Well we are safely back in the Northwoods after a long week. We have a care plan for KP and we have learned a lot. 
As we found out this week, KP's tumors are not cancerous and his neurology team was able to figure out what is happening when he looks like he is having a seizure. They do not plan on operating unless something changes or his tumors grow, so he will need an MRI every couple of months for awhile to keep close tabs on them. 
The diagnosis we have from Mayo is a Severe and Persistent Migraine Headache condition. He has had a "perfect storm of events" for this to happen. I had never heard of this until his neurology team started to talk about it (and I like to read medical journals for fun, so I have a lot of medical background as a hobby and self education).
There are a whole bunch of little things that they are going to get him going on, that will hopefully relieve the headache he has had for 3 months and then use preventative tools and techniques to keep them under control. KP has never had headaches so this is a fairly new phenomenon for him. He has had many TBI's and concussions and they think that can be an attributing factor in how this health condition has gotten so extreme. 
They ran many tests to figure out the seizure episodes he is having. They technically are not a seizure. Seizure (i.e. epilepsy)  is too much electrical activity in the brain and each one can cause additional damage. They were able to monitor him through several and while it looks scary and like a seizure it is his brain and body shutting down because of the pain overload.
So this is really good news, but does not really help the condition right now, or the pain. The episodes he is having are actually what they call "pain incidents." They last for 3-7 minutes. When he comes out of one he is very tired and can't remember anything at the moment. 
This will be a long road. They have him working on a health journal so we can figure out what foods, sleep patterns and medicines (and diabetes controls) actually work. 
Pain killers of any type are actually causing what they call a "blow back headache" which means that it rebounds and actually makes the headache worse. They have a certain way they use a couple of different meds throughout the month that will hopefully help when it is acute. 

We have  a long health road ahead of us, to help get KP stabilized and feeling better. There is something to be said for knowing the devil we are dancing with, though. 

KP had an interesting perspective at the end of this week. He has spoken with a lot of dying and suffering people in the last few weeks that we have been at Mayo, on and off. Even though he is going through a really agonizing medical condition, he has the ability to get better and live a long life- for that we are both so grateful. 

KP wanted me to say thank you to everyone for your prayers and all the folks that have sent cards, called or reached out. We both appreciate the support, prayers and love and are so grateful for the wonderful people we have in our lives. 

So I sign off for now with better news than at the beginning of the week. But chronic pain is a hard sentence to be given. KP is still really struggling with a whole lot of agonizing pain in his head, so praying for some relief for him soon and that all the little things start to add up to give him relief. 

We will keep you posted as we go. Thank you again for all the prayers, love and support- it has helped both of us tremendously as we have gone through this process. 

-Margot