14 and struggling with the truth. What is it really that I have? can you help me?

Hello, my name is Brianna. I am fourteen in grade nine and for the past four years I have had multiple surgeries because of tumours all about my head. I have one large one that just won't go away on the right side of my head and several on my gums. theres also one on the middle of my forehead, and on my chest. My doctors here in toronto at the sick kids hospital for sick children have confirmed that they are not cancer but multiply like they are. I'm so overwelmed by what they tell me. They currently have practicly pushed me away by making my next oppoinment in october! They have also confirmed that I will probably make the medical books for a new illness. I don't want that. I want too know what is wrong with me. I wan to be able to go to school for the whole year and not take 2 months off for surgery and tell my friends i'm going to Nova Scotia. I hate it. And now the O.H.I.P. is trying to approve me too be sent to a hospital in the states to be rediagnosed and examined by different doctors. I feel like a lab rat! please tell me you have heard of this before because any good news too me would really help. I sometimes just wish I could go too sleep and never wake up again. My life is like an obstucle course. I wanna be every definition of 'normal'. I don't wanna be suffering with nausea, and migrane headaches because a doctor doesn't understand "me". and even now my mom thinks it may be a rare stage of "puberty" but i don't believe these will ever go away. She also wants me too have kemotherapy but I don't wan too loose my hair. my hair is soooooo long and thick. and it grows very slowly. it would take on average 6 years to grow back too this length. and atleast 3 to get back too my shoulders! please i know this is a l-o-n-g plea for help. but can you, help me? please.
Brianna