Third Seizure Episode

May 17, 2010 was a very busy day in our lives. Ferrell was at home resting while I was at work getting ready for all of the end of school things I had to do. Little did I know it was also my last day at school for the 09-10 school year. The girls had cheer leading practice getting ready for the spring football jamboree the next week and I had a town hall meeting to attend at their school. We got every one's homework done while we were waiting for the town hall meeting to start at 7. We went to the town hall meeting and then went home afterwards. We got home about 9 or so and got supper which Ferrell had cooked that day(a roast) and then the girls went to bed and I got ready for bed and then was reading/watching tv. At about 12:45 or so Ferrell woke up and was talking to me when we both realized that the left side of his body wasn't working right. He kept trying to do things with his left hand but it wouldn't cooperate with him and the same thing with his left leg and foot. I talked to him for a minute or two when we both realized something was really wrong. He didn't want me to call 911 at first but our talking woke Dayna up and she could see that things were really wrong and we all three agreed it was time to call 911. Dayna called 911 and got them on the line and then handed the phone to me. I told the 911 operator what was going on and she told me that she was sending out help immediately. In the mean time I kept calling Ferrell's name because he would turn his head away from me and zone out. When I called his name he would turn and look at me and smile and say, "I'm still with you." Then in a few seconds he would drift back off. We repeated this scenario multiple times in the less than five minutes before paramedics got there. He was able to talk to the paramedics while they were in our bedroom and the four paramedics decided to take the sheet off our bed and carry him to the gurney in the hallway because it was so difficult to make the turn down the hallway to our room(our walls have the holes and missing paint to prove it). They all four got a corner of the sheet and lifted him over the couch at the end of our bed and out to the hallway onto the stretcher. Once he was on the stretcher they raised it up which was quite noisy but didn't wake up Miranda who was in her room sleeping away. Dayna had shut her door because Miranda had not slept well since the first episode and was finally getting some much needed sleep. The ambulance workers got Ferrell into the ambulance by which time he could no longer control his left side or talk. They told Dayna and I that they were going to take him to Fort Walton Beach Medical Center because he was presenting signs of a stroke. They told us not to try to keep up with them because they were going full out lights and siren. Austin got home from a friends about 1:15 when they were carrying the stretcher out side. He drove up to all the lights and stuff at the house. The ambulance left our yard at 1:30 with Dayna and I right behind them. Before we left we went in to make sure Miranda was still asleep and asked Austin to stay with Miranda so she wouldn't be scared if she woke up. I drove to Ft. Walton which is not ideal because of my eyes but nobody was on the road so I didn't have any trouble. It is the glare of other car lights that give me the most trouble when I am driving. Dayna and I got on the road and she called Rogie and Coy to let them know what was up. It was 2:20 or so when we got to the hospital in Ft. Walton. The ambulance was already gone and the nurse who answered the call button at the window told us that Ferrell was in CAT scan. Over the next 15 minutes or so Rogie and Coy arrived at the hospital. Sometime within the first 30-45 minutes after we got there, the nurse called me to come back to where Ferrell was. As soon as I saw him I knew he had had several clonic tonic(grand mal) seizures and was in the post dictal stage. The nurse told me that an on-call neurologist was going to speak with me and examine Ferrell via a tv screen while I was in there. I didn't know where this doctor was at the time but from the bills it shows he was in Birmingham, Al. The doctor had the nurse sit Ferrell up to about a 60-70 degree angle so he could see him better. Ferrell was unaware of all of this. The doctor introduced himself(don't remember name) and told the nurse to open his eyes, move his arms, use something sharp to poke him in numerous places(with no response to any of it) and then was explaining to me what I already knew that he had had another round of seizures. He was rounding off his conversation when he said, "Hold on, his CAT scan results just came in." He then went on to inform me that Ferrell had a mass and a bleed on the right back part of his brain. Of course this came with mixed emotions because all of the doctors had been telling us it would be better for them to find nothing and it just turn out to be epilepsy but on the other hand it gave us a reason for all the seizures. This was a very scary time for us not knowing what we were dealing with. The neurologist ordered another CAT scan with contrast. In the mean time they told us they were moving Ferrell to the ICU. During this day he was taken for numerous tests including an MRI without contrast and then and MRI with nuclear contrast. About 9 o'clock that night Dr. Manski came by and talked with Ferrell and I and told us what he thought was a very aggressive brain tumor and our three options: one do nothing(no an option), do radiation(not an option because it would just grow