A diagnostic testing system being developed in Auckland is identifying the genetic mutations that cause rare cancers in children.
The testing looks at the entire human genome to find the right therapy, and has already helped save the life of one girl.
Lucca Holecliffe loves gymnastics, arts and crafts, and being a big sister.
She's about to turn six years old; she nearly didn't make it to two.
"It was the worst-case scenario. And then it was the worst case of the worst-case scenario for any kind of family with a young kid," her father Jason told Newshub.
Lucca was just sixteen months old when she developed a stomach tumour weighing a kilogram - a tenth of her entire body weight.
"I remember thinking 'I just want to swap, I just want it to be me!' Like it just felt irrational it was happening to someone so young, it was so out of the blue," says Lucca's mother Jordanna.
Lucca's cancer wouldn't respond to traditional chemotherapy. Instead, paediatric haematologist-oncologist Dr Andy Wood proposed an innovative test to identify her cancer's genetic mutation. Then, it would determine the specific treatment best suited for it.
"We didn't have a choice. It was either let your child die, or we give this a go," says Jordanna.
Ordinarily, cancer gene panels look at two to three million base pairs of DNA - that's enough to find most common cancers.
But Dr Wood's Precision Paediatric Cancer Project can examine up to 6 billion letters - the entire human genome.
"We sort of describe it as looking under a lamp-post at night. You only look at the areas that are lit. But the whole genome testing allows us to look at a much wider expanse," he says.
In cancers as rare as Lucca's, it can be the difference between life and death.
"In a select number of cases, it's changing the way we think about diagnosing and treating disease," explains Dr Wood.
Dr Wood's studies began in 2018. He's now got a $2.75m investment from Cure Kids, the Child Cancer Foundation, and the Lindsey Foundation to scale up his testing and research in the hope of identifying more rare cancers in Kiwi kids.
"For some kids, what we hope is that with difficult to diagnose cancers, or cancers that we're having difficulty treating, that we can find a better answer or some new options," he says.
Lucca's one of nine people ever documented worldwide with the cancer epithelioid myofibroblastic inflammatory sarcoma.
And because of the test, she is the only person to survive it.
"It's wonderful because it's so miraculous and it's hard to get your head around. But at the same time it's incredibly hard to be that first," admits Jordanna.
The Holecliffes were able to treat Lucca by mixing her chemotherapy drug Crizotinib into a cup of Milo, which came with its own set of challenges.
"We sort of had to set up a drug lab in the laundry!" says Jason.
Lucca's been cancer-free for over a year now, but the family still lives from one scan to the next.
"Every day it's there, even though it doesn't look like it's here," says Jordanna.
"She's a real sweetheart. Which we would've never known," says Jason.
And they now know their daughter is an unlikely pioneer.
