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02/26/05 WOW. What can I say? This update is written as each day goes by in Florida. We arrived in Orlando and made our way to Give Kids the World (GKTW). What we saw when we arrived exceeded all of our expectations. The villas are great. Two bedrooms, a big bathroom with whirlpool tub, another small bathroom and living room and kitchen. Our villa is next to one of the pools. We took a small tour and found a train station. Guess who was excited to see trains, even some Thomas trains? No, not Alexa, it was Daegen. He even met a friend named Cameron who played with Thomas and friends for a long time. Cameron even arrived in Orlando via Am Track. We made our way to the gazebo on the docks to go fishing. Everyone in our family caught at least one fish. Daegen, Alexa and I caught two. Janelle only caught one. We ate dinner at the Gingerbread House. The ice cream parlor is open 24 hours but we haven't tested that theory out yet. We rode the carousel several times before we finally got everyone to sleep. At check in Daegen got a button with his name on it and Give Kids the World printed on it. Daegen gets to be king when he has the button on. This button allows us to go to the front of the line at all the Disney Resorts as well as Sea World and Universal Studios. Before we went to Kansas City on Thursday Janelle, Daegen and I attended the 94 Country St. Jude Radio-Thon at the Auburn Apple Market. We would like to thank everyone for all your support for 94 Country and their efforts to raise money for St. Jude. They raised over $70,000.00. My family is very proud and thankful for all the money that was raised. Janelle also got to meet Scott Reeves from Blue County. He used to be on Young & the Restless and is married to Melissa Reeves on Days of Our Lives. Janelle talked to Scott like she has known him forever. Saturday brought a dry day. We ate breakfast then we got to listen to a high school band play drums. At one point Alexa was leading the Conga line. We went to Animal Kingdom and got to park right next to the entrance because Daegen was staying at GKTW. We rode the safari ride first. With Daegen's GKTW button, we got to go to the head of the line and did not have to wait. It was weird passing everyone up but it was good. No waiting was awesome. While on the ride, the family behind u started talking about how this was their second time riding on the safari tour that day. The father stated on their early ride how one of the rhino's charged the safari bus. We then went to ride a roller coaster. The whole morning Daegen kept saying he wanted to ride roller coaster. Imagine our surprise when we got to the ride Daegen was too small. His lower lip was quivering as we told him he could not ride. He held back and did not start crying. He quickly got over the disappointment and had a great day at Animal Kingdom. We left the park around 2:00 and headed for Sea World. I never have given Sea World much thought before this trip. We had a wonderful time. We went to see Shamu after we got in the park. We were not sure of the time but got there at 2:40 for the 2:45 show. We had special privileges at Sea World also. We got to sit in reserved seats that were just out of the splash zone so we were able to stay dry. Daegen and Alexa had so much fun watching Shamu and the other killer whales put on a show. We got some great pictures of the show. We went to see the stingray exhibit. We fed the stingrays, which was quite an experience. It was a weird feeling having the stingray go over the top of your hand and eat the fish you were holding. A kid even fell in the stingray pool and lived to tell about it. He was really scared and crying but did not get hurt. Dolphin Cove was next. We fed the dolphins and got to pet them. Sea World was so much fun. Alexa and Daegen jumped on a trampoline with ropes attached to them. After that Alexa and I rode a cool roller coaster. Alexa had a blast. We left Sea World and ate dinner. Alexa was itching to get back to GKTW to go swimming. I must say that I got lost going back and spent about 40 minutes going the wrong way and then backtracking. We finally got back to GKTW but the pool was closed and the kids were sleeping. Sunday was a bad weather day. We knew storms were forecasted so we slept in as much as early riser Daegen would let us. We ate breakfast then went to the castle to hang out with Disney employees. The employees were from the Disney Cruise Ship Wonder. They had just docked at Port Canaveral and came to volunteer some time at GKTW. We packed up and headed for Coca Beach, which is by Cape Canaveral and Kennedy Space Center. On our way we remembered we could get into Kennedy Space Center so we called GKTW and they set it up for us. In the meantime we went to the beach so Alexa and Daegen could see the sand and ocean. We got to see some cruise ships and Disney's Wonder on the way to Coca Beach. It rained most of the drive. As we got to the beach the rain let up some so we could enjoy walking on the beach. Alexa and Daegen collected a few seashells as keepsakes. Alexa walked in the water but Daegen didn't want anything to do with the cold water. We ate lunch at a neat pizza/ice cream parlor that was on the beach. We then headed for Kennedy Space Center. We got there and quickly realized that a lot of our time was going to be spent outside in the rain. We finally found Dippin Dots, called