The Histiocytosis Association of America describes the disease:
"Histiocytosis is a rare blood disease that is caused by an excess of white blood cells called histiocytes. The histiocytes cluster together and can attack the skin, bones, lung, liver, spleen, gums, ears, eyes, and/or the central nervous system. The disease can range from limited involvement that spontaneously regresses to progressive multiorgan involvement that can be chronic and debilitating. In some cases, the disease can be life-threatening.When I was about 8 years old, I broke my arm and it did not heal very quickly. According to my mother, I suffered from a great deal of pain, and most doctors either didn't know what to do or diagnosed me with the wrong condition. Eventually, a doctor, Dr. Fry, listened to my mother's pleas for help and delved further into my symptoms. I had multiple surgeries on my neck and head, including brain surgery, to remove tumors. The doctors hoped to find live cells to determine what the disease was. Eventually, we found out I had Langerhans Cell Histiocytosis (LCH), at that time called Histiocytosis X.
"In some ways, histiocytosis is similar to cancer and has historically been treated by oncologists with chemotherapy and radiation. Unlike cancer, histiocytosis sometimes goes into remission without treatment.
"The vast majority of people diagnosed with histiocytosis are children under the age of 10, but it is also found in adults of all ages.
"It is approximated that histiocytosis affects 1 in 200,000 children born each year in the United States. This illness is so rare, there is little research into its cause and treatment, and it is often referred to as an 'orphan disease,' meaning it strikes too few people to generate government - supported research."
My symptoms included skin rashes, bone lesions (including one on my skull), generalized pain, and tumors in my neck and head area. Fortunately, I was older when the disease onset, and I was able to tolerate years of chemotherapy to keep the disease at bay. The disease is more common with babies, and often they do not survive.
As an auto-immune disorder with characteristics similar to cancer, the treatment methodology is very similar to cancer treatment: Weaken the immune system to keep the disease at bay until the disease dies or the patient "grows out" of it. I believe I was on chemo long enough to just grow out of it. Chemotherapy lasted somewhere between 6 and 7 years for me, usually weekly, with the doctors attempting to space out treatment to every other week up to once a month. At times, the doctors thought the disease was coming back and I went back to weekly treatments. I remember very little during that time.
During college, I learned that the hippocampus, the area of the brain that deals with forming new memories, can stop encoding new memories during time of great stress. I believe this happened to me, and the evidence is that I cannot recall certain events or the sequence of events during this time of my life. When chemo ended, I was a teenager in high school. My classmates didn't really know who I was because I was out sick so often (2-3 times per week when I would receive treatment).
In March, it will be 11 years since I finished chemotherapy, and I am thriving. I have no major health concerns. I sometimes think there are lingering problems from being on chemotherapy so long, or simply from having the disease. However, these are relatively minor, and do not retract from my quality of life. As my dad noted at the wedding, the doctors weren't even sure I could have children. Weren't they wrong!
During my time struggling with the disease, my mom took me to see doctors, drove me to chemo in Madison or Monroe every week, sat with me during treatments and preparation for surgery, and took care of me at home. I appreciate everything she did to help me. This entry is dedicated to my mom, Carla, my family, and everyone who helped me during that time. Thank you all so much.
Happy Birthday Mom. I love you.