Today, my thoughts are on Oshin Kiszko, the little boy in Australia whose brain cancer, not only ended his life but divided a nation in the process. Oshins’ parents felt that repetitively subjecting their son to the significant side effects of chemotherapy and radiation was far worse than giving him quality of life over quantity. Instead, they opted for Palliative Care (a form of healthcare provided to people who have a progressing illness that will lead to death). Palliative Care is active and supportive care that seeks to maximize quality of life and comfort. It can be provided in private or public hospitals, hospices, residential aged care facilities as well as in a person’s home. After several rounds of chemotherapy, Oshins’ parents could no longer bear to see him suffer through the side effects and began refusing the traditional Standard of Care offered by his doctors. The case ended up in court, garnering the attention of his native land of Australia and beyond.
I certainly don’t have all the specifics on Oshins’ particular disease like whether or not they ever received a 2nd, 3rd, or even 4th opinion, or if he was being treated by a dedicated pediatric brain cancer specialist or if he had a neuro-surgeon who performs, at minimum, 200 patient surgeries annually or even what type of radiation he was offered. The reason I am writing this opinion piece is because I work with both pediatric and adult brain cancer patients and have for almost 15 years. During that time, I have met numerous children with brain cancer, many who survive this disease and many who did not. My very first reaction to learning about Oshin and that his family was choosing Palliative Care over treatment made me angry because as a mother myself, I kept thinking about how I would do anything to help save my child’s life.
Fast forward several weeks and my thoughts of Oshin and his family continued. I learned a little more about their situation and about their thoughts behind their decisions. I can’t say that I know what I would do or how I would feel if it were my child that was diagnosed with brain cancer and I was being told that this devastating disease would eventually kill him. Thank God, I have not been put in that position. What I do know, is what I did do when my late husband, Chris Elliott, was diagnosed with the same disease. I knew the very moment we were told that this disease would likely kill him sooner rather than later, that we would fight this tumor…this cancer with everything we had.
My husband may be gone but I am still fighting. I am fighting because I personally know children who have had brain cancer, have survived this disease, and are currently living out a very high quality childhood. However, these children didn’t get this opportunity by accident. The children I know fought and beat their disease because they had immediate access to specialists, advanced treatments and clinical trials. They had more than just standard care.
Had Oshin’s parents been given access to these advanced treatments? Were they educated in a way that truly helped them understand all of their options? If they were given all of the information and they were still convinced that their son would die, then I believe they have the right to make whatever decision is best for their family.
My heart goes out to Oshins’ family and their tragic loss. I will also continue to fight for those who are touched by this devastating disease. People need to know that they have a right to Immediate Access to all treatment options available and they must speak with multiple doctors to find out about those options. Decisions like the one the Kiszko’s had to make, decisions with such magnitude, should bring a nation together in fighting for a cure not become a battle of right and wrong. I pray for a day when, rather than dividing a nation, a dilemma like the one Oshin’s family had to navigate, becomes a catalyst for CHANGE; a way to spread the word that patients must require more than the traditional Standard of Care.
Dellann Elliott Mydland, Founder of the End Brain Cancer Initiative