November 25, 2014

Winter is Here! And a Scott Update

Winter has officially arrived!
The kids were beyond thrilled to play in the snow again. I am not a huge fan of snow, so I usually snap pictures right from the back sliding door (sad, I know- I need to do better!)

 They do look pretty darn cute in their marshmallow getup! Love it! :)

Updates with Scott: We met with his neurosurgeon last week and he couldn't believe how great he is healing as well as growing. He wore the same pants he wore home from the hospital and they were like 3 inches too short- so funny. 
I guess the tumor Scott has is even rarer than they said because when they told us they saw one of these types of tumors once every 5-6 years, they were talking about what they THOUGHT it was based on the MRI. Now that he has seen it with his own eyes, and biopsy came back saying it is a ganglioglioma- that's even more rare than the first. And they hardly ever ever see a ganglioglioma in the brain stem. Primary Childrens is an amazing hospital that sees people from all over the country and our doctor has only seen one of these types and he was able to remove it because it was on the spinal cord. I guess the spinal cord has less risks than the brain stem. With ganglioglioma the doctor explains it to us like a hand with fingers spread out. The hand and fingers are the tumor, and between each finger is good brain tissue but there's no direct line to differentiate the two. So with the spinal cord surgery he did, he took out the entire circle around, and the parts between the fingers (the good tissue) is just what you give up to be tumor free- the highest risk being paralysis. You can't attempt this with a brain stem tumor because even just a piece of that (in between the fingers) and the patient never wakes up from surgery. So we will never attempt that. We are happy with Scott just the way he is....healthy and happy. 
So we are all just taking it day to day just because we don't really know what to expect from it all. The good news is that our doctor says he shouldn't have any risk of epilepsy or seizures because of it's location. The biggest risk for Scott is Hydrocephalus which is water buildup in the brain from the tumor blockage.  If that happens he would need more surgeries and a shunt system to redirect fluid from the brain to somewhere else. The next MRI is predicted to show little if any growth and the plan would be to just watch it closely with MRI every 3-6 months to make sure there's no water buildup and no growth. Like I said we are just taking it day to day. We need to enjoy our healthy boy every minute we get and pray that it doesn't grow and is something he can live with for 10's of years without any more surgeries. That's our hope. 

We are looking forward to Thanksgiving! My favorite holiday of the year for sure because it has my 3 favorite things- Family, Football and FOOD! :)