Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Give a gift in honor of this child. David "Fisher" Clark We now have a post office box for Fisher. If you get the chance, he would love to get a letter, or card from his friends. He love you all so much!. The address is: Fisher Clark c/o Carolyn Clark PO Box 2781 Chesapeake, Va 23327 Fisher's Guestbook       Fisher's Photo Album Fall                   Spring Current Page Page One Page Two UPDATE: 11-23-05 Okay, okay so I left you guys hanging for an extra day! Here we go for the rest of the story. Saturday morning, we woke up and we started thinking about what kind of sign we could make for the concert. I wanted to try and get my friend on stage to get a hug from Keith. As the day went on, I kept thinking about it. We went to Walmart to get the digital photos we had of Fisher with Little Big Town and a couple CDs. Joanie wanted to buy some snacks to take to Keith's road crew. While we were there, she kept trying to distract me, hoping I would forget about the sign, and I almost did. But, I didn't. We got lunch for the guys and headed home. After much debate about the sign, we decided on “Fisher wants his Joanie to get a Keith hug!!” The sign was made, we got ready and we left. Now, on the post about Friday, I failed to mention that Joanie had given us green Keith Urban shirts so all three of us were dressed alike. I thought it would be a good idea if Fisher and I dressed alike again incase we got separated; it would be easier to get us back together. The route we had to take was through an area that had a brand new traffic pattern, and of course, I missed our turn. It was easy enough to get back on track, but, before we entered the tunnel that would lead us to Norfolk, Fisher had a very bad coughing spell. The spell was so bad, he threw up all over himself. We pulled over and pulled off the pukey clothes and wrapped Little Man up in my jacket. We found the venue and we found the buses. Joanie wanted to take the snacks to the crew before we took off to find Fisher something else to wear. After a few mins, she came back and asked me if we wanted to take a tour of one of the buses. Of course we did, so I bundled Fisher off and carried him to the bus. (He may be little, but he is HEAVY) The tour was very cool. Keith's road crew is so nice. They were asking about Fisher and we gave them a brief history of Fisher and why Keith is so special to him. We thanked them and off we went to find Fishie some clothes. That took no time and we were back to the venue WITH a fantastic parking spot near the buses. As we walked by the road crew guy wanted to see the sign we made for Joanie. He said that he would try to get the sign on the monitors. We took Fisher to walk around the venue and he was able to see another one of his favorite persons, the best radio announcer on the planet Jimmy Ray from Eagle 97. (Fisher just adores Jimmy Ray) Then we had the all important task of getting Fisher something to eat. Luckily there was a McDonalds within walking distance of the venue. Dinner was over and it was finally time to go to inside the venue for the concert. We found our seats fairly easily and discovered that we had great seats for the second half of the show. (Keith rides this trapeze to the middle of the floor seats and sings on a stage “in the round”) Through this part of the evening, Fisher kept having coughing spells. As you can imagine, I was getting worried that this “sinus thing” is really something else. Our row and the seats around us started filling up, and we met some very nice people. Once again, Fisher got very quiet and very still. Yep, once again he was asleep. He did wake up sooner this time and was able to enjoy Little Big Town's performance and he was REALLY up and awake when Keith came out. Fisher was singing and dancing and having a ball. Then came time for Keith to ride the trapeze to the back stage, the people that were seated behind us, asked if they could take Fisher closer to the stage. They were with in our eye view, so of course we said ok. For that part of the concert, Fisher had front row seats. He loved every minute of it. Joanie was all teary eyed because one of her wishes for Fisher was that he would have front row seats for a KU concert. Bless her heart, she is so sweet. Now, I have to step out of the 'mom' mode for a brief second here and say that seeing the concert from this close… ummm all I can say is: “Woohoo!”. When Keith went back to the front stage it was time for a brief intermission. That is when I bought Fisher his blue KU shirt. We went back to our seats and after a bit, the concert was coming to an end. Fisher had another severe coughing spell. This one took a bit longer for him to get control. I really thought he was going to lose it again, but he didn't. It was then KU started singing, “these are the days we will remember, these are the days that won' come again. The highest of flame becomes an ember, you got to live them while you can…” At this point I lost it. I just started crying. I know the people around me probably thought I was some silly fan crying because I was at a KU concert. But I am sure you guys know why I lost it. The fans at the concert were seeing Keith sing. But, I was seeing flashbacks of different things dealing with Fisher. As a parent of a child with an illness like Fisher's, I will cry at the least little thing. This song in particular makes me cry, because Fisher say's “Days Go By” is his off chemo song and until you hear the song, you can't fully appreciate just how touching that comment is. Once the concert was over, we wanted to go and see Little Big Town again, so that Fisher could present them with pictures of them all together and I wanted them to autograph one for him. While we were waiting in line, he had yet another coughing spell. But it didn't last very long thank goodness. As we got closer, we saw the same crew member from Friday night, and he told me about how much of an impression Fisher made on them all the night before. I hear that a lot from people, but it never ceases to amaze me. When it was Fisher's turn to talk to the band, they stopped everyone from coming near the table so he could 'visit'. He gave each one of them a picture and they asked HIM to autograph each one. There were fans standing behind the line, and they were all cheering Fisher and snapping pictures. Little Big Town was talking to Fisher and the girls were hugging him. Again I lost it. I just started crying. For this band to take time out of their night to make my son feel so special, it just touched me to the very core of my being. When Fisher finished with the band, he was talking to some of his “fan clubbers” and he asked if he could use this one lady's camera. He took a few umm shall we say interesting pictures. We all said our good-byes and we went around to the buses. We were still hoping Fisher would be able to meet with Keith. I wanted him to meet with Keith just so I could change the picture on this page that has been there for over a year now. When we got around the buses, there were fans standing around waiting for a glimpse of KU. One of the band members was out there so Fisher got to meet Chris from the band. After a bit, Fisher looked at me and said, “I'm ready to go”. At that point, I knew he had had enough. Once Fisher gets to that point, its time to go. I know it sounds horrible, but even if Keith Urban would have walked out, and Fisher was still ready to go, we would have walked away. So, Joanie continued to visit with the fans and a few crew/band members and Fisher and I went to the van. He wasn't in his seat for more than 3 mins and he was out like a light. So, in the end, Fisher never did get to meet with Keith. But, that is okay. The whole weekend was full of wonderful memories I will never forget. So now all that is left to say is: “these are the days we will remember, these are the days that won' come again. The highest of flame becomes an ember, you got to live them while you can…” Thank you all for checking on us. We love you all. With love from Va, Carolyn PS I would post about our new van, but, this is already way too long. I will say that if any of you in our area need to get a new/used vehicle, a you want to have a salesperson who will not jerk you around, please go see Brandon at Priority Chevrolet on Military Hwy. He is awesome!! (I will post about the van in a few days. It is a great story too) Happy Thanksgiving Everyone!! UPDATE: 11-22-05 Okay, when we left off, we were headed into the venue to see Keith Urban's opening act, Little Big Town. Before we went to our seats, Fisher just *had* to have a big pretzel, after I checked out the ingredients, to make sure it was diary free, Joanie bought two of them and two huge cokes. We found our seats and settled down. Now, most of you probably purchase pretzels so you can eat, well the pretzel. Not Fisher, he wants a pretzel for one reason, the salt. These pretzels were the saltiest pretzels on the planet. He was in pretzel-salt-heaven! After he picked off all the salt he wanted he took a couple of sips of coke and then he got quiet. Now when Fisher gets still and he is quiet, he is either plotting his next move to torture me, or he is asleep. Well, apparently he had tortured me enough for one day because he was sound asleep. Out came the opening group, “Little Big Town” and they gave a fabulous performance. They sang my family's favorite, “Boondocks”. After their set, they invited everyone to come by their table at the end of the night to meet them and to get autographs. Poor little Fisher was still sound asleep. He slept through their singing, through everyone singing and cheering, and then through the intermission. Finally, Keith came out to sing. His opening number was Fisher's “off chemo song” more commonly known to everyone else as “Days Go By”. Of course Fisher slept through that too. He finally woke up and was able to enjoy most of the show. He was singing and dancing and having a blast. He got real excited when Keith started singing “Fisher's song” (aka “Who Wouldn't Want to Be Me?”). He sang every single word of that song and a bunch of others. It was very clear that Fisher was having the time of his life. I had fun watching Fisher have fun. (Watching Keith sing wasn't so bad either!) One of the final songs of the night was my personal favorite, “Better Life”. Once the concert was over, we waited for the crowd to thin out a bit so we could make our way to meet the group “Little Big Town”. While we were waiting in line, Joanie being the ultra-mega Urban Monkey she is, knew some of the members of Keith's crew, one in particular was standing near the band making CDs and photo's available for fans to purchase. Joanie purchased one for Fisher, and she introduced us to the crew member. I was so surprised that Fisher waited as patiently as he did; he did inform me that he had something he wanted to give them and I didn't think anything about what it could be. I did know that Joanie had a couple of the calendars that Helen makes that she wanted to give to Keith. (complete with a Fisher autograph) When it was our turn, Fisher said “Momma look away!!” He gave them the signed paper he made and asked them to give it to Keith. He asked them to tell him that everyone hopes he feels better soon. They just fell in love with Fisher. They asked if he could get up on the table for a picture. So, they took one, and we took one. I told them a little bit about Fisher and his condition, and then we were off. Now if ever any of you take I-64 from Richmond into Hampton at 12 midnight and you are hungry, you can forget about finding anything open. We traveled from Richmond all the way into Chesapeake, and there wasn't a single thing open. We were lucky enough to see a beautiful shooting star. Finally, finally finally we were home. Fisher was carried in to bed, and I collapsed into a deep, deep sleep. Before I fell asleep, I wondered how Saturday night would ever top Friday night. We had such a wonderful time. Little did I know what the next night would bring. To be continued……….of course!! UPDATE: 11-21-05 Hello everyone. I am sorry it again has taken me so long to update. We have had a lot going on here. First of all, thank you all for your emails and well wishes for our special prayer requests. It looks like they all have been answered. We are hoping to get our new van either Monday or Tuesday! Our Little Fishie Bug has been so sick. We really can't get it pinned down to what it is. They seem to think he has a sinus infection but, we just aren't sure. Poor little guy just coughs and coughs and coughs. Once he gets started it is very hard for him to regain his composure and he usually ends up throwing up. ( Sorry to be so crude ) When ever something out of the ordinary like this happens, we can't help but get concerned as to whether it is tumor related or not. Please pray that he feels better soon. Despite Fisher being sick, we had an amazing weekend!! It started Thursday, when our good friend JoanieMarie came to visit us from Florida. She came to treat Fisher and I to TWO Keith Urban concerts. We hadn't seen her since our Disney trip in January, so it was so wonderful to see her again. She stayed at our house, and it was nice to have another female in the house for a change. My nephew, Cory took me to the airport to pick her up, and on the way there, he told me that he surprised his fiancée with two tickets in the nosebleed section for Saturday night's show. Joanie's flight finally made it in and I was so happy to see her!! Cory went on his way to see his honey, and Joanie and I were off to eat and have a nice long visit. Friday morning, the older boys were off to school, and we were off to Richmond for concert #1. After a long, long, long hour and a half road trip (Several coughing spells none of which resulted in a puking episode), we finally arrived at the venue we were able to find a fantastic parking space and it was time for lunch. We saw a group of fellow “Urbanites” or “Monkeys” aka Keith Urban fans. Fisher had to meet all of the ladies (yes, he is his Father's son). He charmed them all, he showed off his autographed KU jacket, and they all wanted to know the story behind the story. After a while, they invited us to a “Monkey Gathering” and we all went our separate ways. Joanie and I took Fisher back to the van (a 'sweet' rented Town and Country) and we were able to get Fisher to rest a bit. He could hardly sit still because he wanted to go back and see all the women again. (Side note here: Once Fisher realized we were going to see Keith in concert, he really wanted to be able to meet with Keith again. Now, as an adult, I know that Keith isn't going to have time to meet with every fan who wants to meet him. But a seven-year-old who has dubbed this guy his “buddy”, it would be hard to understand. So, we had to break it down to something he would understand. Because it was very important to me that Fisher keep that “buddy” image of Keith since it has helped him through some very difficult times. We told Fisher that Keith had been very busy and that he, himself, wasn't feeling all that great and Keith would have to rest when he wasn't on stage. Fisher understood that and he was okay with not meeting Keith this time.) When it was time for us to go to a hotel for the Monkey Gathering, Fisher was so excited. He saw his new lady friends, and he asked one of them for a sheet of paper. He then stood on a table and was calling all the women over asking for their autographs, by asking, “Who is Keith Urban's number one fan?? Sign here if you are his number one fan!!”