Max's Battle with Autoimmune Pancreatitis

UPDATE:

If you've been following Max's story with a cancer diagnosis, you may have noticed updates were few and far between. These last few weeks with Max have been both hopeful as well as overwhelming. The original diagnosis of acinar cell carcinoma with pancreatic ductal adenocarcinoma has been changed. Max was undergoing chemotherapy through a port as well as receiving medication and treatment for the side effects that come with that treatment. Before his second cycle of chemotherapy, the doctors on his team decided they needed a second opinion before continuing with the treatment plan after considering how rare the original diagnosis was. It was originally thought that he was one of four children in the nation with that diagnosis.

Upon taking another biopsy through surgery, the lab analysts at Cincinnati discovered that the mass within Max's pancreas is caused by Autoimmune Pancreatitis Type 2. The masses caused by this disease are nearly identical to cancerous masses found in the pancreas, even within lab analysis of biopsies. The doctors' drive to be thorough and do what's best for Max has led them to this new diagnosis.

This new diagnosis is still a serious matter, while grateful that it is no longer considered cancer, there is still a short-term and long-term treatment plan, as well as plans to remove most of his pancreas, as the dense fibrosis caused by this disease will lead to further damage if not removed, and could potentially become cancerous if not monitored closely in the future.

We are moving forward with this new treatment in preparation for his upcoming Whipple procedure and possible replacement of the stent that was put in previously to drain his liver, as the mass had blocked off his biliary tubes, causing jaundice. As of right now, we have more questions than answers when it comes to treatment, and we are trying our best to educate ourselves further so we can better explain this occurrence to our family and loved ones.

Max has been put on a new round of medications, including a hefty dose of steroids to combat the inflammation in his pancreas to prepare for surgery. He has also been placed on pancreatic enzymes that are not covered by insurance and that he will need for the rest of his life. We appreciate all of the support, both financial and emotional, that we have received from the community so far, and we will continue to try to advocate for Max and work with his team of doctors to acquire more information as well as a solid treatment plan so we can be better equipped to handle his medical needs moving forward.

Once again we thank you for the support, prayers, and words of encouragement as we navigate this complicated and difficult time with our family.