Quick Jump: 1st Quarter 2006: January February March
March 31, 2006 Day +1,094 Day #792 off treatment
Yipee, it is Friday. We had a great day with wonderful weather and we spent most all day outside. Taylor had to stay in his room all afternoon cleaning. Too bad for him it rained and he didn't get to go to practice as that was his only outside time other than school. He finally go that room of his cleaned around 9:30, he worked on it from 2:00 until then. We hung out at home tonight doing nothing. The weather got yucky right at 4:30 when we were too have practice, so that got cancelled. I went to curves, but other than that we did nothing.
March 30, 2006 Day +1,093 Day #791 off treatment
Yeah, it is Thursday one more day closer to Friday. This week has flown, Wednesday is a good day to be off, it breaks up the week. Logan was a little lost this morning without Bubba here to play with or ride to school with. It kind of messed him up. He got laughed at at school today. He wore his new shoes again and took them off, this time he didn't have socks and they saw his pink toe! Too funny!
We came home to nap and clean. We have been gone all week with speech and luncheons and practice. I have not picked up a thing or washed a thing and now it is the biggest mess around here. Oh well! Taylor got home around 4:00. He was in a fowl mood and complained about his pants and shirt and everything in between. He did not want to eat, but finally did when I explained that he could not eat until after the game and that would be 8:00.
Way to go Timber Rattlers! We won 12-10. They did an awesome job. Taylor struck out his first at bat, but he got a good hit his second time and he had 2 strikes too! Bless his bones he just doesn't have a fast bone in his body and he was out before he hardly got off home plate. It doesn't help that he is left handed and has to turn and run. Maybe one day he will hit it hard enough to get a good head start. It barely went to the circle, so they didn't have any trouble getting it and throwing it to first. That's okay though, he got a hit and had a blast out there. He was great in the out field. He stayed crouched down with those hands on his knees like he knew what was going on. He did great backing up the other fielders, but he never got one. He expressed his disappointment in that too, but we assured him this was just the first of many games.
Logan had a great time too. He found a friend and they played with money for the longest time. They put it in each others pockets then they took it out. They shared some fruit loops and he even snagged a kiss!! Too cute and it is all on film! They are going to be a hoot this season.
Please keep all of our friends in prayer. Mr. Kadin is back in his stem cell room! Yahoo! Miss Madison is at home! Yahoo! Miss Christi has had some more spots show up, darn. Mr. Jake had surgery Monday to remove a tumor in his head. Please pray for all these family as well as the many others.
March 29, 2006 Day +1,092 Day #790 off treatment
Today was a special day for me. I had lunch at the Sheraton in Birmingham at the Childcare Resources Childhood Advocate awards. I sat at a table with Lynne from Charter communications, Stephanie and Jennifer from Camp, Janet, angel Janie's mom and Nominee Dan's wife, Miss Scarlett's parent's and Diedre Downs. We had so much fun. Who knew there were so many people in Birmingham that were doing such wonderful things for kids. There were 20 wonderful Nominees. We were all sad that Dan didn't win for the Janie Sims Foundation and for all his tireless work on the car tags, but we are still so proud of him. I am happy to report that Dr. Royal won. He is over the radiology dept. at Children's. There is no telling how many "clean" scans of Taylor's that he has read.
We had a great time having some girl time. Deidre really is just one of the girls. She was telling us funny stories of her reign as Miss America. We waited while she signed a few autographs and took some photos, we were with a star! It was fun, thank you Camp SAM for inviting us along. I went to Guh's house after the luncheon. She picked up the boys and they went there to play. They were having a blast. We left and headed to the ball park for what was supposed to be a bat and leave practice that turned into a 2 hour practice. Taylor was not really pleased with that since I had told him we would only be there a few minutes. He got aggravated at this coach. He got 3 strikes and he had to sit down. Coach was not mean at all, but I think it hurt Taylor's feelings to be told he had to hit or sit. Well, when he was walking away he said "do you want one more try" and Taylor told him "NO". Well, he tried again anyway, but he didn't hit it. I think he gets intimidated because at home he never misses, but at practice he never hits.
We had dinner with Gam maw and Paw Paw and then Taylor and Paw Paw headed to the hunting club for the night. They will be back tomorrow afternoon in time for that 6:15 game you are all invited too.
March 28, 2006 Day +1,091 Day #789 off treatment
Ball games this week: Thursday 6:15 and Saturday 2:30. McAdory HS Rookie field.
We had another good day at school. We didn't have any plans after school today, so we came straight home. Logan was so tired and grumpy that he couldn't sleep. It took a while to get him asleep. That stinks too as I will have to wake him up to go to ball practice. I don't honestly remember if it is at 4 or 4:30, but we are going at 4:30. Logan has already said he wants to bring his bat, that could be interesting.
We were right, it was 4:30. Logan played with his bat and ball for a little while, but mostly pretended to drive us around. I bring a blanket to sit on and he sat on it with my keys and drove us all over town. He even made sure we put on our seat belts which was the bat laid over our laps. When Jim got there around 5:30, I left him in charge and headed to Curves. My butt has been hurting for a week, but my tummy must be getting a work out now as it hurts too.
Taylor did good at practice. He hit all 5 balls pitched to him. He has to remember who he is after in the batting line up, no moms in the dug out telling htem when to go this year. He did good today, lets see if he remember Thursday night at the game. He had a good time today!
March 27, 2006 Day +1,090 Day #788 off treatment
Back to school. I must say it was very hard to get up this morning, for all of us. Logan has been up at 6:30 or 7:00 everyday of spring break, but today he slept until 8:05 therefore I did too, he is my alarm clock. We leave at 8:30. However, I think everyone had a hard time getting up as we got to work at the same time as everyone else. Taylor was thrilled to be back. I was fine once I got up and got going and Logan didn't seem to mind. They wore their new "Crock" shoes. Taylor was mad as could be. Logan loves his, but he took them off and traded with a friend. He wore a little girls purple light up shoes all day! Too funny!
After school we went to Nana's to drop off Logan. Taylor went to speech and did real well. He did medial T sounds and K sounds. We will be concentrating mostly on medial t as he just can not get that T sound. He did okay with K IF he remembered to put it on the end of the word. He would say Ra rather than rake etc. He has trouble with all ending sounds, but is getting better. I do see progress, but I do not see speech ending anytime soon.
