Arian Truter, 8, has a rare, unoperable brain tumor. His parents hope the drug being tested in the United States will give him more time.
A Auckland couple whose son has a rare, unoperable tumor on the brain hoping that the drug being tested abroad will have more time with his boyfriend.
Arian Truter, 8, fought against aggressive cancer in his brain, known as a diffuse Inner Pontic Genius (DIPG), since November 2015.
This is one of the most deadly childhood carcinomas. On average, children with DIPG survive for about a year.
Share your cancer story
Share your stories, photos, and videos.
When Arian was diagnosed, doctors told Parents Sanaz and Nadim Truter that he had nine months of life.
* Parents struggle for life with a terminally ill son
* Par Taranaki fought for the life of a two-year-old son in New York
* Mom said six days before the ovary surgery that the insurance would not cover it
* A billion-person drug company wants to be "reimbursed" with the financing of taxpayers
The disease was difficult to cure. In New Zealand, radio therapy is usually recommended.
DIPG did not respond to standard chemotherapy, and surgery was not an option because part of the stump affected control of critical bodily functions including breathing, swallowing, and sleep.
Arian passed through dozens of radiation circles and in July 2016, the scan showed that the tumor did not stop growing.
But routine MRI scans in June revealed cancer spread to another part of Arian's brain – frontal lobe, responsible for motor skills, language, memory and problem solving.
"We had a great fear because we thought maybe, you know, it's a miracle," said Sanaz Truter.
"The date went by that they gave us to live for [we thought] & # 39; may be more live & # 39;
"Then we saw a metastatic tumor and it really brought us back to reality that it could go every day."
Due to the position of the new tumor, Arian's neurologist could have taken a biopsy.
His parents have sent a part of DNA sequencing to the United States to find out whether new drugs targeting specific genetic mutations in cancer cells can work on the tumor.
A study at the University of Glasgow published last year showed that the drug Olaparib, which was used abroad for the treatment of advanced ovarian cancer, could be used against aggressive brain cancer.
A US trial is underway to determine if Olaparib is effective in treating DIPG.
Tests have shown that Arian's tumor has a genetic mutation that could react to Olaparib, so his parents decided he should try it, hoping to prolong his life.
Olaparib is not funded in New Zealand, so Truters, who lives on North Shore Auckland, pays $ 7500 a month on a drug that Arian has taken every day for the past two weeks.
The absurd 8-year-old, who liked computer games and singing, still has to experience any negative side effects.
The next month, Arian will have another MRI scan to see how effective treatment is.
Pharina Lisa Williams, Operations Director, said he had not yet received an Olaparib funding application that would be used for brain tumors but did not evaluate evidence of its effectiveness in treating DIPG.
Dr. Michael Sullivan, a cancer drug expert at Melbourne's Royal Children's Hospital, said various target therapies for DIPG, including Olaparib, were tested in a dozen international clinical trials.
"It's good to say that we have not yet got the results of these tests for this drug [Olaparib] there is no evidence that they will treat a particular child.
"Families are usually very realistic and know that something could be giving extra time or relieving symptoms."
Although the drug was still found, the oncologists hoped to eventually develop, Sullivan said.
"This is cancer in which we will only be able to heal children in the future by inviting families to participate now in clinical trials."
It is estimated that approximately 10 children in Australia and New Zealand are diagnosed each year by DIPG.