Alex's Pancreatic NET Cancer & MEN-Type 1 Expenses

Dear Family and Friends, Alex has inherited a rare disorder called Multiple Endocrine Neoplasia Type 1. MEN-Type 1 is part of a group of disorders that affect the body's network of hormone-producing glands in the Endocrine system. This disease causes benign or malignant tumors to form in the pituitary (head), parathyroids (neck), and pancreas (abdomen). After some unusual symptoms, Alex saw an Endocrinologist in June of 2014 who coincidentally had just returned from a MEN seminar. After many tests, a 8mm pituitary tumor was discovered. Lifelong medication was prescribed to avoid surgery and shrink the tumor slowly. Immediately following, the doctor ordered an abdominal MRI which revealed a 3.5cm tumor at the head of the pancreas and a 7mm tumor in the tail of the pancreas. A biopsy of the pancreas tumors indicated a diagnosis of Pancreatic Neuroendocrine Cancer. The best treatment recommended was a Whipple surgery. On October 3rd, 2014, Alex underwent a Whipple procedure at Massachusetts General Hospital. (Removed: Half of pancreas, duodenum, bile ducts and gallbladder.) Thankfully the surgery was performed by Dr. Keith Lillemoe, a world-renowned surgeon who specializes in pancreatic and biliary surgery. We feel extremely blessed that we had the Chief of Surgery perform Alex's operation and help her through the recovery process. Dr. Lillemoe and Alex have formed an unbreakable friendship unlike any other. He has been quite the blessing answering all of our questions and always checking in on her to this day. Four months after the Whipple procedure, began her grueling 5 year battle with undiagnosed pancreatitis. After the first 7 months of pancreatitis, Alex underwent an ERCP procedure at UCSD La Jolla Health in California on Sept 25, 2015. The surgeon broke up scar tissue that had formed from the remaining half of her pancreas through her intestines. We were very hopeful that clearing out the scar tissue would be the cause to all the chronic pain. To our dismay, shortly after the procedure, the extreme pain and nausea from the pancreatitis returned. Since we are out of answers, we took a step back from the pancreas and moved on to the parathyroids. On November 20th, 2015 at UCSD La Jolla Health in California, Alex had total parathyroidectomy with forearm implant to remove the tumors and parathyroid glands in her neck. She battles tetany quite frequently now but we are hopeful that her forearm implant will fully kick-in with calcium production one day. In May of 2016, Alex had a Hibernoma tumor in her leg successfully removed. She is between scans and meeting surgeons to try to focus on what is causing her pancreatitis to this day. Alex is on a strict diet of no alcohol, no red meat or fried foods, low fat, and low sugar. Her latest pancreatitis episode was a month ago, averaging 3-5 days in the hospital. She has had countless EUS/ERCPs, scans with contrast, and blood work to try to figure out what is causing the pancreatitis. There is no blockage noted, nor does she have a constricted pancreatic duct. We will continue to monitor her pituitary tumor in her head, as well as her dozen small pancreatic neuroendocrine malignant tumors that were left in the remaining half of her pancreas. If we are able to find out the cause of her pancreatitis and stop it, she and her husband Tyler will be able to start fertility treatments and hopefully have a child together one day soon. Alex has remained extremely upbeat, faithful, and lighthearted throughout this diagnosis and reoccurring surgeries. She knows it can ALWAYS be worse. We have no doubt she will continue to keep her spirits high in the years to come and surgeries to follow. Thank you from the bottom of our hearts for your prayers, kind words, and support. Love, Michelle (mom), Richard (dad), Christian (brother) and Tyler (husband)