On January 7, 2017, Jon fainted after joyfully watching our son play in a basketball game. We were shocked two days later to find out the cause: Jon had cancer of an incredibly rare type, duodenal adenocarcinoma. We had hoped for Jon to immediately have surgery to remove the tumor, but alas it proved more complicated. Our friend and oncology surgeon, Dr. Jason Sicklick fast-tracked Jon for treatment by a wonderful and dedicated team at UCSD -- Dr. James Murphy (radiology oncologist) and Dr. Paul Fanta (medical oncologist). Jon swiftly began and finished an initial 28 course treatment of radiation and chemotherapy.
Jon’s next plan was immunotherapy. A glitch came up when his GI track and organs decided to protest the recent assault by radiation and chemo and he could not properly process his food. A roller coaster of frustrating GI and biliary procedures followed before Jon finally was able to get his first infusion of Keytruda in early May. Everyone hoped would be a HUGE success. Unfortunately the roller coaster continued. A biopsy of the liver showed metastasis, so we then knew there was more of the c-word than it had previously seemed. The bright side was that there were immune cells present, which showed promise that the immunotherapy was starting its job. We better understood that the pain that he was feeling was associated with both spread of disease and response to treatment.
After a subsequent immunotherapy treatment, however, things began to spiral again and Jon was back for a prolonged stay at UCSD. At first it was just pain and inflammation, then sweats and other effects that led to his surgeon (Dr. Sicklick) performing a 5 hour gastrojejunostomy to connect his stomach to intestines bypassing duodenum. While he was trying to stabilize, immunotherapy and chemo were on hold (the most anxiety provoking, gut wrenching waiting game part). Next came a circus of blood and plasma transfusions, excessive fluid gain, paracentesis to get rid of the fluid, fluid all re-accumulating. Tail chasing until Dr. Fanta could resume immunotherapy and add chemotherapy infusions.
Throughout, although Jon was feeling awful, he tried to rest and maintained a positive attitude, with the support of an amazing nursing and medical staff. He hamster-wheeled while his body tried to catch up and he kept his minds/spirits moving forward. This c-word was much more difficult than any of us could ever have anticipated. When people say c-sucks and #&%^-c, it's more than an understatement. The glimmer of light on many dark days was that he maintained his same old sense of humor.
Although he could never seem to catch a break, Jon never gave up. He kept asking “what’s next?” and proceeded to have more chemo. On top of progressive disease, he had every complication associated with c-word. Extreme neuritis, inflammation, hepatic encelopathy, recurring ascites, cholangitis, coagulopathy, anemia, sepsis, ammonia skyrockets, heart issues, fluid shifts, organ stress and a crazy klebsiella infection (never heard of almost any of this before) as well as severe pain -- all while hoping the treatment was doing some major magic.
He repeated chemo (on top of the above list) as he knew in his heart he had to keep fighting without pause and fully trusted the amazing care and plans of our doctors and nursing staff (by now our best friends). In late August, Jon’s blood pressure took a tough turn and he was transferred to ICU. His kidney function took a hit. He had tumor lysis. We spent September 2 trying to watch college football together in the ICU. Go blue! Roll tide!! He tried to put on his bama shirt over the IV's, etc. Internally in his body it was a race between treatment and disease. We luckily had Dr. Fanta who refused to stop fighting for Jon -- and Jon remained #JonStrong for us. The worst thing in the world is that we lost him September 6, 2017.
Jon was determined to beat this. Our family (and friends and doctors) were determined to be by his side and celebrate his success. We don’t want this to be anyone else’s story. Please help us keep his smile and memory alive by helping with research and awareness through jonstrong.org.