Arian Truter, 8, has been fighting an aggressive cancer in his brain stem, known as diffuse intrinsic pontine glioma (DIPG), since November 2015.
It is one of the most deadly childhood cancers. On average, children with DIPG survive about a year.
When Arian was diagnosed doctors told his parents Sanaz and Nadim Truter he had nine months to live.
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The disease was difficult to treat. In New Zealand, radio therapy was usually recommended.
DIPG does not respond to standard chemotherapy and surgery was not an option because the part of the brain stem affected controlled critical bodily functions including breathing, swallowing and sleep.
Arian has gone through dozens of rounds of radiation and in July 2016, a scan showed the tumour had stopped growing.
But a routine MRI scan taken in June revealed the cancer had spread to a different part of Arian’s brain – the frontal lobe, responsible for motor skills, language, memory and problem solving.
“We got a big scare because we were thinking maybe, you know, he is the miracle,” Sanaz Truter said.
“He passed the date that they had given us that he’s going to live to and [we thought] ‘maybe he will live longer’.
“Then we saw the metastasised tumour and it really brought us back to reality that he could go any day.”
Because of the position of the new tumour Arian’s neurologist was able to take a biopsy.
His parents sent a section of the tumour to the United States for DNA sequencing to find out whether new drugs which targeted certain genetic mutations in cancer cells might work on the tumour.
A study at Glasgow University published last year indicated the medication Olaparib, which has been used overseas to treat advanced ovarian cancer, could possibly be used against aggressive brain cancers.
A trial is underway in the United States to find out whether Olaparib is effective in treating DIPG.
Tests showed Arian’s tumour had a genetic mutation that might respond to Olaparib, so his parents decided he should try it, hoping it would extend his life.
Olaparib is not funded in New Zealand so the Truters, who live on Auckland’s North Shore, are paying $7500 per month for the drug, which Arian has been taking every day for the last two weeks.
The cheeky 8-year-old, who loved computer games and playing pranks, was yet to experience any negative side effects.
Next month, Arian would have another MRI scan to see how effective the treatment has been.
Pharmac director of operations Lisa Williams said because it was yet to receive a funding application for Olaparib to be used for brain tumours, it had not assessed evidence about its effectiveness in treating DIPG.
Dr Michael Sullivan, a child cancer specialist at Melbourne’s Royal Children’s Hospital, said different targeted therapies for DIPG, including Olaparib, were being tested in about a dozen international clinical trials.
“It’s fair to say we don’t have the results of those trials yet. For this particular drug [Olaparib] there is not the evidence to show that it is going to cure any particular child.
“Families are usually very realistic and know that trying something might be to give extra time or to alleviate symptoms.”
Although a cure was yet to be found, oncologists were hopeful one could eventually be developed, Sullivan said.
“This is a cancer where we will only be able to cure children in the future by inviting families now to participate in clinical trials.”
He estimated about 10 children in Australia and New Zealand were diagnosed with DIPG each year.