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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, lungs, liver, spleen, gums, ears, eyes and/or the central nervous system and brain. The disease can range from limited involvement that spontaneously regresses to progressive multi-organ involvement that can be chronic, debilitating, and life threatening.
In some ways, histiocytosis is similar to cancer and has historically been treated by oncologists with chemotherapy and/or radiation. The vast majority of people diagnosed with histiocytosis are children under the age of ten, but it is also found in adults of all ages.
Histiocytosis affects roughly 1 in 200,000 children born each year in the United States. Histiocytosis is so rare that it is known as an "orphan disease", historically meaning it strikes too few people to generate government-supported research. Funds raised by events like Hike For A Cure and with the support of the Histio Cure Foundation have significantly changed this equation in recent years. For more information on histiocytosis click here.
In November 1999, shortly after his birth, our son Anton developed a stubborn rash on his bottom that seemed to defy the normal treatments that had worked with our other children. A few wart-like pimples on his forehead at birth also started to spread. While our pediatrician was not overly concerned, the persistence of both skin issues led us to see a pediatric dermatologist.
The doctor was somewhat concerned and immediately took a biopsy. A few days later we were devastated to learn that Anton had a very rare and potentially fatal disease known as Langerhans cell histiocytosis (LCH). In a sense, we were lucky to receive a correct diagnosis quickly; this doctor had once seen the disease 25 years earlier as an intern and knew that rapid diagnosis and treatment was critical.
Our doctor set us up quickly with the Pediatric Oncology and Hematology Department at Stanford. The head of the department was aware of the disease and the current protocol for treatment. Anton started immediately with Prednisone, a steroid to reduce his immune system's responsiveness. The hope was that the steroid might suppress the rapidly multiplying Langerhans cells, a type of white blood cell. A few weeks later Anton started chemotherapy treatment, receiving a shot of Vinblastine almost weekly.
The chemotherapy treatment was terribly difficult on our little infant. He cried through the night, every night. Ron held him and walked for hours each night to help him settle. Anton cried throughout the day too, and Colleen held him as she tried to maintain her daily routine with our older two children. Anton stopped gaining weight and held at fifteen pounds for most of his first year. There was nothing we could really do except to comfort him and pray.
in the following months the rash spread over most of his torso, and many lesions formed on his head. We were terribly worried, exhausted and drained. And yet from everywhere friends and family stepped forward to lift us up. We had nourishing meals delivered to us almost daily, and others often cared for our older children, giving us a chance to rest. With God's support we made it through one day at a time.
In February of 2000 the disease seemed to surge forward, and we became afraid that Anton was not going to be able to beat this. We remember the look on the doctors' faces then - somber, sad. Those were our darkest days. But as spring came the disease seemed to fall back, and our hopes lifted. Finally, the day came in April when the doctor suggested we take him off the chemotherapy. It was like a cloud had lifted from around us.
After a brief resurgence, the rashes receded significantly. However he cried most days and nights for the next year. Research has now shown that the disease can persist in the brain and continue to cause damage long after external symptoms have disappeared. Anton was very small most of his childhood, but caught up in height with his peers in adolescence. The disease or the chemotherapy left Anton with learning difficulties that have always made school a tough challenge for him. Fortunately, he has come through his experience with a determination and empathy for others that has served him well in life. He has persisted mightily in college and is proud to say that he was accepted into the University of California at Santa Barbara this year!
Anton has taught us that each day of life is precious, and that we are blessed to have the love and strength that comes from being part of a community.
In 2011 a group of deeply committed parents founded The Histio CURE Foundation (HCF) with the intent of fundraising to support medical research towards finding a cure for histiocytosis. HCF is led by a group of volunteers, each impacted by histiocytosis – some as parents of histio children, others as adult histio patients. Administrative costs are covered separately so that 100% of your donations go directly towards medical research into a cure for this disease.