Quick Jump: 3rd Quarter 2004: July August September
September 30, 2005 Day +912 Day #610 off treatment
It is Friday! I am so glad! We had a pretty good day at school. All the kids did was play and make scrapbooks. They are so cute. I had them all bring in photos and I let them make them anyway they wanted. Taylor cut his pictures out and glued them in the book. What made his so funny was that he had to keep the stuff he cut out. For example. He cut himself out of a picture at camp, but glued the chair that was next to him in the photo into the book as well. We also have a nice strip of Guh's wallpaper border too. It was funny!
After school we went home where Logan napped and Taylor went outside. Gam maw and Paw Paw came over for a little while and played outside. We went back in around 6:00 when the bugs were just too much for even the bug spray to ward off. Jim worked late, so it was 6:30 before he got home. We grilled out and then Taylor and I went to the grocery store.
Logan stayed up until 9:00 rather than 8:00, but he will still be up bright and early. Oh well! I guess we might as well get used to him being our early riser. Taylor mentioned his leg hurting tonight for the first time since last week. I know that he was not referring to it in the same way, but it still got me in a tizzy. He was working on a bead project in the floor and he was sitting on his knees and had been that way for a while and he got up and stretched and said "my leg hurts". He has not mentioned it again and I am sure it was just the position he had been in for so long and the fact that it was nearing 11:00pm! I wish that everything didn't always have to be taken so serious, but I guess that is just how things will be. I know it will eventually get easier, but it will never be like it was before the C word came into our lives.
September 29, 2005 Day +911 Day #609 off treatment
It is almost Friday! Yahoo! It has been a rough week. Taylor had a great morning after having to go to bed at 8:00 because of behavior. He was none to happy and I thought maybe, just maybe he would learn from it, but NOPE! He was pretty good this morning at school and he was picked to be the door holder. He acted up in snack and lost his job. I told him that if he behaved until lunch he could have his job back. He did fine until circle time. He went crazy and even with me telling him if he did not calm down he would not get to hold the door, he did not stop. HMMM....what are we going to do with him! He also lost his turn at show and tell becuase he did not listen while the others were going. He was very mad at that. He is now in his bed. I am going to let him stay there a while with no toys or TV and maybe he will eventually see that he must behave.
I have made him an appointment with Miss Terry at the Children's Harbor. He will be doing play therapy with her. I know that most of his behavior is 4 year old boy who is spoiled rotten however, some could stem from emotions that he can not deal with over treatments. He can not deal with things he doesn't understand or remember. He has never had a problem going to clinic and now that we are going and have no big procedures he hates it. It COULD stem from a fear of something he doesn't even remember happening. I know that makes no since, but he was so small during his tx that he doesn't understand what he went through and he could be harboring feelings about it and not even know it or know how to tell us. This may not help at all, but it is a free service offered to oncology patients, so we will give it a shot.
I get another break tonight. I am going to dinner and the movies. I better get off this computer and pack lunches and what not, so that I am not up all night getting all that done after I get home.
Please continue to pray for Taylor. He has yet to mention that leg. In fact, he was peddling a tricycle today with him and another kid on it. I don't think hurt knees can do that! Pray that he is NED at scan time with no mysterious spots. Pray for all the cancer families.
September 28, 2005 Day +910 Day #608 off treatment
It has been a rough morning. Taylor didn't want to eat, both boys are fighting, Logan is whining non stop. I told Guh yesterday that I was so stressed out over Taylor that I almost called in to work, but as soon as Logan got up and started his whining and fighting and picking, I remembered that I really wanted to go to work:)
Taylor ate fine and has played fine at school. He acted better as far as his behavior after a long talk last night. I did have to call his name several times and remind him of his talk, but that seemed to d the trick. I know he is going to act up and that is fine, but he needs to know when to stop. However, he and Logan both blew it after school. They took off while I was cleaning up and went all the way upstairs. I got them down and carried on with what I was doing and they took off the to Sanctuary. Taylor knows better and Logan follows. I was so mad I could have spit nails. He can not go outside today and he is fit to be tied. If he gets in trouble again he will go to bed! I don't want them running around alone or tearing things up, but I am scared to death they will get on that elevator and get stuck.
We did have some funniness in our day. Taylor was washing his hands in the bathroom at school and he reached to get some soap and fell in the sink (they stand in chairs) he was soaking wet! He was laughing, so we did too! He changed and went to eat lunch. He seems to feel fine. He is still snotty, but that is the norm. He has not mentioned his leg. He was walking real funny this afternoon after the sink ordeal and before changing and when I asked what was wrong, he looked at me as if I was crazy and said, "I am soaking wet!". It was so funny! I guess it was a stupid question, but he must understand I am a cancer mom under a lot of stress.
We are chilling out at home for the time being. Logan is napping. Taylor has pulled out a tent that you throw balls at, it was his favorite during his stay at the stem cell unit. He is having fun and I know that Logan will love it when he gets up.
Please pray that Taylor is okay and that I am just over reacting. Pray that he is NED forever! Remember all the cancer families at their different steps of the journey. There are a few more days in September, Childhood Cancer Awareness Month. Please donate to Lunch For Life or other programs and help a kid like Taylor.
September 27, 2005 Day +909 Day #607 off treatment
I am happy to report that Taylor stayed in trouble all day! Isn't that the craziest thing you have ever heard. He was his normal, off the wall, not listening self. Yahoo! I feel much better seeing him act like himself. He has not mentioned that leg since Saturday and we don't dare bring it up. He is outside playing as we speak. School should have been a breeze with 8 kids, but it was hectic due to Taylor's behavior. He got popped in the bathroom twice and it didn't help. I told Critia, my other teacher, how excited I was and just laughed, but she understood. I have talked to him and told him that that behavior is not okay and that he must stop it. I think it went in one ear and out the other.... He also got in trouble for pouring his tea out all over his head and letting it run down his face. I have no idea where he comes up with these kooky ideas.
His behavior did not improve throughout the day. He acted like a total turd at the Cracker barrel. He was mad that JIm stayed inside to pay and I loaded him in the car. He took off running down a grassy hill in the parking lot to get away from me. Needless to say, he got yet another spanking right there in the parking lot. I am at my wits end with both of them. Taylor went to bed early with no TV. He was furious yet asleep in 5 minutes.
Logan had a good day. He was so excited to get to miss "TT" this morning. He is currently napping after running about 10 miles today. The child loves the gym and just runs all over it. He is so silly!
This is short and boring and I am so thrilled that it is. This weekend was stressful. I wont say that I am not still worried and I will be until the scans come back clear. However, I feel much better. Please join us in praying that he is fine and will be NED forever. Pray that his scans are crystal clear with no strange spots to upset us. Pray for all the cancer kids still fighting the fight. Pray that the ones who have achieved remission remain that way. Pray for those who are missing a loved one. Pray for Valerie's uncle as he heads to Texas to undergo treatment for his cancer.
September 26, 2005 Day +908 Day #606 off treatment
I have just learned that Volvo won a very prestigious award from Auto World for all the hundreds of thousands of dollars for Alex's Lemonade stand. Last year they donated $10 for every test drive done in a certain time frame. They will again hold "Drive For Life Days" on Oct. 8-16, 2005. This year, the participating dealers will donate $20 per test drive. May dealers will have lemonade stands, car clinics, book readings and other activities. Now is your chance to get behind the wheel of a Volvo and make a difference in the life of a child with cancer at the same time.
I have had an awful day. No ones fault but my own. I was so stressed at work over Taylor that I could hardly keep it together for my class. I think the kids could since it as they were off the wall. Kids that I normally hardly know are there were making me crazy today. I know it was me and not them. Taylor has yet to mention his leg again. Same as yesterday, I try to see if he is limping, but I can't tell and I over analyze. I have felt his tummy and head all day for lumps and fevers. I am just paranoid. I hate to be this way, but I can not help myself. I know perfectly well that I have more than likely put all this in my head and he is fine, but it is still very hard to handle at times. Taylor was pretty much the same as always at school. He got upset over a chair and a crayon, small things and I let that upset me. Well, I did give him Benadryl this morning, so he was probably tired and I again, over analyzed! We went to McDonald's after school and he played in the play area. We dropped Logan off at Nana's and went to speech. He did fine, running and playing in the waiting room. I will tell you about speech later. We went to get Logan and he played fine there. I see that he is fine, but my brain and that huge pit in my stomach wont stop worrying. I guess this will be life until after the 19th and scans! I keep telling myself that if he were sick he would have fever and no appetite and neither of those statements are true. He ate lettuce, ham and cheese for lunch along with a cup of yogurt. He ate about 1/4 of his burger at Don-Dons. He ate a bag of cheese its at speech and the rest of the burger at Nana's. When we got home he ate 2 sugar cookies and a bowl of macaroni. PIG! That makes me feel better! We went outside where and rode his bike. He wanted to take the training wheels off, but chickened out when he got on the bike and realized it wasn't going to stand up. Oh well, maybe later.
I must tell my prayer warriors this one. Please pray for my sanity and Christi! I made great efforts to get to my little pal, Christi's page today. I was about to turn the computer off and went back in to read her page. My heart about hit the floor when I read that she was fine all week and then had sudden KNEE PAIN!! Now, I know that she is in a state of progression and that the situation was different, but why did I go to such great lengths to read that page to hear that news. So, as you guessed it, my brain goes in over drive and I am wondering why God wanted me to read that page? Did God allow us to scan in Oct rather than the expected Dec. for a reason? UURGH, My brain has got to take a vacation! Please pray for Christi who will scan tomorrow and Wednesday. Pray that her new chemo is halting the progression or even miraculously curing it. Pray that Taylor is facing nothing like this and that he just truly hurt himself. It would have been very easy to hurt himself if you could have seen the dancing and jumping he has been doing!
Speech was good. He has a good time with Katie and he cooperates with her. He has a trouble with T and D. He is ending his words now just now correctly. He says reg rather than red, birg rather than bird etc. He also gets confused at times. He told her something was blue"d", he gets so used to her saying "D" "D" that he adds it to everything. He will get it! We have some homework that we will work on this week. He really is doing well, I think anyway.
I must say that we are in the house now and he is fine. He ate great as you can see. He played on the fire truck car. He seems to be fine other than the ever present snotty nose. Please pray that he is fine and that it is just me that has the problems:) Pray that the scans are fine and no spots show up anywhere. Pray that the lungs are clear. Pray he is NED!!!
September 25, 2005 Day +907 Day #605 off treatment
I have good news! Taylor has not mentioned his leg again at all. I pray that this means it is nothing. I watch him walk and I of course see things that I want to see. I have no idea if he truly walks funny or if it is all in my head, but I am still a nervous wreck. Please continue to pray over this matter. We went to church. Taylor was very wiggly and loud today. That is very unlike him to not site quietly. I am not sure what was up with that. He RAN to get Logan when church was over. He and I went to Wal-mart to return the lumpy milk we bought. I was so grossed out when I went to pour Logan a cup of chocolate milk and it was lumpy. I had just opened this morning and just bought it last night. When I put it on the counter the lady said it was about the 3rd one that had come back today. HMMM.... We got that fixed and headed for home. Taylor played around the house and looked for Guh.
Guh and Nana got to our house around 3:30 and everyone else followed soon. It started to rain as soon as everyone got there and we had plans to eat outside. It stopped raining enough for us to eat outside and the kids to play a little. We then moved it inside to talk and play. The play room is a mess, but nothing like it has been in the past. No big deal, Taylor has been looking forward to them coming over forever. They destroyed his room too, but that worked out for the good. I have been wanting to go through it and throw stuff away, but didn't want to dump it all out. They had taken care of that part for me, so I weeded through it and got rid of a lot of stuff.
I am still on edge. It is scan time and I would be on edge anyway, but for him to throw me a loop like this just adds to it. Please pray that Taylor is fine and that the upcoming scans are CLEAR and show NED!!! Pray for those who are still fighting. Pray that those who are NED can stay that way. Pray for those who are missing someone are being held by God's hands.
September 24, 2005 Day +906 Day #604 off treatment
I have had a mixed emotion day today. Taylor said last night that his knee hurt and has continued to say this today. He goes from jumping, running and dancing to crawling and refusing to walk. I am on pins and needles. He was fine last night and now he is complaining, but this is the nature of the beast and why we are so upset. Guh came over to play and watch them while we went to a wedding. I told her to be on the lookout and about that time he took off running and twisted his knee and just collapsed. It looked swollen, so we put some ice on it. We left soon and I had a hard time keeping the tears from coming as I watched two wonderful people and stead fast Taylor prayer warriors get married and think about what was wrong with Taylor. Valerie, the bride, just got news a few days before her wedding that her uncle had cancer. Please pray for him and his family. Pray that he has great success as Taylor has. I must say that I was also choking back tears when I saw that the groom was wearing one of Taylor's bracelets. I knew he wore it everyday, but to keep it on on his wedding day. That was so special! Thank you Valerie and Rusty for all you do for Taylor, we love ya'll! We had a wonderful time at the reception, it was beautiful. We left just as the rain came in. We got home to find Taylor bouncing off the walls as he had been the entire time we were gone. Who knows what is going on, but I do not like it!
Please pray that Taylor has really just hurt his knee and that it has nothing to do with cancer. I, as usual have let my brain or better yet Satan, try and convince me otherwise. I keep wondering why the scans were changed, but tell myself that God wouldn't change them if we needed it. Please pray for me and my over active brain!
September 23, 2005 Day +905 Day #603 off treatment
I have just learned that Volvo won a very prestigious award from Auto World for all the hundreds of thousands of dollars for Alex's Lemonade stand. Last year they donated $10 for every test drive done in a certain time frame. They will again hold "Drive For Life Days" on Oct. 8-16, 2005. This year, the participating dealers will donate $20 per test drive. May dealers will have lemonade stands, car clinics, book readings and other activities. Now is your chance to get behind the wheel of a Volvo and make a difference in the life of a child with cancer at the same time.
Today was a bit different for us. Taylor and Logan both stayed with Paw Paw all day. I was back from Nana's in no time, but they wanted to go with Gam maw, so again, I left them there. We met them for dinner and took them home with us against Taylor's will. He wanted to stay again. Logan was so tired that I don't think he cared. He cried when he didn't get in Gam maw's car, but he was fine by the time we hit the interstate. We came home and played and watched TV. We didn't do much of anything since the house work was all done! Yahoo!
September 22, 2005 Day +904 Day #602 off treatment
Thursday, yeah! It has been a long week. I guess after a busy weekend we just didn't get settled in good this week. This weekend should be slower. We had a good day at school. Taylor was a little rowdy and got in trouble. He is just being four and I am so thrilled to see him be healthy enough to get in trouble yet at the same time I refuse to let him get away with it. It is a bad spot to be in, but I am pleased to be in it, if that makes any since at all.
We had to change Taylor's scans. Dr. Berkow will be out of town on the 11th, so we will do his check up, urine, CT and bone scan on October 19th. That worked out better anyway since we will be on Fall Break and not have to miss any work. I, of course, had to read too much into it. I think I must be superstitious. I worried over why it had to be changed, what could that mean. Heck, it means Dr. B needs a day off! It means I don't miss any work or any pay. I don't know why I let myself get so worked up. Anyway, things are settled now and we will go in a week later. We will still go see Dr. LaRussa on the 11th. He was off on the 19th so I couldn't get them all at the same time as planned. Oh well, we still will not miss any school as this apt. is at 2:15.
We met Gam maw and Paw Paw for dinner and then BOTH boys went home with them. Cool huh! I have gotten so much cleaned up tonight and I left stuff that I can do with Logan around. We are having my Nana's b'day dinner here Sunday afternoon, so it has to be semi clean:) Tomorrow after school I am going to Nana's to keep her kids for a bit. I do not know if I will have the boys back by then or not. They had not decided if they were going to school or not. Taylor said he didn't want to go which is very rare. That made me feel bad seeing as he loved school until I was the teacher, but he followed directions for his other teachers. I know I say this every day, but here goes anyway. UURGH!!!!
Please pray that Taylor is NED forever. Pray that we continue to have these everyday, normal little boy problems. Pray that the snotty nose he has now is soon cleared up. Pray that Dr. L has some new ideas on why he gets so snotty after being outside yet tested neg. for the outdoor allergens. Pray for all those who are fighting some sort of illness or injury. Pray for those who were hit by Katrina and those in the path of Rita.
September 21, 2005 Day +903 Day #601 off treatment
Wednesday already. I had a good day at work. Taylor did not make me call his daddy. I threatened to once, but he quit what he was doing. We came home after school and I cleaned up as much as I could before I left to bring the kids to Jim at work and swap cars with him. I met, Nicole, my old co-teacher and a few others for dinner and a catching up party. We laughed all night long! It is always fun to see them again. Someone in that group needs to move a little closer so we can do that more often! Hint! Hint!
I got home around 9:30. Logan was long gone and Taylor was sacked out on the couch in this odd half sitting half laying position. I put him in his sleeping bag, his current choice for sleeping. All though, if I were him I wouldn't sleep there after today's excitement. I was sitting in the dining room and I kept seeing something move out of the corner of my eye. I didn't pay much attention at first, but then I looked and about jumped to the ceiling. There sat a big ole beady eyed, lizard. YUCK! I called Taylor just thinking he might like to see it and he comes back in swatting at it with a butterfly net. He ended up chasing the thing under MY chair in the living room. We never saw it again before we had to leave, so I am not sure where it is or if it is still inside. I know I wont sleep good or reach under any furniture until I have evidence that it is gone!
Please continue to pray for Taylor and his success against cancer. Pray for those who are still fighting and those who are missing a loved one.
September 20, 2005 Day +902 Day #600 off treatment
Tuesday was a bad day for Mr. Taylor. He was out of control at school. He was told that if he behaved that way tomorrow Daddy is leaving work to come handle it and he knows that wont be good. We shall see if that works. I made a dollar store run for some goodies to stick in a package I mailed out to our new NB friend, Curtis. Curtis got some not so good news that has cancelled his transplant and left them with few options. We sent him some goodies to cheer him up a little. Other than little outing we were at home. The guys cut grass and played on the swing set this afternoon.
We are back to the old humdrum updates that I am so proud to give you! Please keep prayin' it is certainly working and we feel them. Pray for those who are just starting or missing a loved one.
September 19, 2005 Day +901 Day #599 off treatment
Welcome back to reality. We had to go to school today. It wasn't a bad day just a Monday. After school we came home and unpacked and did laundry form the weekend and that is about all we did. The boys played outside for a while. I think Logan could stay outside forever. I took everything but Logan's diaper off so that he could eat spaghetti. He kept taking his diaper off, so I put on a pair of Taylor's undies over it and he thought he was cool stuff. He was walking all funny and twisting his body like he was king. It was so funny. Of course Taylor thought it was hilarious that a "baby" was wearing his undies. After dinner we just hung out and played. Logan went to bed at 8:00 and Taylor followed close behind at about 9:00. That is very unlike him to go that early, I guess he was just to tired after the busy weekend.
Please continue to pray for Taylor's NED. Pray that he has minimal late effect issues to deal with down the road. Pray for all those who still fight the fight. Pray that those who are NED can remain that way. Pray for those who are missing a loved one.
September 18, 2005 Day +900 Day #598 off treatment
Could there have been a better place to spend day 900 post transplant? Yahoo, what a beautiful number. I remember thinking that day 100 would never get here and here we are at 900. Praise be to God!
We were up early again. Logan did not wake me up, he just got up and found his cup on the dresser and drank what was left. Then he tried to open the door and go to the kitchen. I am not sure what he was going to do when he got there, but he tried. He finally realized he was stuck and got upset and got us up. We all got up and got ready and loaded the car. Taylor, Logan and Calvin sat on a railroad tie while we all loaded up. They were swapping gum pieces. It was so cute. Logan was right in the middle of it. I took the 2 bigger boys on to the galley in a golf cart. Logan "drove" Jim down in our car. We had breakfast then headed to do group photos. That is always fun and my 2 kids made sure it was just as fun this year. Taylor was pouting as he always is at this point in the trip. Logan did fine for a minutes, but then he wanted out. He was helping to hold a big banner and he climbed over it and sat on the grass by Copper, the camp dog. He then proceeded to pick stuff from his paws and feed him pine straw. Only Logan! After the photo we went and painted a picture frame. We drew a rainbow and sunshine and Taylor painted it. He painted the sun black and then had a fit to change it. We cleaned up and redrew it and I'll be darned if he didn't paint it black again! Oh well! It is his frame. We then headed back up to the play area for a bit before the closing ceremony. We did the closing ritual after Logan totally squished an Earth worm then put his hands in his mouth:) Yummy! He didn't want to be in the circle, so he ran around while we did it. He went and spit on Scout, the other dog. Pour Scout just looked at him. After the closing ceremony we loaded up into the car and headed out. It is always sad to leave after all the fun, but both boys were so tired and grumpy we knew it was time to go. We had not even made it back to 280 and Logan was out and stayed that way until we stopped at Wal-mart in Inverness. Taylor never did go to sleep. He was watching Rollie Pollie Ollie and was quite interested in it.
We went ahead and went to Gam maw and Paw Paw's where we were having a birthday dinner later that night. We figured we would let them chase them for a while:) The whole family came over and we had dinner and opened gifts. Logan was begging to go home by about 7:00. We headed home and got in the tub for the 3rd yuckiest bath every. I have never seen so much dirt and sand in the bottom of the tub. They were both sound asleep very soon.
We are so thankful to have Camp SAM. They gave us a memorable weekend full of fun. It is a chance to be with people that truly understands all the fears and joys we as cancer parents experience. I know that everyone sends their love and prayers to us, but until you have lived it you do not know that feeling in the pit of your stomach. It is a chance for the kids to have no worries and fears. It is just amazing!
Please pray that we have many more camp visits. Pray that Taylor is NED forever. Pray that Logan never endures what Taylor has .Pray for all the families and kids that fight this battle.
