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Mar 5, 2019 Latest post:
Jan 17, 2020
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. In August of 1998, we received the unsettling news that I was diagnosed with a rare disease of the bone marrow (which acts as our blood producing factory). The disease is part of a little known group of "orphan diseases' of Myeloproliferative Neoplasms (MPN). Myeloproliferative means "increased growth of blood cells in the bone marrow". Neoplasm means "out of control growth of cells serving no physiological function". My particular diagnosis was Myelofibrosis. It is estimated that out of the United States population, about 16,000 to 18,500 people have this particular diagnosis. in essence these extra cells caused by cancerous stem cells create a fiber material in my bone marrow which damages my red blood cells, leading to several symptoms, including anemia, fatigue, etc. I was 41 when diagnosed. The good news from the first doctor was that people could live 3-5 years with the disease. We are going on 21. More good news: I have had the privilege of seeing our children grow up. I was able to practice law and support our family. Joan and I have had the ability to build a life, a family, and now we enjoy three grandchildren as well. The only possible cure is a "bone marrow transplant". None of my siblings were a match, which was determined many years ago. We elected not to go forward with a transplant given the many risks associated with transplant, and how well I did the first 10 years or so. As the disease progressed, we were part of three experimental drug trials at Mayo Clinic over the last 10 years. Drug trials are exactly that, and the one drug that helped the most was abandoned before FDA approval. I am currently on the one FDA approved drug. One of the downsides is increased anemia, which has led to more blood infusions to keep me going. Infusions (transfusions) have their own set of risks. Due the progression of the disease, we are now scheduled for a bone marrow transplant with an unrelated donor. There was exactly one match in the "Be the Match" data bank. I was to start the process next week. However, due to an unexpected illness (RSV and pneumonia), the transplant has been delayed to April. it will be conducted at the University of Minnesota Hospital. It is a 100 day process at best. Part of the time I will be in hospital, and part of the time I can recover at home, with many visits to the clinic. Joan will make periodic updates to this site, and you are invited to register to be part of the conversation. We will post this link on Facebook. I intend to unplug from the web as much as possible, but if I am up to it, I will make some posts on this site. My work emails will be routed to our Operations Manager Cindy Hystad at our law office. Melissa Porter will assume my managerial duties at Shapiro & Zielke, LLP and already has done so. Melissa Schwan has assumed my managerial duties in our Title Insurance Agency, First Financial Title. We make this announcement on "Rare Disease Day", which is meant to increase awareness of these rare blood cancers. Please follow my story. We of course are working for a successful outcome. Many people have already sent messages of support. I cannot thank you enough. Please keep my family in your thoughts and prayers. This is hard on the family too. They will also need your support. Thank you. Larry