Langerhans Cell Histiocytosis
That is the official diagnosis right now and I am being referred to another specialist at Primary Children's Hospital. I had to look it up...just like my surgeon. I guess it is extremely rare. Here is some information I found about it. There is a lot of information on the web but this was the least scary to me.
What Is Langerhans Cell Histiocytosis? In Langerhans cell histiocytosis, certain white blood cells, called Langerhans cells, grow out of control. In a healthy person, these cells help defend against infection. But in histiocytosis, the cells multiply so quickly that they build up and can damage the body instead of protect it. Except for their rapid growth, the cells are normal. This disease is not cancer. But it is similar. Doctors who treat cancer and blood diseases also treat histiocytosis.
Some people with the disease have excess cells and damage in only one site or organ in their bodies. Others have excess cells in many places throughout their bodies. The bones are the most common sites of damage - mainly the bones in the skull but also in other places, such as the spine, arms and legs. This disease can affect many body systems. About 80% to 90% of children recover from this disease with treatment. Sometimes it goes away slowly on its own. It can be serious, even fatal in severe cases. It can also come back later in life.