We had to rush to Nana's and change Taylor into his ball clothes. We ran home long enough to get a snack and drink and took off to ball practice. Logan slept for part of it which was heavenly. Once he woke up I let him slide a few times and then he laid on the blanket and watched the boys. Taylor did pretty darn good today. He hit much better. He and one other boy were chasing balls and he tried to pull a fast one. He told the boy he dropped his hat (he really did) and when he stopped to get it Taylor made it to the ball first. They went after another one a few minutes later and he told him he dropped his hat (he really did) but this time he didn't care and kept running. We all got tickled at them. I picked up Taylor's hat and our team shirts, so we are set and ready for the season to start. Don't forget he has a ball game at 6:15 Thursday night and at 2:30 on Saturday afternoon on the Rookie field at McAdory High School.
Jim got to the park around 5:30 and I took off to Curves. I got home around 6:30 and we just hung out from then on out. The boys took a bath and then played for the longest time. They had a good time. The house is a wreck, but that's okay.
March 26, 2006 Day +1,089 Day #787 off treatment
Happy Sunday! Be sure to read yesterday's update. It is full of interesting things that happened to Taylor and news on our hospital friends.
As for baseball, the season officially starts this week. Taylor will have a game at 6:15 on Thursday on the Rookie field. He will also have a game on Saturday at 2:30. This year will consist of 2 games per week more than likely always on Thursday and Saturday. That doesn't leave much time to get that uniform clean, but I will manage since I am so on top of my laundry duties:) Saturday will be a full day. We will have the opening day parade that day as well as other opening ceremonies and pictures then a game, so we will be at the ballpark all day. When Jim played ball in high school, I loved stuff like that. I loved being at the ball park and hanging out. My mom hated it and I never knew why. I am so dreading Saturday! I think it will be more fun with the boys are old enough to not have to be watched like a hawk the entire time. It will be fun though, lets pray for some warmer weather!
Today we went shopping. We got Taylor some new stuff. Logan is pretty well set for summer clothes, but Taylor is in need. I will be picking up a few things here and there and hopefully will find some winter stuff on sale for school next year. That still blows my mind to think he will go to "big school". After our shopping fun we went to Jason's Deli for lunch. It was my first time and boy was it good. The kids loved it too. The kids meal was 1.99 and it came with hot dog, chips and drink and that is a good deal. Plus, there is free ice cream! Hey, can't beat that. Logan took a nap in the car after that and we took the longest rout we could to get to Gam maw and Paw Paw's house. We had dinner there for our March/April birthdays. It was yummy and the kids had a blast having all that attention. Poor Roo Roo is tired of being chased by Logan. That poor dog is going to bite him one of these days. It was great fun had by all and lots of birthday goodies for me! Thank you everyone.
We are now home and Logan didn't make it to the bath tub. He fell asleep in the car. He did wake up when we came in the house, but still very willingly went to bed. Taylor has gone to Wal-mart with his daddy. He was decked out in his new Power Ranger bike helmet, knee and elbow pads. It was quite a fashion statement. I have to laugh at Logan and how much he is like Taylor was at that age. Today he wanted a truck with a "hook" which is a trailer. Taylor loved nothing more than a truck and hook when he was little. He would get so mad if the hook fell off the truck while he played. Just this week Logan has started to pitch a fit and throw the truck if it falls apart. He also has to have a "pock" aka pocket. He will put a coat on if his pants or pajamas do not have a pocket. Too funny!
I almost forgot the most exciting news of the day. Logan woke up this morning begging to go to the potty. He was wet, but he went to the potty and used it! We put underwear on him and moved the potty into the kitchen. I know that sounds crazy. It worked best for Taylor when the potty was out in the open and he didn't have to leave us to go use it. However, Mr. Logan has real bad aim and I didn't want him to pee all over the carpet, so it is in the kitchen. Anyway, he went about every 5 minutes on his own and did use it a few times. He had a hard time pulling his underwear back up and often had boy parts and plumber crack hanging out, but he tried. He ended up pooping in his pants and by the grace of God is was a very solid poop in which he never has! He knew something wasn't right. He went to the potty and sat down and he did pee, but he was just a screaming for me. We cleaned him up and got new underwear and he did okay for about an hour when we put them in the tub and got ready to leave. We put a diaper on him to go out, he is not ready for outings in underwear and I certainly am not. I think we are making progress, he may get to swim on the cruise ship after all!
Please keep all of our friends in prayer. This is a really hard time for a lot of them right now. Pray that Taylor has beaten the beast and never again faces it.
March 25, 2006 Day +1,088 Day #786 off treatment
Please say a big prayer for the Tierce family. Sweet Cassidy earned her angel wings last night around 8:20. It is very hard on all of us to deal with the passing of one of our cancer friends. Please say prayers of comfort for Sean, Suzie and Cade as well as the rest of the family. www.caringbridge.org/al/cassidytierce Kadin had to be put on a Bipap machine as he was getting tired and struggling a little. He coughed up a little blood. Please join us in praying that it was from being entubated and not blood in the lungs again. www.caringbridge.org/visit/kadingazzaway Madison is still in pain, but got a patch yesterday and hopefully that will help. www.caringbridge.org/visit/madisonbeck Pray for Davis who has just had a biopsy for another painful bone liesion. Thankfully, it was not disease. Pray that the bone board at UAB can figure out what is causing this. www.caringbridge.org/al/davishartsell
Taylor had an interesting morning. He woke up with a lot of pain in his right cheek. He was crying and grabbing it. I was scared to death. I looked in his moth and there was no ulcars or anything and he kept screaming. The right side is the side that has been so stopped up this week and wouldn't blow for anything, so I was pretty sure it was sinus pain, but it was still very scary. He did have a spot of cancer on his cheeks at diagnosis, just FYI. Anyway, I got some tissue and told him to blow to see if it would help relieve some of the pain. He blew a few times and then started to swallow hard and I could tell he was trying to get something out of his throat. He blew again and then just froze. He wouldn't talk and my mind was running all over the place wondering what was going on. He opened his mouth and (bare with the grossness!!) and he had a mouthful of green peanut butter! It was so thick and sticky. I am sure he felt that go all the way through his cheek and out. That is so nasty, but once it was out, he looked at me and said, "I feel much better now". Connie, the ENT nurse told me to irrigate harder. I did, but still nothing came out. I guess we did loosen it up after all. Now that we have the right side cleared, the left is real blocked. I am having him blow every hour and he gets a good bit out. I am hoping that the irrigations today gets another plug out. He must feel better! Poor guy. It was so nasty! I called Jim in to look at it, we were amazed that all that came out of his sinuses.