September 17, 2005 Day +899 Day #597 off treatment
Even though it was well after 11:00 when Logan went to bed it was still 6:30 when he got up. UURGH! Oh well, I hit the showers and got dressed and then got the boys all sun blocked up and ready to go outside and play. Taylor and I walked over to the galley. He picked up sticks and pine cones along the way. He immediately hit the swings and Logan did too. We had a great breakfast in which Logan fell off the bench and hit the concrete floor, but he didn't care. After breakfast the boys went to play. Logan wasn't really old enough for some of the activities, so he and Laura rode the boats and played in the sand. Taylor opted not to do the activities and stayed on the swing set. He is still dead set against getting on the boats. I am not sure why, but he refused to even try. He did that in July as well. I am not sure why, but we were not forcing him. Jim went with the guys to "tinker" golf balls into the river. However, they didn't tinker that knocked the crap out of them. They said they had scuba divers come in to get them, but it turned out to be Miss Vesta who is not exactly scuba material. She is the sweetest little thing. She did snorkel out there, but they were way to far out for her to get. I guess they will eventually wash ashore. If you know anyone who can donate lots of golf balls, let us know, so we can replenish the supply. While the guys did that I went to a flower arranging class. I thought it would be boring seeing as I am not a flower and gardening kind of person, but it was not boring at all. It was a lot of fun. I did quit well at it too, if I do say so myself. After our flower play we met back up with the dads and had some play time with Terry. She is a councilor at the Children's Harbor at the hospital. She always has some silly game to play. This time we stood in groups of four with three ropes between us and we had to tie it in a knot using our bodies. We finally got it and it required me to squeeze my fat butt through a tiny loop in the rope. It was interesting! Soon it was time for our 15 minute massages, but lucky us picked the people who had spare time and we got to get 30 minute massages. Yahoo! It was so relaxing. We were on a gazebo by the river and could feel the breeze, I could have gone to sleep. We then had some free time. We just hung out and talked. By about 3:00 Logan was so tired and sleepy that he was getting unruly, so I rescued Laura and took him back to our room. Taylor cried, so he ended up going too. I went ahead and bathed them both and then tried to get them to take a nap. Taylor would have been gone, but he was so hungry. He had refused to eat lunch because they didn't have cheese. Logan was not going to have any part of sleep and was destroying the room. I had no clue where Jim was, so we went out looking. We busted him! He was in the volunteer cabin that has a TV and he was watching football! He took the boys for a drive and they were both fast asleep in no time. It didn't last long though. We went on back to the room and got ready for the pirate party and dinner. Taylor was so tired at this point that he was a pill about getting dressed and didn't want to wear any of it. Once we got him dressed and he got up the galley where everyone was dressed up, he was happy. We went to dinner first and both boys tore up the Spanish rice. After dinner we went to the Henderson House for the dance. DJ OZZ was there, he is from Auburn and I used to keep his daughter when I lived there, so that was nice to see a familiar face. Taylor started off the dance like a pro. He was having a blast with his 2 new buddies. However, it wasn't long until he was asking to leave, it was just too loud. It was very loud, but we have no idea what that felt like to him after having some hearing loss. We headed on back to the room and went to bed.
This time Taylor chose to sleep on the twin bed not the cot and it was not long before he was out. Logan didn't take long tonight. We did have to put him in bed with us again, but it was quick. I put him on the mattress in the floor and he never budged.
September 16, 2005 Day +898 Day #596 off treatment
What a day! We had the second day of pictures today and it was equally as challenging as yesterday. After school we went home and loaded the car and got the last few things ready for camp. Logan chose today to nap until 4:30 that way he was sure to not sleep any of the nearly 2 hour trip to camp. Oh well, it let me get a quick nap too. We loaded up and went to get Jim and then headed that way. It was a journey for sure. We went to Wal-mart for chicken fingers to eat in the car that seemed like the easiest thing for them to eat in the car. There was no one to help us, so we headed back down the road and got McDonald's instead, no big deal. Logan was getting tired of being in the car, so he was glad to get some food to distract him. He kept eating and eating and I was so glad to see him eat so well. I was glad until I took him out of his car seat and saw that all I was handing him was in the bottom of the seat, he hadn't eaten hardly anything. We finally made it to camp around 7pm. Logan was busting out of the car seat ready to run. He took off in a hurry after a ball. He left baby behind, but it wasn't long until his councilor was asking what baby was. Once he had that he was off again. Taylor had a guy again, he likes that, they play rougher than girls. They played on the swings and made smores while the parents went to have a meeting. It was not really a meeting it was a welcome to the 8 new families. They had no idea what fun lay ahead! We got to hear everyone's story which made for an emotional night. However, we got the sillies afterwards and had a great time. We all went to get our kids and head to our cabins. I had to give my kids a bath even though they had only been there for a few hours. They were both filthy. Isn't that just great. Camp was the first place Taylor ever got truly dirty and I am so glad that he continues to run and get dirty at camp. Bed time was a challenge for Logan. We had a pull out cot that we took the mattress off of and put Taylor on it. We tried to let Logan lay with him, but he just wanted to play. We finally had to put him in bed with us until he fell asleep then moved him to a pallet in the floor. He did fine once he was asleep.
September 15, 2005 Day +897 Day #595 off treatment
What a day. It was picture day and that threw off the routine and the kids were so wild and loud, again. We did, some how, manage to get all our work and art done. I don't know if Taylor did good with his pictures or not. I was helping with the baby class. Logan did not participate. We have not attempted pictures since his spring school pics and it did not go any better, in fact, it was probably worse. He wanted no part of it. We tried doing from the waste up with Kelly kneeling by him holding, but he still wasn't having it. I am going to go in early in the morning and try again before anyone gets there and see if less commotion helps. I doubt it, but we will try. Taylor's last school pics before he was DX was at 18 months and he fought her tooth and nail (same lady!) and I didn't get a school photo at all that year. I always thought it was due to his seeing so many Dr's at that point, but I guess it was the age.
We are home where we will probably stay. Jim has a late dental appointment and I have lots of packing to get done as well as MORE LAUNDRY!! UURGH! Well, I hear Logan, so I better go. Oh, I did find out that Taylor's commercial will only air on Charter cable, so if you don't have Charter you will have to go to a friends house that does! It will air on every charter channel, but not other cable companies. Sorry! We do not have Charter either, but we were sent a copy of it. Guh has seen it though, so be watching, it is out there.
September 14, 2005 Day +896 Day #594 off treatment
Well, it was another normal day for the Watts clan. Well, almost. Logan was still asleep at 7:20 this morning and that is not normal! We had a wild day at school. My kids were so loud! No one was really bad just loud. We did a messy art project, but they loved it. I love to watch Taylor do art. I didn't get to see how he interacted and stuff last year, so as much I don't really like being his teacher everyday, I do enjoy that part. He has come so far with his coloring and cutting. I am not sure how he learned to cut, we never practiced it at home, but he does it quiet well. Today we did a messy art project that Taylor loved. All the kids did and it made my room look so cute when we hung them up. Once we got home Taylor watched Rug Rats and Logan napped. I started packing for camp this weekend.
We went to KFC and bought Chicken to bring to Miss Roberta. The lady said she had extra left over from the last batch (they have to sale by a certain time or throw it out) and she gave it to us. We ended up getting a box of chicken for free. I let the boys eat that for dinner. Logan lapped it up, but Taylor said it was too wet. I am guessing he meant greasy, but I am not sure. He wouldn't eat it, so he ate cereal.
Jim and I went to Wal-mart and bought some pirate stuff. We have never been to Family camp, so this is our first dance. I didn't get anything for Jim and I, but I got Taylor a shirt, scarf, and a parrot to sit on his shoulder. He already has bandanas, eye patch and sword. I am going to borrow and outfit for Logan from a friend who went to camp a few weeks ago. It should be very cute to see them all dressed up like pirates. I need to get Jim to get some new photos on here in the worst way. You wouldn't believe how big the boys are getting.
Well, that is another day. Can you believe how close we are getting to day 900 post transplant. That is too cool! I can't wait to be writing bay 1000+!!! Thank you all for your prayers. Please keep them coming, look where they have gotten us. I am so very very thankful for the blessings God has granted us. Pray for those who are still fighting or just starting. Pray for those who are missing a loved one.
September 13, 2005 Day +895 Day #593 off treatment
We had a normal day at school. We watched a movie which is rare, to they enjoyed that. After school we came home to watch "Little Billy" that would be About 2 dogs or Where the Red Fern Grows. We are back on that kick now that we started "Big Billy" or WTRFG2. He is so funny when it comes to movies. He has been busy cleaning his room today and I have been busy cleaning the house. We will not be here this weekend to do it, so I went ahead and did some of it. I am sure we will still have a ton of laundry by then, but at least we started it. If I am every rich I am going to throw my clothes away and get new rather than washing. However, since we all know that will never happen I will just keep complaining about it!
As I predicted yesterday there is nothing to tell. We have just had a normal day. We are planning a night at home to watch House, our new must see show. I am sure the boys will be playing in Logan's room since there will be no cartoons on.
Well, I hate to bore you and run, but I gotta go. I will update again tomorrow. I do thank you all for continuing to follow Taylor and pray for him even though things are normal now. We all know all to well how crazy this beast is and how fast "normal" can be snatched out from under you.
Please pray for Taylor and his NED status, pray he is NED forever!!! Pray that all of those who are NED are able to stay that way forever. Pray for those who are missing a loved one or just starting the journey.
September 12, 2005 Day +894 Day #592 off treatment
I must say I did not want to get up this morning. I was so comfy all snuggled up and it must have been a mutual seeing as both boys were still asleep. We all finally got up and got moving. We got to school and started our great day. We had a good day at school. After school we headed to Nana's where Logan stayed while Taylor went to speech therapy. He did great. He worked on ending his words. He did pretty good. He didn't always get the right ending, but he tried. We have one that will need to be fixed, he again said a bad word when asked to say Fork. I had to laugh! I also got tickled when they played picnic and she asked him if he wanted a bear or mouse plate. He chose the mouse and when he held it up and I could see it I saw it was a hippo. I told him later in the car that next time he needed to tell her that was hippo. I think it would be rather funny for him to correct her! I don't know if she really thought it was a mouse or if she didn't think he would know what a hippo was, but it was still funny.
After speech we went to get Logan who was playing just fine, but got all whiney when I walked in. We stayed for a little but while Taylor ate. He knows there are cool snacks at Nana's so he always wants to eat when we go there. We then headed for home were Mr. Logan got put in the bed for being mean to Taylor. We have been telling Taylor that one day he would start picking on him rather than the other way around and the day came sooner than later!
We had to make a grocery store run or we were going to have no lunch for the boys. Both boys were pretty good for that with the exception of the noise. They were making car noises as the rode in the car buggy. We just let that go. I am sure it annoyed some people, but hey, they were not screaming or fighting, so it was a good noise to us.
Not much to tell, but that was our day. We don't have anything going on this week so it probable will not get any more exciting. This weekend will be full of fun. We go to Camp SAM Friday night through Sunday afternoon then we are going to a church picnic at Tannehill at 4:00. We will be so tired Monday, but that is okay.
September 11, 2005 Day +893 Day #591 off treatment
I learned something very cool this weekend. I was looking at the Miss America website to see if I could find out when the pageant was this year. Anyway, I took a look at the places Deidre has been as Miss America and found a picture of Taylor. My little man is on the Miss America Website. How cool is that? You better check it out soon seeing as it is almost time to crown a new Miss America. I can not believe it has been a year already. I am so glad that she won and that she dedicated her year supporting childhood cancer! You can check out Taylor's photo by going to www.missamerica.org Click on Miss America 2005 and then on the travel link. He is on the May 19th visit to Birmingham.
We finally made it to church this morning. We have been so busy this summer that we have not made it much. Taylor had fun at the Children's minute. They got to take turns spraying spray on leather to see how is changed it. Yes, there was a lesson to be learned from it. After the little play time they learned that God conditions our hearts so it doesn't get brittle and break. I love Children's minute, it is so simple. He looked a little panicked when the rush of kids headed to children's church and he got caught up in the traffic. He finally made his way back to us where he sat quietly in church.
After church we headed to the mall where we found outfits for picture day this week. You all know me, if they don't match I am not happy. I am not just thrilled with my choice, but it was the best I could do in a short sleeve shirt. We walked around until Logan was just too much and we left. Of course, by the time we got to the car he was sound asleep. Oh well! We went ahead and left and drove to Academy sports. I just sat in the car while Jim and Taylor went in. Taylor got him some real camo clothes to wear to the huntin' club. He is so excited about them. We went to Guh's to hang out since we had a while before the candle ceremony yet not enough time to go all the way back home. We played in the yard for a while then went in to watch Where the Red Fern Grows 2. Yes, there is a 2 and Taylor is thrilled about it.
We headed to Liberty Park where the Kandles For Kids ceremony took place. The first half is always so much fun. We got to see people we hadn't seen in ages. I saw kids up walking and playing that were in wheel chairs the last time I saw them. I saw a young couple who had met at camp and were now "going together". How cute! I saw nurses and doctors out in the "real" world where there were no meds or medical talk just fun. Taylor was full of energy and running around like a wild man. He made an ice cream Sunday with vanilla ice cream, m&m's and gummy worms. He ate it too! He shared the worms with Logan who in turn shared them with Copper. Copper is Miss Lynn's dog or better yet she is Camp SAM's dog. He is always at camp, but he may want to skip next weeks camp session. We are going to family camp on Friday and staying until Sunday and we are taking Logan. Logan chased poor Copper all over tonight, so I can imagine that he will be all over him next weekend. The boys loved the bubbles, but we had to stop that after Logan got it in his eyes. They had a baby pool with the bubble stuff in it and Logan all but got in it and he had bubble solution all over him and started rubbing his eyes. We had to get a bottle of water and hold him upside down and poor it over his face. He was not real happy, but it cleaned him up. Soon it was time to light the candles and that is when it gets somber. They read the names of each child/teen that has passed away since the last Kandles For Kids. There were way too many names called out! It is so sad, but at the same time so beautiful. Everyone had a candles and we lit them around a circle then stuck them in sand and let them burn for those special kids. I of course was crying like a baby. I can't help it, I am an emotional person. I was crying watching a lifetime movie last night and Taylor kept going, "what is wrong with you"? Boys, they don't get it! Tonight was extra emotional after all the reference to 9/11 on top of it all. You know the day your child was diagnosed with cancer is each cancer families personal 9/11 or as one girl put it tonight "D Day" Diagnosis Day.
After the ceremony we headed home where both "sticky" boys needed a bath. Logan went right to bed and Taylor is pouting because we threw the new paper away before he used his silly putty on it. We will go to school tomorrow and then to his second speech class. I will let you know how it goes.
Please pray for Taylor to be NED forever. Pray for all those families tonight that had their child's name called out. Pray for those who have been called out in years past. Pray for those who are just starting this battle. Pray for DJ as he struggles with progression as well as Christi.
September 10, 2005 Day +892 Day #590 off treatment
I met the guys in T-town last night. We had dinner then I brought the little guys home. We were back home by 6:00. I had to give them a bath seeing as Taylor was filthy from all his hard work in the woods. He had a blast, but he was upset on the way home that daddy didn't come home. Logan went to bed around 7:45, he has learned to climb into the bed and then he can't get out. He did it over and over and I finally just left him there. He went on to sleep, so maybe he was trying to tell me something. Taylor was so tired, but he was afraid he might miss something. I put him in my bed and turned on a movie and told him I would be right back. I went back to the living room knowing he would be asleep before I got back. Sure enough, when I went back about 10 minutes later he was out like a light. I had both kids in the bed by 8:30. I watched TV for a while and I got bored, so I went to bed too.
Saturday morning was going smooth, I had given Logan juice and toys and he was happy in his bed. Taylor got up and went to the living room, but I thought nothing of it. He drug a stool to the door and took the chain off and opened the front door. He was looking to see if Jim was home, but he set the alarm off when he opened the door. I had to run in there and turn it off, so much for sleeping in.
I went back to get Logan up since we were all up. He was still quiet and happy. No wonder, he had taken his clothes off, diaper included and had p'd all over the place. I then got to strip the bed and wash another load of laundry. We went ahead and got ready and went and picked up Gam maw and went to Visionland. We started in the ride area where the boys rode everything twice without getting off. They rode the little trucks all alone, we set outside and watched. I was afraid Logan would try to stand up, but he just drove and had a good time. After a few rides on each thing we headed to the baby park in the water area. It was much less crowded and we were able to let them go without losing them in the crowd. Logan was content just sitting there and splashing, Taylor was all over the place on slides and swimming. Poor Logan was so tired that he laid down on a towel on the concrete. We packed it up and headed out at that point. Taylor wanted to go to the wave pool, so I took him while Gam maw walked the stroller around and put Logan to sleep. It didn't take long at all! Taylor loved the wave pool and sand. I hate sand.... We then headed to change clothes thinking we were going to ride more rides, but Taylor was hungry, so we just left. We called the guys and met for dinner.
Once we got home and cleaned up we just hung out. Getting cleaned up was an adventure. Taylor burped as he was getting into the tub and spit up a little into the water. We took them out and put them in our bath tub. On the way down the hall Logan stopped and p'd. I tell ya, there is never a dull moment around here!
Please continue to pray for Taylor to be NED forever. Pray for Miss Roberta as she starts her chemo. Pray for Davis who is inpatient right now with fever and he also had some spots show up on his lungs on his CT. We know just how scary that is! Pray for DJ who has 3/4 of his lungs covered with NB and has several new tumors. The Dr. told his mom that he has 4-6t weeks to live. I just can not imagine those words being said. Pray for DJ to be as comfortable has possible for God to hold his family close as they go through the next few weeks.
September 9, 2005 Day +891 Day #589 off treatment
Jim, Taylor and Paw Paw left at 4:30 this morning heading towards the hunting club. Taylor was very wishy washy all night over rather or not he wanted to go. He wanted to, but was afraid of missing the trip to Visionland. After much promising that he would be back in time for Visionland he decided once and for all to go. He was all packed up including his play bow and arrow. He went to bed in his camo clothes so that he did not have to wake up and get dressed. Jim just scooped him up. I am going to meet them in Tuscaloosa later tonight to pick him up. It worked out better this way anyway. This allows Taylor to do both things he wanted to do and it allows them to actually get some work done tomorrow at the work day.
Logan has looked for Taylor all day. I guess he thinks he is hold up in his room with the door shut. He keeps knocking on the door saying "mama". He calls me and Taylor mama. It can get confusing. He is napping now and when he gets up we will be heading to T-town. He got his nose painted today at school. I am not sure why, but he has a little red nose. He thinks he is cute too. He did not want to leave today, he loves miss TT as he calls his teacher, Kelli. I am doing laundry and just like last Friday trying to get all I need done tonight so that I can play this weekend and not worry about chores. I am sure that tonight will be spent playing Candy Land or building puzzles.
Please pray that Taylor is NED forever. Join us in thanking God for the miracles he has performed in Taylor's body. Pray for all of those who have been fighting for so long and keep fighting. Pray for those who are just starting this journey or missing a loved one. Pray for one of our Faithful prayer warriors who has been dx with cancer herself. Keep your chin up this page is living testament that God still works miracles!!
September 8, 2005 Day +890 Day #588 off treatment
Back to routine, finally. We have had so many off days lately that it is crazy. We had a great day at school. All the kids were good. We rushed out of school and headed to Nana's to drop off Logan. She kept him while Taylor and I went to the dentist. Taylor sat and talked to himself while I had my teeth cleaned. He was just a talking and he kept making this odd noise that sounded like the drill she was using. We kept getting tickled at him. It didn't take long and we were headed back to Nana's. We played there for a little while until Logan got upset. He thought I was going to leave him again and wouldn't get out of my lap, so we just headed on. He is just getting in that stage where he wants his mommy. It is sweet yet annoying at the same time!
Both boys fell asleep on the way home. I was just a rocking out to the Letter Factory movie that was still playing. I didn't even realize they were asleep for a long time. I know, I need to get a life! Mr. Logan gave us some fun last night. I went to check on him before we went to bed, he was sound asleep with no diaper. He had decided to take it off, it was still around one leg, but slid down. I laughed so hard that I could barely get it all together to get it back on. I did and he never woke up.
Please pray for Taylor and his continued success against this disease. Pray he is NED forever. Pray for all those who are still fighting their battle. Pray for those who are missing a loved one. Pray for a Kindergarten teacher that teaches where Taylor will go next year. Her little girl was just dx with leukemia this week. I remember how scary those first few days were.
September 7, 2005 Day +889 Day #587 off treatment
I hope that this September 7th is more fun than the last two we have had. Sunday, September 7th, 2003 was spent in the air heading to NYC. We were in air by luck and good friends at the airport. That is the day we got to the air port about 2 hours after the flight left! Tuesday September 7th, 2004 was spent sitting in The Animal Kingdom Lodge for hours only to get on a non-air conditioned bus for 5 hours to very slowly drive to Ft. Lauderdale. We finally made it to our Disney Cruise that luckily hurricane Frances didn't do much more damage to that delay it. I hope that today is un eventful. I fell as though I should travel somewhere seeing as though it looks as though the 7th is a usual travel day for us. Oh well, a trip to the dentist is all we have planned for today.
The day did turn out better. We got to the dental clinic a little early, but in that clinic it didn't matter. We still sat until 10:15 before he was called back. Even though it was a late start we were still done and already upstairs visiting 4 tower by 10:35. Dr. Thomas is just great with him. He took Bozo and night night back with him. Logan and I stayed behind in the waiting room. He said that he cried a little bit, but he did great. He said the hardest part was his gag reflex. He said he had to work at break neck speeds to keep him from throwing up. I know first hand how bad that gag reflex is, so I just had to laugh! We will go back in 6 months. I am here to bet $5 right now that that doesn't happen. We were told in December that the computer automatically makes your appointment and they will call you and let you know when it is. That never happened, we went back in 8 months because I had to get good ole Meredith to make us an appointment. That is also kind of dumb seeing as the computer does not know my schedule and when is good or bad times for me to come. Whatever!! I guess in 6 months I will call Meredith to make us an apt. After the dental clinic we went to clinic 8 (oncology) to see if Rhonda was there. We didn't find her, but we did find a life size card board cut out of Diedre Downs holding a car tag. It was funny and Taylor kept getting next to her. We headed up to 4 tower to see if she was up there, but she wasn't. We did visit with the few nurses up there that we still know. The couldn't get over how big he was and how good he looks. When your child has chemo and loses weight they get so skinny and there legs looks so tiny. Mrs. Griffin just kept saying "look at how good his legs look". That may sound funny to others, but I knew just what she meant and was so glad that his legs did look so good. I had all intentions of getting him weighed in clinic when we stopped by, but I forgot. We ran into Jennifer who is the child life specialist who kept Taylor occupied while we were in transplant. She paged Rhonda, but she must have been busy as we never found her. Oh well, we will find her eventually. Taylor wanted to show her how he could whistle. No, he can not whistle. He forms his mouth like he is about to, but then he hums! Funny! We played in the play room for a while before leaving. No one could get over Logan, most of them had never seen him. Luckily, he showed his cute side for them.
We left there and met Guh for lunch then headed for hair cuts. Both boys were good while getting their hair cut, but both were wild Indians while waiting on the other one to go. That caused them to miss their trip to the Dollar Store that was next door. Of course, Logan didn't care, but Taylor was ticked off. We headed on home where Logan took a nap. Taylor spent half the afternoon cleaning his room and finally got it done. Temp and I took a girls night out for dinner. Sometimes we need those!