. Finally, I asked him why he was doing that. He said he was putting together signatures so everyone could send Keith a “Get Well Soon Wish”. Of course Joanie and I thought that was the most priceless thing ever, and I wanted to save it or at least scan it so I could be able to capture that memory forever. Fisher had it in his mind that he was getting that Get Well Wish to Keith no matter what. We finally had to tell him that he would be going to another concert on Saturday night so he would hush about the note. The note ended up with about 50 or more autographs on it. While he was asking all these ladies for their autographs, they were asking him if they could get a picture with him. He had his own little fan club there. It was so wonderful and it touched me so much that these ladies were making him feel like he was the “star”. It was one of many teary-eyed moments for me over the weekend. All the hotel guests in the lobby were asking, Who is this kid, and why is everyone getting photos with him?” I know I am rambling here, but during all the photos and autographs it was clear that Fisher was sick too because they had to stop for a coughing spell. It was time to head on over to the concert hall to see the opening act “Little Big Town”. To be continued………. UPDATE: 10-17-05 Fisher has had some good days, and some bad days. He went to school this morning, and I had to go and pick him up because he was sick. On the way home, he was asking about my Grandmother. I told him about her, and he asked me where she was. I told him she was in Heaven and she could look down and see him. He asked me if I could throw him up to Heaven so he could see her and his Nanny and Paw. I explained to him that one day, when the time was right, Jesus would come and get him and he would be in Heaven with everyone he loves. He then said, “Momma, that day is going to be soon.” I hate it when he talks like that. I asked him why he felt that way, and he said, “I just do”. Right now he is lying down, and he is watching Lazy Town. Fisher loves school so much. We had some issues with his IEP, but, thankfully, they were taken care of right away. Right now, Fisher's area of concern, is staying focused and on task. But, I think that is a combination of things, ranging from his illness to just being a 7 year old. One of the issues we have had, have been in the area of PE and of Fisher's lunch. You would be so surprised at all the foods they serve that have dairy in them. I do have to give it to the school though, whenever there has been a concern of ours, they are quick to get it resolved. I know that not all parents have it so lucky. In fact, even at the high school, they have really worked with us through all of our problems. A few prayer requests for you guys, our van is literally on its last leg. We are looking into getting another one. Please pray that we can get one that would fit into our already tight budget. Also, I have two requests, I can't really talk about, but they are pretty urgent. Thank you all for checking on us. We love you all. With love from Va, Carolyn UPDATE: 9-18-05 I am trying once again to post an update about Fisher. For some reason, the updates are not making it through. Fisher has started school, and he loves it. He has a wonderful Special Education teacher, and his First Grade teacher is a sweetheart. I keep hearing comments like "Fisher is so smart" "Fisher has a big vocabulary" The latter scares me a bit, because, I never know what he is going to say. Since I last posted, we have an addition to the family. Fisher now has a puppy. Her name is "Midnight" and she is already spoiled rotten. Fidget and Midnight love to play together, and they even take naps together. Fisher has been having some very good days here lately. He still has bad days too, but, we are trying to focus on the good days. He has discovered that he really likes orange juice too. That has made us really happy because we can get calcium in him now. This week we were able to go to a Make-a-Wish event. A golf tournament sponsored by a local credit union. We had a wonderful time. Thursday, we went to a Ruritan Club meeting and a family who escaped Hurrican Katrina were there. Fisher hit it off with their little girl. He shared his Gameboy SP with her, and the two of them played together like old friends. On the way home, he told me that he was so happy he went because he made a new friend. I was so impressed with the way he shared his Gameboy (a big step for him) and how he played so nicely. Well that is about it for now. Thank you all for checking on us. We love you all! With love from Va, Carolyn and Fisher PS Thank you all for your prayers for Fisher's buddy Jessie (his buddy who went to Iraq) You will all be happy to know that Jessie is now, home, SAFE!! UPDATE: 8-29-05 Fisher has had a good week this week. He has played with his game systems and basically has spent the week relaxing. We have been spent the weekend getting the stuff the boys need to go back to school. All three of them are ready to go back. Fisher's neurologist had his assistant call me again to assure me that the MRI was unchanged from the previous scans. Thank you all for checking on us, we love you all. With love from Va, Carolyn UPDATE: 8-20-05 "Ain't nothin' gonna break my stride Nobody's gonna slow me down, oh no I got to keep on moving Ain't nothin' gonna break my stride I'm running and I won't touch ground, oh no I got to keep on moving" I finally found a song that totally and completely fits Fisher. I was in Ci Ci's last night getting some pasta to go for him and "Break My Stride" (Matthew Wilder) came on. I stopped what I was doing right then and there and started laughing. The chorus of that song is Fisher made over. (I know you all will have that song stuck in your head now.) He wakes up any where from 7 to 9 am and he hits the ground running. He doesn't stop until bedtime which is about 8-8:30 pm. Even though there are days when I wish he would just slow down just for 10 mins, there is never a day, that I am not thankful he is so busy. When I was pregnant with him and had my first ultrasound (at 18 weeks) the tech said to me, "I hope you have good running shoes, this one is all over!!" I heard from Fisher's neurologist's medical assistant, and she said that word is all tumors are stable; there is no change. Thank goodness! There are still a few concerns I need to have addressed, so the neuro is calling me on Monday. (And yes, I know that the chemo doctor told me the same thing.) Well, that is it for today! Thanks for checking on us, have wonderful weekend! With love from Va, Carolyn UPDATE: 8-16-05 Now on to our little Fishman. We arrived at the clinic around 11:45. We waited for a bit, and they called him back to the triage. The nurse weighed him, took his height, and his vitals. You all know that the weight thing has been an ongoing issue for us. Thursday, when they weighed him, he was 38 pounds. Yesterday when they weighed him, he weighed in at 41.3 pounds. I thought to myself, “There is no way this child has gained three pounds just over the weekend. I made a mental note to tell the endo that. Then we went back out to the waiting room. We waited for about 30 mins, then we were called back to a room. Once we were able to go to the back, Fisher was able to see two of his favorite people: Mrs Teresa, and yes, Mr Brian. Fishie was happy to see them both. The first doctor to see Fisher was his endocrinologist. She checked him out and was very pleased. She was happy about his growth. I mentioned to her my doubts about the weight and she weighted him again. Much to my surprise, the 41.3 pounds was correct! We concluded, that the weight on Thursday, was wrong because, trust me, there is no way Fisher could have gained that much weight because he barely ate anything all weekend. Next, we went over his blood work. He is still mildly anemic. She explained to me about the growth hormone thing. Yes, it is low, but, it is within the acceptable range for his bone age. So, for now, there will be no growth hormone therapy! Next was the educational specialist. She asked a bunch of questions, and just sort of hung out with us to see how things are going on the educational front. Since school is still out, there really wasn't much to discuss, but, it was so nice to see her. You can tell she really cares about the kids. Finally the person I really wanted to talk to came in, Fisher's oncologist. We went over the radiologist report. All that led to was even more questions. The report shows that the tumors are stable. But, Fisher continues to have these terrible headaches. The radiologist seems to conclude that the brain stem tumor and the cervical tumor actually are one tumor. (if that makes sense) I asked the doctor if that could be causing Fisher's headaches, and he referred me to Fisher's neurologist. Something new that was on the report was there is a small neurofibroma tumor growing at the base of Fisher's skull near the left carotid artery. Again, the doctor referred me to Fisher's neurologist because he didn't know if that would be causing Fisher's headaches. I have to say that the oncologist was very patient and he answered my questions. I have a call in to the neurologist to see what he thinks of the MRI. My gut tells me that there is something else going on, I just don't know what it is. Next was the physical therapist and she thought Fisher is progressing nicely. I really don't know what to make of the visit. I am truly thankful that the tumors are stable. Each of them are in places where surgery is not an option. The way these tumors work, the infiltrate, into the brain, mixing tumor and brain matter together. I would like to know why Fisher keeps getting these horrid headaches. I had hoped that we would be able to figure it out. I am not giving up on looking for answers. Finally at 3:30 pm it was time to go home. I was so glad to be getting away from there. I was physically and mentally exhausted. Once we got home, I just sat down and cried. I hate to see Fisher in pain, and I really would like to have some answers. I don't know what it means that while he was on treatment, the big deal argument was whether or not the brain stem tumor and the cervical tumor was one or two tumors. And now they are saying it is one tumor. My concern is that if during treatment, it looked like two tumors, and now it looks like one tumor, did it grow together? I don't understand why he is having these headaches. I don't understand what the deal is with the smallish tumor at the base of his skull. I know that his neurologist will be able to answer my questions. As soon as I get them, I will let you all know. Just to be clear though, I am truly thankful that the radiologist report says that the tumors are stable. I really am. That's it for now. Thanks for checking us. We love you all. With love from Va, Carolyn UPDATE: 8-15-05 Good morning everyone. I hope you all had a nice weekend. We didn't do much of anything. We just stayed close to home and did normal “weekend” stuff. Fisher played his games all weekend. He told me that he just didn't feel good. When I asked him what was wrong, he said he didn't want to talk about it. We have Brain Tumor Clinic today, and I hope that we can get to the bottom of some of these issues. I really don't know how or even if they are related to his tumors, but I intend on asking a lot of questions today. The major thing though is the headaches. Yesterday, I had a headache and I was sort of talking to myself while I was on the computer, I said, “Man, my head hurts.” Fisher looked at me and said, “I know how you feel momma.” I felt so bad for him. Poor little guy. He also has been complaining about his neck hurting. We should get some answers plus the results of his MRI today. Thank you all for checking on us. Have a wonderful day. We love you all. With love from Va, Carolyn UPDATE: 8-12-05 “These are the days we will remember,These are the times that won't come again, The highest of flames become an ember, And you gotta live 'em while you can”…. Keith Urban “Momma I have a bad headache.” Words of terror to a mom with a kid with a brain tumor. Wednesday night was such a difficult night for me. Fisher had an terrible headache. When I tried to give him something for it, that is when the throwing up started. “Just lay down with me please”, he said. Of course I laid down with him and started rubbing his head. “One more day, one more time, one more sunset, maybe I'd be satisfied. But then again I know what it would do, leave me wishing still for one more day with you”… Diamond Rio. I laid with him, rubbing his head tears streaming down my cheeks, silently pleading with God not to let this headache mean something was going on. Finally, he was able to go to sleep. He really didn't sleep well though. He told my husband that he was scared about the MRI. He has never said that before. My husband told assured him that everything would be alright. Finally we left for the hospital. We arrived in day surgery around 11 am (he has to be sedated for his MRIs) There were lots of kids there waiting for various procedures. Of course Fisher had to single out the babies. He played with them and told them to be brave. He sang to them. The parents were amazed at how he was so comforting to their children. Honestly, so was I. When they called us back, Fisher saw all of “his” nurses. These nurses have been taking care of him