Arian Truter, 8, has a rare, malfunctioning brain tumor. His parents hope that the drug that is being tested in the US will give him more time.
The Auckland couple, whose son has a rare, malfunctioning brain tumor, hopes the drug to be tested overseas will give them more time with their boy.
Arian Truter, eighteen, has been fighting aggressive cancers in the brain stem known as Diffusion Internal Pulmonary Glioma (DIPG) since November 2015.
It is one of the most deadly childhood cancers. On average, children with DIPG will survive for about a year.
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When Arian was diagnosed, the doctors told his parents Sanaz and Nadi Trust that he was nine months old.
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The illness was difficult to heal. Radiotherapy has traditionally been recommended in New Zealand.
DIPG does not respond to standard chemotherapy, and surgery was not a choice because a part of the brain stem affected controlled body functions including breathing, swallowing and sleeping.
Arian underwent dozens of radiation circuits, and in July 2016 the examination showed that the tumor had stopped growing.
Routine MRI examination in June revealed that cancer spread to another part of the Arian brain – the frontal lobe, which is responsible for motor skills, language, memory and problem solving.
"We were very worried because we might have thought you know it's a miracle," said Sanaz Truter.
"It passed the date they gave us to live and [we thought] "Maybe he will live longer".
"Then we saw a metastatic tumor and really brought us back to reality that he could go every day."
Due to the position of the new tumor, Arian's neurologist was able to perform a biopsy.
His parents sent a part of the tumor to the DNA for DNA sequencing to see if new drugs that target certain genetic mutations in cancer cells can work on the tumor.
A study at the University of Glasgow last year suggested that Olaparib, which was used abroad to treat advanced ovarian cancer, could be used against aggressive brain tumors.
In the United States, an examination is being made as to whether Olaparib is effective in treating DIPG.
The trials have shown that Arian's tumor had a genetic mutation that could respond to Olaparib, so his parents decided to try and hope to prolong his life.
Olaparib is not funded in New Zealand, so trustees who live on the northern coast of Auckland pay $ 7500 a month for the drug Arian has used every day for the past two weeks.
The dirty eight-year-old who loved computer games and played jokes had no negative side effects yet.
The next month, Arian will have another MRI scan to see how effective the treatment was.
Pharmac Pharmaceuticals Director Lisa Williams said that since no application for funding for Olaparib for cancer of the brain was received, it has not shown evidence of its effectiveness in treating DIPG.
Dr. Michael Sullivan, an expert on childhood cancer at the Royal Children's Hospital in Melbourne, said that various targeted therapies for DIPG, including Olaparib, were tested in about ten international clinical trials.
"It is likely that we still do not have the results of these tests for this particular drug [Olaparib] there is no evidence to show that they cure a particular child.
"Families are usually very realistic and know they are trying to do something that could be to give more time or alleviate symptoms."
Although the drug was not yet found, oncologists hoped it could eventually develop, Sullivan said.
"This is a cancer in which we will be able to heal children only in the future by calling on families today to participate in clinical trials."
Estimates about 10 children in Australia and New Zealand each year diagnosed by DIPG.