When we got home I remembered that I wanted to call the ENT clinic to ask about his bloody nose. It bleeds on and off and has since his surgery on 6/29. I could not get the ENT clinic to answer, so I called the peds. office. I wont even tell you how rude Joanie was, but she did not answer the question. Finally, the ENT nurse called back and very quickly solved the problem. She thinks that since he did not tolerate the nasal irrigation very well that he did not get all the scabs and stuff out. He picks it all the time and says that it is itching, so it must be healing and he picks the scabs and bleeds. It bled a lot this weekend and that is why we decided to call. She thinks that is from the water play and all that water washing out some of the blood. As much as no one wants to hear it, the answer is to start back doing the irrigation twice a day. UURGH!! I feel better knowing that it is nothing that might have gone wrong and that there was a simple answer and solution though it may not be a fun one!
I finally remembered a funny that I know I had forgotten to tell you. I am sure that it was one of those "you had to be there" things, but it was so funny to Jim and I. We were sitting there eating dinner the other night and out of the blue Taylor says, "do your share for cleaner air". He loves those black and white monkey commercials about the air. It was funny! He also cracked us up while watching a hunting show with Jim. A buck walked by the camera and he saw the horns and yells, "Deer Ears" Silly boy!
We had a little excitement here last night. Taylor had a glow stick and he bit it and got the stuff in his mouth and it started to burn him. He started coughing and gagging. I was in bed and jumped up running all the while my heart in my throat thinking he was sick. I walk in to him glowing green in his mouth and all over where he is drooling and spitting it out. All the while promising that he didn't put it in his mouth. We washed it out and brushed his teeth. The package says it is non toxic and it burnt his mouth, so he started spitting, so we do not think he swallowed any. I tell ya, it is always something!
Wow, that was a long update. It has been a while since I rambled on and on like that. Aren't you glad! Please pray that Taylor is NED forever. Pray that those who are NED now can stay that way. Pray for those who are fighting and not getting the news that they want from scans. Pray for those who are missing a loved one tonight.
September 6, 2005 Day +888 Day #586 off treatment
Back to routine. We started back to school today. We had a great day. Logan took a nap today and he never does that at school However, he is in the bed right now. I do not know if he is asleep, but he is quiet. Taylor was good. He just gets so wild and will not listen or calm down. He did sit in time out several times for disrupting class and not listening. He is now in his room working his new M&M puzzle. We have the same puzzle at school and he enjoyed showing his friends how to do it. He and Guh worked it several times yesterday here at home until he got the hang of it.
Again, nothing much to tell. We are off tomorrow to go to the dentist. Taylor will get a filling at 10:00 tomorrow. I hope it doesn't hurt him. Last time they did not use any type of numbing meds. They also did it the day of the check up last time, but refused this time, so who knows what they will do tomorrow. I will be taking Logan with me, so pray for our sanity:) It shouldn't take long at all to do it.
Please continue to pray that Taylor is NED. Pray for Christ Thomas. Pray for those who are still fighting. Pray that those who are in remission stay that way.
September 5, 2005 Day +887 Day #585 off treatment
Happy Labor day. I guess most of you are off today. We are. We just hung out at home then met Gam maw and Paw Paw for lunch. After lunch we split up again. The guys went to Woods and Water for some sporty shopping. Gam maw had to go to work and Logan and I met Guh at Wal-mart. After Wal-mart we pulled in the driveway right behind the guys. Guh stayed to play for a while then she headed home. I gave the boys a bath against their will. Usually they both enjoy a bath, but tonight they were busy playing and didn't want to stop. Logan went to bed after his bath also against his will. He played for a while before giving in and falling asleep. Taylor and I went to watch the rest of Honey, I shrunk the Kids since we fell asleep last night.
Not very much to report. We are all still worn out from yesterday's fun. We are packed and ready for school tomorrow.
Please pray for Taylor's continued success against NB. Pray he is NED forever. Pray for the Thomas family as they continue to fight this beast. Pray for those who are missing loved ones or just starting the battle.
September 4, 2005 Day +886 Day #584 off treatment
Today was fun! We went to Visionland and did both the theme park and the water park. We will certainly be getting season passes next summer. We had all intentions of doing so this year, but with the surgeries and asthma issues we just never got it done. However, both boys loved it. We started in the theme park. Taylor rode the Hurricane which is like the old fair ground staple the Himalaya. He loved it going forward, but he did not care to much for going backwards. He wanted to ride several other things that he was not tall enough for. Jim, me and Paw Paw rode the roller coaster several times. We didn't get to ride the Rampage because a girls safety bar was stuck and she couldn't get off. We went to the logs and the Wild River gorge which Taylor could have done over and over. He as well as we were a little disappointed at how short the rides were. You know Taylor has only been to Disney World where everything is on a grand scale, so he didn't quite get these short no theme rides. He still loved it. After a few hours and some lunch we made our way over to the water park. We did the lazy river for a while, where we could have all fallen asleep. We then found seats at the kiddie part and hung out. Taylor was a little braver now and did the slides in the kiddie part alone. Jim and I took turns taking Logan down the slide. I am not so sure he liked it, but he did it because Taylor did. I forgot to mention that he rode the kiddie roller coaster with his bubba. The first time around he didn't so much like it, but he seemed to enjoy it later. He never cried though, he would just look at you like you were crazy. He liked the airplanes, but he had done stuff like that at Disney. He of course was in heaven in the water park. The water was freezing and he was shivering, but he wasn't getting out. He was splashing and jumping right along with Taylor. Neither of them really liked it when the big bucket of water would dump on them.
We had to drag them both out even though we had been there for about 6 hours. We didn't have any crying though and we bought return tickets to go back next weekend. He says he wants to go to the hunting club with daddy instead, but I think he will change his mind. Taylor fell asleep on the way home, but he got up to play. We went to eat some ribs and stuff that Paw Paw had gotten. We didn't stay long since all of us were worn out. We headed home where Logan went right to bed in his clothes. Taylor played for a while then told me he was ready to tuck in. I don't think it was very long at all until he was asleep. Jim and I were in bed by 9:20. I couldn't sleep, so I watched TV, but of course, as soon as I got interested in something I was gone.
I read some web sites last night and I found some good news as well as bad. I ask you all to pray for Christi Thomas and family. I told you about her recent progression and even though they are still treating and trying some new trials, it does not look good. She has a very non-responsive form of NB and there just isn't much left to be done. Her mom wrote on her site last night that she had been working on her Eulogy and things that would be said and shown at her funeral. I lost it! I can not even imagine the pain of having to do something like that. I can not imagine the pain and fear of knowing that it would be needed. I am praying for you Thomas Team!! Please keep them all in your thoughts and prayers. www.christithomas.com
September 3, 2005 Day +885 Day #583 off treatment
It was a lazy day for us. We were all up by 8:00 due to good ole Logan. We went to breakfast with Ghen Ghen, Gam maw and Paw Paw. After breakfast Taylor, Paw Paw and Daddy went to some sporting goods stores while Logan went with the ladies to Watermark for some shopping. We then went back to Gam maw's where she cooked some "football" food. We stayed for a while then we went home to do yard work and house work. Jim and Taylor went back to watch the Auburn game. Logan went to bed a little bit early and I just hung out. Taylor got sleepy and asked to come home, so we they were back by 10:30. Taylor and I climbed in my bed and watched Honey I Shrunk the Kids.
It was a lazy day for us full of normal Saturday activities. We hope to have many more of those days even though it does not make for much of an update. We are going to Visionland tomorrow, so that should make for a better update.
September 2, 2005 Day +884 Day #582 off treatment
I am so glad it is Friday. It was a short work week, but a strange and tiring week all the same. It was a good day today. We hade a good day at school with only a few time outs and none for Taylor. He had some listening problems at lunch, but otherwise had a great day. He was in a group with a girl for center time. They played fine and had no arguing going on. I just thought I made a good choice of those two in a group together. I think they had other plans...Every time it is time to move to a new center I ask them all to stand and listen so they know where to go next. Every time we did it they would stand and hold hands until they were told where to go. Very funny! Another funny for you. The other day Taylor was eating ginger snaps in the car and he told me. "My mouth has heart burn because these cookies are hot". It was so funny! I don't even know where he got heart burn from it isn't something we talk about around here. I guess that is what made it so funny. Logan is also talking up a storm, it is just not very intelligible. He jibbers very fast and you may gather a few words from it.
After school today we came home where Logan took a 3 hour nap. Yahoo! I got a ton done and hopefully we will have all the house work and yard work done tonight and we can play this weekend. We plan to go to Visionland or Bisionland as Taylor calls it.
September 1, 2005 Day +883 Day #581 off treatment
As I say every month, I can not believe it is September. It was just the other day that we started August or so it seems. Oh well! We did some Christmas shopping last night. We found some cute things for both boys that we went ahead and got and put away. Don't let me forget where they are! I must give you bad news today. Jamie AKA Beebo earned his angel wings yesterday. He was an inspiration to us all and we will greatly miss him. His family was a huge support to other NB families as they are the ones behind the warrior page that lists so many NB kids. You can check it out as well as Jamie's page at http://www.warriors.beebo.info Pray for this family as they miss their little man. I can not imagine..... Also, pray for all those who are left with no home and missing loved ones after Katrina ravaged their states. We had a set back with no cable or sky light:), but it could have been far worse. I have a happy and healthy 4 year old, who needs a sky light? Also, pray for Chris and Temp. They have just had a pile of bad luck lately. We love you guys, it will get better!!!
September is Childhood Cancer Awareness month. It is also the big month for Lunch For Life. As you may recall this is the idea that Mark Dungan, dad to Sydney (NBIV), started a few years ago. The idea is that if we all gave up our lunch for one day about $10 and ask 10 friends to do the same and so on and so on that we could raise 10 million dollars. I don't think we have made that much yet, but we can do it! Please visit this web site and think about giving up your lunch to save the life of a child. www.lunchforlife.org
We finally went back to school! It was a wild day and you could tell the kids were ready to be back. I heard several kids playing and they were asking about the power, you can tell many of them have been in the dark the last few days. We had a good day despite some fighting and time out. After school we went to the bank and to get the oil changed. Logan slept through it all, but Taylor asked about every move the guy made. He was fascinated by it all. We then came home where we were happy to see that the cable was back on and Taylor could watch cartoons. However, he went to his room and Logan went to his and they are playing and not watching TV. Figures! You only want it because you can't have it.
Please pray that Taylor is NED forever. Pray that a cure is found soon. Pray for those who are still fighting. Pray for those who are missing a loved one. Pray for those who have lost everything in the hurricane.
Back To Top
August 31, 2005 Day +882 Day #580 off treatment
Here we sit again with no school. I was glad to not have to get up and get ready, but based on some attitudes flying around here from some little boys, I just assume be at work. They have fought since they got out of bed. Logan is whining over everything and Taylor is mad that there is no cable. I have put in a movie, so it is no different for him, but he must complain. Any other day he begs to watch a movie and wont just watch whatever cartoons are on TV.
I gave Taylor a cup that I usually send Logan to school and he is having a fit wanting that cup even though he has already had some milk in another cup and he know that is not his. UURGH!!!
We are hanging out and I think we may go eat with Guh and deliver some Mary Kay. Other than that we have no plans. I still haven't washed the clothes, but I did put away all that was still out from last week! I cleaned out Taylor's closet and got out all that was too little. I need to do Logan's too, but I will just dump all the summer stuff out when it gets cold and be done with it rather than trying to see what doesn't fit right now. We need to get a bucket out of the attic that is full of Logan's next size. This will be a hard year on clothes. This is the age that Taylor started going to the hospital, so everything will be remembered from hospital and clinic visits. He had so many outfits he never wore due to his broviac line and not being able to get one piece things around all the wires. Last night Logan slept in the PJ's that Taylor wore to his tumor resection. Logan still looks like such a baby, I don't remember Taylor being so little, but I guess he was. Is it possible that he was so small when he started cancer treatment? That is just sad. Sometimes it is harder to look back and remember those days than is was to actually live them. Back then we did what was necessary to get through, but now we can actually think about how scary it was and the what if's. Anyway, enough of that. I am sure every outfit I put on Logan this winter will bring up a memory of some sort. Hey, at least the updates will be about more than trips to Wal-mart.
Please continue to pray that Taylor is NED forever. Pray Logan never endures such. Pray that a cure is found soon! September is childhood cancer awareness month as well as the month for Lunch for Life. I will update more in that tomorrow.
August 30, 2005 Day +881 Day #579 off treatment
It was a long night, but the morning has held the excitement.
Starting with where I left off last night. It was loud in the house with the TV on and the kids playing and we both heard a loud crash. I looked thinking the kids had done something in the back of the house, but they were both sitting in the living room floor. Jim and I both knew then it was "the tree". We have a tree in the yard that we just know is going to fall every time there is a storm, but it never does. However, it did tonight. Luckily, it fell towards the road and didn't touch the house or power lines. It was loud, but no damage done. We are just glad the thing fell and we can not worry about it anymore.
We lost cable again around 8:00, so we put Logan to bed and played Leap Frog with Taylor until about 9:30 and we went to bed. We had Logan's monitor on Fox 6 just in case we needed it. I guess it was about 10:30 when Jim and I both jumped up because we heard something. Jim went outside to see if he saw anything, if we had any holes in the roof we wanted to know about it sooner than later. He didn't see anything. Several times throughout the night we heard noises that we could find no reason for and just assumed debris was flying and hitting the house and roof. I found out that was not the case this morning. I got a phone call at 8:04 this morning so I know all was fine then and at 9:00 I went to get Logan out of my room, he tends to get in big trouble in there alone. As I was walking down the hall I commented on the fact that it sure was sunny in there and thought that Jim must have opened the blinds this morning. Well, I got a surprise when I went in, I wish I have photo of my face, I am sure it was a good expression. The sunroof was GONE! I assume that the noises were that thing rising and falling with the wind. I called Jim and told him to get home now. It took him a while to stop and get tarps and stuff in case we needed it, but he was here pretty quickly. I was moving jewelry stands and laundry out of the way of the water blowing in off the roof. I told the kids to stay put while I went to see where the actual sun roof had landed in the back yard. It was in one piece out in the back yard and as I was examining it I heard "WOW" come from my room, they had to go check it out.
We were very lucky, it was in one piece and just need to be re-tacked and some new roof tar put on it. Paw Paw, Jim and Pop had it taken care of in a short time. Jim went back to work by 11:30. I am so glad that it was easily taken care of. I have put the room back together. I need to vacuum up the leaves that blew in and the carpet is a tad damp, but otherwise all is fine in there. I have a ton of laundry to be doing, but I am so not in the mood. Maybe later....
I hope that all is well with you all and that you have minimal damage. I hope that any of you reading from the gulf are safe. Please pray for all those in Ms. and LA. who were hard hit. Pray for all the kids/adults who are fighting illnesses or disease. Pray that Taylor is NED forever.
August 29, 2005 Day +880 Day #578 off treatment
It was a crazy day. Between the hurricane blowing in and all the doctor visits we have been busy. We had school as normal. It began to rain as we pulled into the peds. office, but luckily not too hard. We were early, but we went on in while it wasn't pouring down rain. I was afraid it was going to be a long wait based on the beginning of our visit, but it wasn't. Both of Logan 's ears are fine. I almost didn't go since it was $20 for that quick peek in the ears, but I was afraid that ear might still be a little plugged up after all he is not one to complain much when his ears bother him.
We had time to go to the gas station before Taylor's speech apt. We got to the ENT office early and signed in, but no one ever called us. I went to ask if I was in the right spot and got a big surprise. The therapist didn't put him in the computer, so he didn't have an appointment. He did, but he didn't. The therapist expected him, but since he wasn't in the system the staff didn't know what to do with him. It was the girls fault for not putting him in, but the staff in the front just ignored me rather than trying to figure out where we should be or why we were there with no apt. It took about 15 minutes to get it straitened out and we were on our way. I had to sit in the observation booth to watch, so that I would know what to work on with him. He did good with her, he tried real hard to do as she asked. He talked to her and didn't keep his fingers in his mouth or anything like that. I think he will do fine with her. He will get at least 20 weeks of therapy then we will re-evaluate and see if we will keep going or stop. I have to call the insurance co. to see if outpatient speech is covered, I hope so seeing as it is $56 a session.
We headed for home after the therapy session and never did run into any rain. Jim had called about 15 minutes before we left the hospital and said he was on his way home, but we still beat him home by a good 15 minutes. There was so much traffic on the Parkway and on HWY 31 that he couldn't get to the interstate. We had no cable when we got home, so we used Logan's monitor as our TV to keep an eye on things, but it is back on now. It is about 7:30 and we are just now starting to get some high winds and rain. It may be a long night. I hate that is bad over night, I wont sleep for worrying over it. I haven't heard yet if we will go to work or not tomorrow. It wouldn't hurt my feelings to be off, but it may hurt my wallet's feelings a little. We are just hanging out and hoping we get past over by any bad weather. Pray for those who are in the path of Katrina.
Please pray that Taylor is NED forever. Hey Guess what, a tree just fell over in the yard with a big bang! I better get off this computer. Be safe!
August 28, 2005 Day +879 Day #577 off treatment
It was hard to get up today. Logan was up at 6:30, but I just couldn't get up, so he had to tuff it out for a while. He played until about 7:45 and he had had enough and let me know by yelling. We got up and headed out to Gam maw's to swim. As we were pulling up she was leaving to shop, so I went there instead. The guys rode down to the huntin' club. That was a mistake once they headed home, traffic was awful with all the people driving up from Mississippi and Louisiana to dodge Katrina. The boys swam for a little bit when they got home then we headed home. They played out in the yard for a while and I cleaned as much as I could until they came in. We are now just hanging out. Logan refuses to go to bed, but he is so tired. They are playing nice together, so I will let him be.
Tomorrow we are back to school. After school we will go to Logan's appointment to recheck his ears from that last infection. After that we will head to Children's South to Taylor's first speech therapy class. He will be working on his articulation. I will have to take Logan with me tomorrow, so hopefully he will behave. The session is only 30 minutes, so we should be able to make that.
Please continue to pray that Taylor is NED forever. Pray that a cure is found, soon!
August 27, 2005 Day +878 Day #576 off treatment
We had a great day. We started it around 8:00 after letting Logan hang out in the bed as long as he would. We got ready and went to Tannehill for the family picnic portion of the reunion. It was fun, but hot! Taylor had a great time with the other kids. It is so crazy to see all our high school friends with kids! There were a lot of them there too. After the picnic we headed home. The boys played outside and Guh and I went to get pedicures. When we got home we played with the boys until time to get ready. Guh bathed the kids while we got ready then we did the traditional scratching of the wheels and honking of the horn when we left. Just FYI, if you come to our house you must do those things in order to leave without the kids crying. We had a great time at the civic center. We did some dancing and chatting and having a good time. It was so great to see everyone and catching up. We are hoping we can do stuff like that more often. Everyone was so nice about Taylor, checking on him. Some have known the story and followed his progress and others had no idea. It was nice to know all our friends prayed us through even though we didn't get to talk to them much. Thank you all for that! The night flew by and soon it was time to head home. We got home to find everyone tucked in and sound asleep. We were right behind them.
There was so much going onto today, I don't even really know where to start. I will just leave it at we had a blast and hope it doesn't take another 10 years to see everyone. Thanks to all of you who prayed for us and still are. Please continue to pray that he is NED forever!! Pray for all the kids and adults who are fighting some sort of illness or injury.
August 26, 2005 Day +877 Day #575 off treatment
I am so glad it is Friday! We have a busy weekend ahead. Tomorrow we have Jim's 10 year class reunion. That should be fun. As for tonight, Jim is working until 6 then we are meeting Gam maw and Paw Paw for dinner.
Taylor will start speech on Monday afternoon. I do not know if it was a coincidence that the girl called today or if the supervisor moved him up the list and made her call. I don't care either way as long as we get it done. I would rather have gone to the school and maybe we can still get in there later, but for now we will be going to Children's South from 3-3:30 every Monday. It was that or Tuesday's at Park Place which is down town. I would rather go to Hoover than fight down town traffic. He will start Monday. I am going to keep calling the school system folks to see if we can't get that going in the future, but for now we will be driving to do it with Children's.
We didn't do too much this afternoon. We hung out while Logan napped and then we played until daddy got home. Gam maw and Paw Paw came over for a little bit and we looked at all of Taylor's "big boy" work from school.
Hope you all have a great weekend. Pray that Taylor is NED forever. Pray for all the other kids out there who are fighting.
August 25, 2005 Day +876 Day #574 off treatment
It was a rough day. The kids were all in rare form. Taylor was the ring leader! After school we came home and hung out until we left and met Daddy at Wal-mart. We had to have milk and of course got a few things that were not on the list. Isn't that what you are supposed to do at Wal-mart? If not I have been doing it wrong all this time!
I am pleased to say that my co teacher from last year welcomed a baby girl into our world today. Well, she was induced anyway, I have not been official word yet! I am sure she is here and beautiful. Congrats Davis family!
I have been on the phone all afternoon trying to figure out what is going on with Taylor's speech therapy. I don't remember if I told you about what was going on with that. He was tested at Children's and put on a waiting list. He is also eligible to do it at the county he is going to go to school at. I called McAdory elementary early in the summer and was told they would call when school started, but they didn't. I called her back and she informed me that he would get it at McAdory High school which I thought was rather stupid, but closer to home so okay. I called the girl there and she said he would have to be re-tested by the county not the hospital. Why? That was a 2 hour test that I would rather not do again and I am sure Taylor would prefer not to. She told me to call Brighton Elementary school where he would have to go be tested and see if they could use the other test. Well, I do not even know where Brighton school is and I don't see why I need to go there to take a test we have already done. I waited and waited on her to call me back with the number and finally tried to call her back yesterday. I called for hours only getting busy signals, no wonder nothing ever got done right in that school, that is where I went. Anyway, I finally looked it up in the phone book and hoped I had the right place. I got them, but the lady I needed was in a meeting and they took a message. I can tell by the message takers attitude that is one phone call that will not be returned. I finally called the head of the speech dept. at Children's and explained that I had been trying to get this done for months now and I am trying to get this started before he goes to K5 in the fall. I asked if she could get him on up the waiting list or if she knew who I needed to talk to to get it going at the high school. I had to leave her a message too, so we shall see....
We skipped bath night tonight. I just overlooked the pudding in Taylor's hair and who knows what that is in Logan's hair. I am Taylor's teacher and I don't care if he is dirty and Kelli will love Logan if he is dirty. Bath time is one of my least favorite chores. I am not sure why, but I do not enjoy that.