Space Dots. Daegen was so excited to finally get his Dippin Dots. We got to go in a space shuttle (probably not a real one but I think it was a full size model). I never realized just how big a shuttle is. We started to head back to GKTW around 3:50 because we had reservations at Wilderness Lodge for Whispering Canyon at 7:10 p.m. At about 4:09 p.m., the severe weather alert on the car radio signaled. The announcement indicated a tornado warning for Coca Beach and Cape Canaveral. By this time we were about 10 minutes north of Cape Canaveral. That was too close for us. A tornado did touch down and cause some damage. By the time we got back to GKTW, the sun was out and no more rain. Daegen, Alexa and I decided to go swimming while Janelle got ready for dinner. That was a mistake. It was so cold. The pool was supposed to be heated but it had not warmed up much yet. Daegen really enjoyed getting to swim for the first time in 18 months. I don't think the cold water was going to stop him at all. It was an amazingly proud moment to see him swim. When I look back to August 07, 2003 I can see just how much Daegen has grown and changed. Time has gone by fast when I look back but time has seemed to crawl as each day went by. We ate dinner at Whispering Canyon. The employees yell a lot and cause a ruckus. When a table needs ketchup, they end up with about 10-15 bottles. You can look a picture when it gets posted to see what I am talking about. There is also a picture with a knife stuck out of ketchup bottle. That was Janelle trying to get ketchup out but instead getting the knife stuck. On Monday took a family picture in the movie theater at GKTW. Of course Alexa and Daegen rode the carousel several times after we ate breakfast. I saw a family walking up with a Jayhawks shirt on and a KU hat. I found out they were from Eudora and leaving on Monday. They had just finished their stay and were on their way home. We got a call from Radio Rich and Louann from 94 Country. Janelle, Alexa, Daegen and I were very impressed with the amount of money they raised so I called them earlier Monday morning to thank them. When they called back we were getting in the car to go to Magic Kingdom. Janelle and I forgot when you park at Magic Kingdom you have to ride the monorail or a ferry to the park. We rode the monorail after waiting for about 15 minutes. King Daegen was able to get us in the front car with the driver. We all got our co-pilots license. Magic Kingdom was very crowded since the day before was heavy rain. We rode many rides and got to go to the front each time. Alexa and Daegen rode one roller coaster about five times. Only one time did someone get upset because Alexa and Daegen did not have to wait in line. Alexa and Daegen had been riding in the last car each time and wanted to ride in the front car. They had to wait one more time then they got to sit in the front. When it was their turn to ride in the front the lady tried to get in the first car. She was told she couldn't get in the front car when she made the comment about them not waiting in line. Poor Alexa and Daegen, they started to move away from the first car because of this lady. The Disney employee told her something and it must have satisfied her because she didn't make any more comments and would not look at me as she got off the ride. I thought to myself how I would gladly trade places with her and wait in line if she would take Daegen's cancer. I realized later that I would not wish cancer on anyone, not even this lady. We had a blast at Magic Kingdom. It was great to see the smile on Daegen's face as he rode all the rides. We ate lunch at the Crystal Palace with Winnie the Pooh, Tigger, Piglet and Eyor. Daegen really enjoyed getting to see the characters and interacting with them. This is one of the same events the last time at Disney World where Daegen was in so much pain that he didn't enjoy it. He told Janelle and that he did remember eating there last time. It got close to parade time so we found a Disney employee and asked her if GKTW kids have a special place to watch the lighted parade. She told us she would ask because she didn't know. She found out that we could sit in preferred seating which if you have ever been to Magic Kingdom is located on the bridge by Cinderella's Castle. It was our family and about five other people on the bridge. Each parade participant that passed by us had only us to perform for. Many of the characters came up to us and shook Alexa and Daegen's hands. Daegen was so excited. I think Janelle secretly enjoyed it as well. The stampede out of the park after the parade was just like the line getting into the park. On Tuesday we ate breakfast and found another family from Kansas. They were from Shawnee and just got in the night before. They had three kids, their wish child who was 4 years old and his twin sister and a 9-year-old sister. Alexa really wanted to get to know them and play with the older sister. There just wasn't enough time for that to happen. Alexa is such a social nut. She could sit next to her own shadow and start a conversation. We took a horse carriage ride after breakfast then visited with Mayor Clayton, the bunny rabbit that is mayor of GKTW. We even went inside his tiny little house. The house was perfect size for Alexa and Daegen. Janelle and I had a hard time getting in and out. We then went to Universal Studio for the day. We got there later than planned