I realize that I haven't updated in a while. Well, I'm tired and I don't want to even think about updates. But here I am. For those of you that actually check the blog and don't already have this info. here goes. After the "good" news from the CT surgeon we went for a routine follow up with the genetics Dr to discuss Sydney's NF1. She did NOT agree with his opinion and suggested we get a second opinion. She felt that we should be aggressive and get the tumor out before it caused any problems. So off we go to Cincinnatti Children's to meet with a leading Spinal surgeon that specializes in this type of tumor. His exact words were "enjoy her while you can", talk about devestating. He said that the tumor is too involved and would definitely cause problems if they tried to remove it. Surgery is NOT an option. That's bad news when you know that surgery is the ONLY option. So he refers us to the NF clinic there. They have a great program, one of the largest in the nation. This will be much better than trying to piece things together here. We have since met with the NF team and again have hope! They have a better outlook than the other Dr. But the disease is SO unpredictable we just don't know what to expect. The plan for now is to have repeat MRIs and a PET scan. If there haven't been any changes then we will again just wait and see. If there have been changes then they will probably place Sydney in a clinical trial aimed at stopping the growth. Yes, this involves experimental drugs.
So there's the update. Sydney is doing great! She continues to amaze us! Our 6 month anniversary is coming up! Sydney does well with routine(I guess we all do), so I'm trying to keep life LOW KEY and consistent. I miss Louisiana. NO PHONES, NO COMPUTER, NO DOORBELLS,and NO DOCTORS! If you've made it this far, thanks and keep praying. God is bigger than this tumor which by the way is described as HUGE.