Another not so exciting day. Please pray that Taylor is NED forever. Pray for all the others in this fight.
August 24, 2005 Day +875 Day #573 off treatment
It was a good day. We had a few absent and even though none of the ones that were out are bad, it makes a difference to have a few missing. After school we came home and sat around. We met Gam maw and Paw Paw for dinner at the Plaza. Logan ate good and Taylor ate great. Taylor has really been doing good lately. After we ate we came home and went outside to play. Logan walked with Taylor around the back of the house. It is up a hil, so we didn't think they would get there very fast. In the time it took Jim to get around there they had not only gotten over to the swing set, but Logan had climbed the ladder up to the slide. We have one of those wooden wing sets, so it was rather high for him to be doing with no help. That child is going to kill himself or me one day!
After a little play time outside we threw the kids in the tub and started getting ready for bed. We spent another night of cleaning up Taylor's room. I have convinced myslef that I am not being mean by making him mind. He has got to learn to pick up after himself. I can live with a messy room it is the fact that he can get everything out in 10 minutes after he cleans it up, that gets me. He did much better this time and did not make a fuss, it still took him half the night, but he did it. He slept in the floor. He says he likes it that way, but I don't see why.
Please pray for Taylor to be NED forever. Pray for all kids out there who are still fighting. Pray for those who are in remission to stay that way. September is Childhood cancer awareness month. Pray that they raise a lot of research dollars. Now is a great time to check out the lunch for life site!
August 23, 2005 Day +874 Day #572 off treatment
I had a good day today. I got a second teacher. It was nice to have an adult to talk to not to mention help with all those yougins! They were pretty good today. The boys are getting out of control and kicking and hitting and wrestling. I am going to have to be tuff I see that now. Taylor bit someone today. I am mad that he did that, but at the same time, he can only take so much until he snaps and that is what happened. We have talked about it and it shouldn't happen again.
Not much else going on today. We are hanging out and Taylor is playing in his room. He has been hanging out on the top bunk where he plans to sleep tonight. He has a bungie cord looked over the top bed and is using it to pull things up. What an imagination!
Not too much else to talk about today. We are doing great here. We have no appointments for Taylor until his dental in September. Logan will have a recheck on Monday for his ear. He is rather snotty again now. He went outside a lot this weekend and I guess he will have allergies too. Why not?
Please pray for Taylor and that he is NED forever. Pray for Christi, DJ, Cam, Carter and all the others who continue to fight. Pray for Taylor, Morgan, Carolyn, Davis, Sarah and all the others who are NED to stay that way. Pray for those who are missing a loved one. Pray for all those who are fighting some sort of illness or injury.
August 22, 2005 Day +873 Day #571 off treatment
I did not get to take full advantage of my sleepy meds. Logan woke up at 11:45 wanting juice. I gave him a cup of water, but was not going to give him milk or juice in the bed in the middle of the night. One would think that that would be good enough or that he would get over it quickly and go back to sleep. Nope, at 2:00 I finally threw him a cup of milk and shut all of the bedroom doors. He downed that milk and was asleep in 5 minutes. Little snot! I guess that is why he has a shirt that says I'm the Boss, just do things my way! I have never seen one that just doesn't give up after a little while.
Today was a good day at school. The kids were good. Taylor had time out for not following directions and fighting. Logan was in hog heaven with his teacher. We need to get him some speech too. He calls Mrs. Kelli, TT. I wont ask how got that out of Kelli, but she doesn't seem to mind. He didn't want to go to me after school, like many times before he wanted "TT" to bring him to the car.
We are just hanging out now. I have done some laundry and the kids are eating snack and watching Arthur. We went to Golden Rule where both kids ate great. We stopped at Sonic so Taylor could get a milkshake that he didn't drink. Oh well! We came home and Logan went to bed and Taylor cleaned his room. He did not want to and it was a big deal, but he finally did it. I was checking up on my internet friends while he did that and I found out that Christ has had a great deal of progression and is starting yet another new treatment. I felt awful. Here I was being petty over a messy room and I should be cherishing every minute. I am afraid we have come into such a normal routine that we are forgetting that. The fear never leaves us and we should not let the special moments leave either.
Please pray for Christi. She has been fighting this disease for years now and has never been NED or off treatment. She has a lot of cancer all over her body, but God can still grant her a miracle. Pray that she gets one, pray she at least continues this fabulous quality of life she has led even while on years of treatments.
Stop by and visit her at www.christithomas.com
Pray that Taylor is NED forever. Pray for Christi as she starts a new treatment and starts the 4th grade. Pray for DJ as more tumors have been found. Pray for Davis who had to stop his accutane, but he is off tx now! Pray for Morgan and Carolyn to stay NED! Pray for all those who are still fighting. Pray for those who are missing a loved one.
August 21, 2005 Day +872 Day #570 off treatment
I was still up by 7:30. I just can't sleep late. We got ready and then went to breakfast and then to a few shops. Taylor got a few things and picked out some stuff for Logan. We then went back to the camper and packed up and put the camper back in "no occupant mode" Taylor rode on the couch as Guh moved the slide in back in. He thought that was funny. We were headed home by 11:00. We stopped at another Burger King to eat lunch. Taylor didn't do too good on lunch, but he had been snacking in the car. We drove to Peach Park and had milkshakes and played on the playground. We played there when Taylor was 16 months old. He found some old pictures once we got home and was thrilled to see it was the same playground. I had told him he had been there, but he didn't believe me. He was not happy when it was time to go, but we were so close to home and we were so ready to get there. We took Guh to Mary's to get her car. This time I didn't have a hard time getting him to leave. He was tired and ready to get home to see daddy. He fell asleep on the last 30 minutes of the drive. He was still full of energy when he got home. He was talking non stop all about his trip. Logan was pretty excited too. He loved his hammer we got him, he likes to hit himself in the head with it. Nut! I threw the boys in the tub and then put Logan to bed. I put Taylor in bed at 9:00. He was mad, but over it and asleep in about 2 minutes.
I again took meds to make me sleepy, my sinuses are awful right now and my head is pounding and I cough so much I can't sleep. I am going to bed early and hopefully will be ready to go to work in the morning. Taylor is ready to go back, but not me.
Please pray that we have many more wonderful weekends full of fun adventures. Pray that Taylor is NED forever. Pray that Logan never faces anything near what Taylor has. Pray that all our cancer friends out there still fighting are feeling fine tonight. Pray for those who are missing a loved one.
August 20, 2005 Day +871 Day #569 off treatment
We had a great day today. We went to Burger King for breakfast, Taylor wanted another transformer and luckily he got the one he wanted. After breakfast we headed over to Waterville USA. It didn't open until 10:00, so we had a 30 minute wait to sit and look around. Once we got in we headed to the big slides, but Taylor was not tall enough to go on the intertube slides. He was big enough for one you laid on, but he had to do it alone and he wouldn't do it. We went and got a spot by the kid section and stayed for 4 hours. He loved it. I know Logan would too, but he would have been hard to keep up with. Guh and I took turns going in with him. We also took turns going over to the wave pool. He loved that. He would lay in the shallow end and let the waves push him around. He liked the baby section the best of all. He could run all over and there were fewer kids over there. I went and did some big slides while he and Guh played. We finally had to drag him out and he was not happy about it. It was really a great day to go, it was kind of cloudy and not just unbearable hot. It started to get hotter by the time we left. We went and cleaned up and went to the outlets. As soon as we pulled in it started pouring rain. We sat in the car a minute, but it was too hot, so we ran for it. Taylor had fallen asleep and got woke up and he was grumpy as ever. He disagreed with every idea. I bought what I had come to buy and then we just left. It was raining and hot and he was so tired and cranky, it wasn't worth the battle. We didn't have money to spend anyway! We went to Applebee's to eat. He ate great, but he was not happy about it and ended up going to the bathroom before we left. We got a good laugh after a scare. Taylor asked where his fork and spoon was at, the girl only gave us 2 sets. Well, you all know that Taylor doesn't speak real clear and it came out "where is my fok and foon and he said it real fast. Me and Guh both got wide eyed as we thought he said Where is my "*@#$!& food." I think we need to get that speech therapy and fast before he gets into trouble!
We stopped by Wal-mart and got drinks and snacks then headed to the camper where he was happier anyway. We played Yatzee, yes, Taylor too. He was so funny shaking those dice and slinging them. He had no idea what was going on, but he worked hard to write down the numbers we showed him. It was good practice if nothing else. Taylor took a bath just to do it. He liked the little tub in the camper. I took a Tylenol PM and fell asleep. Taylor was a few minutes behind me, he fell asleep in the floor watching Because of WinnDixie, again. He loved it!
August 19, 2005 Day +870 Day #568 off treatment
Today is the day and it started off rocky. Taylor did not want to listen at school and I had to threaten leaving him at Nana's and taking Logan to the beach several times. Overall it was a good school day. We left school about 15 minutes later than usual and then realized that Taylor did not have Night Night and Bozo. Thankfully we realized it before we got on the interstate and we didn't have to do too much back tracking to get it. We dropped Logan off and met daddy to swap cars. We met Guh and headed towards the beach. It didn't take long before the "are we there yet" started. We stopped for gas and a potty break and that was it. Once we got to the camper and un loaded we headed to Lambert's for dinner. Taylor would have been happy in the camper all night and he showed his butt when it was time to go. Once we got there and he saw the action he was fine. Dinner was all we did that night since he wanted to go to the camper anyway. We watched Because of Winn Dixie. Taylor loved it. He finally fell asleep. I didn't sleep real good, I was hot and my sinuses are all messed up.
Taylor was good that night, but a little wild. He wanted to jump on the bed and throw the pillows on the floor and play hot scotch on them. He is a crazy guy!
August 18, 2005 Day +869 Day #567 off treatment
I had another great day at school. Taylor did not get in trouble today. He did get told a hundred times not to push and pull on folks. They were playing a game and I knew someone was going to get hurt. Well, Taylor somehow got cut on his hand. I know that it hurts, but boy was he mad when I told him I didn't want to talk about it since I told him to stop. He was furious with me. I tried to put a band aid on it and he said no way, so oh well!
We had to go to Burger King for lunch. He has seen the Transformer toy commercial. He got one too. I find it funny that he is all into all the stuff that Jim had as a kid that is coming back in style. Logan is sound asleep and Taylor is playing with his transformer and watching cartoons. We are all packed for the beach. Taylor has told me 100 times that we have one more sleep. As soon as school is over tomorrow we will drop Logan off at Nana's and head that way. Taylor has plenty of toys and movies packed for the trip. He doesn't grasp that we will only be there 2 nights. We could stay 6 months on all he wants to take.
Well, again I bring you an update full of everyday life. I do have a piece of news to share. Taylor's urine is back and normal. Normal is HVA=0-22 and VMA=0-11 Taylor's numbers were HVA=20.5 and VMA=7.6. These numbers are a little higher than last month according to Meredith. I forgot to ask for them last month, I just assumed they were find after never hearing anything. Anyway, Meredith said it was a tad higher, but it is probably lab error as it is not much higher at all. They are will within normal so I am fine.
Please pray that Taylor is NED forever. Pray for all the families out there that are fighting some disease or illness.
August 17, 2005 Day +868 Day #566 off treatment
I must brag on my class today. Wow, they were so good. Taylor did get in trouble for pushing again. He also got mad when I made him get off a bike to give someone else a turn, but otherwise it was very pleasant. We had no appointments today, so we came straight home. Logan is in bed against his will and Taylor is playing. I am washing clothes so that we can pack for the beach. As Taylor says, 2 more sleeps until we go. He has about a months worth of things in mind to do, but we have one day to do it, so he will have to cut it down some.
Today is a boring read, but that just means we are normal. I don't know if we have any plans today or not. I better go get Logan out of the bed before he gets out on his own!
Please pray for Taylor and his continues success against this disease. Pray he is NED forever. Pray that Logan never faces such things. Pray for all the cancer families and others who are fighting some other disease or injury.
August 16, 2005 Day +867 Day #565 off treatment
We went to school today, of course. Taylor did not have a real good day. He was very whiney and did a lot of pushing and hitting. He had another fit. I know he is pushing to see just how much he can do with his mom in the room, but he will learn he isn't getting special treatment. Other than an early morning fit and time out in the gym he and all his class mates were good. They are really enjoying learning and seeing all the new toys we have.
Paw Paw picked up Logan so that Taylor and I could head straight to St. Vincent's Hospital for our follow up visit with Dr. LaRussa. Taylor was in hog heaven. We got the ball room where Taylor was able to play golf on a practice putting green and play basketball with a hoop on the wall. It was really cute, but par for the course, it was the shortest Dr. visit in history. We were literally back in the car in 20 minutes. It took longer to walk to and from the car than the visit. That was fine by me but Taylor was not ready to go. Dr. L said he saw no signs of infection/snot in his nose or ears. His lungs sounded great. We are to stop the Zyrtec and stay on the Singulair. We will only do 2 Pulmicort nebs a day. If he gets to sounding congested or coughing we will add back the 3 Xopenex nebs until he clears. We will go back on Oct. 11th after his scans for another check up. He did test him to see if he could use an inhaler properly. He couldn't which was not a surprise at his age. Once he can learn that we will be able to get a Pulmicort inhaler rather than doing those 15 minute nebs twice a day. We will be working on that over the next 2 months until the next check up. Mr. Roger, who is the nurse practitioner there and used to be at clinic at children's, was there again and he told Taylor to come to his office when he was done to get something. Well, he was busy and I was going to just go, well, Taylor had not forgotten and we had to wait on him. He gave him an Auburn poster with the schedule on it. Maybe daddy and Taylor can go to the Tiger and Tide Tailgate party at Wings tomorrow and get it signed by a few folks. Thanks Mr. Roger for the poster.
We stopped by Bob Sykes on the way home. We collected money from his jar. Thank you to Bob Sykes and staff for allowing the bucket to stay there. Thank you to all of you who have dropped money in!!! Taylor got him a grilled cheese to munch on in the car. We then headed to Paw Paw's to get Logan. We went home and played until Guh came over. Guh, me and the boys went to the Plaza to eat. Daddy used his alone time to cut grass. Once we got home we just hung out. Logan went to bed and Taylor played. He ended up falling asleep while he watched cartoons.
Please pray that Taylor is NED forever. Praise God that he is not on only 2 daily meds and none of them are cancer related. Pray for all the cancer families out there. Pray for those who are missing a loved one.
August 15, 2005 Day +866 Day #564 off treatment
I guess it was a fluke, I hope it was anyway. This morning Logan tried to throw his leg over the end of the bed where it is highest and couldn't. He sat down and didn't try anymore, but screamed for an hour. At nap time I let him scream until he was real mad and he never even tried to climb out. I just put him to bed for the night and he laid right down, so maybe it was a one in a million shot that he got out.
Wow, my class was good today. Taylor was great. He did some pushing and then crying when he got pushed back in the gym, but that is 4 year olds and to be expected. I was so proud of them all. Once we came home Logan was gone. It has been a while since he fell asleep in the car. He must have played hard today. Taylor watched cartoons and made tents out of blankets and dining room chairs.
Logan got his had smooshed in the door. He cried and it left a little mark, but he is fine. I was putting away the stuff I used to make their lunches and didn't even realize that he was standing by the door. He had his hand stuck threw the hinge side of the door and when I went to shut it I got him. I felt bad, but seeing as he was barely upset I got over it. Isn't it funny how you can do that with the second kid!
Tomorrow Paw Paw will be getting Logan from school. Taylor has a 1:45 apt. with the allergy Dr. again. I am not sure what he will do if anything. He may just be re checking after changing a few meds and adding the prednisone and Zithromax. I hope he finds some kind of clue to find out where all this snot comes from. I also hope that I can keep Taylor from flipping out over Logan going with Paw Paw and not him.
Please pray that we get to the bottom of the allergy issues. Pray that he is NED forever. Pray that Logan is never in the cancer journey. Pray for all the kids and adults also on the cancer journey.
August 14, 2005 Day +865 Day #563 off treatment
Today Logan reached a new milestone that most kids reach. Luckily, Taylor never reached this one and I hope that it was a fluke and Logan doesn't remember how to do it again. He has been a pistol since 6:00 this morning. He screamed until I finally got him up at 8:00. He was all over the place into everything. He threw his breakfast all over the floor. He threw things. He was on my last nerve. Taylor and Logan both have a power ranger cell phone. I have put their names on them because Taylor thinks it matters which one he has. Logan obviously does too as he was going ape because he wanted the phone that Taylor had. I gave him his phone several times and he kept putting it down. Well, the last time I gave it to him he threw it at me. That was it, I put him in his bed where he screamed bloody murder. I was going to get him back up seeing at it was only 10:00. He got real quiet, so I decided he must be tired and would let him be and go get a shower. I turned the monitor on when I went to my room and I couldn't see him on the monitor, so I assumed he was at the very end of the bed out of the cameras view. Wrong, he was in the floor playing with a ball. We are in big time trouble if he has indeed learned to get out of his bed. I know he may never figure it out again and I certainly hope that he doesn't. He does sleep with his door closed, so if he does get out he can't go anywhere. Of course, he will probably learn to open the door next week:) He will take his nap at 11:30 and I can't wait to see if he gets out then. This time I will be standing at the monitor watching him in action.
FYI, Logan did not even try to get out at nap time. He played for a little while then laid down. After he woke up we went to eat and to Old Tyme Pottery with Gam maw. Logan was pretty darn good too. We stopped back by Paw Paw's to let Taylor swim a little bit. Taylor had figured out by then that the guys had gone to the huntin' club without him. OOPS, he wasn't mad though. We are now home. Kids are fed and bathed. Taylor is playing and driving Jim crazy to watch Power Rangers. Logan is walking around looking for baby and it is in the dryer.
Two years ago today Guh, Taylor and I were wandering around a dark New York City. I am so glad to be at home in hot, humid and lit up Alabama. Last year on this day we were fixing Jim's car in a Winn-Dixie parking lot for the 100th time in a month. Even that was better than being in the RMH in the dark. However, those trips to NYC and MSKCC played a key role in Taylor's success and we would hop on a plan tomorrow and go back if the need arose. Okay, so hop was the wrong term, I would have to be picked up and placed on the plane:)
Please pray that Taylor is NED forever and that our next trip to NYC is to site see and visit MSK to say hey. Pray that Logan is never in that situation. Pray for all the kids and adults out there who are fighting some sort of battle. Pray for our troops and the families missing them. Pray for Temps family as well as ours as we miss a loved one tonight and all those who are missing a loved one.
August 13, 2005 Day +864 Day #562 off treatment
Today was a fun day for us. The boys went swimming at Gam maw's and went to the dump with daddy. Logan was pretty good too. He ate a great breakfast. I am not sure how well he did the rest of the day, but I was so excited to see what all he ate this morning. I went to Tuscaloosa to work the Kip Tyner Talent Search. It was so much fun. I get to meet not only some other cancer families, but some really talented folks. We got to watch some amazing dancers and hear some awesome singers. I wish I could go to the finals next week and see who all got in, but I also really want to go to the beach. Taylor already knows about the beach trip, so I will be keeping those plans. I can't wait to go next year to the finals. They do it every year, so you all be sharpening up your skills and come audition next year.
A terrible storm came through Tuscaloosa, but thankfully it was over by 5:45 when I was heading out. It never even rained at our house. We did nothing once I got home. The boys played and watched Wiggles. Logan got put to bed at 8:00 due to getting into everything in the room he was told not to touch. I had a splitting headache and a sore throat, so I got in bed at 9:00 and Taylor and his Wiggles video came with me. He fell asleep during the 2nd time the movie played. I fell asleep too, but woke up shortly and just could not go back to sleep.
The finals for the talent search or at 6:00 on August 20th at the Bama theater. I am not sure of the ticket costs, but the proceeds go to Camp Smile A Mile. You will see a great show if you go. I have directions if anyone is interested.
Please pray that Taylor is NED forever. Pray that Logan is feeling better and this eating keeps up. Pray for DJ who has been scanned and has even more NB in his lungs and legs than just a few weeks ago. www.caringbridge.org/visit/dj Pray for all our cancer friends who are fighting.
August 12, 2005 Day +863 Day #561 off treatment
Today was crazy. All my kids that were out for the summer came back today. They were thrilled to see each other again. Taylor was much worse today that yesterday. He had an all out fit in the hall and the entire class stopped to stare at him. He didn't care. He tries to pull the mommy card all day and gets furious if it doesn't work. I think he is testing me and he was calm down. I hope so anyway! We had fun just playing. We will start really learning next week. I left early today to meet Jim and drop off Logan. Thank you Donda for watching Logan while we went to the funeral. He would have been hard to keep up with in the hot and rainy weather. It was a nice service, but gosh those are hard to sit through. I can't help but think about how easily Taylor's treatment could not have been successful and that I could be there for him. I am sooooo very thankful for God's healing hands as they are blessed us all so much. The funeral also brought back memories of other family members and friends that we have lost. They are all missed so very much. Pray for all those families who are missing a loved one tonight.
We all gathered at Nana's afterwards. One of Guh's old friends visited with us. Her son and Taylor had a blast playing legos and were good as gold. Logan was even good and didn't have us chasing him. He walked around and ate off of everyone's plate. That is his kind of eating. It was a lot of food. Thank you to all who provided for us.
We got home around 5:30. Taylor and I went to Wal-mart and got some things. I cleaned up the kitchen and Taylor finished his room he has been working on all week. He has been stopping to play more than putting away. He has $26 saved. He gets $1 when he cleans his room. He had it in his wallet, but he didn't like the way it made it bulge, so he took it out and put it in a ziplock bag. I wish I had the problem of my wallet bulging due to too much money. What a problem!
Tomorrow I will be in Tuscaloosa all afternoon for the Talent Search auditions. It is at the Belk Center at Bowers Park at 1:00. If you have any kid of talent please come out. Tomorrow is the last night to audition. The finals are the 20th and you could win $$$$. Camp Smile A Mile is going to benefit from box office sales, so even if you can not audition, you can come out and watch the finals. They are the 20th at the Bama Theater in Tuscaloosa.
Please pray for all of those who are missing a loved one. Pray that Taylor is NED forever. Pray that Logan feels better soon and starts to eat. Pray for all our cancer friends out there at all stages of the game.
August 11, 2005 Day +862 Day #560 off treatment
Today was the big day. Taylor moved up to my class. He had so much fun, all of the kids did. They did great. We had a laid back day full of fun. We did some art and had some fun with scissors. I wanted to see who could and couldn't use scissors and luckily they all can. That will make art much easier! Taylor was a little wild, but he calmed down when he was told. He did sit in time out, but it was for pushing. He has a lot of rules to learn, but they all made a great start. I was so glad to be back in my classroom. I still have a few more things to get together, but mostly it is done.
