update

OK, I know I have not posted here and have been putting short updates on face book. So I will try and catch things up,
1. couple of weeks ago we had a wonderful Disney weekend thanks to family and friends and my extended family, you know who you are. I was told that the last 2 tumors that were left to pull out would probably kill me so they said the first would be in about 5 days. So we loaded up and went to Disney and had a blast. Made it thru the whole weekend and as promised on Sunday night I had my first episode. It was bad, I don't remember much of it. I was layed up the next day in very bad shape , heart went nuts, breathing went nuts and my eyes and feeling in my legs yeah was not happening. Tuesday  morning I have another one,just as bad. I finally get scanned on Thurs and one tumor pulled out. Yeah but the other moved closer to my brain stem. Since that I have been having all kind of issues, insomnia, vomiting,muscle twitches and some eye problems. This all did great things for my balance. But I evened out and my white count stabilized. Things were looking better, and then....
2. I had a couple episodes that were different as in the pressure in my head was excruciating but moving from the base of my skull suddenly to the front of my head. Not a pleasant feeling. Then my breathing got weird, as in I would stop for a short time during the episodes. The is getting worse , to the point that the doctors are calling in favors from other doctors to see what can be done.
3. I am left with waiting for the docs to figure something out. The tumor is moving in deeper to the brain stem. So how do you treat it with  out killing me in the process.
4. Decision made. Gene therapy worked in the past. I have 5 tumors left and the only on attached is at the brain stem. Due to the complications getting worse the decision was made to try the gene therapy again. Now injecting the 4 in my head, easy, open the bolt in my skull, reinsert the ICP catheter to adjust pressure while the inject the therapy. Now the brain stem is different, that tumor is very active, moving and growing, So...
5. how to harvest without putting too much pressure on my brain stem. Today I had the harvest done in a way I would not have thought of but damn if it did not work. They made a tiny laser incision in the front of my neck and threaded the camera and biopsy tool to the back of my neck,up my neck or rather spine and into the tumor. It worked! All the pressure was mostly in the front of my neck where they were shoving the instruments so their was not enough pressure built up to cause a shift or move the tumor. Thank GOD for that miracle, so here I lay with a bandage on my throat and unable to talk above a whisper. Eating will be fun for the next couple of weeks. Only bad thing is I am sick and was on antibiotics a day prior to the procedure today. So we don't know how good of a strand will be made.

In 2 weeks it will be ready to inject fully into the 4 tumors on the top of my brain and the plan for the brain stem is to go through the neck again and inject a little at a time over a couple of weeks in hopes of the tumor separating from my brain stem with the least amount of damage as possible. It will be tricky and have to be monitored closely for its progress. But with a lot of luck and another miracle it will work and in 90 days give or take i can say remission.

Hopefully this brings everyone up to speed. I plan to work during this for as long as the office will have me. I have a lot of payback to make good on. If any part is confusing or out of order let me know. I should know better by now to not do this while I am medicated, anyways that is the jist of things. Yes it is a long shot but I never make things easy so,why start now. The breathing is my main concern right now, it gets a little dicey when I do sleep. But the tumor is causing some major insomnia. Love all you guys who are fighting and praying with me. I will post again after the next procedure.