and by the time we finally got in the park it was about 11:15. As we were getting ready to go in Alexa spotted Dora the Explorer. Daegen stood in line and got his picture with Dora. Just then Shrek and Fiona came walking up to have pictures with the kids. Alexa was in line towards the middle when the guy working with the characters noticed Daegen's Give Kids the World button. He told me to have Alexa get out of line and he put Alexa and Daegen right up front and first to see Shrek and Fiona. He then told me that we could get in front of any character greeting that we wanted to. I thanked him and we went on our way. Our goal was to do as much as possible and not do too many of the character greetings. The first ride was Jimmy Neutron. Apparently we will never be riding that ride again. After we were shuttled to the front of everybody, even the express pass people, we rode the ride. Afterwards Daegen informed us that he didn't like Jimmy Neutron and would never ride it again. He even told Janelle as we were waiting to get on that she doesn't let him watch Jimmy Neutron. The ride was too loud and dark. Janelle and I quickly found out that while Disney was very accommodating to us, Universal Studio went one step further. When we saw Scooby Doo and Shaggy the worker with them said there was five minutes left. There were about 5 people in line ahead of us. When we got to the front of the line he said we would be the last ones. After we got our picture he pulled me aside and said he did not realize Daegen was with GKTW. He said next time grab the worker and let them know and they would get Daegen in front. This is one thing that Disney would not do. Alexa and Daegen found a roller coaster, Woody Woodpecker that they loved. They wanted to ride over and over. We even left and came back several times. The one thing about Universal over Magic Kingdom is that they were not as busy. We really didn't have to wait much for food or the regular lines on the kid rides. Alexa and I ventured off and rode Back to the Future and MIB. Again, we were taken in the back way and escorted to the front of the line. I know Alexa really got a kick out of that and so did I. We really rode a lot of rides very quickly. Sometimes the ride itself was longer than the wait. All of us rode ET and that was a mistake. Again Daegen was upset because of the darkness and loud noises. As we were leaving we went around part of the park that we hadn't even seen yet. We came across The Mummy ride so Alexa and I rode it. Again we were put in the front of the line. The ride was probably one of the better rides I rode when you take into account the special effects and the roller coaster ride itself. As we were leaving a park employee doing a survey on cereal stopped us. Alexa and Janelle were paid $15 in park money to do a taste test. We stopped by the bathroom on the way out and Alexa found a cell phone in the bathroom. The phone rang so I answered it. The lady calling said, "I think you have my phone." I told her yes my daughter found it and we were getting ready to turn it in. She was about 100 yards ahead of us as we were leaving so she met us on our way out. I got a picture of Alexa turning the phone over to her. What a riot. Alexa was so proud of herself. When we got back to our villa the kids and I attempted to swim again. The water was a little warmer but it was colder outside. It was really cold as we got out to dry off. For dinner we went to a place called Medieval Times. A dinner & tournament event. We ate quit a bit of food and were entertained by 6 knights who competed in a tournament. The knight we were cheering for was the black & white knight. He didn't win but came close. Alexa really loved the show. Daegen was into the show and not eating because the jousting and games distracted him. He finally fell asleep. It was an event that was provided to us through GKTW. Janelle and I could have had a parent's night out while the kids stayed at the resort or we could have done the family night. We decided to do the family night. We had a choice between pirates or Medieval Times. Janelle and I were so happy the kids enjoyed the Medieval Times. This was the best trip of my life. The kids had the time of their life. Janelle and I got to see Alexa and Daegen smile each and every day as they experienced being treated like King Daegen and Queen Alexa. GKTW and Make-A-Wish really go out of their way to make this wish trip a dream come true. Daegen might not remember everything he did this trip and Alexa might not either. I know Daegen will remember that we can never ride Jimmy Neutron or ET again and Alexa will remember finding a cell phone or the Medieval Times. I can't say thank you enough to the volunteer's at GKTW and the full time staff. They really went out of their way to spoil us. The next day we went to Universal Studio's Island's of Adventures. I think this was Alexa's favorite day. She rode several of the big roller coasters and rode a ride like the Detonator at World's of Fun called Dr. Dooms Fearfall. She loved the Incredible Hulk roller coaster. I would have to say that it is probably the best roller coaster I have ridden. We spent a long time in Seuss Landing. It was Dr. Seuss's 101st birthday that day. Daegen loved riding Cat in the Hat, as did Alexa. Daegen and Alexa rode a roller coaster called The Flying Unicorn about ten times. They got to know the worker Molly. She gave them a certificate