Anton's story

In November 1999, shortly after his birth, 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 had also appeared. While our pediatrician was not overly concerned, the persistence of the rash led us to see 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 seen the disease once before as an intern and knew a rapid diagnosis and treatment was critical.

When Colleen heard the news she was devastated, and called Ron in tears from the doctor's office. Ron picked up the message as he stepped off a plane, and immediately returned on the next flight. At home that night our family joined us and together we prayed for support through this sudden turn in our lives.

Our doctor set us up quickly with the experts at the Stanford University. The head of the Pediatric Oncology and Hematology Department was aware of the disease and current research on 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.

We were 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. Our emotions see-sawed as Anton's rashes spread or receded. With God's support we made it through one day at a time.

His rash spread over most of his torso, and many lesions formed on his head. In February of 2000 the disease seemed to surge forward, and we became very scared 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, and Anton has been in remission every since. We still see signs of the disease occasionally - a reoccurring strange rash on his bottom and crusty lesions on his scalp. Health-wise he seems to be in good shape these days, and he is finally starting to noticeably grow.

There have been some repercussions from either the disease or the chemotherapy treatment. Anton is still a small child, down in the bottom percentile for his age. His development seems to be about a year delayed in all aspects - social development, cognitive skills, speech. We are concerned he will have some learning difficulties as he grows. The disease or chemotherapy seems to have damaged his tooth enamel also. He recently went under anesthesia to have 12 cavities filled, and another two six months later.

The tremendous care he received as an infant from so many has helped him to develop into a wonderful, kind and loving child. He interacts very well with adults, and is so brave when we go in for various doctor appointments. We know each day he lives with us is precious, and we are blessed to have him in our lives!

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