Logan's poor bottom is torn up. He is so miserable. I am thinking about letting him run. We had to cut the butt out of Taylor's diaper once since he was so raw. We had let him go naked, but he tt'ed every 2 steps on purpose, so we just cut the back out and kept the front covered. I may be doing that again.
Taylor was cleaning his room all on his own and then he got in his bed to watch the Wiggles, he is very into them again since we went to see them. Jim came home and when he wasn't hiding or running to find a hiding spot we had to go check on him. He was sound asleep. I tried to wake him up, but couldn't get him up. Finally, at 7:15 he got up. Needless to say he was not ready for bed at 10:00. I had to put him in his bed with some cars and a movie. I have no idea when he finally went to sleep.
Please pray that these boring updates are here to stay. Pray that Taylor is NED forever. Pray that Logan feels better soon and starts eating better. Pray for all our cancer friends.
August 10, 2005 Day +861 Day #559 off treatment
This will be a hard update. I called Temp to wish her a belated birthday only to find out that he Grandaddy earned his angel wings over the weekend. I came home to find out that my aunt Denise earned hers this morning. Please pray for all of us as we go through this hard spot.
On to the regular update...Logan has explosive diapers due to his Augmenton. It is great! Taylor has a fat lip from slamming face first into the floor at school and busting his lip. It is pretty. We had a good day at school other than that. Logan came home and took a great nap. Taylor is dressed like a power ranger and watching Buzz Light year. Goof ball!
He has kept me laughing lately. Yesterday at the dr's office he met a little boy in the waiting room. We all know that this time last year he would not have played with anyone. Well, now he was all over the place with him. I overheard the boy ask him why he had golden teeth. They are silver, but that is another story. Taylor told him that the Dr. took out his white teeth like his, but they will come back. The boy told his dad, "I want golden teeth". When we left after the visit the boy had already gone back to room. Taylor looked all over as we went back through the waiting room and finally asked, "where'd my friend go"? Taylor and Griffin get candy off Miss Pat or Miss Jean's desk after school. Well, today as we were leaving Taylor asked me, "can I visit the candy shop". It was so funny that he thought of the office as the candy shop. Griffin goes to "big school" tomorrow. Taylor will be lost without him to go get candy with or go run the track with.
Taylor is so excited about going to the big class. I am excited to get to go back up to my class and getting a routine back. I hope that Taylor is a good boy in his new class for his new teacher:) Logan wont be moving up, but it doesn't mean much for him since he goes to either class in his age group. He is so rotten.
Pippy and Pop came over tonight and brought Taylor his fish. It is huge. It looks like it weighs more than 5 pounds. He is so excited about it. He is very anxious to get it hung up. He is mad that Jim wants to be sure and get a sturdy nail to put it on and we don't have one. We will most certainly be getting that soon. He has picked his spot to hang it. It is a stupid spot, but we told him wherever he wanted it. He has a book shelf in his room with his American Cancer Society award hanging over it. It is at least 11x13 and he wants to hang the fish above that. Goofball! Maybe he will change his mind this weekend when we get the right nail to hang it and start to do it.
Temp and I had dinner tonight. We needed some girl time. It was nice to get out and chit chat without the word "mama" in the background. Once I got home I put Taylor to bed and then I crashed too. It has been a long, strange day. Please pray that we all get through these rough days. Pray that Taylor is NED forever. Pray for all our cancer friends both young and old.
August 9, 2005 Day +860 Day #558 off treatment
Hello there. We had a long day. We started it with a 9:00 appointment at clinic. Taylor begged to take his Darth Vader mask. He wore it into the hospital and everyone we past thought that was funny.Taylor tt'ed in the cup right off the bat. He had to go in the car and I told him to hold on to it (he did literally) so he could put it in the cup. We then made out way to the lab. It has been a long time since we went to the lab for labs to be drawn from his arm and it was not pretty. He was going nuts just with her trying to take the tegaderm off his arm. I just grabbed it and ripped it off and he was fine. Fine for a second, she stuck the needle in with no problem, he didn't even flinch. However, she did not get it into the vein and she had to dig around and went crazy. I know how that feels and I felt so bad for him as did she. It didn't take her long to get it right and she was done. We were on our way back to clinic. We played with a peg board game for a while then we went to do some art. Taylor made a door hanger that said his name in puzzle pieces. It was cute. We went back to the room in no time it seemed like. Taylor had a lovely fit back there over some cheese it crackers. I am sure the staff loved that. They have never seen him have a fit. He finally calmed down. We heard Dr. Berkow ask for his labs, so we knew he was coming in and Taylor grabbed his Darth Vador mask and put it on. He was standing there with it on when Dr. B came in and he made it say "you don't know the power of the dark side". Dr. B was so tickled. It was funny. The really funny part was when Dr. B put it on and made it make that heavy breathing sound and he went out to show the nurses. It was so funny. Taylor was belly laughing! We got serious then and went into the room and had Taylor's exam. His labs look great!!! His urine from June were great. I never even thought to call and get the results, so that was a good tid bit to get. We took more today, so maybe I will remember to ask about them next week. He had a good exam. His lungs sounded coarse with a small trace of a wheeze every now and then. He said all the junk we can hear gurgling in him is not in his lungs. I am so glad as I have been worried about that. Taylor weighed 36.5 pounds so he is a little heavier. He was 39.5 inches tall. The average for 4 year old boys was 39-41, so it was nice to hear he is in the normal range even if it is the bottom of it. Dr. B and I compromised and settled on scanning in 4 months rather than 3, we will work slowly out. We will do a CT and a bone scan. The bone scan is like the MIBG, but it is not as detailed at an MIBG. He will be injected with the dye a few hours before the scan rather than a day in advance. The bone scan is what diagnosed him, so I am comfortable with that scan. We will not do marrows unless we see labs that look off kilter. He will scan on Oct. 11th. The day after the 3 year anniversary of his dx. He was dx on Oct. 10th 2002. That is eerie but when we get those wonderful results it will just add to the celebration we will have to be 3 years away from that awful 2002 day. It also will allow us not to scan at Christmas time like we have the last 2 years, that is very stressful.
We left the hospital at 11:00 and headed to IHOP to eat with Guh. Taylor ordered 5 silver dollar pancakes, but they sent regular sized one and he ate 3 of them! No wonder he gained weight! After lunch we went to Mary's so he could play with "Blue and Drake" that is what comes out when he tries to say "Drew and Blake". We left there to go to Children's South for his re-check from the sinus surgery. That was a waste of time. We waited an hour and a half to have him stick a flash light up Taylor's nose and say it looked good. He was not overly impressed with the blood that he has coming out his nose and the fact that he took a antibiotic last week for a sinus infection. He said we could come back in 3 or 4 months if we are still seeing snot. I am leaning towards dr. LaRussa right now as he really seems to be wanting to get to the bottom of this snot issue. However, it is good to know that Dr. Hill just may still have a few tricks up his sleeves.
We stopped to pick up Logan who had a 2 and a half hour nap today. Little ----! He never does that at home. He was so happy to see me. That was fun, he just latched on. I loaded up Logan and Taylor was going to stay with Paw Paw for a while, but changed his mind. I think he is also a little attached to me. Me being his teacher will either make that worse or he will be begging to get away from me when he can.
We came home and cooked some dinner. Yes, cooked. Okay, so I warmed up BBQ meat and fried some french fries. The boys had a bath and now we are just sitting around. Logan has had several yucky diapers. He had never been bothered by Augmenton, but it looks as though he will this time. He didn't eat any dinner, but maybe he will get around to that as he feels better.
Please join us in thanking God for the wonderful visit we had. Pray that he is NED forever. Pray for Logan to feel better soon. Pray for all the kids and adults fighting their own fight.
August 8, 2005 Day +859 Day #557 off treatment
Here we are back at Monday. Taylor begged to go to school, so I dropped him off before the doctor. Logan and I were on our way for a long wait at the pediatricians office. We were there nearly an hour before the Dr. came in. He was so funny. He was screaming and I told him he was too loud and he started pretending like you would do if you were telling a story. His mouth was wide open, he had his legs bent and was leaning forward like he was really yelling, but very little sound was coming out. He had the paper on the table ripped to shreds, but he was quiet and still. Finally, Dr. P came in and looked him over. He did not test positive for strep, but he has gunk coming out of all orphases and his throat is red. He has drainage in the right ear, but the left ear tube is not working and it has fluid on the eardrum. He started him on Augmenton and Floxin drops. Hopefully, he will feel better soon. He weighed in at 25 pounds, but I don't think it is accurate. Today they weighed him fully clothed on the stand up scale rather than naked on the baby scale. I weighed him at home and it was 22.5 which is more likely the true weight.
We came home and let Logan nap and Taylor cleaned his room. We went to eat with Paw Paw. Logan was very good, but he didn't eat much at all. We came home and gave the boys baths and put Logan to bed. Taylor fell asleep in the living room chair. He is getting to heavy to move when he falls asleep. He is growing like a weed. I can't wait to see how much he weighs. Several people have commented on how full his face is getting and the black circles under his eyes are gone. We shall see how big he is in clinic tomorrow.
Please pray that Logan is feeling better soon. Pray that Taylor is NED forever. Pray for all the kids and adults who are fighting some sort of illness or injury.
August 7, 2005 Day +858 Day #556 off treatment
Happy 6th Anniversary Kim and Jim!
Six glorious years of marriage for the 2 of us. We have no special plans that I know of. In fact the big boys are at the hunting club. Logan and I are hanging out until time to go to a wedding shower. We didn't go to church since he is so yuck, I thought it best that he stay out of the other kids faces just in case he has some cold and not the allergies that I assume to be the cause. Anyway, we are going to make a Wal-mart run for wrapping paper. I bought 2 identical gift and rolls of paper and this roll is not long enough to wrap the gift. To say the least I was aggravated last night as I tried to wrap it. Oh well, we will try again. I have to go to the grocery store, but that will have to be when Jim gets home as I refuse to take Logan on a long public outing.
Change in plans. Gammaw called and she was out, so she picked up some wrapping paper and brought it to me. Thanks Gam maw. We went to the party where Logan was an angel. He does not feel well, but I am sure he would have been good anyway:) He did enjoy the punch, A LOT! He had several cups of the lime flavored punch. We had to take some out in his sippy cup. The boys got back in town as were were leaving, so we met them for some dinner. We all went home and then mommy did some grocery shopping. I took my time and went up every aisle Wal-mart had!
Once I got home and settled, I was holding Logan who ended up with a 101.4 fever. I called Joy and let her know, pumped him full of Tylenol and we will head to the Dr. tomorrow. He looks awful. His little eyes are black and just snot and gunk pouring out of his eyes, ears and nose. Does that make me nervous?? Yes! I know he has an infection, but those black, sunken eyes look so very much like Taylor's did when he was sick that it breaks my heart to see it. I wonder if Taylor didn't have a touch of something last week when he has fever and the meds Dr. LaRussa put him on just wiped it out before it got bad? Probably so and now Logan has it. Poor Logan.
Well, that is it for today. It is actually 4AM and I can not sleep. It may be that Taylor fell asleep in our bed and he is a bit of a bed hog. I have started taking some sinus meds myself, so we may all have the crud before long. Oh well, I am going to go move him and try to sleep. Please pray for Taylor and for him to be NED forever. Pray that Logan has a simple cold that is easily taken care of. Pray for all our friends who are at different stages of the game.
August 6, 2005 Day +857 Day #555 off treatment
Happy Friday turned into Horrible Friday. We left to go to the mall after Logan's 2 hour nap. We got there and Taylor wanted ice cream, but Chick Fil A was getting a new machine and couldn't sell any at that time. He settled for chicken instead, but he was mad. We went to the pretzel place for me and Logan and that is where Logan started his crap. He kept throwing baby in the floor. I quit giving it back and every time someone walking by would give it back to him. We went on to JC Penny and got some school clothes for Taylor who is growing like a weed. Logan got madder and madder as time went on. He threw baby out 900 times. I finally looped it through the seat belt of the stroller. Well, that really ticked him off and he was going insane. We went to pay and the lady got rude and I got "ruder". It was when she told me that if I would take him out of the stroller that he would stop crying that I lost it. If I wanted him out he would be out. How in the world was I going to carry him and push Taylor in a double stroller? I had to go to the opposite end of the mall to get to the car. We headed back through the mall, I have never noticed just how LOOOOOONG the Galleria is! We finally made it to Sears after all the staring and quaking from folks all through the mall. I know that none of their kids have ever had a fit, only my little angels do that in public! I rounded the corner to head to the elevator and there stood Donda whom I just fell into crying. I had had it past my head and could take no more. We stood and talked for a while. Logan calmed down and we headed back to the car.
Both boys fell asleep on the way home. Taylor woke up when we got there and played, but Logan to his room and slept a good 2 hours again. We met the family for Jim's birthday dinner. We talked Gam maw and Paw Paw into taking the kids and Jim and I went to the movies. We went to see Wedding Crashers. Oh my, it was sooo funny. I had tears in my eyes it was so funny, but it is certainly an adults only movie. We didn't get home until after midnight and we crashed.
Saturday started at 5:30 with Logan screaming. He finally got up at about 8:00 and was unruly. I swear, I just do not know what to do with him. He is only 19 months old, how will the terrible 2's be? Gam maw came and got me and we went shopping and then met the guys for lunch. We then headed to Taylor's friend, Josh's birthday party. We we went to Jumpin' Jax where Taylor had a blast. Logan had no fear this time and was all over the place. Jim finally took him for a drive so he could nap. They came back in the middle of the cake and ice cream. It was obvious at that point that Logan did not feel good. He has green goop in his eyes and nose and has fluid coming out of his ears. We loaded him up with Benadryl and ear drops and he seems to be a little better already.
We all we so tired after the day that when we got home at 7:30 we were beat. The boys took a bath and then Logan was gone to bed. Taylor had been real grumpy and acting strange, but after his bath he seemed to feel much better. He and Jim played memory where Taylor won several times fair and square, no help from dad.
Please pray for Taylor's continued success against NB. Pray for NED forever. Pray for Logan to feel better soon. Pray for my sanity in raising him:) Remember when Taylor was in stem cell and I used to post his counts and my patient levels, well, at this point I am in the negative numbers with Logan. I know that God knows what he is doing as we would all be in the crazy house if Logan had been the one that had to go through treatment.
August 5, 2005 Day +856 Day #554 off treatment
Happy Friday! I am so glad it is Friday. We have a busy weekend planned again. We have a Jumpin Jax birthday party to go to and I have a wedding shower.
Taylor woke up happy even after realizing that Jim didn't wake him up to watch him leave. He is playing with all his pillows and blankets, pretending to be camping out. He is yelling at his brother just like always, so I guess he is fine. He still doesn't want to go with Paw Paw, but he wants me to take him to the galleria and to the park. HMMM....why me! I guess we will go to the mall, but I don't know about the park. We will see...
Taylor ate a great breakfast and Logan did fair. Logan is already on my nerves. He did his usual 5:30 wake up screaming game. We ignored him best we could. That has to stop. He was laughing and playing in his room. I went to see what was going on as that usually is the sound when he is pulling out all his pj's and socks and throwing them all over the floor. Not this time, this time he was taking clean diapers out of the diaper stacker and pushing them down into the diaper pail full of dirty diapers. UUGH!!!! This child is going to drive me to drink!
Well, we will update again later. I just wanted to catch you all up and let you know we are fine. Please pray for the Evans family as they deal with Uncle Bud's passing. Pray for Taylor and his complete healing. Pray for all the cancer families out there.
August 4, 2005 Day +855 Day #553 off treatment
Happy Birthday Jim!!!
Today was another school day. It was a loud and wild day. The kids know that summer break is winding down and they are getting new teachers. After school we rushed out to go to Nana's and keep her kids. She has a new baby, a little baby and she stressed me out. I like big kids that can tell you what they want. It was fun playing with a tiny, baby girl, but I was happy to see Nana come in the door. I had all intentions of getting Logan's hair cut, but he was asleep before we got to Angel Hair and it is only about 5 minutes away from Nana's. He even stayed asleep for another 40 minutes or so after we got home. However, it did not help his mood when he woke up. He was a total butt all night long. He is really getting out of control and I don't know what to do with him.
We met Daddy at Gam maw's and they guys stayed there while us girls went to a sorority kitchen shower. It was great to be with adults who didn't whine and scream all night:) We had fun and it was after 9:00 when we headed back to Gam maw's house. We stayed there to play a few minutes before heading out. Logan went right to bed once we got home and Taylor stayed up to look at his Highlights book. I got up to do something and he laid over in the chair and was asleep in a few seconds, literally.
He is acting a little odd. He doesn't want to go anywhere. He wants to stay home with me and just lay around. He past on a trip to climb the rock wall at Dick's. I, of course, read to much into it and get worried, but maybe he just wants to rest.
August 3, 2005 Day +854 Day #552 off treatment
We went back to school today. Taylor had no more fever, so that is good. We were supposed to get a filling in his one tooth left uncapped, but that got cancelled. It could have gotten ugly. I was ready to go this morning around 8:20 and Taylor was begging to finish watching Dragon Tales, so we did. Thank goodness. At about 8:25 Children's Hospital dental clinic called to tell me that Dr. Thomas was out and needed to reschedule. If we had left and not got that call and I had left work early to go to the dental clinic, oh how ugly it would have been! We now have it rescheduled for Sept. 7th. I was worried about letting him go that long, but she said he would be fine. I can also call back and work him in as an emergency case if he complains. He hasn't mentioned it, so I guess he will be okay.
We went to Gam maw's house and Taylor and Daddy swam. Logan and I went for a walk and visited Jimbo and Joy and Pippy. Please remember Jimbo's family, uncle Bud, as he was know, past away Tuesday night. Pray for the family as they deal with this loss.
Pray that Taylor has beaten NB for good. Pray that Logan never had to deal with such as Taylor has. Pray for all out cancer buddies out there no matter what stage of the fight they are in.
August 2, 2005 Day +853 Day #551 off treatment
You will not believe this update! Taylor went to see Dr. Larussa, the asthma and allergy specialist. He was super nice as was his nurse practitioner who used to work in the oncology clinic and knows a lot of our favorite staff members over there. Taylor had a bunch of scratch tests done all down his back. He did real good until the last few and he got upset. Guess what he was allergic to? Nothing! Can you believe that. We have no idea what is causing all the snot. I am glad we will not have to put him through allergy shots, but gosh, I was hoping to find an answer. He did give him the breath test or whatever it is called for his asthma. He said most 4 year olds couldn't do it, but of course Mr. Taylor stepped up to the plate and did it perfectly. Dr. Larussa added a antibiotic and prednisone to the mix of meds he takes, but just for 5 days. We will see if we can't clear up the crud he has now and see what we can figure out. We will go back in 2 weeks to see him again.
The Dr. also gave us a new cup for the nebulizer. He said that the Xopenex needed something different from the cup that the Pulmicort goes in. Maybe that is half the problem, he has taken that med since he was 9 months old and no one ever said we needed a different cup for it. Hmmm.... I don't think he will need the allergy shots, but I think we will be seeing him for asthma. He seems to really want to fix it, not that everyone else doesn't want to fix it. He just specializes in this area.
Taylor has had no more fever and I hope it stays that way. I hate fever!! I hope starting back on the meds and adding the zntibiotic will help. He thinks he may have a, get this, sinus infection. UURGH!!
After the doctor we went to the RX and then to Nana's where we hung out until time to meet daddy at the mall. Taylor chose that as his treat for being such a trooper for that yucky test. Thankfully they didn't have to do the big sticks on him or more scratches than they did. We met Gam maw and Paw Paw too and had dinner. The boys took a trip to the Disney store and got some Power Ranger stuff. They had shoes, but not in his size, figures huh!
We are finally home and we are just sitting around. Logan is in bed, he has not had a nap today and he is very tired. Taylor is in a real bad mood. I know he doesn't feel good, but uurgh! He has complained of his legs hurting and going sideways like an old man. I have no idea what that is supposed to mean, but I think he is crazy. He said he couldn't run at school tomorrow because he would go sideways. I finally told him that he can tell me if he hurts, but if it doesn't really hurt then he doesn't need to talk about it. I hate when I can't tell if he really is hurting or just pouting. He is playing in the floor right now, so I think he is okay. I gave him his meds for the first time since Thursday, so maybe he will feel better soon. He took the oral meds great, I didn't even think about telling him he could take pills, but that is okay. He took the prednisone fine, but about puked on the cherry flavored Zithromax. Strange!
Please pray that we can get to the bottom of this snot. Pray that this fever is nothing. Pray that the "sideways leg" thing is nothing. Pray for him to be NED forever.
I guess that feeling wasn't for nothing. Taylor woke up with a 100.8 fever. I do not really know what to do since he has no port we don't have to call clinic, but that is what makes me comfortable. I am still assuming it is due to no meds for so long. He is snotty and it is thick and green. He also have very bad watery eyes. He has complained about the water in his eyes. I didn't give him anything for fear of it interfering with the tests this afternoon. It has not gone any higher or lower, so we shall see what becomes of it. I hope they do not say they can't test with fever since the fever is probable due to what he needs to fix. UURGH, it is always something to complicate things and put your mind in worry mode. I swear, I hate this stupid disease!! We are so very blessed by how great Taylor has and is doing, but it still a never ending fear that we live with and I guess we always will.
We are getting ready to go, so I better get off this computer. I will update as soon as I get home with any news we got on the testing. I am a nervous wreck about it. I told Taylor he could have a prize when it was over because it would be a hard test, but I did not tell him what would happen. I hate to not tell him, but I know he will refuse to go in if we tell him too much. Pray for us! More later.....
August 1, 2005 Day +852 Day #550 off treatment
Another normal day. We went to school and then came home and played. Logan does not feel good. He is snotty and yucky. I think he just picked up a cold from school, it seems to be going around. Guh came over after work. We went to Wal-mart and did some shopping. We also had to do some shoe shopping. Taylor wants some Power Ranger shoes and we can not find any. We went to Goody's to look at their shoes and then went to the boys clothes just to look. They had a 3 piece Power Ranger jump suit that we got for this winter. It was on sale, so when she rang it up and then had an odd look I thought maybe it was in sale for more than she thought. Boy was I wrong. Take a guess at how much that thing rung up, $999.99. No way, we don't want that! It turned out that the 3 piece outfit had more than one tag, but the ones that were not to be scanned came up that crazy amount. We got it taken care of and were on our way.
Taylor doesn't seem to feel real good. He didn't do anything specific to make me feel that way, but I have this odd feeling the pit of my stomach. Who knows why. I guess it is just due to him not having had any meds since Thursday. He had to stop all antihistamines for tomorrows allergy tests. He is starting to get snotty and congested.