for his MRIs since he was 6 months old. He asked them all sorts of questions. He was very well behaved. They had this crib toy that had birds on the inside of this bubble type thing, it shined a light on the ceiling and it played music. He loved that thing. He played with it for a long time. I was amazed at how well behaved he was. He got the versed around 12:30 pm. He laid down and continued playing with that bird thing. He wanted the lights out and he wanted me to rub his head. “These are the days we will remember, These are the times that won't come again, The highest of flames become an ember And you gotta live 'em while you can” They took him down for the MRI, he begged me to stay with him. Of course I couldn't, but I assured him I would be there when he woke up. While I was waiting, I almost went to visit another CB buddy that is in the PICU. (www.caringbridge.org/va/cody) But, I didn't want to just show up. So, I just waited in the waiting room reading the paper, magazines and anything I could get my hands on. Finally he was in recovery! I went back to be with him, and he was sound asleep. While his nurse was accessing him, the Charge Nurse came over with a note for her. She looked at the note, looked at Fisher then she asked the Charge Nurse, “Okay, who do I call?” Instantly, I felt like I was going to pass out. I said “Uh, before you call anyone, what is going on?!?” Come to find out, it was just his blood sugar was low. I said “Unless you want to start performing CPR on me, don't ever do that again.” After four or five red cherry popsicles, it was time to go. Fisher fell asleep in the van on the way home, and slept almost all night. (The versed kicked in) This morning he is up and says he feels good. We just watched Keith Urban on Good Morning America. I was treated to a duet. Keith was on the TV and Fisher beside me was singing “Days Go By”. Later today, Fisher and I are going to the movies to see Sky High. I will update everyone as soon as I hear the results of the MRI. That's it from us for today. Thanks for checking on us. We love you all. Fisher just looked at me and said, “Momma, I love you”. I love you too Fisher, I love you too. “These are the days we will remember, These are the times that won't come again, The highest of flames become an ember, And you gotta live 'em while you can” With love from Va, Carolyn UPDATE: 8-11-05 Good Morning everyone. I thought I would update real quick before I leave for the hospital. Last night was a bad, bad night for Fisher, he had a horrid headache complete with the vomiting. I hope this MRI will give us some answers. Fisher told me to tell everyone hello and that he loves y'all. He also wants me to tell y'all thank you for all the cards and presents he got for his birthday. Well, that is it for now. I will update this evening when we get home. Have a wonderful day. Thanks for checking on us, we love you all. With love from Va, Carolyn and Fisher UPDATE: 8-9-05 Good afternoon everyone. I hope you all had a nice weekend. Fisher continues to have those stupid headaches. He had a pretty bad one Saturday. I hate seeing him in so much pain. He just laid in my arms and cried. We gave him some Tylenol and I had him lay quietly with me, and after about an hour or so, he said, "Okay Momma, I can control the pain now." That just killed me. Thankfully, his MRI is on Thursday, and hopefully we can find out what is causing all his pain. The brain "cracking" has also returned. Please remember him in your prayers. Fisher had such a wonderful birthday. Thank you all for making it so special for him. He loved his birthday scrapbook so much. Thank you all so much for checking on us. We love you all. With love from Va, Carolyn and Fisher UPDATE: 8-2-05 Hello everyone! I hope you all are having a wonderful week. We are having a so, so week. Fisher is really starting to worry us with all these headaches. I have let the doctors know, and we all are anxiously waiting to see what the MRI show. Speaking of the MRI, the date of it has changed yet again. Fortunately, it's to an earlier day. Now it's Thursday, August 11. I wish it were earlier in the week, now we have to spend all weekend worrying about the results. I am trying to think positive though. I pray the tumors are stable. We had a wonderful weekend! We were able to get away to Fisher's “special place”, and it was wonderful!! We had such a marvelous time. To all those who made it happen, and you know who you are, a big, big thank you. To Katie and Maria, thank you so very much. Grandma Joan, Fisher opened one gift early and he freaked out. Thank you so much. He has spent literally hours playing them. To our “rock hound” friends in Arizona, thank you for everything. You guys 'rock'. To our dear friends, Joanie, Danny and Geordan, thank you so much. Everyone who sent cards for Fisher's Scrapbook, thank you. He is going to love it. Fisher's birthday is tomorrow. He is so happy to be turning seven. *I* am so happy he is turning seven. Each day with him is such a gift. Actually each day with all three of my boys is a gift, but you all know what I mean by it when I say, each day with Fisher is a gift. He is such an amazing little guy. I am so proud to be his mom. He tries to live each minute, each hour each day, to its absolute fullest. When he said that “Days Go By” is his 'off chemo song', he wasn't joking, he tries to get the most out of every single day. He keeps me running, that is for sure. I feel so blessed to have been given the honor of being his mom. I just wish he wasn't going through all this. At times it seems so unfair. I try so hard to understand, but, I come up with a big blank. Why is it that my son and all his friends out there have to endure all this? When I get to Heaven that is going to be one of the first things I ask God. I know he has a purpose in all this. I just wish I could understand. Sorry I didn't mean to get off on a tangent like that. If you have a chance to stop by tomorrow, please sign the guestbook and wish Fisher a Happy Birthday. Once again, like last year, Fisher would like you all to go to Sharethelove.org, and visit (and sign the guestbook) of seven kids. He loves to check out his guestbook to see who has signed and he is sure the other kids do too. So, if you get the chance, visit seven pages, and tell them Fisher sent ya!! Well, that is it for today. I hope you all have a wonderful week. Thanks for checking on us. We love you all. With love from Va, Carolyn UPDATE: 7-28-05 Hello everyone! I thought I would show you guys just how hot it is here today. Yes, that is the actual air temperature! It is 115 degrees here today. That is without the heat index! With it, I think it is something like 125-130 out. What is up with that??? We don't live in the desert! We live in what is supposed to be a 'moderate' climate! Oh well, at least we don't have a hurricane headed our way. Yet! Fisher is doing pretty good. He still is complaining about having headaches, but, thankfully, not as often. He is so excited about his birthday. He has no clue what we have planned for him. He will be so surprized! For those of you who have sent cards and gifts thank you so much! I have them all tucked away for his birthday. He is going to love everything so much! Well, that's it for now. Thanks for checking on us. We love you all. For everyone in the middle of this heat wave, stay inside or in the pool. With love from Va, Carolyn and Fisher UPDATE: 7-22-05 Good evening everyone! I hope you guys are beating the heat. It has been horribly hot. Right now, as I type this, its 99 degrees out with a heat index of 110. Arghhh that is just too hot!!! We have some news on Fisher's blood tests. His thyroid function is “okay” but his growth hormone is low. What does that mean? Who the heck knows!? All I know is Fisher is very small for his age, and he isn't growing. I sure hope someone can give us some answers. Fisher's birthday is fast approaching, if you want to be included in the birthday scrapbook, please send in your cards and pictures. He is really going to love the scrapbook. Also, if you think about it, please pray that I get a job soon. I have been hunting and hunting for one. I really, really REALLY need one too. All of our savings, and reserve money have been tapped out. I am sure you parents know what I mean when I say “the wolves are banging at the door”. I don't think it is right for my husband to shoulder all the burden to get the wolves to “go away”. So, I have decided to get a job to help out. Please pray I get one soon!! That is it for today, thank you for checking on us. We love you all. With love from Va, Carolyn UPDATE: 7-20-05 Hello everyone! Thank you all for all the well wishes concerning my spider bite. I thought it was getting better, and then yesterday, it started turning red and swelling again. At least it's not as painful as it was last week. I am continuing on the medication and I hope it helps. Fisher had an appointment with his neurologist yesterday. The headache issue was addressed. The doctor put Fisher on a preventative medication. Another issue that came up again, was Fisher's size. He still isn't gaining any weight, and his growth rate has slowed down again. He is barely on the 2% curve. The medication for his headaches is supposed to stimulate his appetite. The doctor also ordered a whole array of blood tests. We should hear about them soon. Please remember Fisher's Birthday Project. It is fast approaching! I am so excited. He is going to love the scrapbook. Well, that is it for today. I hope you all have a great week. Thank you for checking on us. We love you all. With love from Va, Carolyn UPDATE: 7-11-05 Hello everyone! Happy Monday to you all. I hope you all had a wonderful weekend. Ours was so so. Fisher still has a cold. He also has had nosebleeds off and on since Thursday. Of course I was on the phone to the dr and they seem to think that the nosebleeds are because of his cold. Last night he had us really worried because he had what Kody likes to call a "monsterache". We are hoping that it was also because of his cold because right now, he is fine. In fact, he is playing Spyro and he says his head doesn't hurt at all. I tell ya, it really scares me when he gets those headaches. I have to say last night was probably about as bad as I have seen him since before chemotherapy. He has an appointment coming up with his neurologist, so we will see how that goes. Last Thursday we had the opportunity to meet some of Fisher's fans. They visited us all the way from Kansas! Raquell, Ed and Snibbles (Snib is from Williamsburg, Va). Thats right, we were able to meet part of Webre Racing! Fisher was thrilled to meet them. They had special gifts from Fisher's "Pretty Butterfly Lady", Dianne. They presented him with a butterfly bear, and a butterfly chain. He has carried them both around all weekend. Raquell made me a butterfly ankle bracelet. I just adore it. We visited like old friends for awhile, then, we went outside (to let Ed thaw out I think) and once the camcorder came out, my little ham went into action. He did scenes from "Fisher's Adventure". I'm not quite sure where that came from, but he sure put on a show for them. Somewhere in all that, they found a toad. Of course they had to capture it and pet it. Thankfully, they let it go. I am so glad they came by to meet us. I guess hurricane season is here. We have lots of friends who have been and will be effected by Dennis. Please remember them all in your prayers. Thank you all for continuing to check on us. I don't know where I would be without all your love and support. You all mean so much to us. Have a wonderful day. With love from Va, Carolyn Today's Fisherism: "I just love the smell of Summer in the morning!" UPDATE: 7-6-05 Happy Wednesday everyone! I hope you all are having a wonderful week. Things here are going so so. We finally got the van fixed. Turns out it was the cooling fan relay that was causing all the problems. So, hopefully, we won’t have anymore problems. I have a prayer request for you guys. There is a very special couple who is a major source of love and support to many families here. They are going through a very tough time right now. I ask that you pray for this lovely couple. God knows who they are without me naming them outright. I can’t say enough about what this couple means to me. Thank you for praying for them. Fisher has a nasty cold, which he so kindly shared with his mom. Wasn’t that sweet? He is still having headaches, but, now I wonder if they are from the cold or something else. I am trying to remain calm and wait till his next MRI. Speaking of the MRI, it has been changed yet again. Now it is August 13th. This time I’m glad because it had been rescheduled to be on his birthday. So, August 13th it is. Please pray that these headaches and the neck pain are not attributed to his tumors. He also has his two upper front teeth trying to come in before the baby teeth are gone. Bless his heart; he can hardly eat his #7 combos from McDonalds. But he sure gives it a big try. Please remember the Birthday project we are working on. Fisher is really going to love it. That’s it for today, thank you for checking on us. We love you all. With Love from Va, Carolyn and Fisher UPDATE: 6-30-05 Hello everyone. I hope you are all having a great day. Today it’s rainy and gloomy, which pretty much fits my mood. Our stupid van still isn’t working. It is really starting to pluck on my nerves. Robbie is going to try and work on it again when he gets home from work. Fisher also had a rough night last night. He had a headache and he said his eyes were all “fuzzy”. So, to me, that means he had a headache with blurred vision. He wasn’t throwing up, but his speech was very slurred. Thankfully this morning, he is feeling better and talking better. We have a new date for his MRI because the doctor wants to include the cervical spine. (Fisher has also been complaining about that hurting too.) The thing is, the new date is on his birthday. That was the date his nurse could get, so we have to go with it. Please pray for my little Fishie Bug. Please remember the “Birthday Card Project”. I think he really is going to be surprised. I know he is going to love it because he will get to “see” all of you. He really loves you all so much. Well, that is about it for today. Oh yeah, I still have that special unspoken prayer request. Please remember that in your prayers too. Thanks for checking on us. Have a wonderful day! With Love from Va, Carolyn and Fisher A Message