Our son, Trip, was diagnosed with LCH in January of 2011 just before his 3rd birthday. We had been treating his "cradle cap" for almost a year with no improvement when we finally demanded a biopsy. When we got the news that changed our lives forever, we felt like the doctor was speaking another language to us.
Langerwhat? Histiowhat? Thank goodness for histio.org! He has skin, gum, ear, bone, and CNS involvement (which resulted in DI). His port was placed immediately and he received his first dose of chemo. He was put on the standard treatment protocol at the time, but as his outward symptoms improved, the disease was spreading like wildfire inside his defenseless body. We tried four different treatment plans until we found one that worked for him. We got the news in March of 2013 that there was no active disease in his body, so we were thrilled to be able to stop chemo… temporarily. In August of 2013, symptoms began to reappear and we had to start chemo again in September of 2013. We are still fighting this terrible disease, but we are also thankfully watching a little boy thrive in kindergarten.
My need to connect with other histio families is great and one that I want to use to help others if only to be an ear to listen or a shoulder to cry on. When the person who hosted our first local Circle of Friends group decided her time and gifts could be better used elsewhere with the Histiocytosis Association, there was an opportunity for me to step up and reach out to others. I am grateful for the chance to facilitate a place of comfort and support for kindred spirits through the Histiocytosis Association's Circle of Friends program.