Anton's Story
In November 1998, 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.
This doctor was more 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; our doctor had seen the disease once 25 years earlier as an intern and knew that rapid diagnosis and treatment was critical.
The 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 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 1999 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 the central nervous system, and it can continue to cause damage long after external symptoms have disappeared. Anton was very small most of his childhood, but he caught up in height with his peers in adolescence. However, the disease or the chemotherapy made school difficult.
Fortunately, Anton has come through his experience with a determination and empathy for others that has served him amazingly well in life. He persisted mightily in college, proudly graduating from the University of California at Santa Barbara in 2024! 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.
