Welcome to our CaringBridge website. We are using this website to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. We really appreciate your emails, calls and messages of support, but please don't be offended if we can't always message back. We hope this will be a helpful way of keeping you all updated throughout Arni's journey. Thank you for visiting. xoxo Nat and Arni
ARNI'S STORY
As I've been told, Arni was a happy, cheeky and gregarious child (no surprises there!) When Arni was just 9 years old, it was discovered that he had a large, and rare, benign brain tumour called a pleomorphic xanthoastrocytoma (PXA). After moving to New Zealand about 2 years later to have brain surgery, Arni was declared tumour-free.
About 17 years later, Arni fell severely ill and was rushed to hospital, where it was discovered that he was experiencing a bleed in his brain, as his brain tumour had regrown back. Arni had emergency surgery to remove the entirety of the tumour. I was told that following the surgery it was likely he may need to learn to walk and talk again. When Arni awoke from the surgery he was able to both talk and walk!
Unfortunately, Arni’s medical team let us know that whilst the tumour found in Arni’s brain was the same kind of tumour he had as a child, a PXA tumour, it had returned as a high-grade, malignant tumour. Arni had brain cancer.
Despite the poor prognosis assigned to many brain cancers, there is not a whole lot known about Arni’s rare brain tumour. We were both prepared to fight this health battle together, and not be weighed down by the rather scary prognosis statistics attached to brain cancers.
After this surgery and several weeks of radiation therapy, Arni was thankfully declared tumour-free again. Each time Arni had scans there was no evidence of tumour regrowth. We were so thankful and felt like life could return to some form of normality.
Unfortunately, about 18 months later, we sadly found out in September 2019 that Arni's cancer had returned and spread to his spine. Following spinal surgery and radiotherapy, Arni was also placed on a targeted chemotherapy treatment. We were hopeful that we could successfully battle these tumours again. Despite all of these treatments and second medical opinions; however, Arni and I were told in May 2020 that all of the treatment options known to effectively combat his cancer disease had been exhausted. Unfortunately the liver damage Arni experienced whilst taking chemotherapy drugs also meant that he needed to stop taking this treatment. Arni has been told that his medical care is now more palliative in nature, focusing on good pain and symptom management.
We ask for prayers. Arni and I still believe all good things are possible. We still believe we could have more time. We know that science and medicine cannot have a blanket answer to everyone’s experiences of palliative care. We ask you all to pray for Arni. Please pray for a miracle. Please pray for good health for as long as possible. And please join us in increasing awareness of brain cancer and the terrible burden of disease it places on young people. Brain cancer kills more children than any other disease in Australia. It is also the leading cause of cancer-related mortality amongst adults aged under 40. We hope that Arni’s story will help shed more light on this terrible disease that so disproportionately affects the young. We thank you for being a part of this journey.
If you would like to learn more about brain cancer please visit
https://www.curebraincancer.org.auCure Brain Cancer Foundation do some fantastic work in the brain cancer research space in Australia. If you or a loved one have cancer and you would like more support or information, please contact the wonderful cancer nurses at Cancer Council Victoria on 13 11 20.