from Fisher: “Hello everyone! Thank you for checking my page. Remember God loves you.” UPDATE: 6-28-05 Good morning everyone! I hope you all are having a wonderful week. It sure has been hot here in Virginia. We finally got some rain, but we still need more. Thankfully, we are supposed to get some more today. We had a good weekend. Fisher woke us up early Saturday morning, he wanted to go to the ‘best- place -to –eat- French- fries- in- the –whole- world” aka The Silver Diner. He loves to go there and place the jukebox. Later that afternoon, we went to “Cancer Survivor Day” at the hospital. We were able to see a lot of old Friends. It was so wonderful to see them all again. After that, Fisher wanted to go to the park, so to the park we went. He played and played. We stayed there until a gang of teenagers came and started terrorizing the younger kids. I hate it when that happens. So, we left and went home. On Sunday, we went to visit my sister-in-law and brother-in-law in North Carolina. It is always nice to spend time there. They live in the ‘country” and it is so quiet and peaceful. So, our weekend was pretty busy. Fun and busy. Then came Monday! Our van “blew’ the thermostat. So, today, Robbie will be fixing that. We were supposed to meet with some of Fisher’s special friends for dinner. He was so disappointed. We assured him that we would reschedule it and soon, so that helped him a little bit. But only a little bit. Fisher is getting so excited about his birthday. He has no idea the surprises we have in store for him. He says that since he is going to be seven, he is almost a teenager, so he should be allowed to have games that are rated “T”. Nice try Fisher. He comes up with the strangest things. He told us that he really, really, REALLY wants an “Everlast Flashlight”. A flashlight. Only Fisher would ask for a flashlight. So, we will begin our search for one that is available in the stores. (mail order isn’t an option for us) He is just so funny. Please remember the scrapbook project. He is really going to be excited and happy to see all the pictures and cards. I want to thank everyone who contacted me about my last post. I’m sorry if I worried any of you. Please remember us in your prayers. Well, that is it for today. Thanks for checking on us. We love you all. Have a great day!! With love from Va, Carolyn and Fisher Today’s Fisher Funny: What do you call a snail on a ship??? A snailor! UPDATE: 6-23-05 Good morning everyone! I hope you all are having a wonderful week. The weather here in Virginia has been very nice. We really need some rain though. Fisher has been complaining more about his back and neck hurting. He told me the other day that his back hurts him all the time. I rarely hear him complaining about being in pain, so when he does, I really get concerned. The doctors still want to wait till his next MRI which is in August. It’s the day before his birthday actually. Which brings me to… Fisher’s Birthday Scrapbook!! I have had several emails asking where to send the cards, what to send, etc. Please send them to Fisher’s PO Box. I am the only one who ever checks that box, so, everything will be a surprise to him. Please, if you would, include a photo of yourself and or family so I can put the cards and photos in a scrapbook for him. I have also been asked what else he would like. Here are some ideas of things he likes: coloring books, math workbooks, books to read (level one). Of course, he loves his games, he has discovered Star Wars and Batman. Basically, anything for a little boy. Please know that I am NOT asking for gifts. Your card and picture is just wonderful to send. I just thought I would post some ideas of things he likes, because I have had some emails asking. Thank you all so much for participating in this. It is going to be a wonderful surprise for him. When ever he has MRI’s day after is usually rough for him, so, the scrapbook will be a wonderful boost. My family is really going through a difficult time right now. It seems that as soon as we get one thing resolved, something else hits us in the face. There are times when it is almost too much to bear. We keep hanging in there and by the wonderful Grace of God we will make it through. In the Bible God says, “My grace is sufficient to meet your needs”. I am clinging to that Promise. Please pray for my family that we will make it through this difficult time. Thank you for checking on us. We love you all. With love from Va, Carolyn and Fisher UPDATE: 6-20-05 Hello there. I have a special prayer request for you. We have been hit with yet another illness in our family. Our oldest son, has had a nervous breakdown. He has had to see numerous doctors. The doctors have put him on medication and he seems to be getting better. This latest blow to our family has really hit us financially. We have 10 days to come up with $400 to make the rest of our house payment. We have the remaining money to put with it. Could you please ask your prayer warriors to pray that we meet that deadline? Once we get past this little bump in the road financially, we will be ok. Thank you so much for including this prayer request with the others. With love from Va, Carolyn UPDATE: 6-16-05 Good morning everyone! Well, he did it!! Fisher graduated kindergarten! I know to some, that isn’t a big deal, but, Fisher has come a long, long way in a short amount of time. I am so proud of him. He also received two awards, one for reading 142 books another for maintaining perfect scores on his Math Benchmark Tests. He is so proud of both achievements. When he was asked if he was happy that school was over, he said, “Well, ACTually, I’m not! I love school! I want to go all the time!!” When he pronounces “actually”, he emphasizes the “act” part. I have added new photos to the photo page. Last Saturday, we took Fisher to the Virginia Aquarium. They have a summer bird exhibit. In this exhibit, the kids can hold a craft stick that has bird seed on it, and the birds will come and sit on the stick. As you can see in the pictures, it just thrilled Fisher! My favorite picture is the one in the middle where he is nose to nose with a huge sea turtle. I love the photos that show his reflection as well has his cute face. We had a wonderful time. If any of you come to Virginia Beach, you really should visit the aquarium. You won’t be disappointed. Again, I have to thank you all for all the postcards, cards and packages you have been sending Fisher. You have no idea how much he loves it when he gets mail. So, thank you from the bottom of my heart. Please keep them coming. It really brightens his day. I have started a “Birthday Wishes” Scrapbook for him. I would really love to include birthday cards from all his Caringbridge friends. I would also love to put a picture of each of his friends with the card. If you could please send him a birthday card, and a picture I would appreciate it. (The pictures will NOT be put on the internet. This is just for Fisher.) Thank you all so much for helping me with this. I hope to have many, many cards to put in his book. That’s it for today. Thank you for checking on us. We love you all!!! With love from Va, Carolyn and Fisher Today’s “Funny Fishie Story”: Fisher and I are in the elevator at the Hilton to go the pool. (The pool is on the top floor and the button in the elevator is labeled “P”) We stop on the 12th floor and a gentleman gets on. Fisher looks at the man and says, “Are you going to P?” Have a wonderful happy day!!! UPDATE: 6-7-05 Good Morning everyone!! Sorry it’s been awhile since I have updated. This one is going to be a long one. The day Fisher had his MRI, he also had a bone age study. We got the results back, and it seems that although Fisher will be seven years old soon, his bones “think” he is only four to five years old. We thought that he may have to go on growth hormones, but his endocrinologist wants to hold off on any type of treatment for now anyway. I am happy about that, because from what I understand the only way to get the growth hormones is through an injection. Thankfully, we won’t be doing that just yet. Memorial Day Weekend was my 18th wedding anniversary. We had a wonderful time. We took the kids to the Virginia Aquarium. That place is amazing! I will have pictures posted later on this afternoon. Fisher had a wonderful time. The Tuesday after Memorial Day, Fisher twisted his ankle. Poor little guy had to be splinted, and he had to be carried around for part of the day. That was until his Granny surprised him with a Red Rider Wagon. He loves that thing. So, he was out of school for the week. We still have to watch him, and if he is still having problems we need to have it x-rayed again. Some of you long time followers of Fisher; remember that he has had problems with his eyes. Well, last Friday, he had an appointment with his eye doctor. His left eye has gotten progressively worse. From what the doctor said its out of focus and “out of line”. So, now our little guy is wearing glasses. He looks so cute. I can’t look at him without saying “awwwww”. In a few months, we are going to need to start patch therapy on him. (that ought to be fun) I have to say a special thank you to Fisher’s friends at the Virginia Beach Hilton. He was their special guest over the weekend. We had so much fun. Thank you so much for everything!! I also have to say another special thank you to one of Fisher’s Keith Urban friends, “Aunt Judy”. Not a week goes by that she doesn’t send him several postcards. He really looks forward to his “Happy” Mail. We really appreciate everyone who sends him cards. They really cheer him up. Even though he is off treatment, we can’t say that he is in remission; we can’t say he is cured. There is no “curing” what he has. Neurofibromatosis is not curable. I can see how it affects my sweet boy. He tries to hide it, but I can see how he feels in his face. We are hoping to participate in the Rock-n-Roll half marathon Labor Day weekend to raise money for NF research. I will let y’all know the specifics on that. I am also trying to get together some other things to help raise money for NF. Anyway, back to the happy mail, please keep it coming. Fisher loves it so much. Well, this is long enough, thank you for checking on us. I hope you all have a fantastic day!! We love you all. With love from Va, Carolyn and Fisher UPDATE: 5-26-05 Good morning everyone!! Well, we have a happy boy today! Fisher’s “love” won American Idol. Actually he said that he thinks that Bo is cool, and Carrie is “bootiful”. So, he would have been happy either way. He said that Carrie is just soooo pretty. Plus she sings country and his is my country boy! When the American Idols come here, we are going to try and get Fisher in to see them. More about our boy. He is doing so so. The headaches are back and he is complaining about not being able to see. We have appointments lined up with the appropriate doctors. I will let everyone know how all that goes. Now about Fisher’s birthday project.. For those of you who would like to participate, I would like to put together a huge scrapbook with lots and lots of birthday wishes for him. His birthday is August 3rd. This would really make him so happy. He is feeling down because he doesn’t understand why he still feels so badly even though his tumors are stable. To be honest, I really don’t know how to answer him on that. So, maybe this will help cheer him up. Also, once again this year, I am trying to get him in to meet the Dallas Cowboys. My dear friend Stacy lives in Dallas, and she has been working on this as long as I have. If any of you have any ideas on how to accomplish this, I would greatly appreciate it. I hope you all have a wonderful day and a happy and safe Memorial Day. If any of you are traveling anywhere, (Katie!!) please be careful!! Thanks for checking on us. We love you all. With love from Va, Carolyn and Fisher UPDATE: 5-18-05 "And everything I have, and everything I see, Is just another reminder that God's been good to me" - Keith Urban "God's Been Good to Me" Last Friday was the Special Olympics. Fisher participated in both the 50 meter relay and in the Softball Throw events. He placed third in the relay and second in the throwing event. When he was running in the relay, I got so choked up. Last year, he was unable to run, he walked really fast. This year, he was able to run. What a difference a year makes!! Of course, the entire event wiped him out so much we were not able to go to Relay for Life. He was asleep for the night before 7:30. Monday was our visit at the Brain Tumor Clinic. All the doctors there agree that Fisher is doing great. Fisher had to show off to Dr B, that he can now walk on his heels. During treatment, Fisher had experienced some foot drop from the vincristine, and that added to his tripping and falling. Now the foot drop has significantly decreased. The tripping is still there, and so is the choking and gagging. The doctor thinks that is from damage from the tumor in his brainstem. The only other issue is that Fisher is mildly anemic. The next MRI will be in August. If that one goes well, he will graduate to MRI’s every 6 months. Yesterday we had Fisher’s IEP meeting. In academics, Fisher tests above his current grade level. His strong area is Math. He loves to add and subtract. He is quite good at it too. He also loves to sound out words. I am just so proud of him. He has worked so hard. It’s almost enough to make me forget that he has brain tumors. But then he will have a choking episode, or stumble and fall, or have a monster headache and I am snapped back to reality. He has started asking the “why” questions. “Why do I have tumors?” “If God loves me, why did He let me have tumors?” I find it difficult to answer his questions when I have the same questions myself. So, please keep the cards and postcards coming. They really do cheer him up. His birthday is coming up in August. What I would like to do is put together a scrapbook with lots of birthday wishes for him. Also, he has a Smile Quilt that hasn’t had any squares added to it in awhile. If you would like to have the wonderful ladies add a square for you, you can go to http://smilequilt.com/fisher.html and follow the instructions at the bottom of the page. Thank you for checking on us. We love you all. With love from Va, Carolyn and Fisher UPDATE: 5-9-05 Good morning everyone! I hope you all had a great weekend! Well, this morning I got a belated Mother's Day present and it is the best present ever! Fisher's tumors are all STABLE!!!!!! I