‘IT’S LIKE WINNING LOTTO!’
Children like Luna can now survive thanks to a new cancer-fighting wonder drug
Cradling their screaming newborn, Luna, in their arms, Sam Byrne and her partner Taylor Kemmery from Brisbane were at their wits’ end.
“She wasn’t feeding properly and she was crying so much,” Sam, 28, tells Woman’s Day. “I felt something wasn’t right but doctors had an explanation for all Luna’s symptoms.”
Enlarged lymph nodes, they said were due to teething, stomach tenderness was a UTI.
en, as a toddler, Luna’s loss of balance was developmentally appropriate and her lack of appetite and feeling generally unwell was put down to normal childhood illness.
But in July 2023, when Luna was 22 months old, Taylor found a brazil nut-sized lump in his daughter’s ribs. is time he and Sam wanted answers.
“I refused to take Luna home from hospital. She ended up having blood and urine tests and that’s when they found it,” Sam says.
IMPOSSIBLE SITUATION
Luna had stage-four neuroblastoma – a cancer that develops in the nervous system.
e most common childhood cancer, it develops into a tumour, most often around the kidneys, and Luna had a grapefruit-sized one in exactly that spot.
“e diagnosis was such a blur. Luna needed to start chemotherapy straight away. I’d known there was something wrong but I’d never imagined this,” Sam says.
A four-hour surgery followed ve months of chemo and then Luna needed a bone marrow transplant and more aggressive chemotherapy. e horror of seeing their daughter so sick was exhausting and heartbreaking but Luna wasn’t alone.
Around 40 children are diagnosed in Australia every year, which means there’s a wealth of information out there, but not all of it good.
“We found out early on about relapse rates,” Sam says. “It’s very high – around 50 per cent and then survival following relapse is only around ve per cent.”
e excitement of discovering a drug called DFMO, which reduces this shocking relapse rate and dramatically increases life expectancy was dulled when Sam discovered the treatment was only available in the United States, costing $500,000.
“It was mind-blowing,” Sam, who is on unpaid leave from a job in hospitality, says. “It was a double blow because we wanted to spend all the time we could with Luna but needed to fundraise to give her the best shot at survival.”
As well as drug costs, an immunocompromised Luna would need to travel to the States six to eight times, risking her health, to pick up the script and bring the drugs home.
‘Luna’s been through so much but she loves life’
It seemed an impossible situation but behind the scenes something was happening. Other families who had been through it were ghting for the drug to be made available in Australia and the government was listening.
Incredibly, in July 2024, it agreed to fund the potentially life saving drug until it is o cially approved here.
For Sam, Taylor, and scores of other parents like them, it was like waking up to a lotto win.
“It was such a huge relief, a weight o our shoulders. We
could focus entirely on Luna,” Sam says. “We felt so fortunate it has come at the right time for her.”
SO THANKFUL
Luna is still undergoing immunotherapy and is due to start the new treatment later this year.
“It’s her third birthday this month and we’ll be celebrating,” Sam says. “She’s been through so much but she loves life. She’s always happy and smiling, running around chatting to the nurses, who are her best friends now. We’re so thankful the government came on board and for the people who fought for this. It’s a decision that could save so many kids every year.”