Third Seizure Episode Part 2

Ok so it is Sunday late morning. We had lots of visitors that day all day and into the evening. I was getting ready to make the phone calls to the doctors at New York Presbyterian Hospital first thing in the morning. We eventually went to sleep for a few hours and then got up with more visitors coming. I called Dr. Rosenfeld's office and was able to get Ferrell an appt. with his partner Dr. Lei for June 2nd and they told me the radiation oncologist we needed was Dr. Issacson. I then called Dr. Issacson and got an appt with him for June 1st. We now had all our appts set up so we were free to leave the hospital. They didn't want us to leave until everything was set in motion. I can't remember if Miranda drove us home after school or not but I suspect so since she had the truck at school. We went home and rested and worked on getting my mom moved to a rest home since she was needing more help than we could give her at home. The place she had been was full so we call the Parthenon who also said they were full. The days went by with us doing research and packing. On Thursday night the girls had their spring football game. Ferrell was feeling so good that he went with us to the game and sat in the roped off area behind the girls where we always sit. He had many people come over and talk to him and let us know we were in their prayers. It was a very good evening and we really enjoyed it. The next day I was scheduled to go by my school so that I could sign all the paperwork for being out the last three weeks of school. I thought I would go early enough to see my students but as it turns out the Parthenon called me and said that they had an opening so I had to go there and fill out all the paper work for my mom to go there(she loves it there by the way). Austin and Rogie brought her over that afternoon and I just made it to my school about 3 to sign the papers. Bonnie came down to my room and helped me get my room ready for the summer. I put everything up that could be put up. I then went home and continued getting ready for our trip. Ferrell and I went to the country club either Friday or Saturday night to see all the players come in from a night tournament. Ferrell really enjoyed being able to see all the people he plays golf with and just being at the country club. At some point towards the end of the week we found out that Gulf Power was going to fly us to and from NYC on a corporate jet. Thank you so much Gulf Power and Southern Co. We flew out on the 1st of June at like 8:00 a.m. We arrived at Teterboro Airport in New Jersey 2 1/2 hours later. We were met by a driver and taken straight to our appt. with Dr. Issacson. We were both very impressed with him and he explained what a good job Dr. Manski had done on his surgery. He then went on to tell us that Ferrell would be scheduled for a simulation of treatment on June 8th. He told us that Ferrell would receive 30 treatments along with the Temodar(chemo). The radiation was to be five days a weeks and chemo seven days a week. He also told us that they really don't know how long people will live with this new protocol because it had only been available in the US for five years and many patients were still living at the five year mark. The livability rate of course has to do with the age of the patient and where there intial tumor was at and if it was operable. Five years ago, this treatment didn't exist for U.S. patients. We left there feeling very encouraged. We got a car to take us to our hotel in Englewood, NJ. The next day we decided that cars were too expensive and decided to try out public transportation. We found out where a bus came about 10 minutes from our room so on June 2nd off we went. We got on the correct bus(believe it or not) and got to the George Washington Bridge bus terminal. We walked the seven blocks to Dr. Lei's office. We met with her nurse practitioner first for about an hour. She went over everything with us which we were already formiliar with due to research and Dr. Issacson. After Meghan met with us, Dr. Lei came in. She basically went through the same things Meghan had gone over and then asked if we would be interested in taking part in a research study. Ferrell said, "Of course." He said if other people before him hadn't done that the treatments wouldn't be where they are today. So we spent about an hour with this resident(don't remember her name although she was India Indian) and answered questions about Ferrell, his ancestors and many other things. We left there with the promise that they would get his Temodar ordered for us. That ended up being a nightmare because it is a specialty drug and has to be paid for up front. Our portion was $350 which isn't bad considering insurance paid $14,000 for it. We finally got it ordered and sent to us overnight from our mail order pharmacy. Ok so along the way from this day until we started having to go daily we did a bit of learning with public transport. We got off at the wrong place several times which meant walking anywhere from 1/2-1 mile to get back to hotel. We checked into all kinds of lodging from the free(which was booked solid) to rentals which by the time we negotiated with the Crowne Plaza would have cost us more even for a studio apt. We went out and saw Rockefeller Center, Times Square, and a few other places along the way but it didn't take Ferrell but one visit to NYC for him to know that he hated it. On June 8th, we went back to NYP Hospital for Ferrell's simulation of radiation. They made a mask for him that started out being like 2 inches and then streches all the way over his whole head and secures to the table. He said it was really hot to start with and then cooled off and got hard. It looks like mesh panty hose but made from cast like material. He gets to bring that home with him when he finishes treatment next Thursday, July 29th. On the 12th of June the girls came to visit for a month. The story of getting them air mattresses is another way we learned how to get around. We went all the way to NYC through the Lincoln Tunnel which I hope I never see again. It gave me very bad claustrophobia. Unfortunately, traffic was stopped in the tunnel also. YUCK! We were trying to get to a Walmart that was only 6 miles from our room but we still ended up in NYC. Grrrrrr! We eventually got enough people to help us and we got there after about three hours for a ten minute trip. Oh brother! We got their air mattresses and went home exhausted. Mandy Fluhrer picked the girls and her brother Randy up at White Plains Airport for us and brought them to us. Mandy and Randy also took the girls all around NYC to see some sites and to buy purses(from street vendor). I think the kids all had a great time together. We sure appreciate all the help Mandy was to us when we got there and for the next two weeks. She is a sweetheart for sure as is her family. I forgot earlier to mention that on the 29th of May, Christi Fluhrer and the girls all got together with Austin and Randy to and planned a 49th birthday party for Ferrell. Christi hosted it at her house and we kept it a surprise from Ferrell. He was truly surprised and got to see lots of friends and family that day and ate some delicious food as well. It really helped break up the somber mood of things at that point. Thank you Christi so much and your helpers! :-)