am so happy! I am praising the Lord! You all know how worried I have been about this MRI. To hear they are all stable was the very best news I could have received today!! Thank you all for your prayers and good wishes! I have a special project I am thinking of for his birthday, and I will post that soon. I just had to let you all know my wonderful news! Thank you for checking on us! We love you all! With love and thankfulness from Va, Carolyn and Fisher UPDATE: 4-27-05 Hello everyone! We finally have a date for Fisher's next MRI. It will be on May 6th at 3pm. Fisher won't be able to eat or drink anything after 7am that day, which really stinks. But that was the next available time and we grabbed it. I am going to wake him up at 630 am and let him eat a #7 combo from McDonalds. Today has been a bad day for the "brain cracking". It has happened to him twice today. I can't wait to see what this MRI shows. Last night, Fisher went to the Make-a-Wish fundraising event at Coldstone Creamery. He had a blast! He sang songs with the employees, he told the customers about his wish to Disney, he even treated them to his verison of "Days Go By". We had so much fun there. It was a successful event for MAW and we are so happy we were able to be a part of it. Today, we went down to the oceanfront to meet with Fisher's friends at the Va Beach Hilton. We had lunch with Miss Katie and Mr Brandon. Fisher just adores them. I have to say, they are so nice. We had a great time visiting them. That is about it for today. Yall have a great week. Thanks for checking on us. Please keep those postcards and Happy Mail coming. It really brightens Fisher's day. With love from Va, Carolyn and Fisher UPDATE: 4-22-05 Hello everyone. Yes, I am finally updating! We still don’t have a date for Fisher’s MRI yet. I called his nurse yesterday, and I missed her return call. I will try and get up with her today. Fisher had an appointment with his neurologist on Monday. The brain cracking remains a mystery to everyone. The headaches are still an issue too. Hopefully, this MRI will give us the answers we need. Another concern that has come up, Fisher’s growth has slowed down. He is rather small for his age. On the day that he has his MRI, he will also have an X-ray of his wrist to determine the “age” of his bones. So, we will see. On a more positive note, Fisher is has improved dramatically in school. At the beginning of last school year when he was in preschool, he was 5 years old, but he was barely functioning at a 3 year old level. This year, he is 6 years old, and he has caught up with his age, and will be ready for the first grade next year. He is reading basic books, and he is very good in Math. This is such a miracle for him. He is such an amazing little boy. Of course his special education teacher is a wonderful, wonderful teacher. I am going to miss her next year. Fisher loves school so much; he is like a sponge when it comes to learning new things. The newest addition to our family, Fidget, is doing great. He is so rotten. He follows me around like a little shadow. I haven’t had the chance to take any pictures of him, but I will try and do that this weekend. Well, that is it for today. Thanks for checking on us. I hope you all have a wonderful weekend. We love you all. With love from Va, Carolyn and Fisher UPDATE: 4-12-05 Good morning everyone. I hope everyone is having a great week. Things around here are about the same. Fisher is still having some of the brain cracking episodes we have been concerned about. His MRI is the last of this month, or the first of next month. I can’t wait to see what it shows. He is acting a bit lethargic too. Thank goodness he has an appointment with his neurologist next week. He is doing great in school. He loves to go to the “Learning Centers”. I am amazed at his progress. He can read simple books, he loves to add numbers, and his handwriting is improving everyday. He is still having difficulty staying focused, and on task. But even that is getting better. Over the weekend, he lost another tooth. That ol’ tooth fairy still didn’t bring him an X-Box. But he still has hope it will happen. (I’m glad “she” can take the heat for not getting him one. He does NOT need an X-box LOL) Another big event happened over the weekend. We had an addition to our family, a 2 or 3 week old kitten. Saturday, when I went to pick Robbie (my husband) up from work, he was taking a long time coming to the van. When he got there, I found out why. He found an abandoned baby kitten in a pile of scrap metal. So he brought it home. Now we are taking care of it. (That ‘we’ really should be “I” am taking care of it) Anyone who knows me well, knows, that cats really aren’t my “thing”. But this little guy is a cutie, and I couldn’t resist. Fisher named him “Fidget”. Well that is about it from us. I hope you all have a wonderful day! Thanks for checking on us. The post cards are still coming in, Fisher loves them! So, thank you all for continuing to send them. They really are important to him. It just makes his day to get them. With Love from Va, Carolyn and Fisher UPDATE: 3-25-05 Good afternoon everyone. I am so glad that today is Friday AND that it is the start of Spring Break. Fisher is glad too. He has determined that his goal for the week is to TOTALLY beat his Spyro game. He has had a tough week I am glad that he will have a week to rest. Last night, we stayed the night at the Virginia Beach “Ritzy” Hilton. Let me tell you this, we had the best time!! It was so wonderful. From beginning to end, it was wonderful. Fisher walked in and won the hearts of several of the staff members. I really have to thank one in particular, Catering Manager Katie. She made our stay so wonderful. Most of you know that Fisher is allergic to any and all dairy. Katie personally talked to the chef and he made Fisher an enormous bowl of spaghetti (no cheese). Fisher fell head over heels in love. She really “made” our stay. Okay, our stay from the beginning! When we arrived at the oceanfront, we easily found the Hilton. I have to say that the “strip” has changed quite a bit since we were there last. But, of course A LOT can change in 17 years! Anyway, we drove up to the front of the hotel, we were greeted by the guys doing the valet parking. (Another first for us) Fisher thought it was totally cool that someone else had to go and find a parking spot. When we went to check in, our little “King” Fisher had to do the signing in. That just thrilled him to death. He then spotted the snow cones. He loved the cherry flavored ones. Then he had to get a hug from the CHKD “Cheer Bear”. ( I will have photos posted later tonight) All the while he had to have “Ms Katie” with him. *I* spotted some of my friends from the clinic. It was so nice to see everyone again. After we visited in the lobby for awhile, we went to our suite. All I can say is WOW. We had view of the ocean that was breathtaking. The room had a widescreen plasma TV in it. The rooms were stunning. Simply stunning. After we freshened up a bit, we went down to dinner. Dinner was fantastic. Grilled veggies, chicken with ricotta cheese, sweet potato casserole and fresh fruit. After dinner, there was a puppet show, face painting and a bedtime story from King Neptune. After the nighttime activities were finished, we went back to our room and the beds had been turned down and there was a very special gift waiting for Fisher. A Va Beach Hilton Bathrobe that had “First Guest” monogrammed on it. After a long warm bath, he finally passed out asleep. We had such a wonderful time. We have to send a big thank you out to everyone at the Hilton who made it such a special night. Other happenings with Fisher have been these terrible ‘brain cracking” episodes. He also has days when he just feels so bad, he can’t get out of bed. Anyone who knows Fisher knows that it is unusual for him to stay still for more than five minutes, let alone an entire day. The choking continues to be a problem too. This next visit to the neurologist (in a few days) and the next MRI can’t come fast enough for me. Today, when we went to the post office, we were THRILLED to see the box full of happy mail!! Thank you all for still sending smiles to my boys. I can’t really go into the details, but today was a pretty icky day for me, and when I saw all the mail and all the love sent to my boys, it really lifted my spirits. I won’t try to list everyone, because knowing me, I would leave someone out. But to all of you…THANK YOU SO MUCH!!! That’s about it for now. I hope you all have a wonderfully blessed Easter. I am so thankful that we can have faith in a Risen Savior. Thank you for checking on us. We love you all. With love from Va, Carolyn and Fisher UPDATE: 3-19-05 Good afternoon everyone! Happy Friday! I am so glad the weekend is here. As you probably already know, Caringbridge has had to take extreme measures regarding linking pages together. So, all the links that were once on Fisher's page are now gone. I hope that somehow all this can be resoloved because part of what makes Caringbridge so special for us, is the fact that we are all one big family here. Fisher is having a pretty bad week. He has had headaches nearly everyday, and he is having really bad mood swings. Its hard for me to know if the mood swings are because he is a *bit* spoiled, if it is tumor related, or if it is a combination of those two. I am hoping that we will have a better weekend. He is looking forward to next Thursday. A local "ritzy" hotel has invited some of the clinic kids to come and be the first guests to stay at their new location. We are both very excited about that. I can use the time away even if it is just for one night. Well that is about it for now. I hope you all have a wonderful weekend. Thanks for checking on us. We love you all! With love from Va, Carolyn and Fisher UPDATE: 3-16-05 Hello everyone! I hope you all are having a happy day! Well, the tooth fairy visited our house last night. NO, she did NOT leave an X-Box. She was very generous and left Fisher $1. He seemed happy enough with that. Believe it or not, Fisher's dad, actually considered trying to get him an X-Box. He changed his mind quickly when I pointed out that this was the FIRST tooth Fisher had lost. What would the TF do with the next one? I knew I could get him to switch over to my point of view. Fisher had a rough time last night. He had a terrible headache that was making him sick to his stomach. He never actually got "sick" but, it was very obvious that he was very uncomfortable. I, of course, was freaking out on the inside. On the outside however, I remained calm, gave him a Tylenol, he went to sleep. This morning, he woke up and he said he felt better. He hates to miss school, so off he went. I have been sitting by the phone waiting for the nurse to call, but, so far, so good. Well, that is it for today. Not a whole lot is going on. Please remember all the families dealing with the loss of their precious children. Thanks and have a great day! With love from Va, Carolyn and Fisher UPDATE: 3-15-05 Loose tooth update!!! Fisher lost his first tooth at school today! He looks so cute with his little tooth missing. There is another one loose too. He is still convinced the tooth fairy is going to bring him a X-Box. I guess he will find out that the tooth fairy only delivers quarters! ************************************** Fisher is having his good days and his not-so-good days. One of my biggest concerns is this “brain-cracking” he keeps having. We are still trying to make it through to his next MRI. He is still so brave and so strong. He gets tired of the headaches and of the feeling not so great. But, he rarely shows that he is in any discomfort, and he gives me lots of hugs and kisses every day. Yesterday we got a wonderful surprise! Sweet Angel Cheyenne’s coach (I think that is who it was) sent Fishie the cutest, most cuddly blanket ever. He absolutely loves fleece, and Mickey Mouse, so the blanket was perfect for him. I of course, cried when I saw it because it came “from” Cheyenne. I know I never “met” her but, her bravery and grace in handling inspires me even still today. So, I big THANK YOU to the friends of Cheyenne for the wonderful blanket. That’s about it for this morning. I really do appreciate you all checking on Fisher. Please continue sending the happy mail, he loves hearing from all of you. Thanks again. Have a happy day! With love and prayers from VA, Carolyn and Fisher PS. Fisher’s buddy Jessie was recently deployed to Iraq. Please keep him and the rest of our military men and women in your prayers. Thanks. UPDATE: 3-4-05 Good morning everyone!! Happy Friday! I am so happy the weekend is here. It has really been a rough week here. Not a lot I can go into here in a very public forum, but, I am almost at the end of my rope. I am sure any of you who have teenagers can empathize with me. That should tell you all that its not Fisher that made it a rough week. Although, he has had some rough points too this week. Please, if you think about it, say a prayer for my family. Its funny how when you are the parent of a child who is going through what Fisher is going through, how the little things other parents take for granted can get you so excited. Well, we have TWO such things going on here! First of all, Fisher has made it to a major developmental milestone, he can RUN. Not just walk superfast, he can RUN. Now he is like Forrest Gump where ever he goes.. he is "Runnnning". The next one is Fisher has a loose tooth! He can't wait to have a visit from the tooth fairy. (He thinks the tooth fairy is going to leave him a X-Box. I say yeah, keep thinking that! Other things are going on with him too that we never thought would happen. He is learning to read, he can almost tell time (on a normal clock) and he can count to 150. I know most people would be like "So?" But this is a child that we didn't think would even make it to his 5th or 6th birthday, so all of these milestones are so precious to us. Thank you all for your love and support! We love you all! With love from Va, Carolyn and Fisher UPDATED: 2-26-05 Good evening everyone! Thanks to everyone who helped me with the site that had the drawings. I showed the drawings to Josh. His response was “Mom, I’m not that good.” I told him that I still wanted him to do a drawing of Fisher for me for my birthday. He looked through my pictures and picked three different ones, and told me that the one he finally draws will be a surprise. He really is talented and when I get