London's Story: Neuroblastoma and LCH
I am writting this to tell my daughters story with neuroblastoma and LCH to help others searching the web for information and also in the hopes of finding others who have had both LCH and neuroblastoma. Currently I was only able to find one case study in India with an infant dx with neuroblastoma and LCH- but it was a different kind of neuroblastoma(4s). First let me tell you about our family and my daughter London. I will catch you up to where we are now, March of 2013. London is 22 months old. She is a beautiful, funny, highly active little girl! London's days are spent at home with mom, playing, reading, taking walks. She loves animals, painting, playing playdough, "cooking", listening and dancing to music. Her favorite show is Mickey Mouse Club house, and her favorite movie is Finding Nemo. She is her daddy's princess. She is the youngest of 6. Her oldest brother is Aj, followed by her brother Cullen, then her sister Jordynn, her sister Madison, and her brother Nolan. London was born on April 23, 2011 full term, with no complications. She has always met milestones if not advanced them. She speaks in paragraphs, can tell you shapes and most colors. Throughout all she has already been through she continues to advance with no setbacks. Her story with Neuroblastoma and LCH actually occured accidently. London is known as a "mystery". I believe in prayer, I have a lot of faith and I know GOD has played a hand in all of this. I think first I will explain what Neuroblastoma is and what LCH is. The definition is coming from the American Cancer Society. Neuroblastoma is a form of cancer that starts in certain types of very early forms of nerve cells found in an embryo or fetus.( The term neuro refers to nerves, while blastoma refers to a cancer that affects immature or developing cells.) Cancer in general begins when cells in a part of the body start to grow out of control. Cancer cell growth is different from normal cell growth. Instead of dying, cancer cells continue to grow and form new, abnormal cells. Cancer cells can also invade other tissues, something normal cells can't do. Growing out-of-control, and invading other tissues, are what makes a cell and cancer cell. LCH ( langerhans cell histiocytosis)-is a very rare disease involving clonal proliferation of langerhans cells. Basically from what I understand we all have these langerhans cells-named after man who identified these cells(they look like tennis rackets under a microscope)-they sit in one of the layers of our skin. It is a type of a white blood cell. These white blood cells come out before they are mature and start to "stick " to one another and clone(make more). So basically you get a cluster of white blood cells which can just show up any where in your body(they are made in bone marrow).-which is very dangerous. There are a few different types, unifocal(one spot/system) Multifocal unisystem(skin, bones, pituitary stalk), and multifocal multisystem(many places organs,etc in body involved). Although it is under debate whether this is a blood disease or a cancer, it can be treated like a cancer with chemo depending on which type/category you fall into. You will need to remember this to understand how this was all found on London. This is so rare this LCH, there is a society composed of physicians and scientists around the world trying to gather information and study this disease. They are called the Histiocyte Society(nonprofit organization of more than 200 physicians and scientists from around the world committed to improving the lives of pt's with histiolytic disorders by conducting clinical and lab research into the cause and treatment of this disease.) I have seen many childrens stories and youtube videos from physicians talking about LCH. But there isn't anything on LCH along with neuroblastoma. There is a theory that LCH is brought about from an auto-immune response to signal/notify that the immune system is going haywire signaling "danger", to alert of another cancer in the body. Which may be what was happening to my daughter London.
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