I went to Curves this morning and got my work out in. My butt hurts! Once I got home we all got ready and went shopping. We had chinese for lunch and Taylor will not taste anything new. We bribed him with a toy if he tasted and egg roll and sesame chicken. He tried it and liked both. We went to Toys R Us and he got a clearance rack toy as did Logan. Logan had about enough by then and he fell asleep in the car and is still asleep.
March 24, 2006 Day +1,087 Day #785 off treatment
Here we are at Friday. This is the only week you will not get a TGIF. I would like another week off and this time with no kids:)
Let me start with the most important stuff! Cassidy is in dire need of your prayers. She is taking a downward turn as her liver is getting worse. She will have more x-rays today to see if she is improving or getting worse. This is a very difficult time for her and her family. Please pray for them and stop by her page at www.caringbridge.org/al/cassidytierce Mr. Kadin is making great improvement. He has been taken off the Versad and is awake now. Yeah, keep up the good work!! www.caringbridge.org/visit/kadingazzaway Madison is inpatient still with great amounts of pain. They have not been able to find any reason for this pain. That must be awful for her to endure, but as parents it is so hard to put your Fatih in the Dr's and them tell you "we don't know". Please pray for Madison that her pain will end. Pray for her family as they try to deal with it until answers can be found. Pray for the Dr's to find the answers. www.caringbridge.org/visit/madisonbeck Pray for Miss Colette who have fever the other day and seems to have a UTI. However, she has been granted a Disney Wish Trip!! www.caringbridge.org/al/colette Christi had scans yesterday and they showed more cancer. This time is is in her liver and that is bad. Once it hits your liver things go quickly. Pray that this warrior can fight on and beat the beast. www.christithomas.blogspot.com Please keep Cam and his family in your prayers. He is on hospice and in great pain. It is under control, but these makes him sleep most of the time. It must be so hard to know your child is leaving this Earth and he is sleeping all the time and you can't talk to him. Once again, Michelle's, Cam's mom, has left words of great wisdom and encouragement on Cam's journal. www.caringbridge.org/fl/camspage
As for us here in Watts world, we are fine. Taylor sounds awful with a cough and snot. I finally called Dr. Hill's office. His CRNP called back and thinks this is normal. He will have some sinus gunk left behind that didn't come out in the scrape. This will have to drain. He is still swollen, so it can't come out good hence the fact that it is so very hard to blow out yet isn't all that thick. She wants us to be more aggressive with the irrigation as the green should be coming out when we do it, but it isn't. That is going to be hard. It is a very ugly time here in the Watts house when it is irrigation time. He fights tooth and nail. He screams and cries and jumps around. There is more water on his face, me and the floor than up his nose. However, do you blame him? I would act that way if someone wanted to squirt sale water up my nose with a bulb syringe! Anyway, she feels it is normal this close to surgery and as long as there is no fever or other symptoms not to worry. Easier said than done, but okay. We have a post Op visit on 4/3, so we will see how he looks then. She said if it is still green 3 weeks out then there may be infection, the apt. is 3 weeks out, so hopefully we will be clear by then. Keep your fingers crossed and prayers going up!
March 23, 2006 Day +1,086 Day #784 off treatment
Hi again! Today was a busy day. Taylor got up and finished cleaning his room, again. Ghen Ghen called and offered to take him to see the Shaggy Dog. He ate breakfast and did his irrigation then he left for his date. Logan and I went to Books A Million, The Parent Teacher Store and lunch with Guh. He was pretty good while we were out. He did let out a blood curdling scream in the book store. What was wrong you ask? Nothing, just Logan being Logan!
We are home now and I am cleaning and Logan is napping. I tell ya, this cleaning stuff never ends. Between the kids making a mess and Jim's tools all over it is crazy. We are replacing the doors in our house. We have an older house with older, solid doors. We are replacing them one at a time as we can afford a door, with the panel doors. We have done 2 so far and have 2 waiting to be done, so there are tools and doors all over. Anyway, that is our spring project. I also need to get back in that play room. I think I will let it go until out May Yard sale and I can clear out my piles that are set aside for that. So much to do and so little time to get it done. Oh well, who cares if it is a mess, we had fun making a mess!
Taylor gets to go back to ball practice today. He is excited yet not excited. I am not excited. I do not enjoy ball practice. Taylor does fine, but chasing Logan all over the place and keeping out of mud puddles and out of the line of the ball is hard work. Gam maw and I are going to Curves this afternoon after practice. I am enjoying it. I went Tuesday night all by myself. Who would have ever thought I would do such a thing? Not me!
It is now 9:00 at night and we all in and settled down from a busy day. Taylor and Ghen Ghen were sold tickets to the 1:00 show, but thought they had bought the 11:00 show, so they had a long wait at the theater. Taylor didn't mind, he played video games and ate 2 buckets of popcorn. He got home around 3:30. Ghen Ghen was an angel and offered to keep Logan at home. He was still napping and it was so cold outside. We stopped to get Taylor a snack and a drink and when he was stepping up on the sidewalk he tripped and slid across the pavement. I know it hurt, but he jumped up and said, "that didn't hurt". He saw that there were people around and I know he was embarrassed and wanted to shrug it off. Well, he did and he marched on in and picked out his goodies. We got to practice and he was so excited to be there. He accidentally caught a pop fly. It was absolutely hilarious! He had his glove out, he was ready, but at the last minute he looked away and the ball landed right in his glove. He looked between his legs and all around before he realized it was in his hand! Too funny! He had some hustle in him today. He was running all around for the ball and managed to get a few too. We had a practice game. He hit a fowl ball then hit one into the infield. He took off running. He barely made it to first base. It was called safe, but I think in a real game it would have been protested. Yes, protested. This is Rookie ball for 5-7 year olds and it is soooo serious! Taylor and several others were on the verge of tears it was so cold. I think the temp literally dropped 20 degrees in the 2 hours we were there. Jon is well aware of Taylor's history and surgery, so he let us slip out. I felt bad that the others had to stay out in the cold, but at the same time felt awful making him suffer in the cold. I never know what to do in that situation. If he were a "normal" "healthy" 5 year old would I have let him slip out? Probably not, I am sure I would have told him to get tuff! I don't know!