Please pray for Taylor to be NED forever and for my worries to be nothing. Pray for tomorrows testing to show what is causing the problems and that they can be fixed. Pray for him to handle the pokes. Pray for the Scott family. Today is the one year anniversary of Alex's passing. You can stop by to visit them at www.caringbridge.org/page/alexscott
Back To Top
July 31, 2005 Day +851 Day #549 off treatment
Another busy day. We slept as late as possible. It was about 9:15 when I rolled out of bed. Logan was asleep, but he had gone back to bed after being up and screaming at 7:00. I just went ahead and got ready for the Wiggles. We have missed the early service at church and wouldn't have time after the late service, so we played hooky today. We went for some lunch and then headed to the civic center. We had to get a worker to make the people in our seats move. He didn't believe us when we said he was in out seats. Oh well, she told him to move and he did. The tickets were a little confusing, but he was rather rude about it. Logan was scared to death when they turned the lights down and it got loud. He stood up briefly and bounced then he just stared at the stage. I picked him back up and he was asleep in a minute. He slept the entire time. Taylor sat rather quiet at first, but he was soon up and dancing. He loved screaming "wake up Jeff". He really enjoyed it. We saw some people we knew. Logan missed his future wife since he was asleep, but she had a great time. Olivia is his women, he kisses her right on the mouth several times a day, so they must marry:) They are so funny!
After the show we went to Gam maw's and Paw Paws and went to dinner. They had called early today and invited us. We also got to see Pippy. Taylor had him cracked up when he made his fish face. He puts his hands by his face and flaps them back and forth while opening and closing his mouth. It was so funny. I am not sure where he learned that, we have never showed him. It was funny because we were just talking and he all of a sudden says watch this and starts making this face. Too funny! Taylor's fish is mounted and being painted, he should have it next week. He forgets about it, so he has not been driving us crazy about getting it. He is excited now that we talked about it.
We had a great weekend. I love and hate these kinds of weekends. We had a blast doing all the fun stuff we did, but now that it is Sunday night it feels like we didn't get a weekend since we were on the go so much. I guess that is just my brain denying that work is quickly approaching.
Well, that about does it for the Watts' this weekend. We had a super time and we hope you did too. Please continue to pray for Taylor's complete healing against NB. Pray for all the kids out there fighting.
July 30, 2005 Day +850 Day #548 off treatment
Party day. Oh, and by the way, Logan did not sleep late. He went with Jim and Paw Paw to the dump. I don't think he was as thrilled as Taylor usually is. Taylor also doesn't know that he missed the trip. Guh brought Taylor home and Jim and Paw Paw picked him up and they went to some sporting good stores and did guy stuff while we did girl stuff. All of us ladies had a good time gossiping and buying candles. After the party Guh and I went to get manicures and pedicures. It took forever, but as usual, was worth the wait. We then went to visit Mr. Jimbo as Taylor calls him. He acted shy, but we were no there long enough form him to get riled up. Guh dropped us back off at Gam maw's and we sat there to wait on Logan to wake up. It was getting late, but he had been so grumpy with no nap that we let him go. He finally got up and we took a quick trip to Hoover for something Jim needed to get and then we headed home.
Logan went right to bed. He was tired even after a long and late nap. Taylor stayed up a little while longer, but he too was soon fast asleep. Jim and I were watching TV until I could no longer hold my head up and I climbed in bed. I have no idea when he came to bed. I was out like a light.
It was a busy yet fun day. I enjoyed me "no kids" day. I miss them, but my goodness it was quiet with them gone:)
We got some cool mail today. Charter cable sent some t-shirts and hats as well as pictures of Taylor with Miss America and a copy of his commercial. It did not give a date that it would start coming on, but it said soon. Watch for it. You can't tell that he was picking his nose or his butt:) However, he also never looks at the camera. It is a close up of Diedre to start with and then she sits with the kids and it moves out so you can see them. They were supposed to look at her while she talked then look at the camera when she sat down. He didn't do that, he looked at her the whole time, so all you see is the back of his head. Oh well!
July 29, 2005 Day +849 Day #547 off treatment
Today was a stay at home day. I cleaned up and got things ready for the party tomorrow. When Logan woke up from his nap we went to run a few errands. I didn't get much done. Logan was awful. He threw a bottle of shampoo out of the buggy and that is when I left Wal-mart with out all I needed. We met Guh at Don-Don's. The boys played a few minutes in the outdoor play area and then we went to eat. It began to poor rain while we ate, so they didn't get to get back in. They were ill as hornets too. We went to the store to get some food for the party. Thank goodness the lady at the bakery gave the boys cookies and they were quiet, however, she gave them to them as we were heading to the check out line and we had already shopped with them going crazy.
Taylor went to spend the night with Guh. That didn't go over to well with Logan, but he fell asleep on the way home, so it was okay. Once we got home we just hung out until time to go eat with Chris, Temp. and Christian. We went to Wings then the guys headed home while we went shopping. We went to Wal-mart to get what I didn't get earlier today. Of course we got much more than what we actually went for. I have a special prayer request tonight. Temperance's grandfather had a massive stroke a week ago. He is not fully alert and it will take at least 6 weeks to know if he will be paralyzed or have any other problems from this episode. Please pray for him to recover from this. Please pray for the family as they struggle as they wait. We know just how hard it is to wait.
We all went to bed late. Temp and I didn't get home until 11:00 and Logan was still up. I wonder if he will sleep late tomorrow?
Please pray for Taylor and his continued remission. Pray for all those who are battling some illness or injury. Pray for Mr. Fisher and family.
July 28, 2005 Day +848 Day #546 off treatment
Another school day. It was an easy day. I had Taylor's class. I took some pictures of him playing just to have. I am the only one who gets to see him at school and I thought others might like to see what he does all day. We came straight home. Logan was out like a light before I even got out of the parking lot. He had his foot run over by the door. He is fine, but he was upset and worn out. He is sound asleep. Taylor is playing and watching Where the Red Fern grows.
We have no plans today. We have to clean up for the candle party this weekend. We are going shopping tomorrow for some more gifts, we are party folks this month.
Our youth director at church gave me a great surprise today. They raised nearly $100 dollars for Taylor's fund and sold bracelets. Thank you so much to Monica and her entire youth group and everyone else who helped them out. You do not know how much we appreciate it. You have helped many people by doing this.
September is Childhood cancer awareness month, so you will be hearing a lot more about upcoming events. Such as this one. The Talent Search 2005 has chosen Camp Smile-A-Mile as the charity to receive the proceeds this year. The Finals will be judged by professional talent scouts from MGM Studios & Walt Disney World. The Finals will be held on Saturday, August 20 at the Bama Theatre in Tuscaloosa.For those interested there will be auditions for the Finals and the auditions are open and we know that there is a lot of talent in the Camp Smile-A-Mile family so if anyone is interested you can audition. For more info you can call 205-349-0435, 205-343-2221, or 205-792-1795. Audition times: Saturday, August 6. Auditions will be held at the Belk Center at Bowers Park at 1 p.m. Thursday, August 11. Auditions will be held at the Belk Center at Bowers Park at 6 p.m. Friday, August 12. Auditions will be held at the Belk Center at Bowers Park at 6 p.m. Saturday, August 13. Auditions will be held at the Belk Center at Bowers Park at 1 p.m. Simply come for a fun filled night of Talent. The box office will open at 2 p.m. on Saturday, August 20 and the finals begin at 6 p.m. Please come or tell your friends about itóthe more people that come, the more money will be raised for Camp Smile-A-Mile. They have had sold out crowds for the last few years and the event is in its 19th year so letís keep the tradition going.
I have signed up to help work at the auditions. I have never done anything like that, but I want to help raise money for camp. I hope to see some of our talented friends and family at the auditions.
Please pray for Taylor to be NED forever. Pray for all the kids out there still fighting the fight. Pray for those who are missing a loved one. Pray that a cure be found soon!
July 27, 2005 Day +847 Day #545 off treatment
Today was like any other. We went to school and then home. I did talk to Dr. Kushner from NYC. He did get Taylor's bone marrow samples and based on their highly sensitive testing, there is no evidence of disease. Yahoo!! Memorial Sloan Kettering does the testing a little different than Children's so it is awesome to hear that it is clear. To the best of my knowledge that is the last bone marrows we will do. That is amazing and scary all at the same time. We will meet with Dr. B on August 9th to go over everything as far scans here on out. I also mailed out the money to Alex's lemonade stand. Thanks to all of you who have helped us raise money for our favorite places.
It started to rain right about the time we left. We drove through some awful weather. Of course Taylor chose that time to want to carry on a conversation. I couldn't hear him from all the rain hitting the window and he was getting so mad. He ended up falling asleep and woke up when it was time to go inside.
The kids had so much fun at Chuck E Cheese. Logan was all over the place. He was having a ball. He is that annoying kid that goes all over taking peoples tickets that were hanging out of the machines. Taylor got 200 tickets and we left with a slinky and a rubber airplane. That was over $10 in tokens it took to buy that little prize. That is alright, he had fun. He loved being there with all his friends. He even got up and danced and acted silly on the stage. It was a lot of fun, but it will be a while before we go back:) Chuck E Cheese is a kids dream and a parents worse nightmare. My mom is going to have a reply to that, I just know it!
July 26, 2005 Day +846 Day #544 off treatment
Today has held no excitement other than Taylor falling off the bed. I was trying to talk on the phone and couldn't hear for all the noise he made jumping on the bed and trying to find out who it was I was talking to. I told him to go out of my room and he fell off the bed. He was okay, so I just pushed him on out the door and went on with the insurance guy. Taylor was mad because his night night was in my room and in his commotion over that he woke up Logan who is now screaming to get up. It never ends.
We have just hung out so far today. We have to go to Wal-mart and get a birthday gift. Taylor has a party to go to tomorrow night. He is so excited he about to pop. It is at Chuck E Cheese. I think he is just as excited to go buy the gift as to get to the party. I have to get some goodies for the candle party I am having this weekend. If you received an invitation, don't forget to be there! If you didn't get one and want to come feel free to join us at 11:00 Saturday morning.
We did our Wal-mart run and Taylor had the hardest time picking a gift. He finally did it. We of course found many other things to buy. We also had dinner with Gam maw and Paw Paw and then the boys went to see Gam maw's sister and play for a while. Once they were home we watched TV and took a bath.
Taylor wrapped Griffin's gift. I was out of tape again and we used some handy dandy silk tape from the medical supply closet. We have tons of it that we would take after a nurse left it in the room. They were not allowed to reuse anything if he got left in a room, so it was free for the taking. Well, we also have some Disney tape that was rather expensive at the craft store. Taylor asked why we didn't use it and I said because it cost too much and I was saving it for the scrap book I will never make:) Well, in true Taylor style he told me "this stuff is 'spensive too" while holding up the silk tape. Yes, he is so right, it was expensive:)
Please pray for Taylor and his continued success against NB. Pray that he never again faces cancer. Pray for all the other cancer families out there. Pray for all those young and old that are fighting some sort of injury or illness.
July 25, 2005 Day +845 Day #543 off treatment
Today was a good day. We went to school where we played and had fun. I think Taylor was glad to see miss Christi. We came home and put a very cranky Logan to bed. He was mad because he wanted to bring toys home from school. He went right to bed and is still snoozing at nearly 3:00.
There is not much to report, so I will tell you our funny. Well, it isn't really funny, but it struck me as funny this morning. Keep in mind I am a cancer parent with 2 young kids so my humor is warped:) We have to pass by Rock Mtn. Baptist to get home. They always have a sign up that says some verse or phrase. It never fails that they put one up that suites my mood or need at that time. It is amazing how God can do that. Anyway, last weeks was perfect for me. It said "worry often makes a small problem have a huge shadow". Was God sending me a message or what? We have been working with Taylor on saying our instead of us and I instead of I and so on. He gets so mad and he will say "I don't want to say our". Well this weeks sign says, "he who hates correction is stupid". I laughed so hard this morning. Again, it isn't funny, but after arguing with him that what he wants to say is not correct all weekend and then reading that I just had to laugh. I think God has a good sense of humor!
We went to eat and then came home. The boys went outside for about 10 minutes, but it was just too hot to be out and it was nearly 7:00. Hopefully this heat wave will end soon.
Please pray that Taylor has been cured of this disease. Pray for all the cancer families out there. Pray for those who are still battling or missing a loved one. Pray that those who have reached remission to remain there. Pray for those who have not yet begun this journey, but soon will.
July 24, 2005 Day +844 Day #542 off treatment
Today in 2003 Taylor got his broviac line out and his port put in. I am so happy that 2 years later that he has no port. It is so amazing to look back and see what all he has endured and to see how far he has come.
Today started with a trip to the doctor for me. I hurt my right knee years ago and have somehow aggravated it. I do not recall hurting it, but my entire right leg is swollen and much bigger than the left. I had some x-rays and then the diagnosis. I tore the meniscus (sp) way back when and in return it has left me with no room for any other injury and therefore whatever I did to it recently just left me with fluid and swelling. All I can do is prop it up. He told me to take the week off, but I can't do that, so we will just have to take it easy at home. It doesn't really hurt, it is stiff and kind of hard to walk if I have sitting for a long time. I guess as long as there is no pain that is good.
After the Dr. I met everyone at Gam maw's for lunch and swimming. Taylor loves it, he can not get enough. Logan loves it too, but he has no fear which puts a lot of fear in the rest of us. He will just walk right down the stairs. We have to keep someone at the edge at all times to be ready to get him. He has a little pool of his own on the deck that he will play with for a while and he loves the hose pipe.
After a full day of playing we headed home. We have not done anything. I can hear Logan's room being destroyed as I type, but that's okay.
Please pray for Taylor complete healing and never again to have cancer in his body. Pray for all our friends who are fighting their on fight. Pray for those who are missing a loved one.
July 23, 2005 Day +843 Day #541 off treatment
What a long day we had. Taylor ended up not spending the night with Paw Paw, he came back home with us. I think he was just very tired. He had had a fun filled day an then had a pool party. Christian and Logan swam with him for a while then we all had some pizza. Anyway, I think he had just worn himself out and he tends to want to go home when he is real tired. I guess kids are like adults, they want their own beds when they are tired.
He got up early today and went to the huntin' club with Daddy, Paw Paw and uncle Dugan. They didn't get home until nearly 3:00. We had an adventure then. I cut Jim's hair, buzzed it rather and Taylor decided he wanted one. Jim cut his. It hasn't been that short since before Logan was born. He looks different. He loves it though. I don't hate the look, but it brings back memories that I just assume forget. If he likes it that way then so be it. He had no hair for so long that we always said he could do what he wanted with it once he had some. We may regret that in his teen years!
The real fun came when we tried to get out a huge splinter in his foot. The two of us could not do it, he was too strong for us to hold him down. He kept curling up his toes so that we couldn't get to the splinter. We just left it alone. He was so worn out that he climbed in the bed and took a little rest. He never did go to sleep, but he laid there a while then jumped in the shower with his daddy, so they could clean up for dinner.
Uncle Dugan lives 2 hours away and we had to take him half way to meet Anna so they could head home. We all went and had dinner in Jasper. The kids were a little un ruley as they were so tired, but it was a nice little road trip. We got back to Gam maw's around 9:00 and the splinter fun started again. Jim and Paw Paw held him down while I showed him a Oriental Trader book and Gam maw got the splinter. He was SOOOO MAD!!!! He was screaming "get off of me". It didn't take long to get it, but it felt like forever. He was mad for a while then he wanted to spend the night, but again opted to go home.
We came home and everyone crashed, it was about 10:00 and that is way past Logan's bed time and he was still awake. Taylor wasn't ready to go to bed, but he was asleep in no time.
Please pray that we can continue to have these happy days where splinters are our biggest issues. Pray that Taylor is NED forever. Pray for all our friends out there who are battling their own war with injury or illness.
July 22, 2005 Day +842 Day #540 off treatment
Well, today I must start this update with good and bad news. I will give the good news first. Our dear friends, the Barnes family, has welcomed their new bundle of Joy. Lyndon was born happy and healthy on Tuesday. Stop by and congratulate princess Morgan on being a new big sister. www.caringbridge.org/nc/morganbarnes Now for the bad news. Our friend Todd has earned his angel wings. Todd battled ALL for some time. We are going to miss him terribly as he was such a great young man. Please stop by and leave some words of support for the family. They have always been so supportive of us as we went through Taylor's treatment. www.caringbridge.org/al/todds
Taylor decided not to go to the movies. I am not sure why. He was about to put his shoes on and just said he didn't want to go. He keeps telling me that it was because he didn't want to see that movie. I have no idea if there is more to it or not. We went to get some fast food since daddy wouldn't be coming home for dinner. It was dry as a bone as we drove then boom it was pouring and then it was dry again less than a 1/2 mile away. Taylor thought it was amazing that it just stopped and started like that. I guess it has to somewhere, but you never think about actually seeing it. Pippy and Pop came over for a little while and got a piece of the chaos that we call home life. Taylor was pouting and being ugly. Logan was screaming just to hear himself scream. It is always a zoo around here. I can't image having mroe kids in the mix.
As for Friday morning, we were all up and at 'em too early. The boys had to watch daddy leave as usual. After that Taylor had this weeks breakfast trend, mini pancakes. He has been eating 6 of them and today we only had 3 left. He used a peace of bread to finish up the last of the syrup on his plate. He got to spend the day with Paw Paw. Taylor, Ghen Ghen and Paw Paw took in that movie he passed on yesterday. The pool is ready, so he will be in the pool as soon as he can I am sure. We are all meeting there tonight for a swim. Logan hasn't swam in a while, so he is due a little dip himself.
As for Logan and I we hung out for the morning hours and then Logan napped. I took that time to get myself cleaned up and some straightening done. When he woke up we took off for hair cuts. I was going to get his cut, but it took so long to do mine that I was sure he was not going to sit still any longer. I have to take Taylor back anyway, so we will get Logan done then too. It took so long for me because I was finally brave enough to say "I want a drastic change". She cut and cut and cut and about 45 minutes later I was drastically different. I love it, but will I be able to fix it this way?? Probably not, but it is so short that my natural curl should take care of itself. We shall see. I figured what does it matter if I don't like it, I pull it up in a pony tail every day anyway, so I might as well have some sort of style.
I will be sure to fill you in on Taylor's adventures when he tells me about them. I am sure he has been a goof ball today. That is about it for today. Please remember the Stevens family in your prayers. Please pray that Taylor has been cured of NB forever. Pray for all the kids and adults out there that are battling an ijnury or illness or some sort.
July 21, 2005 Day +841 Day #539 off treatment
Wow, I didn't even realize it had been almost a week since I update. I have been so caught up in normal life that I didn't even think about it. That's pretty cool! I am happy to report that Logan seems to not have been bothered by yesterday's grass adventures. Taylor is a wee bit more congested, but not really much more than he already was.
I had Taylor's class again today. He was pretty good, but I had a trip to the movies to dangle over his head if he acted up. He is not bad, just very wild and has an attitude. I just don't want him to act so whiney and ugly. They both pitched a huge fit in the store this morning. I stopped to get me something to eat for lunch today and they were just ugly. We don't go to the store often before school, but if we do they act ugly. We always get the same cashier and I know she thinks my kids are brats. Oh well!
We are now home doing nothing. Daddy has a business dinner tonight so it is just us. Taylor is going to see Charlie and the Chocolate Factory in a little bit. Logan is napping and I think I will go finish that book I was so into last night.
Please pray that I can continue to give you this ho-hum updates on our normal lives. Pray that Taylor is forever cured of this beast. Pray for all our friends who are still fighting or NED and want to stay that way. Pray for those who are missing a loved one.
July 20, 2005 Day +840 Day #538 off treatment
Well, happy hump day to you all. I can't believe how fast this summer has flown by. We went to school where we had 2 birthday parties. Taylor had no trouble eating both cup cakes. I did not have his class today and he told me he was glad Miss Christi was back. It was just an ordinary day.
After school we came home. Taylor had been telling me he was tired all afternoon basically because he didn't want to clean his room. I told him he could clean his room or take a nap, no toys. He asked me to lay with him in my bed. Well, I could never turn down that sweet face:) We snuggled up and he was gone in a few minutes. I guess he was sleepy. He woke up around 3:30 when Logan woke up screaming.
We all got up and played and watched cartoons until Jim got home. Jim was cutting grass and Taylor wanted to play in the slip and slide. Once Jim got the front yard cut we set it up only to find that it was busted where the water goes through and it wouldn't work. Oh, Taylor was mad and so were we since we had just taken it out of the box for the first time. We have had it for a while, but wouldn't let him do it, so we will see how it goes trying to return it. He pitched a royal fit for a while and finally joined Logan in the sprinkler. We have been gone so much and had so much rain that the grass was high. The bagger was getting to full, so Jim just took it off and let the stuff fly all over the place. Well, my kids decided to play in it. Logan was covered from head to toe in the grass. We will find out tomorrow if he is allergic to grass! I tried to keep Taylor out of it, but couldn't. He should sound great in the morning.
We stripped the boys naked and hosed them off. It was so funny watching them go up the front walk. Logan was waving his best Miss America wave as he strolled naked up the walk and Taylor is just goofy and was singing his now famous, Shake your groove thing. We got straight in the tub and cleaned off. I went ahead and did Taylor nasal irrigation in the tub so that I could get him good and not worry about getting the entire room wet. Hopefully, we washed out a good bit of an allergins in there and he wont have too much trouble.
We had some dinner and then put Logan to bed. He was gone in no time. Taylor stayed up to play and then decided he would watch a movie in his bed. I was hooked on a book and was up until I just couldn't focus on the words anymore and had to put it down. Of course then, I tossed and turned.
Please pray for Taylor's continued success against NB. Pray he is cured of the beast forever. Pray for Morgan as she awaits the rest of her results, so far everything looks great. Also, pray for them as they await the arrival of their new baby. Pray for one of my college friends, Lindsey, and her family as her dad deals with some heart troubles. Pray for all the families out there who are battling illness and injury.
July 19, 2005 Day +839 Day #537 off treatment
Today is a little more interesting than yesterday, but not much. We had plans to eat with Guh. Taylor had requested the Olive Garden, but Guh was thinking more like Sonic. I was telling him about our plans as we did laundry and he got all mad. He said he was not eating if we went to Sonic and would I please go call Guh. Yes, I know you can see where this is going. We ate at the Olive garden where both kids did fair. Logan ate all the tomatoes out of the salad.
We went back to Guh's house for a while. We played in the sand box and on riding toys for about an hour and then we went inside. Guh have me a foot massage. How great is that? I sell her a Mary Kay spa set and she uses it on me! Not a bad deal, huh! We left there just in time for the rain to start. We made several stops for Taylor's meds and then we met Gam maw, Paw Paw and Daddy fir dinner.
