Tuesday, March 22, 2011

Really...Where is the silver lining?

Today was another stressful day. More phone calls....After a few phone calls from both the Children's Hospital and talking with a neuro-oncologist practitioner and also talking with our neurologist I found out that there is 9-12 different people working on Grayson's case. They all keep saying that his case is really unique. His scans have been sent to all people involved and they have met and talked over what it could be, and what can be done. 
Some things they agree on and some things they don't. But they do want to test for one possible thing that could be a genetic disorder (which I thought sounded better then cancer but if you read into this its actually not). The disorder is called Neurofibromatosis. But our neurologist said Grayson just doesn't seem to fit all the links for any certain thing just yet. They are all hoping they pick the next step just right and get things under control in time.
Even more bad news is that even if for some reason it turns out to be this Neurofibromatosis there isn't a cure for it and it doesn't change the fact that this thing is still growing and there isn't much room for it to grow without doing the damage.
So, there will be blood work done to see if its the genetic disorder, an EEG to check and see if he is having seizures possibly-this may be linked to the screaming fits that he has, and a spinal tap and also an MRI of the spine to see if there are lesions/tumors further down. 
For now we will have these things done and Should get a call tomorrow and see which of these things will start first.
His scans are also being sent to other hospitals to see what they think.
I just hope we get answers soon...


  1. hey Jess, thinking about you and the family- i know it is a hard thing to do, but try and relax and take one day at a time- the saying goes.. if God brings you to it, he will bring you through it.... keep the faith! we are here for you! and love you guys so much!

  2. sorry jess, don't know how to figure this out yet, that was miy post. i am so computer dumb... ha ha

  3. BAHA HA HA... stupid me- love your dad and Wanda

  4. Hi :) I tried to post earlier from my phone but it didn't work. Just wanted to say that we are thinking of you and your family as always. After reading this post keep in mind there are several doctors looking after this precious little boy and they don't want to see him in the "pain/discomfort" either. It is a good thing there is a team of doctors, even though they may not agree all together on certain things, there are different options that they may be working on to help little Grayson. They also are working as hard and fast as they can to get Grayson healthy. Praying for answers and your family. HH

  5. I can't imagine what you're going through. I have three kids myself (as a single mom) and I grew up in Baudette (and still reside there) as well. I really hope the best for you and your family. I'm praying my hardest for Grayson and hope that he will overcome all of this. I couldn't even imagine this happening to one of my own, so anytime I read your blog, my heart completely goes out to you.