We went home and let Taylor play with his new game. Logan got a train puzzle. He has never worked puzzles at home, he always throws the pieces, so I just don't get it out. I don't know if they do them at school or not, but he dumped it out and put it together like it was nothing. Smarty pants! When Jim got home we went to Gam maw and Paw Paw's. Gam maw and I went to Curves and got our work out done. We then met the guys for dinner. That is kind of defeating the purpose huh? Taylor ate like a horse! He ate all of his chicken. Logan didn't do too shabby with his hot dog either.
March 22, 2006 Day +1,085 Day #783 off treatment
Happy Hump day! Why is it that the weeks we are out of school fly by so quickly, but when we are in school they just crawl by. I think time is flying by yet standing still. March flew by in a flash yet it is still so far away until our September cruise! I know it will fly by quicker than we think. I still can not fathom Taylor in kindergarten!
We originally had plans to meet his best bud, Calvin, at the park. However, with his green runny nose so quick after surgery, I thought it best to stay inside. He knew about the park, but forgot, so I didn't mention it again, so he hasn't been upset. I know when he remembers that it didn't happen we will be in for it. I am so sorry Kammy and Calvin, that we had to cancel!
Taylor had a small problem yesterday. He has tried to poo poo several times over the weekend and nothing every happened. In the camper I thought he just wanted to play in the bathroom, but apparently he really had to go and couldn't. He tried several times yesterday and sounded like he was in labor! He finally got a little bit out and was fine for a few hours. However, the worst was yet to come. He cried the biggest tears as he pushed the biggest poo poo out. He was fine as soon as it was over and so far has not needed to go again, but it was awful! Being a boy, once it was out he needed to look at it and analyze it and tell me what part had it stuck in his booty. I am always happy to listen to his stories and theories, but this is one I could have skipped!
Today we have just hung out at home all day. We have dinner plans with my Pop tonight, but other than that, no plans. Taylor cleaned his room although you wouldn't know it now! They have fought a good bit today and I am a bit rattled. Taylor is mad at me for the nose irrigation. He sounds terrible. He is so congested he can hardly breath and nothing is coming out with the irrigation and he can't blow it out. It is so frustrating that this never ends and it has to be frustrating to him. Poor guy! He got everything too, asthma, sinus/allergy issues, cancer. Logan has nothing. I am glad that Logan has nothing, but poor Taylor needs a break!
We had a nice dinner tonight. The boys did fairly good. They are so wild! We ran to Wal-mart afterwards and Jim ended up leaving with Logan. He wanted to be held and I am not carrying him in the store and he had a fit. It was so embarrassing when he screamed bloody murder all the way out of the store. People probably thought he was being kidnapped. He is very dramatic! Anyway, Taylor and I finished up our shopping and headed for home. We watched TV and played some memory and went to bed.
March 21, 2006 Day +1,084 Day #782 off treatment
Please go to the Red Cross and ask to direct donate platelets for Kadin Gazzaway. He is O+ CMV-, you may want to call and see what days they need you. They are keeping up with his donations and they will know when he is getting low and needs to restock. You can go to www.caringbridge.org/visit/kadingazzaway to read more about him and direct donating. Also check in on Cassidy who is still having a very difficult time in ICU. www.caringbridge.org/al/cassidytierce
We slept in today. Well, until 8:05. Logan must have been tired! Poor Taylor didn't sleep well. He is so stopped up. He can not blow very hard due to the surgery and what little he can get out is just as green. I really don't know if this is just to be expected or if we already are seeing allergy/sinus issues starting back up. I just did a nasal irrigation and we got a good bit out, so maybe that will help. He had a terrible cough when he got up, but it must have just been from laying down as he is fine now. I hope this is just part of the healing process and not another infection.
The kids are playing real good today, so far. I hope it stays that way. They are camping. Well, I spoke too soon. They are now fighting over something. Logan is real clingy and whiney today. I think he is just tired. Taylor is fine other than his ever present snotty nose. we have plans only to hang out at home today and clean up. Hopefully, I can get everything done today and we can enjoy the rest of the week playing.
Please pray for Taylor's continued success against NB. Pray he is cured of the beast and never again faces it. Pray that all our friends are feeling well today. Madison is back in the hospital with a lot of pain. www.caringbridge.org/visit/madisonbeck Amber is finally home! Yahoo! www.caringbridge.org/al/amber You should stop by Austin's page and read about the wonderful thing that happened to his mom. www.caringbridge.org/al/austin
March 20, 2006 Day +1,083 Day #781 off treatment
It was time to head back to B'ham. The boys were not real pleased to leave, but they did okay. Just like clock work, Logan was up at 6:30. He played real good until Taylor got up around 8:00. We started packing up and getting ready to head home. I let them go out and play in the grass, but had to make them come in since they couldn't follow directions. Taylor was running all over other people spots and Logan wanted to climb under campers. We were finally ready to go around 10:00. We went back to the outlets and just hit the few stores we wanted to go to. We then went to Sonic and gassed up and were headed for home by 11:45. Logan was asleep real quick. I think his late nights and busy days caught up with him! He slept about an hour and woke up and looked around a few minutes and then fell right back to sleep. We stopped again from drinks and snacks and then continued on. We had been promising a trip to Peach Park to get milk shakes and play on the play ground. We did stop and get a milk shake, but the bad weather was moving in fast, so we didn't go to the play ground. Taylor did get pouty, but when it started to pour rain about 10 minutes later, he got over it! We drove in rain the last hour, but it wasn't too bad. We dropped Guh off and then we went on home. Logan screamed half way home because I "lost" Guh. We got home around 5:00.
I got home and changed into my "play clothes" and met Gam maw and Curves for our first work out. It was hard work, but felt good. I mean good in an emotional way not physical:) After the work out I came home and we hung out here. It continued to rain most of the night. By 9:30 we were all in bed. It was a long day.
