital – but now she felt overwhelmed and like a first-time mum again

I had a breakdown; I started crying and couldn’t stop, she says. I was thinking ‘how will I cuddle her with her port in?’ This was the moment it really hit me.

- Kirsty, Ava’s mum

Treatment

Ava was able to go home a few days’ later, returning three times a week to the hospital for treatment as an outpatient. A month later, a biopsy confirmed Ava was in remission and she began the next phase of treatment – a gruelling 18 months of oral chemotherapy. Ava had been stable for seven months, but the night before her scheduled check-up, Kirsty noticed a rash – the same one she’d noticed the first time. The next day at Ava’s check-up, Kirsty was told: there’s a problem with Ava’s bloods. This can only mean one thing; she’s relapsed.

Family

By this stage, Kirsty had met and married her new husband, Andrew. They had just returned from a family holiday in Bali, and were about to start a business. “Things were going so perfectly,” she says. Ava was admitted to hospital and started much more intense chemotherapy, which continued for 35 days straight. During this time, Ava didn’t speak once to Kirsty – she was literally too sick to talk. After a matched bone marrow donor was found overseas, Ava received a bone marrow transplant. Bit by bit, she began to regain her strength.

“For the first two years after transplant, you’re just waiting for something to go wrong,” Kirsty explains. “These days, we just try to live in the moment.” 

Today

Six years post-transplant, Ava is 11 and thriving. “She throws herself into everything,” says Kirsty. “She’s making up for lost time! She’s into every kind of sport and absolutely loves dancing – she been taking part in Eisteddfods.”

Before Ava was diagnosed, I never even knew kids could get cancer – that’s the bubble I was living in. To realise that kids are getting diagnosed with cancer every single week. We really need to do something.

- Kirsty, Ava’s mum




Finding better treatment

Kirsty says that, as a parent, knowing researchers are working hard to develop better treatments brings peace of mind. “I really hope they can make treatment less and less invasive, so parents and families don’t have to go through everything we did.”

Ava has really been able to move forward with her life. People are astounded when they hear she’s had cancer twice. In fact, she seems less affected by the experience than anyone in the family.

- Kirsty, Ava’s mum

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