"My one-year-old baby has cancer. This is what my life looks like."

Baby Ava just celebrated her first birthday at the Sydney Children’s Hospital. Described as a “happy baby who loves music”, the 12-month-old should be reaching milestones such as crawling and walking like other children her age.

But she’s not, yet. Diagnosed with infantile acute lymphoblastic leukemia at eight months after suffering from a persistent middle ear infection and trouble feeding, Ava has spent half of her short life in hospital receiving treatment.

Also spending her days in hospital is Ava’s mum, Sherie. Away from her husband, Dave and two sons, Connor, 15 and Blake, 10 who live in their family home in Goulburn, Sherie’s life is confined to the children’s cancer unit where Ava has undergone three rounds of chemotherapy.

For the public servant who had only just returned to work from maternity leave when her daughter became unwell, Ava’s diagnosis has had an understandably massive impact on their family unit.

“It was a huge change, and it’s had a big impact on our lives,” Sherie told Mamamia of life after Ava’s diagnosis.

“We’ve got sons too – we had to think about what this meant for them, as well as the financial pressures and work commitments.

“Generally I spend all of my day in the hospital with Ava, I don’t get out much at all. And during the week when the boys are home, the only time we’ll speak is on FaceTime of a night.”

Fortunately, Ava is one of the lucky ones. Set to recieve a bone marrow transplant from her older brother, Blake in October, Sherie hopes her family will be together again at home by Christmas.

“We just want her to start doing all the things someone her age would do, to get back to normal life – going to work, coming home and cooking dinner – that’s all we want,” she said.

Every year, over 950 Australian children and adolescents are diagnosed with cancer. While 150 of those are diagnosed with cancer types carrying less than a 30 per cent survival rate, including aggressive brain tumours, sarcomas, neuroblastomas and, like Ava, infant leukaemias, a further 60 per cent will relapse and then have less than a 30 per cent chance of surviving.

It's these children who many are hoping will benefit from the Zero Childhood Cancer Program, one of the world's  most comprehensive child cancer personalised medicine studies into cures for aggressive cancers.

The trial led by the Children's Cancer Institute and the Kids Cancer Centre at Sydney Children's Hospital starts on Monday and will see 400 of the country's sickest children enrolled over three years to help identify the drugs most likely to kill each child’s specific cancer.

Giving hope to hundreds of families across the country, the Zero Childhood Cancer Program is working with thirteen leading Australian and international research institutes and doctors from all eight of Australia’s kids’ cancer centres to offer the program free to children who meet the clinical trial enrolment criteria and are enrolled through their
treating oncologist.

Director of the Kids Cancer Centre in Randwick's Sydney Children's Hosital, Professor Tracey O'Brien believes this trial is a game changer for treating childhood cancers.

"Despite the dramatic increase in childhood cancer survival rates over the last sixty years, three children and adolescents die every week in Australia from cancer," she said.

"The challenge in curing every child is that each child’s cancer is unique. Every day on our wards we face the
challenge of trying to find the best possible treatment for each child with cancer, especially those with the most
aggressive cancers.

"I truly believe the Zero Childhood Cancer Program is a potential game-changer in how we treat high-risk cancer."

LISTEN: Carrie Bickmore on how brain cancer has affected her family (post continues after audio...)

Although Ava will not be participating in the trial if her bone marrow transplant is successful, Sherie knows how much the initiative will mean to the families of seriously ill children.

"This will make such a difference to families by giving them hope and encouragement knowing that their child is
receiving the best possible treatment that is tailored to their individual requirements," she said.

“As a mother of a childhood cancer patient, it is so uplifting to know that we are one step closer to potentially curing childhood cancers."

For more information about the Zero Childhood Cancer Program, visit their website.

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