Logan was very ugly at dinner, but he did finally eat good. Taylor ate 2 grilled cheese sandwiches. Miss Christine gave both boys some M&M's for eating so good. Logan got mad in the car and spit them all out, so he was ushered straight to the tub. Gam maw did bath time tonight since they had to bring them home. They will not ride in my car if they see any other options available. Anyway, after Gam maw and Paw Paw were able to escape Logan went to bed and Taylor played.
I said it was slightly interesting, but it wasn't very much so at all. Anyway, we are ready for school tomorrow, so I better go get in the bed.
July 18, 2005 Day +838 Day #536 off treatment
Well, it is Monday again. That is the only bad thing about having such a fun weekend, it makes Monday very hard! We had school as usual. I had Taylor's class again. He was pretty good. I truly believe he is getting better at having me in there which is good seeing as in a few short weeks he will be in my class. He is still nice and snotty after a weekend full of outdoors, but he isn't bothered by it. We stayed home tonight and did nothing. We just watched TV and played Power Rangers and that is about it.
I don't think I have ever had an update that was that short and to the point, but guess what? We are just plain old, boring, normal folks with little to talk about. We will update you more on our boring lives tomorrow!
Please pray for Taylor's sinus/allergy issues to clear up soon. Pray he is NED forever. Pray for all of our friends who are battling some sort of illness or injury.
July 17, 2005 Day +837 Day #535 off treatment
We were all up and at em' by 7:30 this morning. We packed all our stuff back into the car and headed to, where else, the playground. We again, sat around and talked and watched the kids play. Soon we heard Miss Jennifer say "Hey Camper" which is the sign for us all to say "hey what" and listen to our instructions. We circled up and said the blessing. Taylor ate Apple Jacks until Copper came around and he fed them to him. He had already had a bowl, so it wasn't like he was giving away his breakfast. He thought it was so funny that Copper ate some of his food. He took his meds again and then went to the swings where his daddy was swinging him waaay to high for me to watch, but he was yahooing and yipeeing the entire time.
After a little more playing we went to take family photos and group photos. Then we did some painting. Taylor pained an egg that they will make into a Christmas ornament. We also painted a platter with his hands and thumbprints. They will make the thumb prints into monkeys. I can't wait to see it all finished. We went to play basket ball for a while before going to the beach and doing the closing ceremonies. We were able to present the money we raised at our Lemonade stand. Taylor actually gave Miss Lynn the check. Then we got a bag full of goodies. Taylor and I are too nosey to wait, so we had to dig through it and see what all was in it. As always, it was full of great stuff!
We had an absolutely wonderful time and we thank everyone at Camp SAM for all they do!!! It was time to go home. We were so tired and ready to go yet at the same time we could stay forever. We stopped for drinks about 15 minutes into the ride. Once Taylor got a few drinks in him of some good ole tea, he was out like a light. He is so full of green snot it is ridiculous! I feel so bad for him that he is always like this and even after all the surgery. I talked to one of the nurses who has used the allergy Dr. we are going to and from the sounds of it this test will be AWFUL!!! I certainly hope that we will be able to get some answers from this. I will terrible if I put him through all that poking and it not help.
We are now home. Well, actually Taylor isn't. He already had a date with Ghen Ghen planned and they are gone to see Fantastic 4. He has never fallen asleep in the movies, but today could be the day. We shall see.
Please pray for us to find the answer we need to help clear Taylor of all his sinus/allergy issues. Pray that he is NED forever. Pray that Logan never goes through anything like Taylor has. Pray for all our friends who have or still are battling an illness or injury.
July 16, 2005 Day +836 Day #534 off treatment
It is finally camp day! We left at 8:00 this morning. We had to drop Logan off with Guh and then we were on the way. We arrived around 10:00 and Taylor was ready to go. He was a little shy at first, but it didn't take long to get him in full swing. He had a guy councilor this year and I think he liked that. He took off to the new playground. There was tons of riding toys and balls out, but the swing area was the hot place to be. He was having a ball. We had a good time getting to know knew families and meet up with old faces again. Miss Nena and Ellie were there. As you may recall they are from Hand in Paw and Ellie helped Taylor wake up every day after his radiation therapy. He didn't seem to remember Ellie or walking her out of the comprehensive cancer center, but I guess that is a good thing.
Soon it was time for lunch and we all "circled up" and said the blessing and headed into the galley for hot dog and hamburgers. Taylor ate a lot of chips, but not much else. He was focused on one thing and that was getting to that pool. Once we got done we got all our bags and blankets in our bunks and then Taylor headed off to the pool and Jim and I headed off for the adult activities. Taylor and Ryan hit it off great and played the day away. Ryan was also a young cancer patient and has come back to give back to the kids that are battling the battle now. It is always nice to meet a survivor and see how well they are doing now. It gives great hope to see how far he has come in 20 something years and to think that in 20 years from now Taylor could be a councilor. Wouldn't that be cool! Anyway, they went to the pool where "no fear" Taylor jumped right in and was going down the slide and having a blast for nearly 3 hours when Ryan had to drag him out. They were going to go on a boat ride, but Taylor was upset about the life vest and changed his mind. They opted for basket ball and bikes.
While the boys did that Jim and I were in a cabin playing silly games with the other adults. We ran and jumped and acted like kids and it was so much fun. You can act like a bunch of goofballs with total strangers after all we have been through. There was another NB family there and we have known them for some time and it was nice to get together with them again. It was nice to put names to some faces we see in clinic. After all our playing we all got comfy and Miss Terry did a relaxation technique and put us all at ease and ready to hook back up with the kids.
We went up to the pool and sat and watched. Jim went to play ball with the guys and I dangled my feet in the water and talked with some nurses from the hospital. It was nice to see them out of the hospital and talk about everyday stuff and not meds and ports and lab results. Soon it was time for the sand castle contest. This is our families worst area. We never make a good castle. Well, this year we finally made a cool one. It had pine branches as palm trees and a boat dock. All the families win and we won a baseball and bat and a bag full of beach toys. Now it was time for dinner. After dinner the kids went to the playground and the parents chit chatted. Taylor wanted to fish now that he realized that he didn't do that earlier. He missed some of the story telling around the fire, but he caught the one that mattered. We went on a ghost hunt which is just the old "goin' on a bear hunt" song, but we went on a ghost hunt since we were around a camp fire at night. He loved it as did all the kids. After the story we got coat hanger and roasted marshmallows. I told him to go get a stick meaning from one of the girls with the unfolded coat hangers. Well, he was looking all over the ground looking for a real stick. He roasted a few just to do it, but he didn't eat them. He went to get some more and just ate them plane. I don't blame him, I don't like them roasted either.
After all that fun it was time to take a trip to the health hut and take his meds. They were so impressed that he could swallow a pill and drank his Triaminic from a medicine cup rather than a syringe. He is getting so big! He and daddy went up to their cabin that was air conditioned a little to well. Taylor was warm since he was under Jim, but Jim was cold. That is the cabin I slept in last year, so I knew it would be cold and packed flannel pajamas. This year I got put in a screened in cabin with no air and I thought, "great, this year I will sweat". However, that was not the case. It was actually very peaceful. It was comfortable at about 10:00 with no covers, but at some point I got out the blanket. It was so nice to hear the katydids and frogs and whatever else was singing outside. I slept like a rock.
July 15, 2005 Day +835 Day #533 off treatment
It is finally Friday and Taylor is so excited. He knows he is going to camp in the morning. He is so happy to swim again. They will have to drag him out of the pool! We are just hanging out today and packing for camp. We will drop Logan off with Guh in the morning and head to Alex city for a fun filled weekend. From the looks of the email we may be meeting some new friends. That is always fun.
We went to lunch with Gam maw and Paw Paw today. Other than that we hung out at home and packed for camp. The boys were good for the most part and we had a good day. It rained, again! It is getting hard to keep staying in the house. Taylor went to the last night of VBS. I stayed while he started eating and then he let me go. Logan was eating the weenie out of Taylor's hot dog while we waited on him to give us the go ahead to go. Taylor got to bring home a shirt and lots of crafts on the last night. We will miss the program they put on Sunday morning. I hate that we will miss that, but we will be having fellowship of our own with other cancer families. After VBS we went to eat with Chris, Temp and Christian and Gam maw and Paw Paw. After dinner the boys made a lot of noise as they ran and played all over the side walk. They had so much fun. If it would ever stop raining we could all get together for a day of outside playing.
I talked to the doctors office today. We have stopped the Zyrtec and started good ole OTC Triaminic cold/allergy to see if a change in ant-histamines will help him any. We will do that for a few days then go back to the Zyrtec. On July 29th we will stop all the anti-histamines so that they will be out of his system on his August 2nd appointment with the allergist. That should be fun!
Please pray that Taylor is NED forever. Pray that we can get to the bottom of all this snot business and fix it. Pray for all the cancer families out there that are fighting. Pray for all those who are fighting some sort of injury or illness. Pray for those who are missing a loved one tonight.
July 14, 2005 Day +834 Day #532 off treatment
I can't believe it is already Thursday again. Taylor woke up with a horrible cough and a snotty nose. I hate that! He went through that painful surgery and still has green snot. I have a call in to the pediatrician to see if we can go see the allergist now. We have been on a wait and see basis for a while now on that and I think it is time to go. I am self diagnosing again, but I think he is allergic to grass/hay. He went on a hay ride at VBS last night and wakes up snotty and coughing. He has been clear since the surgery. He has had a little snot here and there, but it was due to the irrigation of the nose. Anyway, hopefully we can see if he is truley allergic to something and maybe get some meds for that and help him out.
We had another good day at school. It was a hectic one with both classes, but we made it. Taylor was pretty good for me. We came home and put Logan to bed. He was very mad at me. One of the parents brought some puppies to try and give away and Logan wanted one. He would not late go of the crate they were in. He teacher took one home and he latched on to her. She had to come put him in the car. He was mad, but I do not want a dog! He got over it. They were all cracking up as he hung onto the crate yelling "eat". What other kid calls a dog an eat?
I dropped Taylor off at VBS where he busted my lip. He was reaching to give me a hug and he was excited and jumping up and down and hit me in the mouth with his head. It felt big and fat, but you know how it feels when you get hit like that. I really thought nothing of it and headed out to the car. I spoke to several people and got in and looked in the mirror and it really was all fat and bleeding. That was great, I looked like a nut walking around greeting folks. Oh well!
Well, that is all I've got for today. I never heard back from the Dr. I got a very important phone call and I am betting she called while I was on the phone. That is okay I will call back tomorrow. This weekend will be spent outside with Children's staff at Camp SAM and that should be a good indicator of his allergy issues. We shall see and you all know I will ask the question over dinner:)
Please pray for Taylor's continued success against NB. Pray for Morgan as she travels home and starts getting results from her scans. Pray they are all clean! Pray for our new friend, Hannah, who was recently dx with NBIV. She is gearing up for her stem cell transplant.
July 13, 2005 Day +833 Day #531 off treatment
It is time for me to come here and get a little adult time. It was obvious when I found myself gaping, mouth wide open at the TV as I watched Zach and Wheezy fly separately. They are no longer attached!
Taylor did great last night. You some people are just notoriously late no matter what, well we are not those people, we are the exact opposite. We are often driving in circles because we are early. That was the case last night. We got there early and Taylor didn't want me to leave. I had to stay until he was content with who all was there. Once he gave me the all clears to go, he let me go and went on about his business. He was sitting and watching a movie with his friends when we went in t get him. I was so glad that he is enjoying it. Maybe now he will go to Children's church. I am afraid we may mess that up. He is to have an end of VBS program at the 11:00 church service this week and then I thought he would go with the other kids, but we have Camp SAM this week and will miss church. I am afraid that one missed Sunday will be enough to get him out of the routine. Oh well! We will keep our fingers crossed. He does fine in church, he is quiet, but I hate that he misses out on fun. After VBS we had to make a trip to Best Buy. We stayed in the car while Jim ran in. There was a huge Collie in the parking lot and Logan calls dogs "eats". On the way home he was yelling "eat, eat" and I had no idea rather he wanted to see the dog or eat? He is so goofy!!
Today was an okay day. We went back to school after several days off. That is always hard. It was a good day for us at school. Miss Shannan came by for a visit. Taylor acted shy while she was there, but he was glad to see her. He had a dental appointment, so we headed to Children's Hospital after school. We saw Dr. Thomas today, I am assuming Dr. Fellers finished his residency and moved on. Taylor really liked Dr. Thomas, in fact they all commented on how well they took to one another. I had to stay in the waiting room and he went back with the Dr. and the hygienist. I had marked "no" to the question, will this patient be cooperative. The last time we were there it took 4 of us to hold him down to even look in his mouth much less clean his teeth. However, today he did great. They had brought down the wrong part of his chart and it had no dental history in it, so we had to go over all that again. When she came out to ask me some stuff she said he was being very big. He was brought back to me in about 10 minutes with a new tooth brush and a prize from the treasure box. As you all may or may not recall, he had all but his 2 bottom, back molars capped. In December he had a filling put in the right molar and today he has a cavity in his left molar, the only surface left in his entire mouth that could have had one. I call myself being very cautious in brushing them, but I guess I don't do it good enough. Maybe he is more susceptible? I have no idea, but again, this is a small problem in the big picture. Also, it is good that all caps were still intact and clean, not problems off food going under them and hurting his teeth or gums. I guess I am brushing pretty good after all. Last time he had a filling they did it right then. Today they couldn't, I assume the Dr. had to get back to class seeing as he is a resident, but I am not really sure. We had a hard time getting an appointment worked out and I ended up having to just take August 3 at 1:00. We will have to leave a little early from school and we will have to make another trip on 8/9 for clinic, but it is okay. We chose this day because Dr. Thomas would be the one to do it and we all felt that was important seeing how well he and Taylor got along. That is important for any patient, but a 4 year old really needs to feel comfortable.
We are all home and gearing up for the 3rd night of VBS. There is a surprise tonight and he is so excited, I think it is live animals, but don't tell! They have several things that they use during VBS and then the teacher takes them up and they will bring it all home on Friday. He obviously has some sort of key chain and he is very eager to take it home. Every day he asks if he gets to take it this time. I am dropping him off and swapping cars with Jim and heading out to meet Guh. Both boys got a bath already. They had to. Logan found a new trick. If you lick and animal cracker it will stick to your head. He did that several times. He had Taylor doing it too. Well, he was taking Taylor's off his head and eating them. Anyway, we needed a serious hair washing after all that. Anyway, I have been getting Taylor's surgical tape over his port site wet for a few days now, but it was to fall off by itself, so we don't pull it or rub it. Well, it fell off today when I rubbed the rag past it, yes, past it, not over it. It was ready to come off, but I think Taylor and I both would have preferred not seeing it fall off. Oh well, it is gone and we are done with it. He will get to swim at camp SAM this weekend. He is so excited, but I think he is more excited about the new play area.
Please continue to pray for Taylor and his continued success against this disease. Pray that it never again invades his body. Pray for Morgan who is scanning this week. Pray for all the friends that are experiencing progression and set backs right now. Pray for all those who are NED to stay that way. Pray for those who are missing a loved one right now.
July 12, 2005 Day +832 Day #530 off treatment
I hate to start today's update the same way as yesterday, but it is still raining! I am really getting tired of being cooped up and I know the kids are. There are miracles taking place in this house. Guess what time everyone got up today. I was up at 8:45 which is late around here, but I was ill as a hornet that I couldn't stay asleep since Logan didn't wake up until 10:15 and Taylor 10:40. Yes, you read Logan's time right. Can you believe it? I was worried about him especially when I got up and looked a the monitor and saw that his PJ pants were hanging over the rail of the crib and he had his arms out of his shirt with it around his neck. It had buttons on it and he couldn't get it off. I am telling ya'll this kids is crazy!
Once everyone got up we just played cars and the kids destroyed Logan's room again. Taylor wont let him in his room, but he has no trouble going in to Logan's room. It is much easier to clean Logan's room, so it is better this way anyway. Logan finally took a nap around 1:00 and Taylor and I played cowboys and Indians and cars. It is so funny how boys will play with those little plastic Indians for hours. Being a girl, I don't get these games, so he prefers daddy for that game.
Taylor cracked me up yesterday. He likes to sing "shake your groove thing, hey hey" and "shake your booty, hey, hey". Well, yesterday he was calling me to come help in in the bathroom and when I walked in he was bent over, butt straight up in the air shaking as he sang, "wipe my booty, wipe my booty, hey, hey". I was laughing so hard and he was shaking so much that we barely got the job done.
Taylor is ready for Bible school again tonight. He told me once he wanted me to leave him and then he wanted me to stay, so I am not sure how tonight will go. I will update on that tomorrow.
I am sure you all knew this next bit was coming sooner or later. I had to email the hospital to see if my worries over Dj and Taylor's lung issues were justified. Of course, all worries in the cancer world are justified, but I was assured that it was two totally different circumstances. Taylor has all clear scans and urines, he is not clinically ill (fever, vomiting etc.) he also had a follow up CT that was better. No neb treatment would have cleared up NB. So, that being said, I feel much better about Taylor situation. However, I ask you to pray for DJ. This is serious as it is rare for NB to go into the lungs. Pray that they are able to get a plan of action for this sweet family. Pray that he can be NED again soon. www.caringbridge.org/visit/dj Also, our little NYC friend, Christi, has had some progression. She was diagnosed about a month before Taylor and she has never been NED. This is not good news for her, but they are such a strong and optimistic group that I know they will handle it well. Please pray for them as well. www.christithomas.com Please continue to pray for Taylor and his success against NB. Pray he is NED forever. Pray that Logan never faces anything like what Taylor has. Pray for Morgan who is in NYC preparing to start scanning tomorrow.
July 11, 2005 Day +831 Day #529 off treatment
Still raining! I have had enough rain for the time being. The kids certainly have. Taylor wants to go outside and play so bad he can hardly stand it. Jim finished the timbers around the swing set last week and all we need now is the gravel and we can't get it done in all this rain. It is starting to upset Taylor. We are just hanging out on this rainy Monday. Taylor was a little upset that he didn't get to go to school, but he gets to go to Bible school tonight. He says he doesn't want to go, but I think he just doesn't understand that it is going to be at his church not somewhere else. I will stay if I have to, but I hope he will let me leave him. I do not mind staying, I just want him to get more comfortable with being left like that. He has to go to kindergarten in a year. We are just hanging out. Things are clean since we got it all done knowing we would be gone all day on Friday. We are all in pj's, piled up in the chair watching Lazy Town. That is always a fun way to spend the day.
I got so tickled at Logan this morning. I went to get him up and he was laying with his butt against the crib rail with his legs straight up. He couldn't get up because there was no where to put his legs. I was cracking up watching him flop around trying to get up. He finally managed to roll over and get up. It was funny! He pulled his chair out into the hall and was just sitting in the dark. Taylor looked up at him and said "that boy cracks me up". I just had to laugh because he cracks me up.
The boys are still very wild. They played very quietly in Logan's room for a long time, but it wasn't pleasant when I went to check on them. Just as yesterday, every toy was out. I got onto them and put them to bed. I felt bad, but my goodness, how many times do you have to get in trouble for the same thing before you stop? Now both re mad at me because I put baby and night night in the washer. Taylor is able to understand it now and it is okay, but Logan is freaking out. He has 3 babies and only one is the important one. He normally will deal with one of the others, but not today. Taylor has one that looks just like Logan's so I gave him that. He is not crying anymore, but he keeps looking at it funny. I don't know if he knows if he can tell that the words are still on this one as they are rubbed off on his or if it smells different or what, but I think he knows we pulled a fast one on him. Kids are too smart.
I have other news too. Our caringbridge friend, DJ, has had some bad news come from his latest scans. He has NB in his lungs and his trip to NYC has been postponed since he no longer has "minimal" disease. This is heartbreaking to hear of another NB friend having a set back. It is also scary as heck knowing that Taylor has had spots on his lungs and having the Dr's tell us the NB rarely goes to the lungs! I am confident that with the MIBG showing nothing in the last scans that his is indeed reactive airways, but it is still rather hard to process. Please pray for DJ and his family as they start the next treatment plan. Pray that this little man gets his miracle soon. You can check in on them at www.caringbridge.org/visit/dj
Taylor went to VBS. We talked at home about him being a big boy, but he cried anyway and I couldn't get him to stay in the Jim. That was after being so wild we had to take a trip to the bathroom to discuss behavior. Finally things started and he was in the gym with all the kids and we were able to sneak out. When we got back at 8:00 he was fine and other than being wild, he did fine. I am not sure if tomorrow will be easier or not. We shall see. He had fun. He wont tell me if he ate or not, he is so picky I am guessing that he didn't. He ate some chicken nuggets when he got home, so it doesn't really matter. I want to stay and see how things go, but at the same time he is so wild when I am there and it tends to escalate with me there rather than help. I also want him to know that I can not be with him all the time and to see that he can go to VBS and Children's church.
Please pray that Taylor only has reactive airway spots showing up on his scans and that it is not NB. Pray that he is NED forever and that he never again has to face cancer treatments. We are well aware that it could come back at anytime, but we pray to doesn't. We are also aware that he could have complications from treatment show up at anytime. So far he has been very fortunate with his only problem being his teeth and a very minimal amount of hearing loss. Please pray that this is the extent of his problems. He will probably never have kids of his own and will probably be shorter than average, but those too are small problems in the grand scheme of things. Pray for Morgan and her grandparents as they travel to NYC and scan. Pray for all our other CB friends and their families as they are all in a fight of some sort. Remember to pray for the safe homecoming of Randy, Andrea and baby Rylee.
July 10, 2005 Day +830 Day #528 off treatment
Well, it was a night full of staring at the ceiling again. I have no idea why I couldn't sleep since I was so tired, but it was not happening. I watched TV and stared at the wall. I finally fell asleep again around 4:00 and at 4:30 Taylor came out of his room like he had been beat. He was screaming and running. He thought Jim had left with out waking him up. That is really getting old. Once he saw he was in the bed he got back in his bed and I drifted back to sleep. He came back around 5:00 to tap me with his cold hands to tell me that he found his cup and to put it on my night stand. UURGH! Why do they pick the worst times to tell you something. I was able to go back to sleep, but I heard him playing. Logan then decided to get up around 6:45. I just ignored him until he threw his baby out and got real loud. I gave it back to him and shut all the doors. He cried a while and then fell back asleep. I got up at 9:15 and he was still asleep! I found Taylor asleep on the couch with cartoons playing. He is getting so big! We got ready for church in record time and headed out. Logan went right into the nursery today. He had a hard time last week after no school for several days and a few missed Sunday's at church. Taylor got wild again at Children's minute thought today all of them were rather wild. In fact, the man just went ahead and said the prayer rather than trying to hold their attention. I am a firm believer in the fact that weather effects them and today was proof. That fact has carried on throughout the day with our kids. Logan is crazy! He has just been screaming to him himself scream and Taylor joins in. They took every and I mean every toy out of both toy boxes and had them everywhere. I helped them get it picked up and 10 minutes later Logan came barreling down the hall with a huge ball racer toy that is as big as he is.