back), or to go in and remove the tumor. By this time Ferrell had come out of the post dictal stage and so he and I both decided that surgery was the only option. So Dr. Manski said he would try to schedule it for the next day which was Wed. the 19th. Now to back up a bit, after we knew what was going on with Ferrell as far as the tumor and bleed went, Rogie and Coy left and went by our house to wake Miranda and Austin up and let them know what was going on. They got there about the time Miranda's alarm went off at 5:30 a.m. She was quite surprised that Rogie was standing in her bedroom and knew immediately that something was up. Rogie and Coy drove Miranda to the hospital and Austin followed them in his car. After they dropped off the kids, they went home to get some much needed sleep. They came back late in the afternoon to let me, Miranda(so she could drive), and Dayna to go home and get some sleep so we could be there the next morning for the possible surgery. Rogie stayed in the room with Ferrell that night because he didn't really want to be left alone and we didn't want him left alone. They had him on so many different meds to prevent any further seizures that he was out of it but not able to sleep. The girls and I got back mid-morning the next day. He continued to be taken for different scans and then Dr. Manski came in about 5 p.m. to tell us it would be the next day before they could get an operating room. He again went over our options and we again agreed that surgery was the only option. I stayed with Ferrell that night and we spent most of the night talking about many different things that once again he doesn't remember. The only things he remembers from these days is getting the first MRI and then, the next day he got the nuclear MRI for which they had to sedate him because he couldn't stay in the machine. He kept getting claustrophobic. He vaguely remembers when they did the brain mapping and sticking all the sticky things all over his head and them having to shave his head everywhere one went. He tried to convince the guy to just shave his head because he shaved out spots all around it but the guy wouldn't do it. Ferrell was a bit irritated about this but not too majorly. In the mean time we had a lot of family there to visit him as well as many, many friends who came out to support us such as Craig and Wanda Irlbeck(angels in disguise), Jean Nelson(who stayed the night with the girls in the waiting room so that I could stay with Ferrell in ICU), Bonnie Richardson, and all the people from Gulf Power that Ferrell works with and some he doesn't work directly with. The second night we were there Ferrell found out about all of the people who were there to see him and decided he wanted to see each and everyone of them so we marched them back 3-4 at a time and even 6 at a time. This was all highly unusual for an ICU patient but the nurses didn't say a thing. At some point in all of this our best man, Mark Reeves and James Puckett came back to see him and were cutting up with him. Seeing all these different people really helped keep Ferrell's mind occupied so he didn't have much time to think. After everyone had left for the night except me, the girls, Jean Nelson, and Craig Irlbeck, I went back and stayed the night with Ferrell again. We sat back there with him still not sleeping but a couple of hours, we talked about some of the what ifs and then both decided that wasn't healthy and just talked about how we were going to beat what ever this was. About mid-morning on Thursday, the 20th they came in and started getting Ferrell ready to move to pre-op. They let me stay with him during this whole time and even ride in the elevator with him and them down to pre-op. Once we got to pre-op, we had to get a new iv started which wasn't easy and then the anesthesiologist came and tried to talk to us but it was too noisy and he got ill and basically told several other doctors to shut-up and go somewhere else because he couldn't even hear his patient talking. We ended up getting moved to the recovery room where it was very quiet because everyone is asleep and dopey. Again they let me stay with him this whole time. The anesthesiologist told us that he would have two IVs in and an arterial iv to monitor his every heartbeat during surgery. Finally, Dr. Manski told us it wouldn't be much longer now and in another 15-20 minutes Ferrell's OR nurse(a man) came and told me that they were getting ready to take him back and did I know where the OR waiting room was. I told him no and so he told me he would take me so I told Ferrell I loved him and kissed him bye for the moment and the nurse walked me out to the waiting room. I started to sit down but decided not to and looked at the patient screen they have up and saw that it was 12:45(found out after surgery that they actually started his anesthesia at 12:42 while the nurse was walking me out. I asked Miranda to go with me to the ICU waiting room so I could sleep for 2 hours(they told me the getting ready for surgery would take about that long) so she and I went there and I crashed for the first time in 48 hours for a couple hours. When she woke me up after 2 hours, we went back to the OR waiting room and sat down to wait. Aunt Jan and Brian were there, Uncle George and Aunt Vonnie were there, Rogie and Coy, Ann and Randy, several Gulf Power people where there and in and out, and numerous other people that I will look at the list and add later. About 5:15 everyone decided they wanted something to eat except Aunt Jan, Brian and I. Ann and Randy took the girls to Sonny's to