Good Morning- My 9 years old son was diag. with NF2 and Meningioma 2 in July. He was diag. after undergoing 2 emergency surgeries. Prior to surgery the M2 tumor had done so much damage by wrapping around his T5, and T6 spine, causing paralysis. After surgery the neuro surgeon was concern that he would not be able to walk again. However, with enough prayers he regained feelings in his legs and spine. Not only is he able to sit, he is now walking in a walker. Here's where I need your help. I value one doctors suggestion but, I don't feel to confident in anothers. We have been hospitialized since July 9. One doctors main concern is REHAB and the other surgeons, as well as my concern, is the tumors. Back to surgery...because, the tumor created such damage, they were unable to completely remove the entire mass therefore, residual tumor was left, and also they discovered droppings in this lower lumbar spine which, is undetermined to be either M2 or Swanoma's. Currently my son has undergone radiation for 6 weeks everyday, and now that his treatment will be finish in 2 days, the doctor I don't care for, is excited to have him start REHAB ASAP...however, he has not discussed a treatment plan for the remainder tumors. I told him I am not ready for REHAB until we have a family to discuss his underline condition and possible options. I feel like once we are out the door, my son will be forgotten about. So, I need some help with questions to ask. Life expectancy, and will constant MRI's solve the problem, if so, what happens if the tumor grows in between MRI's and wrap around his spine, will radiation be enough or will another surgery....As always, he will say lets not jump the gun...but, how can I not think ahead. Can someone please assist me with some suggestions and recommendations...before Tuesday.
Concern Parent Advocate