it, I definitely will post it. Now on to Fisher, he has informed his family that he no longer wants to be called Fisher. He told us, that his name is now “Hammer”. He said he got the idea off of a PBS Kids show, “Arthur”. He is something else, and he always finds a way to crack me up. This evening we were out running our Friday errands, and he told me that they were taking the spring school pictures next week. He asked me if I would make sure his hair is extra “spiky”. Then he said something I was totally unprepared for. His big hope for the week is that he doesn’t get a “zit” before picture day. At 6 and a half he is worried about getting a “zit”. I thought I was going to fall out of the van. I told him that I can pretty much guarantee that he wouldn’t have a zit on picture day. Anyway, have a great weekend! Thanks for checking on us. Please keep the “happy mail” coming for Fisher. He really looks forward to getting the cards, postcards and letters. If you get the chance stop by Sharethelove.org, visit a few sites, and sign the guestbooks please. It really does help lift the spirits of the kids and their families. With love from Va, Carolyn and Fisher UPDATE: 2-19-05 Hello everyone. I hope you all are having a wonderful Saturday. We are doing pretty good here. Poor little Fisher just cried and cried when I told him about his Pretty Butterfly Lady. Its hard for him to understand. Then he dicated a letter to her for her guestbook. He said to me, "First my Nanny, then my Papaw, then 'Chey-Chey' now Butterfly Lady. I don't understand. I know they are in Heaven with Jesus though. I know they are happy, but I am still sad." I am a bit worried about him though. He keeps complaining about headaches, and his "brain cracking". He still is gagging a lot, and I do mean A LOT. Today he was just standing there, and he started to gag like he was going to throw up. We are still watching him closely and on Monday, I am calling his nurse. Anyway, I will update on Monday or Tuesday, to let everyone know how he is doing. Until then, have a wonderful rest of the weekend. Thanks for checking on us. We love you all. With love from Va, Carolyn and Fisher UPDATE: 2-8-05 Good evening everyone! Well today was “Doctor Day” for Fisher. It started early and ended late in the afternoon. Our first stop of the day was with Fisher’s neurologist. He examined Fisher from head to toe. He only had a few concerns. First and foremost, Fisher is still very small for his age. He is in the 5%tile for height and weight. (This is a new one for me because his brothers were always off the charts) He weighed in at 37 lbs and he is 3 feet 7 inches. Another concern he had was that Fisher’s neck muscles aren’t strong. Other than that, he was amazed at Fisher’s progress! Also, concerning the headaches and the “cracking”. I have to keep a calendar and a journal as to when they happen and how often. Then we will go from there. So, unless something comes up, we don’t see him again for another 3 months. Oh, and he went over the MRI report with me. As, I suspected, everything is stable! After the neurologist, we had Brain Tumor Clinic. When we parked the van and got out, we were surprised to see some old friends walking by! Brandon and his Mom. (Brandon’s link is above) It was so great to see them. It had been a long time since we had clinic together. We went to triage, and Fisher was weighed and measured again. He was happy that he didn’t have to get his blood drawn. (They did that at the time of his MRI while he was asleep!) The first doctor to come in was the endocrinologist. She was happy because Fisher had gained a pound since November, and had grown a ¼ of an inch. Also, all his blood levels came back well within the normal ranges. Including his calcium. Hooray!! Our next visitor was a surprise visitor for Fisher. I covered his eyes, and when I removed my hands, who was standing in front of him? MR. BRYAN!! Fisher just hugged and hugged him. Fisher was so happy to see his buddy. Anyone who had clinic on Monday with us, knows just how important Mr. Bryan is to Fisher. Well, to all the kids really, but, Fisher really connected with him from day one. In between hugs, Fisher told Bryan all about Disney and about school. Then it was doctor time again… Our next doctor was the neurosurgeon, she is new to our clinic, and she was wonderful. It sort of threw a wrench in Fisher’s day because she was someone new. But, as the visit went on, everything was fine. Next, was Fisher’s oncologist. I have to say; today was probably one of the better visits. I felt like all my concerns were addressed. He too is a bit puzzled by the headaches and the “cracking”. Since Fisher is getting scanned so often, if anything is going on, we will be able to catch it. I know what to look for, when to call, etc. For those of you who do not go to CHKD, I really hope that you all have as wonderful of a social worker as we have. She has become a friend to me and know for certain, I would not make it through this with out her. Last but not least was the educational liaison. I have absolutely no concerns about Fisher’s school or his teachers. They are all wonderful, caring educators. So then we were off to do some visiting of our own! We went to the clinic and we were able to see more of our friends. It was so wonderful to see them all. You guys know how much we love you all. You are all the best! So, the news for today was that the tumors are stable and we will be keeping notice of these headaches. Finally, I don’t know how many of you know this, but, as of January 31, 2005, Fisher has been off chemotherapy for ONE YEAR!! Thanks for checking on us! We love you all! With love from Va, Carolyn and Fisher UPDATE: 2-4-05 Good morning everyone! Boy this has been some week. Everyone here has been stricken by the cold/flu bug. Robbie and Fisher have been hit worse with it. Both have been out of work and school all week. Slowly we are all getting better. But, it has been a slow go of it. Fisher has been in bed nearly all week snuggled up with his stuffed monkeys. Fisher has an entire day of appointments on Monday. His neurologist in the morning, and then Brain Tumor Clinic in the afternoon. His headaches and the brain "cracking" continue to be an issue. Hopefully, we can learn about it then. I have some extremly good news about our friend Emily! She has reached her goal!! We are so happy for Emily and her family. Please continue to pray for them all. That's about it for today. Thanks for checking on us. We love you all!! With love from Va, Carolyn and Fisher UPDATE: 1-31-05 Hello again! Okay, final chapter of the Disney saga! (If you have missed any, please check the journal history.) After Fisher and Michael chased the birds off, and played a little, we decided it was time to make our way back to the entrance of the park. My friend’s son, Geordan, wanted to ride Splash Mountain at least once before we left, so, they went to stand in line, while Fisher devoured yet another extra large pack of fries. Poor Geordan had to stand in line for what seemed like forever. But, when it was all said and done, he had a fabulous time. On the way out of the park, he surprised all of us by presenting Robbie with a gift. Geordan really is a great kid, and I am so glad we were able to spend time with both he and his mom. Fisher was very happy about the day, and the trip, but by the end of the day at Magic Kingdom, he was ready to go home and see his “Brudders”. So, we all went back to the hotel, spent a few more moments, together, then Joanie and Geordan started on their trip back home and we got everything packed to leave for home. ***Florida to Virginia in One Day*** When we got our wake up call at 2 am, I was about ready to scream my head off. But, I got up and got dressed, and off we went. Getting up that early was a great idea. There was little to no traffic on I 95. The cars that were traveling,, must have thought that “95” meant the speed limit, because I was going 75 and they were all flying by me. We made terrific timing until we hit North Carolina. The closer we got to the Virginia State Line, the worse the weather got. We must have seen 30 accidents in a 100 mile spread. I was so thankful for the car we rented. We never slid the first time. Finally, we made it home! I was so happy. I really had a fantastic time, but, I really missed Joshua and Wayne. **I’d Like to Thank the Academy** Well, not really the Academy, but, there are some people I really have to thank. I really hope I don’t leave anyone off. If I do, please know it was not intentional. 1) My sister Terrie, who wrote the letter nominating Fisher to be an Disney Kid. Without her, we would not have been able to go. I thank God everyday I have a sister like Terrie. She is absolutely wonderful I love her so much. 2) Our favorite radio station, Eagle 97. This trip was an adventure we will never forget. Yes, Fisher went to Disney on his Make-A-Wish trip and it was great, but he was so sick at the time. This trip, he felt great, and he was able to thoroughly enjoy it. Thank you so much. 3) The Tim Miller Foundation and ICS Systems for sponsoring this wonderful event. 4) To all of our friends who gave Fisher “spending money” thank you. It was nice to be able to allow him to purchase basically whatever he wanted. 5) All the kids and parents who went on the trip. You all are very special to us. 6) Joanie Marie, thank you so much for driving all the way to Orlando to see us. You are such a sweetie. We are so blessed to have you in our lives. 7) Geordan, Robbie loves the mug you gave him and he sends his thanks too. That pretty much ends our story about Disney. Now we are home and back to the reality of life. Now, Fisher and I are sick with nasty colds. He has me so worried because he keeps complaining of headaches. He is also telling me that it feels like his brain is “cracking”. Apparently, this “cracking’ is happening more and more. So first thing in the morning, I am calling his neurologist. Yesterday when it happened, he cried for a few minutes afterward. So, the DR is getting a AM call from me. As soon as I hear something, I will let you all know. Well, that is about it for tonight. I hope you all have a wonderful week. With love from Va, Carolyn and Fisher UPDATE: 1-26-05 Good morning everyone! I guess I should finish Fisher’s Disney Adventure now! (If you missed the first half, please check the journal history.) **Fisher and MGM Studios** After the live broadcast, we all decided to stay at MGM Studios. Robbie just had to get on the Star Wars ride. He said it was a blast! While he was fighting Darth Vader and the Dark Side, Fisher and I met with Tigger. I don’t know which one had more fun, Dad or Fisher. One of our special memories from Fisher’s Make a Wish trip, a year and a half ago, was the Indiana Jones Show. At that time, we were treated to VIP seats, and a special Meet and Greet with Indy’s stunt double, Jim Sheers. During the meet and greet, Mr. Sheers gave Fisher a very special gift, his Indy hat. The MaW trip was very different for Fisher in that, he was right in the middle of his chemotherapy, and he really didn’t feel all that great. For this trip however, he felt terrific! We just had to stop by and see if Mr. Sheers was still there, so he could see how wonderful Fisher is doing now. Well, not only was he there, but the two ushers, who arranged the first MandG were there. They were thrilled to see Fisher, and yes, after all this time they still remembered him. George and Millie remember Fisher with no hair, this time, he has a full head of very thick hair. When they called Mr. Sheers to let him know that Fisher was there to visit him, he also, was thrilled to see Fisher. Unfortunately, Mr. Sheers hurt his hand during the show right before ours, and he didn’t play Indiana Jones. He was in the show in another role though. After the show, he came over and gave Fisher a big hug. He commented on the full head of hair, and when he heard about the tumors being stable, he was very happy about that too. Then, he surprised us again! He took us on a private behind the scenes tour of the Indiana Jones show. It was hard to tell who was happier, Fisher or his Dad! After Indiana Jones, we then made our way to the Playhouse Disney show. We were able to see all of Fisher’s favorites. Bear in the Big Blue House, Winnie the Pooh and his all time favorite Stanely! He shouted a big hello from the audience to Stanley from his friend Matthew. We walked around a bit more, and of course, Fisher traded pins with anyone who would talk to him. Finally, he was exhausted, so we rode the bus back to the room and then we went and got him his #7 combo from McDonalds. It didn’t take him long after eating, he settled down and went to sleep. **Fisher’s Final Day At Disney. ** When we first learned of our trip, one of the things that really excited me, was that I would get to see my dear friend, Joanie Marie. Well, on Friday, she and her son, Geordan, came to Orlando to spend the day with us. We all let Fisher pick which park he wanted to go to, and he, of course, picked Magic Kingdom. I think we all rode every ride that Fisher was able to ride. We rode the magic carpets twice, went through the Haunted Manison twice, rode the Buzz Lightyear ride twice and we rode the People Mover thing twice. Robbie and Geordan hit it off, and Joanie and I had a great time just spending time together. While we were there, we met a very special young man, Michael. He is a cancer survivor, and he is just about the sweetest young man we met there. He started talking to Fisher, and before it was over, he bought Fisher a very special toy. Okay, time is getting away from me! I need to put Fisher on the bus. I will finish up the story, on Friday! Thanks for checking on us. We love you all! If you get a chance, please visit Emily’s site its www.4emilyh.org. She is only $17,000 away from getting the funds together for her double lung transplant. Please, if you can, drop by and see her! Thanks again. With love from Va, Carolyn and Fisher UPDATE: 1-25-05 ***The Beginning of the Trip*** Hello everyone! Wow, where do I begin? We just got back from our Disney trip. We had an amazing, wonderful magic time. Our trip began on Monday early, early, EARLY. Fisher cannot fly, so we drove to Florida. We pulled out of our driveway at 3 am. Yes, that is 3 o'clock in the MORNING. When we left it was cold, and it was sleeting/snowing. Not great traveling weather at all. (However, we were able to rent the most awesome car ever.) Anyway, around 