It’s never an easy thing to hear the word “cancer”, let alone a “rare cancer,” but that is what our Dad told us he had.
Early May this year, he broke the news that he had been diagnosed with Stage 4 Adenocarcinoma - a non-small cell lung cancer (RET gene mutation). His was an obscure type with slowly progressing symptoms, hence this came as a complete shock to us. .png)
The cancer crept up to him slowly, bringing on symptoms of pain and fatigue. He has started the path of chemotherapy, however, at Stage 4, the chances of survival are slim and the cancer is spreading faster than expected.
The latest scans show it has spread to the liver and spine.
There is a medication that is highly recommended by his doctor that has proven successful with other patients like our Dad, however, it’s not currently approved by PBS and comes with significant costs.
Our Dad is 70 years old, a father of 6 children and a grandfather to 10 grandchildren. He has a deep care for his family. He loves his grandchildren dearly - playing with them, telling stories and often buying them new toys. In spite of his condition, he also still makes an effort to regularly visit his mother in the nursing home and talk with her or bring her food. He has continually served the community working with disability patients, personally taking them to do mundane tasks like running errands and taking them bowling, ticking things off their bucket list like watching a movie in the cinemas, or even just keeping them company or having coffee with them.
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Our Dad has a strong influence in the religious community, and is actively involved in his local church and prayer group. Despite becoming weaker, he still remains not only mentally but physically persistent - always wanting to go for walks with his wife around the local lake. He has a love for learning new skills, writing, drawing, and most of all - immersing himself in other cultures and languages. Due to his condition, his duties at the church, his hobbies and travels have all had to come to a halt. He has had to not only stop preaching at his church group, but also all of the admin tasks like writing the bulletin and planning the prayer group schedule. He has had to offload this work elsewhere. He can no longer travel to other countries and continue his adventures.
Since he started chemotherapy, he went from being the man with the loudest laugh in the room and a gusto for life, to becoming drastically frailer, and his voice even weaker. Selpercatinib is recommended to help target RET mutations, however, the cost of these tablets are very prohibitive as the medication is not on PBS. This medication will cost $9000 per month - payments which we unfortunately cannot afford to sustain while we are all raising our children.
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We are reaching out for support in the community and we would appreciate any help that we can get, no contribution is too small. Watching him struggle every day while knowing that a life-saving treatment exists but is beyond our reach is heartbreaking - please help us give our Dad a fighting chance to create more memories with the family he loves so dearly.