The 8-year-old Arian Truter has a rare, inoperable brain tumor. His parents hope that the drug tested in the US will give him more time.
The Auckland couple, whose son has a rare, inoperable brain tumor, hopes that a drug tested abroad will give him more time with his boyfriend.
The 8-year-old Arian Truter fights an aggressive brainstem cancer, called diffusion internal pontine glioma (DIPG), from November 2015.
It is one of the most lethal cancers of childhood. On average, children with DIPG survive for about a year.
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When Arian was diagnosed, the doctors told his parents Sanaz and Nadim Truter that he was nine months old.
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EarlierEarlierThe disease was difficult to treat. Radiotherapy is usually recommended in New Zealand.
DIPG does not respond to standard chemotherapy and surgery was not possible because part of the brain stem influenced the controlled critical functions of the body, including breathing, swallowing and sleep.
Arian has gone through dozens of radiation rounds, and in July 2016, the study showed that the tumor had stopped growing.
However, a routine MRI scan performed in June revealed that the cancer has spread to another part of the Arian brain – frontal lobe, responsible for motor skills, language, memory and problem solving.
"We have a big fear because we thought maybe, you know, he is a miracle," said Sanaz Truter.
"He gave the date they gave us, that he would live and [we thought] "maybe he will live longer."
"Then we saw the tumor metastasis and it really brought us back to reality, that it could go every day."
Due to the location of the new tumor, the neurologist Ariana was able to perform a biopsy.
His parents sent a tumor section to the United States for DNA sequencing to find out if new drugs that targeted some genetic mutations in cancer cells could affect cancer.
A study published last year at the University of Glasgow indicated that Olaparib, used to treat advanced ovarian cancer, could be used against aggressive brain cancers.
An ongoing study in the United States to find out if Olaparib is effective in the treatment of DIPG.
Tests showed that Ariana's tumor had a genetic mutation that could react to Olaparib, so his parents decided he should try, hoping it would prolong his life.
Olaparib is not financed in New Zealand, so Trappers who live on the North Shore in Auckland pay $ 7,500 a month for the drug Arian has been taking every day for the last two weeks.
The cheeky eight-year-old who adored computer games and pranks had not experienced any negative side effects yet.
The next month, Arian will have another MRI scan to see how effective the treatment was.
Managing director of Pharmac Lisa Williams said she had not yet received Olaparib's request for brain tumors, she did not assess the evidence of its effectiveness in the treatment of DIPG.
Dr Michael Sullivan, a specialist in pediatric cancer at the Royal Children & # 39; s Hospital in Melbourne, said various targeted DIPG therapies, including Olaparib, have been tested in several international clinical trials.
"Honestly say that we do not have the results of these tests for this particular drug [Olaparib] there is no evidence that a child will be cured.
"Families are usually very realistic and know that trying something can be about sacrificing extra time or relieving symptoms."
Although no medication has yet been found, oncologists hoped that it would eventually be developed, Sullivan said.
"This is cancer in which we will be able to cure children only in the future, inviting families to participate in clinical trials."
It is estimated that about 10 children in Australia and New Zealand have been diagnosed every year at DIPG.