I am happy to report, though I am sure you don't want to know, that Taylor finally pooped on Thursday after 8 days! I finally had to give him some Senekot to help him out some. I also have been wiping his nose today as it has a little trickle of green. Oh no!! I hope this does not mean that his surgery did not help him. I hope it is just part of the healing process. It is not a lot, but he does sound a little congested and he has not been that way. He was also snoring when I found him asleep on the couch this morning. Isn't adenoid removal supposed to stop that? Who knows, this is why I am glad that the nurse thinks we do need to come on in for the post op visit.
We are just hanging out and watching to see what hurricane Dennis is going to do. I am so lost, one minute it is going to be bad and the next it isn't. I am hoping that all is okay. Taylor and I am off work tomorrow, so we don't have to worry about getting out in it.
That is about it for the Watts news. I do have some good news to share though. Our extended family, the Webbs, have welcomed a brand new baby girl, Rylee, into the world. See there was some sunshine on this gloomy day. We are so happy for them. They have all been sooooo wonderful to us as we went through our journey, I hope they all know we will do anything we can to help with the new baby. Although, like us, they will not be short on babysitters! Congrats to all of the Webbs!!
Please pray for Taylor's continues success. Pray for Morgan as she travels to NYC and scans on the 13th and 14th. Pray for all our other cancer friends. Pray for those who were hit by the hurricane.
July 9, 2005 Day +829 Day #527 off treatment
We slept as late as Mr. Logan would allow and that was only about 8:00. Taylor stayed with Gam maw and Paw Paw and he slept until 11:15. They are keeping the wrong kid:) We went to breakfast at Golden Corral, Taylor's favorite place pre cancer. We used to go there every Saturday and Taylor could eat his weight in eggs. He has not been since he was better and since he slept late, he missed it today too. Logan did his bubba proud. He ate some cereal, banana and a lot of bacon. We made a stop by Best Buy where Logan kept grabbing this guys butt. I think he thought it was Jim, but he did it several times in different areas of the store. Luckily, it turned out to be an old boss of mine when I worked at the grocery store and he thought it was funny.
We went home and put a sleepy Logan to bed, but he never slept. We went to get Taylor in the late afternoon. We stopped by Pippy's to tell him Happy Birthday!
We got home around 4:30 and I was ready for bed. Taylor and I went shopping and then we came home and sat around. Not too much to report for today. Jim cleaned out the garage and arranged the hard top so that we could get both cars in and out of Dennis' way. It was not a very exciting day, but as always, that is how we like it.
Please pray for Taylor and his continued success. Pray for the safety of those on the coast and for us as the storm comes inland. Pray for all our friends who are battling cancer and other illnesses. Pray for Morgan as she scans this week in NYC. Pray for her very pregnant mommy who will be staying in North Carolina. Pray for Morgan's continued success as well. I swear I think Taylor and Morgan will be married some day with a mighty powerful story to tell. They are 2 peas in a pod 100's of miles away from one another. www.caringbridge.org/nc/morganbarnes
July 8, 2005 Day +828 Day #526 off treatment
We had a busy day. Logan decided to get up at 4:45 this morning. He screamed until I got him up at 6:30. I had already gotten ready, made 4 gallons of lemonade and loaded the car. I left around 7:00 and headed to the Wynfrey. I was all set up by 8:00. I was by myself for a while until Taylor decided that he wanted to wake up and come to the mall. He had to make a stop first then he finally got there around 1:00. He did good, he played and colored for a while. Guh came back and sat with us for a while and daddy came on lunch. Gam maw and Paw Paw came too. Taylor started to get a little restless and loud around 4:00 and Paw Paw took him to ride the merry go round. His girl friend, Macey, came to play for a while too. They had a good time.
We got to eat with the Red Cross employees and Taylor was in hog heaven. They had brought in Olive Garden. The ladies eating with us got tickled at him eating salad and cheese. However, it was dry parmesan cheese from little packets, but he didn't care. When he ran out of lettuce he used his spoon to eat it. Yuck! They also had tons of Milo's tea, so he was set! He met a princess too. Mrs. America, Julie Love-Templeton was there. He got his picture made and told her that he knew a another princess too. She thought he was funny. He played a few games and one some prizes then we went back to man our stand.
It is kind of hard to sale lemonade when they are giving away coke and cookies right next to you, but we still made about $200. Not bad for sitting and people watching for a few hours. The day flew by. When we left they were calling donor number 400. Wow! What a great turn out. Please remember to always give blood even if it isn't a huge drive like that to get your attention. Think about all the blood that will be needed after the hurricane comes through. The Red Cross had to cancel about 15 blood drives in south Alabama alone due to weather and that will cause a huge dent in the blood supply. The Ridge Park blood donor center in Birmingham is open daily from 10-7. You can call 1-800-give-life to find out about other drives and local blood banks. Please be a regular donor!
We were scheduled to do several TV spots, but due to the coming of hurricane Dennis we were not able to get on. I did do a live spot with Mark from 107.7 the X, radio station. He even bought a bracelet. I did radio last year with the full gear, but today we did it on a cell phone. It kind of blew me away to do a live radio bit via cell phone.
Another cool visitor was a friend of the Twitty family and she gave us some Hope for Natalee bracelets. We gave them some of our bands as well. I know that we faced a totally different battle, but our story shows there is hope and that miracles do happen. Please continue to pray for this family as they hope for their miracle, Natalee's safe return.
We packed up and left for some dinner. We had the sea food buffet down in the Winfrey, it was yummy! We finally got home around 9:00. Jeanna says she had fun doing it, but we may have worn out our babysitter quota for a while after that long day.
I could go on forever, but I wont. We will post pictures soon, I swear. Thank you to the Red Cross for allowing us to sit with you guys today. Thanks for taking care of us and feeding us. Thank you to all the folks who donated to our stand and helping us raise money for our cause. You are all so very appreciated.
July 7, 2005 Day +827 Day #525 off treatment
Please remember to come out to the Wynfey Hotel in the Riverchase Galleria tomorrow for the Mid-summer Red Cross Blood Drive and Taylor's Lemonade stand. He will be there selling lemonade and bracelets to raise money for his favorite charities such as Camp Sam, Magic Moments, Children's Hospital, Lunch For Life, and Alex's Lemonade Stand. Please help us out in doing this. Also, help the Red Cross who is in national shortage and really needs your donation of the gift of life. Remember it is 30 minutes to become a hero! We will see you there from 8-8 and wear your favorite beach shirt!
Praise God, the last slide came back negative for NB. All scans and tests are normal and show no evidence of disease. I was on pins and needles all night and couldn't wait to get home and check my email. I was pretty sure all was fine when I didn't get a phone call, but I was still antsy to get home and find out.
We had a good day at school after a rocky start. Taylor is going to Guh's tonight and I could not get him to understand that he didn't have to take all his stuff with him to school that she was coming tonight. He was so mad that he acted very ugly and got in trouble. He had a few rough moments at school, but they were just 4 year old episodes. It was easily remedied by telling him I would tell Guh not to come. He had a good time today. He and his friends Josh and Mary Grace played kitchen for a long time. I had both classes today, but it was a calm day. Everyone was very good. Please continue to pray for Miss Christi's husband. He is out of the hospital, but still having some problems.
We are now home where Logan is napping, Taylor is playing and I am about to clean and do laundry. I have to get everything done today as I will be at the Wynfrey from 8-8 tomorrow. I hope that I will see you all there!
There is not much to tell you all. Please join is in praising God for our wonderful results and for blessing us throughout this journey. Please pray for his continued success. Pray for all our friends who are battling some sort of illness or injury.
July 6, 2005 Day +826 Day #524 off treatment
Today we finally went back to school. Taylor was glad to be there, he has missed all his friends. I am glad to get back into routine. It was not easy to get up after not working for a week and it being a rainy day. We had a good day. I had Taylor's class again. Pray for his teacher and her husband as he has been in the hospital all week. Pray they get things under control and he can come home soon.
Once we got home we all fell asleep. Taylor refused to come lay with me, but it wasn't 5 minutes until he was asleep on the couch. Again, with the rain and darkness outside, I could have stayed curled up in bed forever, but Logan wasn't going to have that. Taylor is still asleep and Logan is eating a brownie. He loves it too and it is very obvious in his appearance.
I emailed Meredith for the bone marrow results. Only 3 are in and they are all negative for disease. One stain is pending. The pathologist does not expect any problems he just can not finalize the report until they are all in. I have never had the results back this fast and probable this has happened before and I didn't know it, but I am uneasy. I have no reason to believe there is anything wrong, but I will rest easier when all results are in and clear. I guess it doesn't help that several of our friends have had "surprises" in their results lately. Please pray that the results are in soon and that the pending stain is negative for NB.
July 5, 2005 Day +825 Day #523 off treatment
Happy Tuesday to you all. We are having a pretty non eventful day. Taylor got up to watch daddy leave then he came to my bed and stared at me until I looked at him. I think it is pretty funny because I used to do that to my mother. He just wanted something to drink and then he fell asleep again until 9:45. Logan slept until 8:15, that was pretty good for him. He is in rare form today. He has been a total goofball. He is napping now and hopefully for a long time. He had a busy weekend. Taylor is in a pretty good mood. He is his usual moody self.
I talked to the nurse in Dr. Hill's office. It is normal for him to smell as he heals and he will smell for about 2 weeks. Yummy! I about fainted when she told me how long we need to do the nose irrigation. We have to do it twice a day for a month. Holy cow!! She told me to try it in the tub and make it a game. Hah, no way. There is no way that I can make squirting a bulb syringe full of salt water up his nose a game. If he is absolutely not going to tolerate it we can get OTC Ocean Mist, it is not as effective as the saline, but will do the job. I think I may try to get it and use it in the morning, because using the syringe is not a one person job, and then use the saline at night when Jim is here to help. He got a good cleaning yesterday. He snorted when we put it up his nose and he shot out a huge green glob. I guess that is a good thing. He can also swim in a few days and I say a little chlorine could clean him out:)
We are going to go to Watermark to look around when Logan gets up if it isn't raining. It is thundering pretty loud out there. Other than that we have no real plans for the day. Taylor is so excited to go back to school tomorrow. Hopefully, now our routine can get back to normal with no more missed days and hospital visits. Taylor has a dental appointment on July 13th, but it is after school. We will also have a post op appt. with Dr. Hill in August. Dr. Hill said we didn't need to come back, but his nurse was adamant that we come back in. That is fine with me as I just assume he be seen and be sure all is where it should be.
Don't forget about the blood drive and lemonade stand this Friday, July 8th from 8-8 at the Winfrey Hotel. We will be in the Canteen area so you will see us after you donate. If you are not yet eligible or you can not give please come by and donate to the lemonade stand and bring a friend with you to donate blood. You may contact us if you are interested in helping with the lemonade fund, but can not be at the Winfrey that day. All of those who gave on May 18th are not yet eligible to give, but come out anyway and bring some friends. Taylor will be at the stand and bracelets will be available for purchase as well. We look forward to seeing you all.
**I have just been given word that the Red Cross is on a national emergency appeal. That means that they are out of blood across the country. That is not good. Can you imagine if that July that Taylor was inpatient and needed blood and there had not been any. I don't even want to think about it. The summer months are always critically low. Today there is someone, young or old, that needs blood. They may have cancer, surgery or an accident. Whatever the reason is, there may be no life saving blood for them. Please give blood!!!! You can give today or Friday or anytime. You do not have to wait for a blood drive to give. You can go to your local Red Cross office to give anytime. Call 1-800-givelife to make an appointment. I hope that we will see you all on Friday or that you will make an appointment to give at your local blood bank. You are using 30 minutes of your day to be some ones hero.
Please pray that Taylor is NED forever. Pray for all our friends out there who are battling a fight of their own. Pray for our troops.
July 4, 2005 Day +824 Day #522 off treatment
Happy 4th of July!!!
We are having a normal start to this day. Taylor is still gone, but the rest of us are just hanging out. I have cleaned and done laundry, does that ever end??? Logan is playing and eating. He has eaten good today, he loves ravioli and it is all over him. We are about to make a stop in the bath tub. After a quick trip to the tub Logan went to bed. While he was sleeping a very mad Taylor came home. He wanted Gam maw to take him to Guh's house rather than bringing him home. He was very mopey and pouty this afternoon and I didn't think he felt good, but I think he is milking it because he knows he can. He was just fine at Guh's house.
We went to Guh's and unloaded the fire truck bed. Logan, Jim and I went to the mall, but Taylor wanted to stay at Guh's and play. We bought Taylor a prize. He was promised one after surgery, but never got it. He now has some sore of power ranger thing and a green ranger to go with it. He is so into that right now and I can't stand it. I can deal with most of his movies and shows, but Power Rangers kill me. I am a girl, I don't get into all that. Oh well! It started to rain while we were gone so he had to come in, but he was okay with that. It didn't rain long and we had plenty of outside time. It seems to be a 4th tradition to play Badminton. We have pictures of Taylor laying by the net at about 6 months old. He was never sick on the 4th, we were in NYC for one, but we celebrated once we got home and we did indeed play badminton. Logan watched last year at a few months old, but this year he wanted to play. Taylor tried to play, but he wanted it pitched to him like a baseball. Goofball! He had fun trying and if he ever tipped it he went crazy. Logan held a racket and swung it like a mad man and caused people to miss birdies as he wandered around on the playing field. I just plan stink at the game, so I worked the camera. Logan rode Taylor's 4 wheeler, but by accident, he stood up on the pedal. Guh couldn't catch him to stop him, it was so funny. He then got ticked off because he couldn't figure out how to do it again, his is a button on the handle bar and none of the buttons on Taylor's was doing anything. He gave up and got in the sand box. He swing for a while until he realized he was falling asleep. It was 9:00 before we finally headed for home. Everyone was tired, but having fun. There was no moping for Taylor that is for sure. Both boys even ate good.
We got home and I could not put the kids to bed that dirty. They had a second bath for the day. Logan went right to bed, but Taylor is playing with his new stuff, watching the movie and eating gold fish. That was not much of an update, but that was our fun for today. I am about to go to bed myself.
Please pray for Taylor and his continues success against NB. Pray he is NED forever. Pray for all our other friends out there fighting a battle of some sort. Pray for Christi who did not get great scan results. They are still waiting on more results. www.christithomas.com We roomed with Christi for 3F8 and she has been battling this beast for a few months longer than Taylor and never been NED. Pray that this set back is minimal and she hears those loves words (NED) soon.
****Don't forget Taylor's lemonade stand this Friday, July 8th. It will be at the Winfrey Hotel at the Galleria from 8-8. It will be on the 2nd level of the hotel. Please come out and support the Red Cross by giving blood and help Taylor raise money for our favorite charities and Alex's lemonade stand. We will be in the canteen area, so you will run into us after you give blood. If you can not give and you want to help Taylor please contact us to donate to the lemonade stand. If you gave at our May 18th stand, it is not quit enough time gone by to give again. We are like 3 days short. I do not know if they will let you give or not. You can call the Red Cross to find out. 1-800-givelife
July 3, 2005 Day +823 Day #521 off treatment
What a day we have had. We started the nasal irrigation and it is NOT fun! We have to squirt water, salt and baking soda mix up his nose with a bulb syringe. It is awful. It is getting some blood out, but it is mostly just running back out his mouth, yuck! He gags and carries on, I hope this is not a long time event. The paper work says do it until your post op visit, but we do not have a post op visit. He still stinks so bad. This morning a kid a children's minutes told him he stunk. I felt bad, of course he didn't seem to care, he just followed the kid until an adult had to go sit with them. It was embarrassing that he was acting out at church, but also a blessing. The man had just talked about us all being healthy and we should be thankful for that. He was sitting a few inches from Taylor and he had no idea that he had any problems what so ever. That is a miracle! He really does stink, he went outside for a bit, but gnats were swarming his face. They swarm all of us, but they really took a liking to him. He is not eating much and he hasn't pooped in a few days other than that he seems to feel much better. He got a bath last night and I know he felt better after that. He took the band aids off his bone marrow spots. He can get his port spot wet on Wednesday and it looks fine. It is bruised up, but it is healing fine. Hopefully he will be 100% soon.
I went to Guh's house after church to go shopping. I took the jeep with no roof and it started to rain. Luckily a few sprinkles was all I got and it quit. It did rain later, but I had rooted my way into her garage until it stopped. I had a real nice hair do by the time I got home. I was not gone long and I came back home. We are getting ready for our picnic at church. We decorated the wagon last night. We are ready to go. We did Taylor's nose again. He freaked out, it will be a 2 person job that is for sure.
We had so much fun at the picnic. There were tons of people there. Taylor had a ball and Logan showed his butt. He needed a nap real bad and nothing would please him. Taylor ate fair, he wasn't pleases with the choices. Logan ate cake. I know it isn't the best dinner, but he was quiet. After dinner we went out and got the wagon and Taylor's bike ready. Taylor had a big bow on his bike and he wore his helmet which is what made it all so cute. Logan rode in the wagon and held the Statue of Liberty torch. There were some awesome looking wagons, ours lost its appeal once we saw all the others, but we still were proud of it. Logan decided to pull the wagon the last lap and he was not patient enough, he didn't like the stopping and would just keep plowing his way through. He was mad when it was over because he wanted to keep going. We just put the riding toys in the car and went to find a spot to watch the fireworks. It was awesome. We had some huge action going on, people even pulled over on the interstate to watch. Both boys were scared. Taylor has never seen big fireworks, just the few little ones we may have shot in the drive way. It was great to see Taylor play with his friends outside in the church parking lot, it just doesn't get much better than that.
Taylor wanted to go to Gam maw's and since he had already had all his meds for the day he went. Logan wanted to go, but he was ready for bed and we knew he wouldn't get to play anyway, so we just kept him and sure enough he was asleep in 5 minutes. We were not far behind him.
July 2, 2005 Day +822 Day #520 off treatment
I hope you are all having a nice Saturday. We are. We went to the good ole dump as much fun as that is. Taylor loves it! We then went to Lowe's and made a stop at the toy store. Taylor doesn't really seem to feel good. I am not sure how much is real and fake. He was fine in the toy store, but he has not eaten well and has complained of a head ache several times. We just scanned and he just had several procedures done, but I still worry. He is now watching his new Power Ranger movie and seems to feel a little better. His nose looks better, it is not bleeding any more, but boy does he stink. I assume it is all the blood that has drained and is in his nose, it is so gross. He will start the saline solution tomorrow that is to dissolve the packing and dried blood. Hopefully, that will help some. I have brushed his teeth so many times it is sad, but it doesn't help. He has stinky breath first thing in the morning anyway and when you add the stench from his nose to it, it is awful. Poor fellow!
Since we got home we have just hung out. Taylor has watched his movie that is sooo boring, but he likes it. Logan took a nap against his will and so did I, but not against my will:) Jim is now taking his turn in the nap department, but Logan doesn't like the idea. Taylor really wants to go outside, but I am not sure if he needs to. I am such a worry wart. I want to go to the Galleria, but no one wants to go with me. Oh well!
We have no plans for the night. I guess we will just hang out. Taylor finally gets to take a bath tonight. He has not had one since Tuesday since he couldn't get the port spot wet for a few days. He likes to play in the tub and I knew it would be a fight if we got in and out, so we just didn't do it. I know he will feel better after a bath.
Please pray for Taylor and his continued success against this disease. Pray for the sinuses to be healing properly. Pray for all our friends who are fighting this and other diseases.
July 1, 2005 Day +821 Day #519 off treatment
I know I say this every month, but dang I can't believe it is July. We had a good day yesterday. Taylor had several little dribbles from his nose and the Afrin stopped them. He had a little fever which was to be expected, but Tylenol took care of that. He kept gripping at his clothes no where near any of the spots. I am not sure if he was just doing it or if he was trying to keep his clothes from touching his spots. He at first said his "tt" hurt, but then said he just did it, so I think he wasn't even really aware of it. He sounds awful, but I guess it is hard to breathe with blood all in your nose.
He wanted to go out to eat at Ruby Tuesday for little ham, so we did. He ate good. He had a good bit of ham and cheese from the salad bar and half of a grilled cheeses and some cake. He ate a good bit of food at home it was just junk, nothing good. He wanted to go to Paw Paw's. He feels okay, so he went. He is only bleeding if he is up for a long time, so he should be fine. He has his Afrin if he needs it. They did have to come back by since he didn't have his night night and bozo.
I have some awesome news to share. I am so excited to finally share good news about a fellow NB friend. Sarah has been fighting NB for years and has been off treatment for about 2 years, but always watching a spot and never declared NED. Well, yesterday that all changed. She was finally told she is NED!! You go girl!! Drop by and congratulate her on this huge step in the NB world. www.caringbridge.org/nc/sarahsmith
Logan was a silly goose all night. He is so silly, he was running and screaming and spinning around. He slammed his head into the sofa table when he laughed and leaned back and fell between the couch cushions. He cried for a minutes, but it was a hard hit, I heard it from the bedroom.
As for this morning, Logan was up at 6:45, but I ignored him and slept until 7:45. He ate a decent breakfast and he too ate good yesterday, he has not been lately. He is playing fine. He has been a good boy and ate a fair lunch. He napped for about an hour nothing like yesterdays 3 hours and 15 minutes. I let him cry for a minute to see if he would go back to sleep and low and behold he did. He slept another hour. I cleaned up the kitchen and did some laundry while he slept. I like having Friday off. I get the weeks mess picked up and free up the weekends.
I haven't heard from Taylor today. I am sure he is having a ball. I will update tomorrow on his day. The weekend holds lots of fun. Tomorrow is clean up around the house day. We had hoped for Taylor to get to play with this new slip and slide, but that wont happen yet. Sunday we are going to the church dinner and wagon parade and then fireworks. Taylor is excited about decorating the wagon, I just hope that he and Logan don't kill each other over it. Logan is wild about his wagon. Monday we are going to Guh's for a cook out and we have some fireworks of our own. I hope that you all have a safe and happy 4th of July.
Please pray that Taylor is NED forever. Join us in thanking God for the miracles he has performed in Taylor's body. Pray for all our friends who are battling cancer.
Back To Top
Go to News Archive: | Go To TaylorWatts.org