A ground-breaking trial exploring new treatments for child cancer is launching in New Zealand today, giving high hopes to families like that of 12 year-old Fynn Abbott who was diagnosed with a hard-to-detect type of cancer at the age of seven after several months of misdiagnosis.
Every week about three New Zealand children under 15 are diagnosed with cancer. Less than three years after being diagnosed, more than 20 per cent die.
This trial, named the Precision Paediatric Cancer Project (PPCP), aims to reduce those numbers.
The University of Auckland study, led by Dr Andy Wood, is focused on helping relapsing and hard-to-detect patients, like Fynn.
At the age of seven, after being misdiagnosed for five months, Fynn was diagnosed with medulloblastoma cancer that affects the brain.
He underwent surgery to remove the tumour but was left with a devastating brain injury, leaving him unable to move, blink or swallow.
He then underwent an intensive rehabilitation programme of physiotherapy, speech and language therapy and occupational therapy to learn to speak, eat, sit, stand and walk again.
Over 18 months, he had nine cycles of chemotherapy before it was confirmed he had no evidence of disease.
Unfortunately cancer returned in July last year but in a different form, still in the brain - Glioblastoma (GBM).
Fynn's mother Sandra said it was a common risk from radiology to the brain, which was used to treat his first round of cancer.
"He had surgery and they removed most of it but couldn't remove the rim of the tumour because that's where it was controlling his speech."
Now 12, Fynn manages his cancer with a cocktail of medication and natural supplements but his future remains uncertain, leaving the family on edge.
"He's independent enough ... he's just started at an intermediate school and catches the bus but he battles, he has pro-balance, which means he falls over a lot, but eventually he will need more care."
Sandra said this trial was so important and really exciting.
"Researchers in New Zealand have made some good strides with adult cancer but for a long time child cancer hasn't had the attention it deserves.
"Children in New Zealand deserve to be looked after ... at the moment with rare cancers like Fynn's it's difficult to diagnose and we're given a blanket of general treatments but it's unknown if they will work."
Wood said the way the trial would work was with genetic samples that would be taken from the participants to identify specific mutations causing cancer.
"The research team will then discuss the information with surgeons from Auckland District Health Board, looking at other related research, before having further discussion with the families involved to see whether they would be up for proposed treatments."
He said studies like this had been done overseas but this trial aimed to fill the gap in New Zealand and provide constant quality research across the whole nation.
"It's really important to us that we cover all of New Zealand so we are looking for participants from all around the country."
The study will be run over the next five years and Wood aimed to gather at least 25 participants each year.
The study was being funded by the Child Cancer Foundation and Cure Kids, which have donated $1.25 million over five years.
"This has been in the works for a couple of years now, so it feels good to get to this point."
Q & A about the Precision Paediatric Cancer Project:
What is PPCP?
It's a New Zealand first clinical trial funded by Child Cancer Foundation and Cure Kids. It aims to find a treatment for difficult-to-detect and relapsing child cancer patients using genetic samples.
How will it work?
Put simply, genetic samples will be taken from the participants to identify genetic mutations causing cancer. The research team will then work with the surgeons to come up with possible treatments. Researchers will then go back to the families to discuss whether they would like to test the treatment. Dr Andy Wood said he also hopes to follow the participants after the trial.
Who is leading the PPCP trial?
It is being led by Dr Andrew Wood from the University of Auckland, supported by a team of health professionals in Auckland and Canterbury. Wood is a New Zealand-trained paediatric oncologist who worked at the Children's Hospital of Philadelphia, one of the world's leading child-cancer hospitals prior to returning to New Zealand to work on this research.
Has similar research been done before?
In the USA, Europe, and Australia there are already large-scale research projects but it is extremely difficult for New Zealand children with cancer to access these projects.
Who is eligible to participate in the trial?
The trial is looking for children with relapsing and difficult-to-treat cancer where plan A and plan B haven't worked. They must also be managed by the Starship Blood and Cancer Centre, or the Children's Haematology Oncology Centre in Christchurch. Speak to your oncologist first and they will be able to access additional information specific to your child's eligibility.