for being official riders of The Flying Unicorn roller coaster. Alexa and I rode the Dueling Dragons roller coaster. One is fire and the other is ice. Alexa and I also rode Spider Man ride. This ride is probably the most expensive ride ever built and it was worth it. Island's of Adventure was probably one of the better theme parks. We only had half a day to spend there, as we had to catch our flight back home. We finally got to the airport and I dropped off Alexa and Janelle curbside with the luggage. Daegen was sleeping so I took him with me to drop off the rental car as Janelle and Alexa checked the luggage and checked in. When Daegen and I got to Janelle's location she said Daegen and I were not checked in yet and that her and Alexa were sitting next to each other and neither would Daegen and I. By this time we had about one hour before our plane took off. After waiting in line for about 10 minutes we finally got our seats arranged to be next to each other. We started our trek to our plan and ran smack into a long line of would be passengers waiting at the security check point. There was no way we were going to get through the long line and make it to our plane on time. We finally switched lines and started to get close. One of the security workers saw my Topeka Police jacket and at my urging let us through the ropes along with the people behind us in line. He later told me it was because he was retired and thought I looked like I should be. He told me this as he motioned to my jacket. It is good to have a brotherhood that looks out for each other. I am sure the other 100 or so people that went behind us really enjoyed the short cut as well. By now it was 6:25 and our plane was due to leave at 6:35. When we got to our gate we found our plane was delayed for 15 minutes. We ended up sitting by a young family and after talking with them found out they were from Kansas City and the husband has volunteered with Make-A-Wish in Kansas City. They knew all about Give Kids the World and all of the rides. Alexa and Daegen talked their ears off. They were flying the same flight we were. We had a connecting flight in Atlanta at 9:00. We landed in Atlanta at 9:10 and after sitting on the runway for about 10 minutes we finally got off our plane at 9:20. Our connecting flight was waiting for us and we finally took off for home. We got home around 1:00 in the morning. The next day Daegen and I left around 8:30 a.m. towards the airport in Kansas City for Daegen's checkup in Memphis. We got to Memphis around 11:20. After checking in to the Grizzlies House we contacted Daegen's friend Zach and scheduled a time for the two to play. Daegen and I went over around 3:00 and chatted with old friends. Daegen even had a couple of packages that were full of Thomas items. Daegen and Zach finally played for about 1-½ hours. Zach really looked good but needs some prayers. The chemo that Zach had for his Neuroblastoma <http://www.zachrusso.org/neuroblastoma.html> - stage 4 (Cancer of the Peripheral Nervous Tissue) did not work so now they have to go to another plan. Zach's parents don't know what the plan is but they really could use your prayers. Zach and Daegen had a good time playing. Daegen and I then played bingo for about ten minutes before Daegen got tired of playing. He wanted to play with his new Thomas toys. We headed back to the Grizzlies House and finally got to bed for our 7:45 a.m. appointment. Richard, a producer from California is making the show for St. Jude with Marlo Thomas. Daegen and Janelle have been filmed and interviewed already. Richard was at St. Jude so he followed Daegen and me around for part of the day. Daegen and Richard really hit it off. Daegen was worried all the time in Florida about getting Richard some Mickey Mouse ears. Daegen was really excited to give them to Richard. The film crew was filming Daegen during his assessment/triage when they had to poke Daegen to draw his blood and put in a peripheral IV. The staff at St. Jude was having a hard time getting the needle in. They finally told Richard and his crew that they should leave the room because Daegen would probably be crying and screaming. Richard and his guys retreated to the hallway as the nurses tried three times before they got the IV in. Daegen only shed one tear and did not move or scream. He really continues to impress me. His visit with the doctor went well. Daegen still has 100% donor cells and his counts were good. His T and B cells are still low and usually take the longest to get back to normal. Usually from 6-9 months. Friday was day 170 post transplant. Daegen has made it farther than his first transplant, which is a relief to Janelle and I. We will continue to keep faith and just know that Daegen will be strong and courageous. Daegen and I got home around 10:00 p.m. on Friday night. The weekend went fast as Daegen and Alexa played quite a bit inside and out with the nice weather. Alexa finally has all her schoolwork caught up and is back on track. Sunday she started volleyball practice. Alexa, Janelle, Daegen and I along with cousin Paige Eichkorn all went to Sonic to play on Sunday. I am sorry this update is so long. There was a lot of information to pass along. Remember to sign the guest book and say a prayer. Don't forget to pray for all the kids in the world and an extra one or two for the kids of St. Jude and other pediatric hospitals. God Bless Lance www.dmanhero.com |