March 19, 2006 Day +1,082 Day #780 off treatment
We had a great day of fun today. The boys loved it! We started off with bath time. Taylor liked the baby camper bath tub, but Logan was not so fond of it. I just sprayed them with the removable shower head. Logan was mad as a hornet, but he got a bath. We went to the amusement park. We did Goofy Golf first. It was funny, on the way down we were talking about what all we could do and when Goofy Golf was mentioned Logan started saying, "I wanna play doof doof golf" then Taylor added that, "I like Mickey Golf too". Ha! We tried to tell him it meant silly not Goofy the dog, but he didn't get it.
We played goofy golf first. Taylor loved it and was fairly good at it. Logan on the other hand is more of a Happy Gilmore kind of golfer. He played pool rather than golf. He would hit it with the handle end of the club and if it didn't do what he wanted it to do he threw the club and just picked up the ball and threw it in the hole! When we got to the 18th hole, Logan went first. Well, as you all know the 18th hole keeps your ball and he didn't like that very much. I got a hilarious picture of him going after his ball. It went into a house and he is laying at the house trying to dig it out. Taylor wasn't very happy either, but he didn't go after it. After the golf game we went to ride some rides in the Kid Zone. They picked a spinning ride first. Taylor loved it, but we had to take Logan off. He was scared to death. There were no other kids around, so they just let Taylor go and go. He wont say anything, so I had to finally tell the guy to let him off. He had fun, but only for so long. He was looking a little green! We rode the train a few times and the swings. Logan stuck it out on the swings, but he is screaming bloody murder in every picture. Taylor liked it. Taylor was tall enough to ride the go karts and the smile on his face was worth the entire trip! He was so excited. He rode by himself the first time and was just grinning the entire time. When it was time to get off he banged into the kart in front of him, but everyone we watched did that. We did a few more rides and then came back to the go karts. This time he rode with another little boy. He drives like his daddy. He was bumping him when they got on the back side and then he would back off when he past us and the workers! Too funny! We did a few more things and he used his last ticket on what else? the go karts. Logan was mad that he couldn't do that, so we went to do the train. He didn't have a ticket, but they let him ride anyway. Taylor had made some friends with the workers and had even given them each a bracelet. They let him ride the go karts for about 10 minutes straight. He loved it!!! After all the tickets were gone we went into the arcade for a few minutes. We racked up 33 tickets and let them pick out some prizes. Taylor got a snake and a ring. Logan got a plastic deer. It is clear and has orange on it. It looked like a gummie snack to him and he tried to eat it! Once he realized he couldn't eat it, he was okay and he loved it. He has carried that silly thing around, even slept with it.
We left the park and went to put shorts on, it had really warmed up. We got some lunch and went to the beach to eat it. It was not so warm at the beach. The wind was so bad they could hardly play in the sand for it blowing all over them. We stayed about an hour, but it was so windy and cold that we had to go. They did have a good time. I got funny video of Taylor making a sand angel and Logan stands over him and threw sand on him and you hear me yell and stop the video. He is so evil! We started to go to the outlets, but decided to let them go rest a bit. We headed to the outlet around 5:30 only to realize it was Sunday and everything closed at 6:00. Oops! Oh well, we went to Applebee's for dinner. We then headed back to the camper. Taylor and Guh played Memory and built with blocks. Logan played with blocks and his deer. We finally put cartoon in and made everyone lay down. Once again, Taylor was gone first, but Logan wasn't too far behind. It again, was near 11:00 before he went to bed. We moved Taylor to the bed and we were right behind them.
March 18, 2006 Day +1,081 Day #779 off treatment
Happy Birthday Mommy!
I spent my birthday by joining Curves and heading to the beach. Gam maw and I met at Curves this morning and got signed up and measured and all that good stuff. After we did that I headed home to load the car and pick up the boys. We headed to Guh's house to pick her up. We took the kids to Don Don's and then hit the road. It wasn't long before we lost Logan for about an hour nap. Once he woke up he was content to watch the Thomas movie and the Candy Land movie that Taylor had picked out. Taylor never did nap and asked "when will be at the camper?" about 1,000 times. We stopped for drinks and a potty break and that was our only stop. We got down there around 4:00. We unloaded the car and let them play frisbee for a while then we headed to Ruby Tuesday's for dinner. Taylor got in big trouble there. Everything we said to him, we had to say about 5 times and get ugly before he listened. It was getting real old, so I let him have it. He straightened up somewhat.
After dinner we went to the camper and played. They did okay, they fought off and on. Logan kept falling into the steps. He did not want to go to bed! We finally had to turn off all the lights and everyone lay down. Of course, Taylor fell asleep before Logan, but he finally went. It was near 11:00 before we got them down.
March 17, 2006 Day +1,080 Day #778 off treatment
Happy St. Patrick's Day! Don't forget to wear green or you'll get pinched! We all wore our green, so we didn't get pinched. We had another good day at school. Taylor didn't get into trouble and he didn't have any trouble with his nose. It is running with a bit of pink to it, but nothing big. Once we got home we checked the beach forecast and decided to go ahead and go to the beach. We started packing up all our stuff and straitening up the house. I went to the store Friday night and brought pizza home for dinner. Logan ate like a little pig!
Please continue to pray for Taylor and his success against cancer. Pray that this time the sinus issues are resolved. Pray for all of our little friends who are still battling.
March 16, 2006 Day +1,079 Day #777 off treatment
We had a great day. Taylor didn't have any problems. He often feels like it is bleeding or running down his face, but it isn't. No one said anything to him about the little bit of blood you can see. I hope they remember what we talked about when it starts to stink! We tried to explain that he had surgery and why etc, so maybe they will be kind. He missed computer class yesterday and I just didn't tell him as I knew he would he upset, but Mrs. Robbie let him go with the group that went today, so he has no idea he ever missed. Thank you Mrs. Robbie! We have one more day of school and then we are out for spring break. Yahoo! I am so excited.
Logan pitched a fit today when Mrs. Joan tried to change him. He wanted to potty! He pottied twice for them. Yesterday while at home he took off and I couldn't find him. I finally found him in the least likely place, in the bathroom. He had taken his pants off and diaper off and was on the potty. He hat even peed in the potty. I was so excited until I stood him up and saw all the poop all over the potty. He had poop in his diaper and when he sat down he smeared it all over. What do you do? He was trying to handle the situation. I think he will get it pretty soon. I hope so, he can't get in the pool on the cruise ship if he isn't potty trained. He can play in the sprinkler like area and he loves that, but it will be nice to not have to bring all those diapers!! We will keep our fingers crossed!