6 am, we were well into North Carolina, and we just *had to stop at Cracker Barrel. Of course Fisher worked his charm on everyone, and had all the servers, wrapped around his finger. So, breakfast was behind us, and off we went again. We made it to Palm Coast, Fla around 3pm and we decided to get a room. We had a lovely stay there, and by 8 am the next morning, we were off again, headed south to Disney. I don't know how many of you all have to travel the Florida portion of I-95, but you all have my sympathies. That is the most horrid stretch of road known to man. The traffic was awful! We finally arrived in Disney around 10 am. We were able to meet up with the Event Co-Coordinator from Eagle 97. Then we were able to hit the parks. **Fisher and The Magic Kingdom Pt1** Fisher wanted to go to Magic Kingdom first. So, we left the resort and we drove to The Magic Kingdom. Which was one of the biggest mistakes of our trip. We learned a lesson, if you stay at one of the resorts, RIDE THE BUS TO THE PARKS. DO NOT DRIVE! If you drive be prepared to walk a hundred miles from the parking lot to the monorail, then another hundred from the monorail to the park. Our quest was simple. Ride the magic carpets, find Aladdin, and watch the fireworks. We were able to ride the carpets, fairly quickly, all FIVE times straight. :) Fisher was also able to meet several characters. He was also able to start a new hobby: Pin Collecting/Trading. Every single Disney Cast member he came across, he had to trade pins with him or her. We went to a couple shows, and rode a few more rides, and then it was time to get settled for the fireworks. Now, we were so tired from traveling all day, and it was very cold but Fisher really, REALLY wanted to see the fireworks. So, there we sat waiting. And waiting. And waiting. Robbie (Fisher's dad) was so tired; he really wanted to go back to the room and go to sleep. Finally, the fireworks started. Fisher was able to see Tinkerbelle fly out of the top of the castle, and we were treated to the most amazing firework show I ever seen. During the course of the show, Fisher leaned over to his Daddy, and said "Daddy, I will remember this for the rest of my life". We both were so choked up we could barely breathe. After our 250 mile hike back to the car, we drove to McDonalds and bought Fisher a #7 Combo (that would be a Chicken McNugget meal to you and me.) We were finally able to get him settled for the night. The only disappointing part of the day for him was, that he was never able to find Aladdin. ***Fisher and the Animal Kingdom*** On day #2, we went to the Animal Kingdom, and yes, we rode the bus. Animal Kingdom was one of Fisher’s favorite parks when we were there for his Make-a-Wish trip. Our day started with a Safari Ride where Fisher was able to help catch the poachers. He saw all sorts of animals. His favorite was the Lions! While we were at AK, we saw the Lion King show, and Fisher’s all time favorite, Tarzan Rocks. The cast members of the Tarzan show treated Fisher like royalty. They seated us in the VIP seating area, and he was even able to trade pins with a reluctant usher. We rode a few more rides, and then we caught the bus to go back to our room. Later that night, Fisher was able to meet his favorite radio personality, Jimmy Ray from Eagle 97. The thought of Fisher being interviewed terrified me. If there is one thing anyone who knows Fisher knows, he is capable of saying anything! He wore his Dallas Cowboy T-shirt his “Aunt” Stacy gave him for Christmas. Of course, Jimmy Ray had to ask him who his favorite team was, and why he liked them. Fisher said, “The Dallas Cowboys, and I like them because my Mom likes them!” He gave a perfect interview, afterward; going to the store in the lobby and buying a Buzz Lightyear Toy rewarded him. He, of course, bought some pins too. Finally, he was ready to settle down for the night. He was very excited because the next morning, was the character breakfast, and his live radio interview! ****Fisher Goes Live!**** Day #3 Day three started very early. We had to be in the lobby with the other Disney kids at 7am. First we had the breakfast. That was fabulous. I was finally able to meet the other kids. I was especially anxious to meet Emily. Emily is a young lady who has CF. She is in need of a double lung transplant. To have the transplant, she needs to raise $500,000. Right now, they are $17,000 away from the goal. Her webpage is www.4emilyh.org. I know all of Fisher’s friends will go and visit her site. During breakfast, Mickey, Minnie, Goofy and Donald Duck visited the kids. It was wonderful. Finally, it was time for the radio show. Fisher sat in the studio and Jimmy talked to him off and on through out the morning. When it was his turn to actually be interviewed, he told Jimmy that his favorite part was the fireworks. A brief side note here: they always get the kids to pick their favorite song. Naturally, I thought Fisher was going to pick Keith Urban’s “Who Wouldn’t Want to Be Me?” When I asked him about the song he wanted to play he said he wanted to ask for Keith Urban’s “Days Go By”. I asked him why he picked that song. He said, “Who Wouldn’t Want to Be Me?” was my chemotherapy song. Now that I am off and doing good, “Days Go By” is my song. Now, back to the interview… When I told Jimmy that story, he was very moved. You really need to hear the words to each song to understand why. Fisher won over everyone’s heart during the interview. In fact, each child that was interviewed had me in tears. This group of Disney Kids really are phenomenal kids. In the group we had a child with spinal bifida, a child who lost his sister in a terrible car accident, several who have beat different types of cancers, one who had a disorder with her esophagus. There was a child who had brain surgery, and of course there’s Emily. During the interviews, all the parents/grandparents were in tears. When the show was over, the kids sent a big “Seeee Yaaa!” to the people at home and they were off to spend the day at MGM. This update is probably the longest I have ever written and I am only half way through it!! J I will give everyone a few days to read over it, and then I will post the rest of the week. Please be sure to go and check on Emily. She is an amazing young lady and an inspiration to any one who meets her. Thank you all for checking on us. We love you all. With love from Va, Carolyn and Fisher UPDATE: 1-14-05 Okay I know you all have been waiting.. the MRI Scans were.....STABLE!!!!!!!!!!!!!!! Praise the Lord!!!! We are so so thankful!!! Fisher is a tiny bit anemic, but not anything alarming. In fact all of his blood work came back great!! Thank you all so much for your prayers. We leave for WDW on Monday!! I hope you all have a wonderful weekend and week next week. We love you all, Carolyn and Fisher UPDATE: 12-23-04 Fisher is doing pretty good. He is all excited about Santa coming tomorrow. He has been sick for a week now with a nasty cold. Of course the cold brings on nosebleeds. Up until a few days ago, he wouldn't let us spray his nose with saline. Thanks to his buddy, Matthew, now he will let us do it. That part is all but stopped. Now Fisher just has the coughing, sneezing and low grade fever. Thankfully, he has been "dePorted", so the fevers are going to put him in the hospital. We are giving him Trimainic Cough Thin Strips (aka Magic Medicine) and that is helping to keep him comfortable. Now for some big "thank-you's" (I hope i don't forget anyone). Grandma Joan, thank you so much for your package and all it contained. We are so grateful to have such a special person in our lives. To Ms Kim and Ms Helen, Fisher loves the T-shirt, I can't hardly get it off him long enough to wash it. (He says its cool like Kody) To the Keith Urban fans that send him the coffee cup, thank you so much. We all fight over it. :) "Aunt" Joanie: Fisher is now our official time keeper. Thank you for the gifts and the calendars. Thank you all for the many, many cards and letters. I truly hope you all have a wonderful Christmas. I am so thankful for that first Christmas, when Jesus, God's Son came to Earth. I am also very thankful for each and everyone of you. Thank you all for your love, prayers and friendship. I pray you all have a loving peaceful Christmas. With Love from Va, Carolyn UPDATE: 12-02-04 Wow! Things just keep getting better and better! This morning, Fisher got a phone call from Eagle 97, a local radio station. It seems my sister, Terrie, wrote in and nominated Fisher to be a Disney Kid. The phone call was to let us know that Fisher has been chosen to go to Disney in January! We are so excited!! Fisher is thrilled! Thanks to Terrie for being such a loving and caring Aunt. We love you so much! Thanks for checking on us, y'all have a wonderful day!! With Love from Va, Carolyn and Fisher UPDATE: 11-30-04 **I didn't want to say anything until it was official, but, Fisher is one of the kids featured in Keith Urban's 2005 Calendar!! We are so thrilled!!** Good morning everyone. Sorry it has been so long since I updated. I hope you all had a wonderful Thanksgiving. Ours was fantastic! We have so much to be thankful for. Fisher doesn't need chemo for now, and my mom is 1,000etter. We don't have a date on the new MRI yet. I will post it as soon as I know it. Thank you checking on us. We love you all. With love from Va, Carolyn and Fisher I have been asked to post a few things that Fisher would like for Christmas. So, here it goes: Leap Pad Books Level One Reading Books Legos Bionicals Coloring Books Games for his PS2, Gameboy Advance or Gamecube McDonald's Gift Certificates Walmart Gift Cards Spiderman stuff Thank you all for all you do for him. He loves the postcards and cards he gets in his PO Box. UPDATE: 11-20-04 Good evening everyone! Happy Friday! I just thought I'd let you all know that all of Fisher's doctors are in agreement that we WAIT on chemo. In fact, a few have said that chemo is not necessary at this point. It made me so happy to hear that. They have agreed to scan him next month instead of waiting till January. Anyway, thank you all so very much for your prayers. Have a wonderful weekend! We love you all. With love from Va, Carolyn and Fisher UPDATE: 11-19-04 Good morning everyone. Wow you guys have really come through with some great calicum ideas! Thank you all so much. From what I can gather from the doctors, right now, we are going to wait to see what the next MRI scan shows. That will be done in 6 weeks. I don't know that I am all that happy with that, but, I wouldn't be happy starting chemo again either. In January it will one year that he ended chemo. I know you all are famillar with my emotions right now. I want something to do be done, and done RIGHT NOW. But, on the other hand, I don't want him to have chemotherapy until it is necessary. But then again, I don't want this tumor to take off and catch us by surprise. I just don't know, what to think, what to do, or how to react. Thanks for all your emails, and guestbook entries. Thanks for checking on us. We love you all, Carolyn and Fisher UPDATE: 11-17-04 Good morning everyone. I have another "Fisher story" to tell y'all. Yesterday I went to Fisher's school to tell them about the MRI results. His principal shared this story with me. Fisher was standing in line and he was talking about the "adults". He told the "President of the School" (aka the Principal) that when he grew up, he was going to stay at home just like his momma! She said that you can tell he really loves his momma. :) The day that Fisher had his MRI, he also had a "DexaScan". A DexaScan measures bone density. From what the doctor told me, a normal bone density is 50%. Fisher's is 4%. A lot of that is because he can not have milk. Some is due to the chemotherapy he had. Nonetheless, we have to figure out ways to get calcuim in him. If any of you have any ideas, I am open for suggestions. He is a very picky eater. He doesn't like to try new foods. I am thinking about making a chart, and putting him on the "reward" system. I don't know. We still haven't heard about what they course of treatment will be for this new tumor. If they want to wait till his next MRI (January), or if they want to start chemo. I am not all that thrilled with either choice. What I really want is for my baby to be healed and not go through either. Fisher is taking it all in stride, in true "Fisher" fashion. All he cares about is that if chemo is started again, he will see his buddies, Ms. Teresa and Mr. Bryan. For everyone who still checks on Fisher, thank you so much. If you visit, please sign the guestbook. Fisher loves seeing all the entries. He also likes to see the "hit counter" go up. Please continue to pray for the parents of all the kids who have gotten their wings. It is still hard to believe that we have lost so many in the past month. I just can't imagine what those parents are going through. Thanks for checking on us. We love you all. With love from Va, Carolyn and Fisher UPDATE: 11-15-04 Hello everyone! Sorry it has taken me so long to update, but, up until today, there really hasn't been much to post. First, I have to start out with a "Fisher" story. Friday I had a conference with Fisher's teachers. One of them greeted me with "I have to tell you something your son said the other day." (That statement alone is enough to send terror through me, because you never know what Fisher is going to say next) It seems that the day before election day, Fisher's school had a mock election. One by one, his teacher called the students up, to cast their vote for either Bush or Kerry. When she called Fisher up, he looked at the two pictures, and he said "I don't want to vote for either of them." His teacher said, "That's okay honey a lot of people feel that way. Who do you want to vote for?" Fisher said "Ed" "Ed?", his teacher asked. "Yes Ed. From Ed, Edd and Eddy. Ed loves puppies. It is important for our President to love puppies". Oh man, if only it were so simple. Today we had our appointment with the Brain Tumor Clinic. Fisher's nurse gave me the report from his latest MRI. I read the words, I love to read. "Brain stem tumor stable". Then I read further. It seems that a tumor in a different location of Fisher's brain grew slightly. The neurosurgen was a bit concerned, but, he said that we should wait till his next MRI in January. He sait the location of this tumor is not in a great place, and they don't like operate there unless they have to. I don't know if the other doctors agree. Fisher