Arian Truter, 8, has a rare, inactive tumor in the brain. His parents hope that a drug tested in the US will give him more time.
A pair of Auckland, whose son has a rare, inappropriate brain volume, hopes that a drug to be tested abroad will give him more time with his boy.
Arian Truter, aged 8, has been struggling since November 2015 in aggressive cancer of his brain stem, known as the diffuse endogenous glioma of the pontoon (DIPG).
It is one of the most deadly childhood cancers. On average, children with DIPG survive about a year.
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When Arian was diagnosed, the doctors told his parents Sanaz and Nadim Truter that they had nine months to live.
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The disease was difficult to deal with. In New Zealand, radiotherapy was usually recommended.
DIPG does not respond to standard chemotherapy and surgery was not an option because the part of the brain stem affected the controlled critical bodily functions, such as breathing, swallowing and sleeping.
Ariane has gone through dozens of rays and in July 2016, a scan showed that the volume had stopped growing.
But a routine MRI scan in June revealed that 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 have a great scare because we thought maybe, you know, it's the miracle," said Sanaz Truter.
"He passed the date they gave us that he would live and [we thought] "Maybe he will live longer."
"Then we saw the metastatic volume and really brought us back to the fact that it could go any day."
Due to the location of the new tumor, the Arian neurologist managed to get a biopsy.
His parents sent a portion of the tumor to the United States for DNA sequencing to see if new drugs targeting certain genetic mutations in cancer cells can work in the tumor.
A study at the University of Glasgow published last year showed that Olaparib, which has been used abroad to treat advanced ovarian cancer, could potentially be used against aggressive brain cancers.
A trial is under way in the United States to see if Olaparib is effective in treating DIPG.
The tests showed that Arian's tumor had a genetic mutation that could respond to Olaparib, so his parents decided they should try it, hoping to extend his life.
Olaparib is not funded in New Zealand, so Truste, living on the northern coast of Auckland, is paying $ 7500 a month for the medicine Arian receives daily in the past two weeks.
The noisy 8-year-old, who loved computer games and playing prank, had not yet experienced any negative side effects.
The following month, Arian would have another MRI scan to see how effective the treatment was.
Pharmac's business manager, Lisa Williams, said he had not yet received a funding application for Olaparib to be used for brain tumors, had not evaluated evidence of its effectiveness in treating DIPG.
Dr Michael Sullivan, a child cancer specialist at the Royal Children's Hospital in Melbourne, said various targeted treatments for DIPG, including Olaparib, were tested in about twelve international clinical trials.
"It is fair to say that we do not have the results of these tests yet, for this particular medicine [Olaparib] there is no evidence that he is going to cure a particular child.
"Families are usually very realistic and know that trying something could be to give extra time or alleviate the symptoms."
Although a treatment was not yet available, oncologists felt it could eventually develop, said Soulvan.
"This is a cancer where we can only cure children in the future by inviting families now to participate in clinical trials."
It is estimated that about 10 children in Australia and New Zealand were diagnosed with DIPG each year.