Hemophagocytic Lymphohistiocytosis (HLH)

HLH is an immune disorder than can be classified in two types of forms, the familial form or the reactive also known as acquired form. Familial HLH is also known as FHLH while the other is mostly just known as HLH. Familial HLH is usually the result of a genetic issue while HLH is a reaction that your immune system had to a virus or other type of source such as Juvenile Arthritis. You can learn more about both on
the following website www.histio.org.

My 11 year old son was diagnosed with the reactive form in December of 2009. He is in treatment for it which consists of steroids, immunosuppressive therapy and can involve chemotherapy. The only actual cure is a bone marrow transplant. Julian is in medication induced remission and the hope is that when he is done with his treatment that he will remain in remission.

A very simplistic description of this disorder is that the person gets a virus or an illness and the body develops killer cells to destroy the virus. Once the virus is gone, the body no longer needs these killer cells and gets rid of them. If the body can't get rid of them, they eat away at the body. That is the case with HLH, these killer cells take over and attack organs and bone marrow. Since the bone marrow is attacked, it affects cell production. This is the reason that Julian's platelet count dropped.

When Julian was in a coma, I often thought to myself "I just want to hear him say mom again", "I just want see his smile". So many thoughts like that ran through my head. I can't put into words how awesome it is that Julian is playing basketball and his recent report card is all A's and B's. I will never take for granted hearing him say "mom" again and I find that the sounds of his voice or his kisses on my cheek are like heaven on earth.

Today, Julian hung out with his friends, played video games and is now watching TV while laying on my bed. Life is how it's supposed to be.