neurofibromatosis 9 yr old son in severe pain

My 9 yr old son has neurofibromatosis and has a plexiform tumor on top of one foot also one in his sinus. He has several cafe au late and several moles that have appeared in the last year or so. He has little tumors on both shoulders mostly right under the skin. He has no litsh nodgules in the irish but he has the opposite depigmented fibers in the iris and thinning of the iris. He has hip pain and one leg bone is about 5cm longer than the other. He stands and walks with his feel turned out severly but can correct this when told to. He has just developed a tumor in his cheek I think his face stays red but this one stop will not turn red just stayswhiteand isknotted up itisin his right cheek. He has developed severe back pain right between shoulder blades on spine 3 days ago and this spot stays hot he has just tonight started with left side neck pain. This is a chils that can take a lot but has been up three times crying. How quicking does nf progress? We are going to Nashville Vanderbilt Friday to see a geneticist. And feb 9th to a neurological. What can I do to help this child rigt now? We livein a rualareawith no pediatric specialist. Please help