hasn't been off chemo for even a year yet. The MRI was 9 months post chemo. I guess now the doctors will talk it over and decide if we start chemo again, or if we just wait. I hate the 'waiting game'. Please continue to pray for Fisher. Thanks for checking on us. We love you all. With love from Va, Carolyn and Fisher PS Please keep the cards, and postcards coming. Fisher loves them. In fact the whole family likes them. UPDATE: 11-4-04 Well, I finally have some news about Fisher's MRI. As far as his nurse could tell from the report, the scans were stable. I am so very thankful!! . We have lost several of our kids to various illnesses. Please keep their families in your prayers. Please continue to pray for Kody. It seems he is getting better and better each passing day! There are so many kids that need our prayers and our support. Gooch's mom has set up a site called www.sharethelove.org. Please go by and "adopt" one or two of these brave, brave kids. All you wold have to do is stop by the child's page and sign the guestbook. Signing the guestbook is so important. Even if it is just a "hello, I'm praying for you". Those entries mean so much. Thank you for stopping by and checking on us. We love you all. With love from Va, Carolyn and Fisher PS Please, keep the postcards coming. Fisher just loves seeing all the pretty pictures from the different states and countries. UPDATE: 10-30-04 Hello everyone! Sorry this has taken so long to post. As you all know, today was Fisher's MRI. It was a very long day at the hospital. We had to be in the radiology department at 7 am for his bone density scan. This was one of the coolest things I have ever seen. I was able to see Fisher's entire skeleton. He was very good for the scan, and that part was over very quickly. Our next stop was to the Day Surgery floor. Now before any of you have a heart attack, he didn't have to have surgery. He had to go there because he needs to be totally sedated to have his MRI. Well, we weren't due to check in until 9 am, and we were there around 745 am. So, Fisher played in the playroom for a bit. But he got bored with that very quickly, so we went to the Hemoc Clinic to visit some old friends. :) Fisher was so excited!! He got to see his two all time favorite clinic workers: Mr. Bryan and Ms. Teresa!! I must admit, it was wonderful to see them again. Okay so that killed about a small amount of time, but we still had lots and lots of time to go until his MRI. After today, I can tell yall this, when they schedule the next one, I am requesting that we be allowed to show up an hour before his scan. Shoot, the kid has had well over 20 of them. I know the drill, he knows the drill so hopefully we can make it a bit easier on all involved. Anyway, after our visit with Mr B and Ms T, we went back to the Day Surgery waiting room. Fisher saw the cutest little 'baby'. (a little 2 year old) Fisher went up and said, "Hi, my name is Fisher, and I work for babies. I can play with you and make you not be scared." He played and played with this little boy. They played with the push and popper thing, they played cars, but they had the most fun playing basketball. Fisher would had the little boy the ball and cheer him on. Every 'hoop' got a "Well done baby!" and every miss got a "Good try baby". Fisher had all the parents in the room watching him play with this kid. I have to say that I am very proud of him. He is very kind and gentle with the little ones. When the little boy had to go for his procedure, Fisher said to him, "Be brave, I know you can do it!" Well, then it was time for Fisher to go back for his premeds. The blessed Versed. He met with the sedation doctor, and Fisher let his wishes be known. No masks, no needles, no mind control devices. Mind control devices? Where did that come from? As the Versed took effect more and more, the 'mind control device' became more and more of an issue. All he kept saying was "NO MIND CONTROL!! NO MIND CONTROL!!" The nurses were laughing so hard they were crying. As the day went on, he was the talk of the hospital with his "mind control device". Even as he was waking up from his sedation, he was saying no mask, no mind control. He handled it all pretty good. We won't have the results of the MRI until Monday. I have some very special emergency prayer requests too please. First of all, please pray for Cheyenne. Her link is at the top of Fisher's page. She is having a lot of problems and she needs the Touch of the Master's Hand. Secondly, please continue to pray for Kody. There hasn't been an updated post for today. Hopefully he is improving. Next is a the Grandpa of a dear friend of mine. He is going through the final stages of bladder cancer, and will be getting his angel wings anytime now. Thank you all for your love, friendship and your prayers. We love you all. With love from Va, Carolyn and Fisher UPDATE: 10-28-04 Good Morning everyone! I hope you all are doing great! Friday is the day for Fisher's MRI. All I can say is I'm a nervous wreck. There are days I think he is doing great. But then there are days I wonder what is going on with him. Yesterday was one of those days. He complained of a headache all afternoon. He tormented his brothers, he was just out and out mean. So unlike my little 'Bug. I am glad we will have some answers soon. We had some good news from Flordia last night. Kody is awake, and is talking. I am so thankful! Kody and his family are so important to me personally. Thank you all for your prayers for him. Well, that is about it for today. I hope you all have a great day. Don't forget about tonight's eclipse. It should be a spectacular sight. With love from Va, Carolyn and Fisher PS Please, please, please keep the postcards coming. Fisher loves to get them and see all the neat pictures. Thanks. C~ UPDATE: 10-14-04 Fisher's neurology appointment went good. He says Fisher is doing great. He is mildly concerned about the headaches. He is glad that Fisher's MRI is coming up soon. He is still a little squirt. He is 6 years old and he only weighs 37 pounds and he is 3 feet 7 inches tall. So, he is a small fry. But as his "Aunt" Stacy says, "Good things come in small packages." :-) That is about it for now. Thank you all for your prayers for Fisher and for my Mom. We love you all so much! With love from Va, Carolyn and Fisher PS. I have been asked if Fisher is still collecting postcards. Yes, he is. He loves looking at them. Please keep them coming. UPDATE: 10-12-04 Okay, my mom now has her own page, and I will update you all on Fisher. Not that there is a lot to say about him. He is still having headaches, and doesn't feel all that great. He has an appointment with his neurologist on Wednesday. He has an MRI set up for the 29th. You all know how nervous I get when they come up. Please pray that everything will be fine. Well, that is it for now. If any of you get the chance, please visit my mom's page, and say hi. Thanks for checking on us. We love you all. With Love from Va, Carolyn and Fisher UPDATE: 10-8-04 Update On Fisher's grandmother: Hello everyone. The latest on my mom is that she is still with us. Thank goodness, the drugs are working. She is still in very critical condition. She was still too unstable to have surgery today (Thursday) so, they will do it tomorrow (Friday) She did respond to us more today. So that is an encouraging sign. Thank you all again for all your prayers. UPDATE: 10-7-04 Well, it is almost as bad as it can get with my mom. She is in very critical condition. It seems the infection at her surgery site, actually goes all the way to her spine and into the surrounding tissues. She is in Septic Shock. Her kidneys have shut down, her lungs are in shock, her blood pressure is dangerously low, and her heart rate is extremely high. Right now, she is on a ventilator, and she has a NG tube. At the last count, she has 6 IVs going. She make not make it through the night. My sister and I have been with her all day and all night. I live reasonably close to the hospital, so I came home to try and get some sleep. They are going to see if she is stable enough for surgery tomorrow. I am so heartbroken. I love my mom so much. Please continue to pray for her. Thank you all for your continued friendship and support. UPDATE: 10-6-04 Good morning everyone. I have a HUGE prayer request. My mom was just taken by ambulance to the hospital. She is having severe chest pains and it looks like she has an infection at the site of her surgery. Please pray for her. Thanks. With Love from Va, Carolyn UPDATE: 10-4-04 Hello everyone and Happy Monday! I hope you all had a great weekend. I have a big prayer request for you all. My mom had back surgery two weeks ago, and she is in terrible pain. Please pray that the pain stops soon. Fisher is doing pretty good I guess. I am still a bit worried about him and his headaches. I have called the doctor, and they say to just keep an eye on him. Thanks for checking on us. We love you all! With Love from Va, Carolyn and Fisher UPDATE: 9-29-04 Good afternoon everyone! I hope you all are doing great. Fisher and I both have bad colds, but other than that,we are doing good. We had a wonderful time last night watching the Cowboy/Redskin game. Fisher loves the Cowboys. He told me last night, that he wants to be a "kicker" for them. He also wants to wear a jersey with #1 on it. When he saw that there was already a 'player #1', he said that he would have to give up that jersey. Sorry Matt McBrier :). Anyway, Fisher said that he is going to play for the Cowboys and he will be kicking the winning points. Then he said that all the players will carry him around on his shoulders and the crowds will be cheering him. All I could think was "from your lips to God's ears sweetie". It was a great game, and it was fun to watch. So, Steve (Brandon's dad) if you are reading this... "How 'bout them Cowboys!!" Other things going on with Fisher, he is still complaining about headaches. His appointment with his neurologist can't come soon enough. He has been out of school for two days, and he can't wait to go back and see his friends. Robbie and I are hanging in there. There's always something that has to be done, needs to be paid, you get the idea. It seems that we just get our nose above water, and something comes along and smacks us right back under. But, we do know that God is good, and it will all work out eventually. Well, that's about it for now. Please remember all the families in Flordia. Thanks for checking on us. We love you all. With Love from Va, Carolyn and Fisher UPDATE: 9-24-04 Good morning everyone! Happy Friday! Well, it looks like yet another hurricane is threatening the eastern seaboard. Please remember all our friends in Flordia this weekend. From the looks of it, Jeanne is going to be headed our way the first part of next week. Fisher is doing pretty good. He still is running full throttle. He hits the ground running in the morning and doesn't stop until he falls asleep at night. He is still complaining of headaches, and to me, his speech is a little more slurred and nasal than before. He has an appointment coming up with his neurologist so we will see what is up then. Please don't forget Fisher's postcard challenge. He loves getting postcards. Thank you for checking on us. We love you all. With love from Va, Carolyn and Fisher UPDATE: 9-20-04 Good morning everyone! I hope you all had a wonderful weekend. Ours was good. Rainy and windy, but it was good. Fisher is doing pretty good. He is still having headaches, they have eased off in frequency, but they are still there a few times a week. The doctors have all been made aware of them and we are in a wait and see mode. If they get worse, we will do his next MRI sooner. As it stands now, it will be late October/early November. Fisher doesn't miss a beat though. He is always on the go and upbeat. He reminds me of the Energizer Bunny on a sugar rush. Anyway, that's it from us. Thanks for checking on us. We love you all. With Love from Va, Carolyn and Fisher UPDATE: 9-15-04 Good morning everyone! I hope you all are having a great week. Things around here are good. Fisher is enjoying school. He loves his teachers. He is having some difficulty with his fine motor skills, and with staying on task. Other than that he is doing fantastic. I am still quite sore from my surgery. I just know that one day I am going to wake up and feel great. I just hope that it will be soon. Please remember our friends in the path of Ivan in your prayers. If it hits New Orleans, it could be real bad. Lets face it though, any where this monster hits it will be bad. So, please remember them in your prayers. Thanks for checking on us. We love you all. With Love from Va, Carolyn and Fisher UPDATE: 9-11-04 Hi gang! Well, we survived the first week of school! Fisher loves his teachers, and he had a great week! I hope you all have a wonderful weekend. Please pray for all our friends in Flordia. I feel so bad for them, yet another hurricane is headed their way. Please keep them all in your prayers. Also big big prayer request, please continue to pray for Sweet Cheyenne. That's it for today! Thanks for checking on us! Have a wonderful weekend! We love you all! With Love from Va, Carolyn and Fisher UPDATE: 9-8-04 Good morning everyone! Well, all the boys are back to school!! YAY!!! Surprisingly enough, they are all happy with their classes, and think this year will be a good one. Please pray that it will be for them. They have been through so much. Yesterday was strange for me, it was the first time in years, and I do mean YEARS, I had the day to myself. No one is in the hospital, no doctors appointments, nothing. It was strange. What did I do? What would anybody do? I went shopping! Of course it was just 'window' shopping, which I love to do anyway. Then I had lunch with my sister. It was great to have sometime to just relax. Please remember Cheyenne in your prayers. She is just a sweetie and she is having such a hard time right now. Thanks for checking on us! We love you all! With love from Va, Carolyn and Fisher UPDATE: 9-3-04 Good morning everyone! I hope you all are having a nice week. To all our friends in the path of Hurricane Frances, please know we have you in our thougts and in our prayers. Last night, Fisher and I went to a fundraiser for Make-a-Wish. We had a wonderful time! The kids got to ride in a stretch limo, and when they arrived at the golf course, the volunteers took them out on golf carts. It was so nice to see all the kids have so much fun! While they were