Suzie’s ‘great adventure’ began in September 2006 when we learned she was suffering from cancer. At first we believed that she was suffering from Chronic Myelogenous Leukemia, a disease that is manageable with medications. A month later we learned later that this diagnosis was based on a ‘false positive’ reading for the Philadelphia Chromosone and that she was suffering from Idiopathic Myelofibrosis, a rare cancer that affects two in one million people for which there is no known cure. The disease is so rare, and Suzie's condition was such, that we were referred to M. D. Anderson, the country's leading Cancer Center.In November, doctors at M. D. Anderson confirmed this diagnosis and described the plusses and minuses of the clinical trials that were available to her. Suzie enrolled in a trial designed to test the effectiveness of a derivative of Thalidomide in the fight against this disease. She began treatments in January 2007.In March, Suzie contracted a severe case of pneumonia. This event weakened her so much that she now needed blood transfusions to maintain life. She withdrew from this trial to rest and to pursue other trial options available to her. She chose to undergo a bone marrow/stem cell transplant, her only real chance to eradicate the disease from her system. The procedure was scheduled to take place in June.In May, however, surgeons were forced to remove her spleen. It had absorbed the bulk of the twenty pints of blood Suzie received during April to help combat the cancer and, in the process, grew to be as large as a basketball. Her prognosis was day to day. When she left the hospital she was extremely weak and 40 pounds lighter than six months earlier!The stem cell transplant took place in late August and Suzie's recovery began. Although she suffered a brief bout with Graft Versus Host Disease, aka rejection, she did so well that she left the hospital, and we left Houston, two weeks earlier than anticipated! Doctors in Houston and in Knoxville referred to her as ‘their miracle’.Suzie's recovery continued until late January when bacteria bypassed her suppressed immune system and she contracted a life threatening case of pneumonia. Quick work and strong medications, including steroids, saved her but she was on oxygen and in a weakened state when she returned home. As time progressed, she grew weaker and lost more weight. Her wrists began to swell and turned very red.By mid-April, she was no longer able to use her hands and she now weighed less than 100 pounds. We returned to M. D. Anderson and learned that the host/donor relationship had not changed since last November and that the cancer was under control. We also learned that she was fighting another case of graft versus host disease. Doctors added a heavy dose of steroids to her medication regimen and, by the end of April, we saw a great deal of improvement: she weighed more than 100 pounds, her energy had returned, the swelling and redness in her wrists was gone and she regained the use of her hands.In mid-May Suzie began losing strength in her legs and doctors decided to taper her off the steroids in rapid fashion. By the 23rd, she was unable to get to a standing position without help. Her weight dropped to 85 pounds. On the morning of the 27th she was nearly comatose and, once again, we rushed her to the hospital. Her blood work indicated that her potassium was dangerously low and that her glucose was dangerously high. She was now fighting steroid induced diabetes, a condition we were told could become permanent. The treatments she received worked and Suzie returned home in early June. She is still on oxygen and is undergoing physical therapy to regain the strength she lost in her legs. On the other hand, she is gaining weight, her potassium levels are normal, her glucose has settled into an acceptable range, her energy is returning and her Oncologist is optimistic that the diabetes is a temporary condition that will disappear once the steroids are out of her system.
