Long story short: John has an untreatable, incurable rare form of cancer. Multiple major surgeries to make him comfortable, and currently in a trial of his own trying immunotherapy. Full story below!
John was diagnosed with Psudomyxoma Peritonei (PMP), a form of appendix cancer, in 2015. Upon diagnosis we were told this is a rare cancer that is un-treatable, only with major surgeries to remove the bulk of the tumors that have spread throughout his entire abdominal cavity. No chemo or radiation will touch these types of tumors. His first surgery was 14 hours, where they removed MANY tumors (including one the size of a football), 13.5 liters of mucin (which is a jelly like substance that these tumors secrete, filling up his abdomen), his appendix, 60% of his stomach and his entire large colon. They did a HIPEC treatment during surgery, which is a heated chemo inside his abdomen that is supposed to kill microscopic cancer cells hiding in there and give him a longer stretch between surgeries. The surgery made him more comfortable, but was not curative. There is a lot of disease left in his pelvis and surrounding his liver/gall bladder (fusing them together). Fast forward to September, 2017, where he again was filled back up with tumor and mucin, making him uncomfortable. A 12 hour surgery helped remove a lot of the mucin and tumors, but again not curative as the bulk of the disease is layered over vital organs. HIPEC was not possible this time, because there was so much disease that could not be removed, it would have done more harm than good. Our amazing surgeon believes in quality of life and has done all he can to make him comfortable knowing he cannot cure John of this nasty disease. At his 6 week post op for his second surgery, we saw his abdomen already filled back up with mucin. A defeat we were not expecting, which prompted some research into new ways to try and slow this thing down. John is now under the care of a second Oncologist that has decided to give him a shot at an experimental treatment. This immunotherapy drug works well for other cancers (lung, kidney, liver, mesothelioma), but has not been trialed or FDA approved for appendix cancer. This oncologist said she is willing to give it a shot based on his progression of disease and being unable to cure with surgery. This will be a 1-2 year long process of biweekly infusions, similar to chemotherapy. We try to remain positive, and thank God everyday for his chance at a longer life. Since diagnosis we have learned to embrace the beauty of everything, and to make as many positive memories with our children as we possibly can. Thank you for following along with us, we have had amazing support and love everyone that has rallied for us in every way possible!