Please keep Taylor and his continued success in your prayers. Pray he is NED forever! Pray for Kadin. Today is a big day for him. www.caringbridge.org/visit/kadingazzaway Pray for Cassidy as she has started dialysis. www.caringbridge.org/al/cassidytierce Also, Madison is inpatient again with pancreatic. www.caringbridge.org/visit/madisonbeck Guess who is home! Christi, way to go sweet girl! www.christithomas.blogspot.com
March 15, 2006 Day +1,078 Day #776 off treatment
We had a great night. Taylor never did nap yesterday. We have no idea how he stayed up after anesthesia, but he did. He laid around for a bit, but he got up and stayed up. He played Candy Land, puzzles, and memory all afternoon. At about 9:30 we all went to bed. Logan never napped, so he was gone in no time. Taylor piled up in our bed, he has to sleep propped up, so I kept him with us so I could keep my eye on him and his finger out of his nose! It itches and he wants to pick it, but he can't. He had not wanted any pain meds all day, but asked for some Tylenol at bed time. I think he wanted it for the taste, but I gave him some. He was literally asleep before I got back from putting the syringe up! He was out like a light and barely moved all night. I took some Tylenol night time cough meds and I too was soon out like a light.
Logan woke up at about 6:30 and I just could not move yet, so I threw him some milk and toys and he played until 8:00. Taylor was awake too, but he laid in bed and watched cartoons. There was no blood on him when he woke up, but not 5 minutes after he got up he was dripping. It is going to be hard to keep him from being wild and rough, but even harder to keep him propped up and not leaning over. UURGH!
He is carrying around a rag to wipe it with. Only the left side bleeds, you can definitely tell that side had the most work done to it. He is having no trouble eating. He had saved his fries from lunch yesterday and ate them late in the afternoon. He wanted more, so I cooked some real quick and he ate those. We went back to McDonald's for him and he ate 6 chicken nuggets and more fries. This morning he has polished off some cheese toast. He is coughing up some blood that is draining down his throat. We have had a health lesson as I tried to explain that his nose and throat are all one piece and it all runs together and he just keeps screaming why am I bleeding. He was not real happy. So, we have now added a cup of water to swish and spit with to his pile of things he needs to "get better". He has swished a spit a few times after some coughing spells. He is still real junky sounding in his chest. I don't know if he can have his nebs or not? Wonder if that dries out his nose? I guess I will call and ask if he keeps coughing this bad.
I looked back at how he handled this surgery in June and it is surprisingly the same. He right nostril bled more than the left, he only took Tylenol once and he had a Sonic grilled cheese as soon as he got home. He is a creature of habit!
Today was a good day. He has had no troubles with nausea, bleeding, sleeping, eating etc. We will be heading to school tomorrow. If he can't be some what calm and not bleed, we will stay out Friday, but I think he will be fine.
March 14, 2006 Day +1,077 Day #775 off treatment
Surgery day is here. I woke Taylor up at 6:45 this morning. He did his Nebs and put his shoes on. He wore his air plane pj's to the hospital, so there was no dressing to do. We left around 7:30 and got there right at 8:00. We were signed in and ready to go to CT by 8:15. His CT appointment was at 8:30, but we were in and out by 8:22. Things were looking up. We went back to the OR waiting room where we sat and sat. It was about 10:00 when we got called back. It wasn't too bad of a wait though. Both boys and a little girl had a great time playing hide and seek. Who would have thought a few years ago that Mr. Taylor would be so eager to play with a perfect stranger? It was funny to watch them peak while they counted and count wrong, it was cute!
Once we went back to the room both boys took off on bikes. I don't know how those nurses work in that noisy place. Logan was on a bike just like the one Taylor used to ride when he was on treatment. Boy, we would have been in trouble if it had been Logan back then. He was having no part in being pushed. He wanted to be in control and he was going as fast as he could and he didn't care who was in the way, he was coming through. Connie, the anesthesiologist came in and checked him out. She gave him the all clear to be put to sleep. We gave him the first of 3 squirts of Afran to help with bleeding and open up the sinuses. While we were waiting on the 10 minutes between each squirt to pass another anesthesiologist came in and it was none other than Dr. Long the guy who refused to put him to sleep back in the summer. I think all of our hearts hit the floor when he said, "is that his normal cough?" He listened to him and said he sounded great. He sounds no different than he ever does, but whatever! He introduced himself like we had never met, but I know he remembers that wonderful day. He probably made notes in the chart to just clear the kid and the folks the heck out of the hospital. Anyway, it was not long in fact he didn't even get all 3 squirts in before they came to get him. He got to ride his bike back to the OR. He was so busy gathering toys this morning that he forgot to get night night and Bozo. OOPS! He did just fine without them. He did cry when he realized that we couldn't go with him, but he did great.
It took about 45 minutes to do the procedure. Dr. Hill came in and said that his left cheek area was real full and he had to clear it and the back sinuses, but the rest were fairly open and didn't take too much work. He said all went fine. No strenuous activity for 2 weeks and return to school late this week. We are being cautious with that seeing as "school" for him is not real school and his gym time is very strenuous. He came back in the room around 12:00 and rested some more. He was so big. He told us it was scary, but he didn't cry. He told us there were lots of people he didn't know in the room. He watched cartoons and wanted to eat, but couldn't until he got home to be sure he didn't throw up in the car. Finally, around 1:00 Miss Libby, his nurse, took his IV out and let him go home. He had a big wad of cotton taped to his nose as it was bleeding a lot. He looked like he had a mustache. Logan kept asking "whats Bubba got?"
Taylor got on the couch and watched cartoons. He did not bleed much until he got up and started to play. He was doing puzzles and I think the bending over was not helping. He kept a rag by him and took care of it most times by himself. He ate an entire grilled cheese and chocolate milk shake. He can not go to ball practice at least until next week. He will be mad when he figures it out. He complains when it is time to go, but he loves it when he gets there. SHH, but Guh and I are thinking about taking them to the beach this weekend, so that will make him feel better. There isn't much open due to the hurricane, so it will be low key enough for him to go. Besides he is happiest just sitting in the camper playing games. We will see, but I haven't mentioned it to him just in case it falls through.
