My 41 year old daughter was diagnosed on Dec. 20 with NF 1. A tumor extends from her neck along her spine to the middle of her back. It is causing multiple challenges with balance, strength, walking, pain, etc. She will be having surgery from C4 to T2 with a third of the back of the vertebrae removed, the tumor compressing her spinal cord removed, two titanium rods with screws put in. There is more than a 70% chance a nerve going to her left arm will be cut as the tumor has encased it. That damage will be permanent. she will wear a back brace for 6-9 months, and with bone growth stimulation, her back should fuse into one big bone.
We are believing that she will be back to her normal lifestyle next fall, riding horses, driving her 6 and 11 year old sons to school and sports events, hunting elk for family food, and going to the river with friends. Our family and friends are supporting her in any way possible that she needs. All I ask for is the strength to maintain that positivity no matter what happens, no matter what the outcome is. We are all in this together. I ask for you to not just think about Nikki, but about all the children and adults challenged by neurofibromatosis, all those people challenged by traumas and abnormal cells and life's challenges. I love you all.
"A positive attitude may not solve all your problems. But it will annoy enough people to make it worthwhile." :-)