'I don't know how you cope with that': How Ciara beat the odds

Michaela with her daughter Ciara, 7, who was diagnosed with neuroblastoma when she was 12 weeks old. Photo: Wolter Peeters
Michaela with her daughter Ciara, 7, who was diagnosed with neuroblastoma when she was 12 weeks old. Photo: Wolter Peeters
Michaela (left) with her daughter Ciara, 7, Rory, 9, and her husband Aran at their Balmain home. Photo: Wolter Peeters

Michaela (left) with her daughter Ciara, 7, Rory, 9, and her husband Aran at their Balmain home. Photo: Wolter Peeters

"This is your new life," a stranger told Michaela Flanagan as she microwaved her dinner in the kitchen at the Sydney Children's Hospital.

In that moment, the weight of her baby girl's cancer diagnosis felt like it was drowning her.

"I had almost gone into survival mode. Managing a little bit at a time. 'Okay, what's the next thing I need to do?'." Mrs Flanagan said.

"But then it hit me. I wasn't ready to make this my new normal."

When a child is diagnosed with an aggressive cancer, uncertainty becomes a parent's only constant.

Mrs Flanagan's daughter Ciara had been diagnosed with neuroblastoma, a cancer of the adrenal glands, which accounts for 15 per cent of all paediatric cancer deaths in Australia.

The 12-week-old baby had a tumour the size of an orange in her pelvis.

Then came a barrage of surgeries, eight rounds of chemotherapy, countless terrifying trips to hospital every time Ciara's temperature crept up to 38 degrees, and the trauma of putting her child through invasive procedures to save her life.

"It was incredibly traumatic watching your child pinned down, having feeding tubes put in them. She'd just scream," said Mrs Flanagan, who co-founded the fundraising organisation Neuroblastoma Australia.

"Even to have a scan she'd have to be anaesthetised and she'd push away the little mask. It was heartbreaking."

"Some children go through this when they're toddlers and can talk. They'll say 'Why are you doing this, mummy?' I don't know how you cope with that," she said.

The NSW government announced on Wednesday $11.6 million in funding for cancer research through the Cancer Institute NSW, including $1.3 million in grants to investigate new treatments for neuroblastoma, which accounts for one in six of all childhood cancer deaths.

Overall survival rates have crept up over the last two decades through dedicated research, but death rates among children with high-risk prognoses remain high. Patients with high-risk neuroblastoma, about one in four of all cases, have a mortality rate between 50 and 60 per cent.

"While NSW has some of the best cancer outcomes in the world, there is still much to be done to improve cancer survival rates," health minister Brad Hazzard said.

"These grants are a vital investment to help researchers discover treatment options for these cancers," he said.

Ciara was very lucky, her mother said. The seven-year-old has been in remission since 2011, but uncertainties still abound.

"There's a guarded optimism. Most relapses happen in the first two years [after remissions] so I could rest a little easier after that. But you never stop worrying, 'Is it going to come back?'." she said.

Ciara's future is more of a mystery than most, potentially harbouring the long-term effects of cancer treatments.

Until recently, most children with the more aggressive forms of childhood cancer never made it to adulthood. Few aged out of the paediatric system. Children who survive today are the pioneers who will discover the lingering effects of their treatment.

"One doctor told us that when she's older, don't let her put off having children, even if she's very young," Mrs Flanagan said.

"No one really knows the long-term effects, but the only outcome we cared about was if we got to keep her. Everything else? We'll take whatever we can get."

Cancer Institute NSW Chief Cancer Officer and CEO Professor David Currow said NSW cancer research was in the midst of a revolution of personalised treatment that would better target therapies for individual patients and improve their long-term outcomes.

"What we were seeing down the microscope was only part of the picture. Now we're identifying the genetic fingerprint of cancer that will allow us to understand who should be treated with what," Professor Currow said.

It's the type of work undertaken by Professor Roger Reddel at the ACRF International Centre, who was also awarded a translational grant of $3.75 million for the Proteome of Human Cancer, which is part of the former US Vice President Joe Biden's Cancer Moonshot initiative.

"The hope for every new treatment for cancer is that it will be more effective and less toxic than its predecessor. We've seen cancer treatment change dramatically in recent years as we improve outcomes and reduce toxicity," Professor Currow said.

The funding awarded to researchers at the Children's Cancer Institute at UNSW for neuroblastoma research includes grants to Dr Daniel Carter and Dr Pei Yan Liu who will test drugs targeting certain genes present in high-risk neuroblastomas that make them resistant to treatment.

A separate grant to Dr Orazio Vittorio will work on combining catachin, an antioxidant found in green tea with a sugar based compound, dextran, to target high levels of copper, which plays a key role in the progression and aggressiveness of neuroblastoma.

Another $1.3 million will go towards research into treatments for leukemia, including acute myeloid leukemia, which has a five-year survival rate of 24 per cent.

The funding - part of the state government's election commitment to allocate $125 million to cancer research between 2015 and 2019 - also includes $4.3 million to explore new treatments for cancers with poor survival rates including pancreatic, lung, colourectal and ovarian cancers.

The 12 early career fellowships and six career development fellowships was an investment in top and emerging scientists researchers who would continue advancement in treatments into the future, Professor Currow said.

This story 'I don't know how you cope with that': How Ciara beat the odds first appeared on The Sydney Morning Herald.