Helping Josh Smith

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Wednesday 19th Feb In February 2023, Joshua, 24 years young, was diagnosed with a rare and very aggressive type of Cancer - NUT CARCINOMA - a rare and aggressive subtype of squamous carcinoma which was found behind his right eye in his sinuses. This came as a complete shock and we jumped straight into action. He was first told that they wouldn't be able to operate and that he would need to begin chemo/radiation treatments as soon as possible to try and shrink the tumour which Drs believed had only started roughly 3-6 months prior, and it was growing very rapidly. At this point, the tumour was confined to his sinus but was getting very close to entering his brain. A few days later, we received a call from the Specialists advising us that they wanted to give surgery a try. Two days later, on the 15th March 2023, Josh underwent a 10hr+ surgery to try and remove the tumour. In order for them to remove all of the tumour, my brother unfortunately had to lose his right eye, but surgeon's told us it was a great success, and they were able to remove all of the cancer. 6 long weeks of radiation and chemo followed, which caused a whole new world of trouble: hair loss, radiation burns, loss of taste, and horrible mouth ulcers which led to dramatic weight loss due to his inability to eat - losing 20kg in a month - and needing to have a feeding tube put in, which then became infected and he ended up back in hospital. A small price to pay, I guess, when he was told he was cancer free. We couldn't believe the outcome! This left us all feeling extremely hopeful for the future and was an absolute relief to not only my brother but also his family and friends. Then, not even a month later, he noticed a prominent lump in his neck, which had grown very rapidly and was causing him a lot of pain. A trip to the ER showed our worst fears. The cancer had returned. This time, it was in his neck. The specialists thought maybe this had happened due to the first surgery and that a cell had escaped, which then formed into another tumour. We were again told that surgery wasn't an option, and this time, they told us he only had roughly 3 months to live. There are no words to describe that feeling. Those words ripping us apart! At home, care for Josh is around the clock. A strict schedule is in place for the long list of daily medications he needs multiple times per day, with all medications now needing to be crushed up and given to him through his feeding tube. Being there to assist if needed to get to the bathroom, making any safety precautions we could in the shower and around the house so Josh could continue to use the bathroom and shower on his own without the need for our help; allowing for him to still have some form of independence, when most of it at this stage had unfortunately been taken away. Daily trips to the hospital for radiation treatments, long nights sitting by his bed feeling helpless when we couldn't stop the intense pain he was in, and making sure he wasn't getting bed sores is just a small glimpse into the impact that this horrible disease. Another late-night trip to the emergency room was made due to pain and increased swelling in his neck. Further testing was performed, and once again, the results were a shock! Multiple small tumours were found in his neck, one of them being very close to his thyroid gland. This time around, Drs aren't so positive and say there is nothing much more they can do besides the radiation treatment. Towards the end of radiation, Josh is told there is a clinical trial he is eligible to enter, and it begins a few weeks after his treatments finish. Unfortunately, circumstances changed for Josh and he wasn’t eligible for the trial due to being cancer free. Three days later, tests showed the cancer in his clavicle and between his ribs. This was DEVASTATING! Long discussions with his specialist were done and it was highlighted Keytruda was needed. We were told this immunotherapy Josh needs is not covered through the PBS and the cost is exorbitant. He would need to have treatments every 3 weeks for a duration of 2 years with a cost of $16,000 per treatment. It's so sad and completely unfair that an amount of money can be put on someone's life. That without money, Josh can't have the possible life-saving treatment he needs. But this is the reality we were now facing. We ask for your help, no matter how big or small. Every dollar puts us that little bit closer to being able to pay for immunotherapy treatment. But time is not on our side. This cancer is very rare and very aggressive, and every day that goes by, we are losing time. But we will continue to fight this fight with him. Because his life is worth the battle!! Share