January 2019 Update: Loren was 2/12 years post transplant and at a routine checkup at Sloan Kettering when Dr Boulad told him his disease had returned. It took a few days to gather the information together, but the red blood cells, white blood cells and platelets were very low and the blasts, that caused the trouble 2 1/2 years ago, had returned. The chimerism test showed 88% donor and 12% Loren. I will start journaling in Loren’s CaringBridge Page from here. How this story started is below. It started in May, 2016 with a minor cut finger that became very painful and swollen. Loren had just completed his first semester at the University of Wisconsin, Milwaukee. Two years earlier, Loren had moved to Milwaukee from Iowa City to live with a group of friends. Loren soon learned that his bone marrow had failed and he was no longer making red blood cells, white blood cells, or platelets. He was 24 years old, and this is very unusual for someone his age, so doctors did more tests and found that Loren has a genetic type of bone marrow failure called Fanconi Anemia (FA), type A. His bone marrow had developed MDS, and was in a stage called RAEB-2. The only cure is a bone marrow transplant, and it is urgently needed because in people with Fanconi Anemia, MDS soon becomes full leukemia. FA causes all of Loren's cells to be fragile and unable to repair themselves when damaged. That makes it vital for Loren to be followed and treated at a Fanconi Anemia Center where all the staff have experience with these patients. It's a long story how we ended up going to Memorial Sloan-Kettering Cancer Center, but it became clear after a lot of prayer it was where Loren needed to be, and it's good to be here! (written by Loren's Mom, July 2016)
Mom's Update March 29, 2017: Today is Loren's 25th Birthday! He had a second birthday - July 29, 2016 when he received a "MUD" (matched unrelated donor) stem cell transplant. Because of his genetics, he had low-dose chemo without radiation before transplant and the donor stem cells had lymphocytes removed to protect Loren from Graft vs Host disease. Today he is 8 months post-transplant and back living in Milwaukee near friends and the university of Wisconsin Milwaukee, where he plans to finish his degree in conservation with an emphasis on microbiology. We celebrate!!!