I had my own Dr. appointment today. All went smooth and quick. I have never been in and out so fast. I came home to Taylor up and playing with his soldiers ALL OVER the living room floor. We will be home tomorrow, but plan to return on Thursday if all is going well. He seems to be great right now! Thank you all for your thoughts and prayers today. It is so great to know that you all still care and follow his progress nearly 3 1/2 years later. Please keep him in prayer and pray that this time the surgery works! Pray for all of our dear friends both young and old who are fighting their own battle.
March 13, 2006 Day +1,076 Day #774 off treatment
Happy Monday! Let me start with the important stuff first. Taylor will go to Children's South at 8:00 in the morning. He will be seen by anesthesia at 8:15 (pray for an all clear on that) and he will have a CT at 8:30. I still don't know why he has to have another one since he just had one. I know they said it was because Dr. Hill uses a different kind of CT, but what's the difference? Our friend, Malia, Will be Taylor's nurse and will take him back to the OR. It is sad that he is so used to just being whisked away all by himself. He is older now and may not handle it as well as he has in the past, so I am glad that Malia will be there. He doesn't know her well, but he has seen her enough to half way know her and I will feel better having her with him. I must say I am a little antsy about it. All the major stuff he has had and this "little" thing has me nervous. I just hope it helps for longer than 6 months this time. Bless his heart, he has been through so much. Please pray that he comes through the anesthesia and the actual procedure with flying colors. Pray for Dr. Hill as he works on our baby. I have my own Dr's appt. at 3:00, so I will update as soon as I am home and able to.
As for today, it was fine. We had school and everyone was good. Logan isn't feeling real hot, but he stuck it out all day. He was so excited to go to Nanny's today. Speech went fine as well. Logan and Taylor played outside at Nana's before we left and I had to chase Logan to get him to leave. By the time we all got into the car we were all hacking like a bunch of smokers. We sounded awful! It was kind of funny! Guess you had to be there.
Taylor had ball practice today. He did pretty good. Logan was real good. He sat in my lap for a long time. He got up and gathered sweegum balls and them tried to hit them with his bat. It was funny. After practice we met Gam maw and Paw Paw for dinner.
We are now home where we are waiting out more bad weather and where Taylor and Logan had yet another bath. We are about to head to bed and get rested for the big day. I do not know how much school Taylor will miss. Hopefully, not a lot. We are not looking forward to him "stinking" again.
Please pray for a smooth day tomorrow. Pray for no problems. Pray that this works and helps his sinus issues. Pray for all of our friends who are battling some sort of illness or injury.
March 12, 2006 Day +1,075 Day #773 off treatment
We went to get the boys around 10:00. Taylor played ball outside with Daddy and Paw Paw and he used his new bat and did great. He was knocking the fire out of the ball. Logan had to have another bath (they got one last night). He had been in the sand box all morning. After Taylor got tired of playing ball we went to Don Don's for lunch and let them play in the play place. Logan still wouldn't go up in it. Jim climbed up the slide and when Taylor came around the other way to slide down, he said Boo. Taylor took off running back down. It was funny! We rounded the kids up and headed home. I did some of the cleaning I was so eager to do when I got up, but soon lost the urge! Logan was piled up in his bean bag watching Thomas. He is so tired! Taylor hit a few more balls then came in to get cleaned up for a birthday party. He had so much fun at his buddy Bryce's house. They jumped on the trampoline and in the bounce house for the entire time. He and Logan have had 3 baths in the past 24 hours. Summer is going to kill us. We will have to go for a swim every night before bed, that counts as a bath, right?
Guh was at our house when we got back from the party. We jumped on our trampoline. Guh and I looked like fools, but we took turns bouncing each other and that, my friend, is good exercise! Jim and I took advantage of Guh and went to Wal-mart while she was here.
It was a fun day for Taylor and I. Logan is starting to get the allergy/sinus crud too, so he isn't feeling real good. He took a long nap this afternoon, but was up for more outdoor fun when he got up.
Please keep Taylor in prayer. Pray that he is cured forever. Pray for Amber, Cam, Cassidy, Kadin, Colette, Davis, Madison, Lenzie and the others.
March 11, 2006 Day +1,074 Day #772 off treatment
We had a busy day today. We went to the sporting goods store and bought Taylor a new glove and bat. He was having a hard time squeezing his glove and his bat was too heavy. It took a lot of looking to find a 12 ounce bat, but we found one. We also got some little rings to stack on the handle to make him choke up. We went to Gam maw and Paw Paw's to play for a while. Taylor stayed until he had to go to practice. Jim and I went home and put Logan to bed and then cleaned out the garage. Well, I say we cleaned it. We worked for hours, but it is still a mess. We have a yard sale pile and a garbage pile that we are still working on. In the winter we are bad to just throw it all in and go and then spring roles around and we have a mess. Anyway, we left to go to practice, we took the jeep with no roof. The kids thought that was cool beans. He did pretty good at practice. He hit a few balls and even caught a grounder. Logan had a good time too. He tried hitting on the tee. He did accidentally hit it a few times. He tried to throw a ball over the fence, but it didn't make it and came back and hit him in the head. Ouch! He cried a little bit and then tried again, goofy!
After practice we got Taylor's uniform. He was so excited. It is maroon with a snake on it. He is a Timber Rattler. His pants were the smallest size and swallowed him whole. He will be 10 before he can wear those pants. That's okay, he can still wear the same pair he has worn the past 2 years. My teeny baby! The boys spent the night with Gam maw and Paw paw. Jim and I went to eat and to get me some sinus meds. Yes, I was the one who past it on to Taylor and if he feels half as bad as I did last night, God bless him.
March 10, 2006 Day +1,073 Day #771 off treatment
Welcome back to Friday. I am so glad, it has been a long week though nothing really happened. I guess just Taylor feeling bad kind of drug it out. Anyway, he seems to be 100% again. He didn't want breakfast this morning, but that isn't unusual. He likes to be up for a while before he eats and he doesn't have that kind of time before school, so lots of days he doesn't eat. He and Logan are fighting as usual, so things are fine here. Logan has a cough this morning too. Taylor's nose is running still, but it doesn't seem to be as thick as it has been, so maybe these meds are kicking in. I didn't have time before school to irrigate his nose, so he is about to be real mad at me when I tell him it is time to do it.
