Dominic Diagnosed with HLH

My amazing son Dominic is only 11 yrs. old and in 6th grade. I also have a beautiful daughter Samantha who is 14 yrs. old. We currently reside in Deltona, Florida. Dominic has always been a very healthy child who loves his family, the outdoors, enjoys video games and wrestling. He also loves throwing the football with his dad. At the start of spring break in April 2014 Dominic began running a high fever of 104.9. I was giving him Advil which did bring the temperature down. However, the fever persisted for 2 additional days. We decided just to be safe we would take him to be tested for the flu. The doctor suggested for us to take him to have lab work done. After completing the labs, the results showed alarming results. They immediately had us bring him to Arnold Palmer Children’s Hospital in Orlando, FL. After several additional tests, a Bone Marrow test was performed to rule out Leukemia. After performing this test twice, Dr. Sutphin was able to rule out the possibility of this being Leukemia.  We were so thankful but,  Dominic was still showing no signs of improvement. We made several more trips back to Arnold Palmer over the course of the next few months. The end result was that my Dominic, was diagnosed with Hemophagocytic lymphohistiocytosis, otherwise known as HLH.  “In patients with primary HLH, cells of the immune system, principally T cells and NK cells, don’t work properly to destroy infected or damaged cells as they should.  Because of this, the immune system becomes overstimulated and over activated.  The immune system then begins to damage the patient’s own tissues and organs, including the bone marrow, the liver and the brain.”  http://www.cincinnatichildrens.org/service/h/hlh/about/   We are now headed to Cincinnati, Ohio to begin the treatments to make him well again.