By Leisa Greathouse

Most of you can relate to what you are about to read. If you cannot, then just imagine yourself in this situation. Your child has been diagnosed with a rare disease. A rare disease that sometimes children will survive and sometimes they will not. A nightmare! Immediately, feelings and emotions rush in and chaos ensues. It’s the kind of chaotic situation where one waits, if not anticipates, Superman crashing through the door with his red cape fluttering behind him to “save the day.” Not just the day, but also your child.

Hi, my name is Leisa Greathouse. Doctors at UNC Children’s Hospital diagnosed my son, Samuel, with a rare disease called Langerhans cell histiocytosis (LCH). Histiocytes are white blood cells, which we all have, but instead of protecting a person from disease and infection like white cells are supposed to do, Langerhan cells attack healthy organs, such as lungs, liver, skin, bone, spleen, GI tract, and central nervous system. Samuel was treated with chemotherapy and other drug treatments for 16 months, until he passed away in 2007 at the age of two.

More than 10 of those 16 months were spent in the hospital. During those 10 months I held my son, I fed my son, I slept beside my son, I bathed my son, I played with my son, I read to my son, I prayed with and over my son, I watched my son’s temperature go up and down, I watched my son’s heart rate go up and down, and I waited, and waited, and waited. And every time the hospital room door opened I expected Superman with his red cape flowing behind him.

Then I would remember, “Oh yeah, Superman is a fictional character.” But, you know that there are Superman-like individuals working in the medical field wearing white lab coats instead of red capes, and at any moment that person, a medical researcher, appears at the door and says, “I’ve got a cure!” To you, that medical professional is Superman.

It doesn’t quite happen that way, does it? But the hope lingers and those feelings of a sudden cure for your child remain. They have to! This is your child! There is that part of you that has to believe in Superman. So, when you find out about an advance in medical knowledge regarding your child’s rare disease, Superman feels down the street; on the way to your house, or hospital room, to “save the day.”

Such an advance in medical knowledge appeared in an article published by the medical journal Blood in September 2010. (An abstract of the article can be found here.) This article proposed that Langerhans cell histiocytosis is a cancer. Whether or not Langerhans cells are a cancer has been debated for quite some time.

Recently, the Histocytosis Association of America (HAA) provided a link to a commentary on the article that Blood published. The reason for the commentary is because when the article appeared, it stirred a lot of emotion among the community, mainly families, who are affected by Langerhans cell histiocytosis (LCH). It was that feeling of Superman coming in to save the day. Such excitement begets talk that often seems to lead to misinformation. The commentary settles those chaotic emotions, and still allow parents to remain on the path of hope that Superman is in the lab experimenting so that one day he or she can save the day.

The commentary provides an understandable explanation about the larger article. It does not confirm or disavow the article. It does what it needs to do—it explains exactly where Superman is and how far away he is from arriving at your doorstep.

With permission from HAA, below is the excerpt from their January 11, 2011, E-Newsletter that contains a link to the commentary about the article, Recurrent BRAF mutations in Langerhans cell histiocytosis.

The article “Recurrent BRAF Mutations in Langerhans Cell Histiocytosis” was published in an issue of the medical journal Blood at the end of 2010. There has been much discussion of this article within the histiocytosis community. This commentary is presented in response to the many questions surrounding the publication. The Histiocytosis Association does not have access to or copies of the publication.  This commentary is available on our website.

By Leisa Greathouse, advocate