A Langerhans Cell Histiocytosis story

In August of 2015 my eight year old Son was complaining of severe neck pain. I took him to the doctors many times and they said maybe Growing Pains anywhere to viral meningitis he was tested through a spinal tap and it came back with negative and she white blood cells in the fluid. He still persisted to have severe pain in his neck to the point where we thought he had broke it. He was transferred to Lucile Packard Children's Hospital in Palo Alto California where he stayed a year. during that year his neck had collapsed and on the MRI it showed what looked like to be a tumor they went in and biopsied his neck it came out inconclusive because the bone was eaten away and they almost hit his spinal cord and bracing was not helping him so he went in for emergency surgery just screw into his head six different places to put a Halo on for half a year. This is what required us to stay for half a year and RMH which is the Ronald McDonald housing just in case he fell he would have to go into spinal surgery. We still had no idea what was doing this to our son we had to wait until his back collapsed in the L1 L2 area. Couple months later this happen they went in biopsied and it came back positive for lch during his time he developed what they thought was bedsores we think was lch in the skin and on his head very painful keep in mind. He was back braced and sent home for a year of chemotherapy and steroids. He missed a whole year of school until this day suffers from the effects of lch.