This morning we drove to Children's Healthcare of Atlanta. I was very pleased that we got to see Dr Andrew Reisner which was unexpected. Dr. Reisner looked at Manny's MRI disk and within a few minutes said "Ok. Take a deep breath. This tumor is not exactly something that I am going to get really excited about." It was a nice first thing for him to say.
Dr. Reisner feels that the spot on Manny's thalamus is more than likely a neurofibroma due to Neurofibromatosis (NF) possibly Type 1 (NF1). He feels like, although it needs monitoring, that it isn't yet time to do surgery or begin treatment. That was totally unexpected, and good to hear... I think. So he has a brain tumor... and we just leave it there... and watch it....
But what about Manny's symptoms? Dr. R ordered another MRI, this time of the brain with contrast as well as an MRI of the spine. I "think" (it was a long day) that he suspects another tumor on Manny's spine. The MRI has been ordered to be done in the next couple of weeks, this time in Atlanta, probably at Scottish Rite hospital.
Dr. R was very interested in what I had to say about Phelan-McDermid and said that he wants to be given the results of the genetic testing ASAP (when it is done, of course). He also gave Manny a preliminary diagnosis of NF1.
I'm trying to feel better. I guess the good news is that we do not have to do surgery or begin radiation immediatly. The down-side is that we probably eventually will, and that its looking more and more like Manny is going to have problems his entire life. It is a lot to take in.
Tomorrow is the party. I can't think of a better time to be surrounded by friends.