eat and Rogie and crew went to the cafeteria to eat. At 6:10while only the three of us were in there, Dr. Manski came out to speak to us and told the three of us that he had removed all that he could but that the brain tumor was like an octopus with arms that reached into areas he couldn't go into without doing bad irreversible damage. He said that this type of tumor was highly aggressive and we wouldn't know for sure what we were dealing with until the pathology came back hopefully the next day. He did however let us know that it was more than likely cancerous even though he didn't actually use those exact terms. The three of us sat down and made the decision that we would wait until everyone got back to tell them what was going on. Aunt Vonnie came back first and then Uncle George, Rogie and Coy and all the people who ate at the cafe. We went ahead and told them what we knew and Rogie started to get hysterical for about 5 seconds and then just stopped. I told the kids as soon as they got back from Sonny's. Soon after this they let me and Rogie go back with Ferrell in recovery. He looked like himself except he had a bandage around his head and a bloody looking drain out of the top of his head that drained into a small iv bag looking thing. He also had tubes coming out of most everywhere imaginable. He talked to me and his Mom right away and then went to flexing his hands and legs and lifting them up and looking at them. He said he wanted to make sure everything still worked and it all did with no numbness or anything. I stayed with him in recovery until they finally decided to send him back to ICU about 9:30. Rogie had brought all three kids back to see Ferrell in the ICU and then i told him I had to go home and get some sleep. So all three kids and I left and went home. The girls went home with me and went to school in the morning and then Austin and I went back to the hospital mid-morning on Friday. Ferrell was feeling decent but was upset off and on that day. I had requested that nobody talk to him about what we suspected until we knew something concrete. My Dad and my brother Ricky came in that morning and actually beat me to the hospital. Different people were with us on and off that whole day in ICU including LaDawne, Vince and Connie Brown, the above mentioned people and many more that I will add later. Sometime in the early evening Dr. Manski came in to talk to us and started to talk to Ferrell with Ricky in the room. Well Ferrell said hang on my wife needs to be in here so Ricky came and got me and went back with me. Dr. Manski told us that the brain tumor was the most aggressive kind a person can have for a primary brain tumor. He also told us the name was Glioblastoma Multiforme(GBM). Austin walked in about this time so he heard it from the doctor also. Dr. Manski told us that he got all he could but that there were still fingers left behind that would require further treatment. He also told us that this form of brain cancer is incurable and reoccurs. I went out after Dr. Manski left and talked to the girls and thought I had explained it really well but I found out later that Dayna didn't know it was cancer until she over heard me talking to someone on the phone Monday evening. Everyone dealt with it the best way they could. Miranda had a few crying spells, Austin was hugging me and Rogie the whole evening, and Dayna refused to leave the hospital. I sent Rogie home to get some rest along with everyone else except the girls and Bonnie I think who stayed in the waiting room with them. Ferrell had a really down spell that evening and even cried after Dayna came back to see him because he started thinking about not being there to see his kids and grand kids grow up. This lasted a couple of hours and then I got him to start think of the ways we were going to beat this. Next, I stayed up all night along with Ferrell doing research on this form of brain cancer. The statistics were not what I wanted to read so I started researching ways of treating it. By the time morning rolled around I had heard from my SIL Shonda that we needed to go to NY Presbyterian Hospital and to see Dr. Rosenfeld who is a neuro-oncologists and I had come to the same conclusion my self after my research so by the time the local oncologist, Dr. Harvey Chaing, came we already had a plan in mind and talked to him about it. He was very pleased to see that we were well researched and told us he would help us any way he could including calling Dr. Rosenfeld if I needed him to. We couldn't do anything until Monday when the offices opened back up. Whenever Dr. Manski came back that evening he told us we could move to the 4th floor which was the cancer floor and had much more spacious rooms and a couch that made into a bed. This was Saturday the 22nd by now. Ferrell got moved into a room about 9 p.m. or so. Before they moved him the nurses removed his catheter, his arterial iv line, his drain, and one iv line and started another one in his upper arm on the inside. Once Ferrell was settled for the night and had taken something to help him sleep he ordered me to go home and sleep because I had been up all night the night before and that morning researching. So I went home and Rogie stayed with him. We all went back late morning Sunday. As soon as I went up, I saw that he had a room full of company including a guy named Mark Gilligan who has brain cancer on the brain stem and has had whole brain radiation. He had also worked for Gulf Power in a different division. That is all I can write for now. I will write a 2nd part to this in a few days.