Taylor has ball practice tonight at 6:30. He missed the other day as we didn't get a schedule and didn't know we had practice. Oh well! I hate that he missed and I didn't even tell him or he would have gone bonkers, he can't stand to miss anything. Thank goodness, Daddy will be here for this one and I will sit it out. I should send Logan just to give him a since of what practice is like for me with both of them. However, he would never go for that!
Well, we had a change in plans. Taylor wanted to call Gammaw, so we went to dinner with them before practice and since we all rode together, we all went to practice. It was fun and Logan did great. We had another practice game. Taylor hit a few foul balls and finally got one into the in field. He got thrown out at first. We did not have "outs" in the pee wee league, so it kind of threw him when the coach sent him back to the dug out. It also threw him when we got our 3rd strike and he was on deck and didn't get to bat. He will have to learn. A ball was hit out to center field and though it went right between his legs he did see it coming and head for it. At least he didn't let it just roll on by because he was playing. He is getting better. He is the smallest one on the team and as wild and wooly as he is he is not as wild as the big guys that have been to "real" school, so he gets a little intimidated, but he likes it.
Kadin is doing somewhat better. Praise the Lord. He did not have to start dialysis as he started peeing non stop:) He is still not completely out of the woods, so please keep him in your prayers. Cassidy is having a procedure today to drain some fluid around her lungs. This could cause her not to be able to breathe on her own after the procedure and send her to ICU. Pray that the procedure goes smoothly and that she comes through with no complications and can return to her stem cell room. Christi still has low counts and her and mom are still separated from her dad and sister. I know this is very hard on all of them, so keep them in prayer. Keep little Cam in your prayers. Pray that his days are as pain free as possible and that his mom and dad have the Faith and strength to get through the days ahead.
I have since learned that Cassidy did have some issues this morning and is in ICU on full ventilator. Her heart stopped beating and CPR had to be done. They will not know what damage was done for a few days. Pray that she can overcome this and get back to room soon and be on her way to recovery. www.caringbridge.org/al/cassidytierce
March 9, 2006 Day +1,072 Day #770 off treatment
Well, go figure. Here we are at home with two playful boys. I think Taylor is milking it. He woke up around 8:00 and I told him he could stay in bed as long as he wanted. Well, I started to get worried as he stayed in the bed for a long time. I went to check on him and he looked so sad. When I asked what was wrong he said he didn't want to stay in bed and I asked why he was in bed. He thought I said he had to stay in bed. He jumped right up and asked for oatmeal and ate most of it. He has been a little slower than usual and has an awful cough, but no fever. I did the irrigation on his nose and it was atrocious what came out. He has to feel better. He has not gone back to the bathroom, so maybe that was just a coincidence.
It is now mid afternoon and Taylor is still feeling fine. He ate some chicken for lunch. We got his Omnicef picked up and the first dose is in. His Medicaid ended in February and this was the first med we paid for, ouch! That's okay, we have now joined the land of the normal! Logan is in bed and Taylor is watching cartoons. I have taken a break from Mount washmore to update. We are just hanging out and waiting for the severe weather to hit later today.
Well, the bad weather was a bust, thank goodness. We just had some rain and that was about it. We just hung out and watched Idol. I was disappointed in the guys that went home. Oh well. Taylor and Logan destroyed Logan's room. It was a mess! Now that all of that is cleaned up and put away we are back to doing nothing. Logan is in bed and Taylor is building a puzzle while eating a nutty bar and cookies. He ate a lot of mac and cheese for dinner. He seems to be back to normal. His nose is barely running. I don't know if it is the irrigation or Omnicef, but I don't really care as long as he feels better. We will go back to school tomorrow. He was royally ticked off at me today for not letting him go. I mean so mad he refused to take his meds. Goofy thing!
I have just read the most heart wrenching and uplifting update ever. You have to read it to understand how it can do both. Our dear NB friend, Cam, from Florida is at the end of his journey. We do not know how long he has left, but it will not be long. He is such a wonderful little boy and he could be nothing but wonderful with Erik and Michele as parents. Please stop by his page and leave them some kind words. www.caringbridge.org/fl/camspage Don't forget to keep Amber, Kadin, Madison, Lenzie and all the others in your prayers as well. There websites are listed below.
March 8, 2006 Day +1,071 Day #769 off treatment
Taylor woke up cool as a cucumber, but didn't seem quite himself. He wanted to go to school, so off we went. He played fine in the gym and he did his work okay. He finished his work and instead of coloring he put his paper in his cubby and put his arms in his shirt and I could see his little lips chattering. He didn't feel all that hot and the other teacher was cold, so I thought maybe it was nothing. He asked at snack to go home, but I thought he could tough it out. He didn't eat any lunch, but he played fine on the playground. We headed for Guh's after school. I had a dentist appointment. Taylor asked if he could have some chicken nuggets, so we stopped at Don Don's. He played in the play thing and took a few bites of chicken. Logan screamed like a little girl every time he got near the play thing. He is a chicken when it comes to those, but that is the only thing he is afraid of! After lunch we went on to Guh's. They rode their cars out there for a while. Guh took them out while I was gone, but when I got home Taylor was on the lounge chair on the deck all covered up. He was freezing cold, so we took his temp and sure enough his temp was back. We headed home per his request. I called Dr. Hill on the way and they agreed to call him some meds to keep him from being miserable until surgery, but surgery will not be cancelled since the surgery will fix the problem. He has a 10 day supply of Omnicef, but will only take it until Tuesday and we will go from there.
He had a mooshy case of the bathroom blues a few times and his fever persisted through the night, so we called Joy to tell her we have caught the bug. I think he has a touch of both going on. He still will not eat anything. He did perk up towards bed time and play. He and Logan danced like crazy folks while Taylor Hicks sang on Idol. Too funny!
Please pray that Taylor only has a sinus infection and a touch of a tummy bug. Pray it is easily fixed on Tuesday and gone for good. Pray for Kadin. He is still in ICU and it was found that he does not have pneumonia, but something worse. His family can not touch him or talk to him much for fear of changing his stats with stimulation. Please pray for this family as it is a very touch and go situation right now. Stop by to leave a message and get more info on what the infection is. www.caringbridge.org/visit/kadingazzaway Also remember Cassidy as she continues to fight www.caringbridge.org/al/cassidytierce Lenzie is having a CT tomorrow due to some falling and clumsiness. Pray that all is fine on the scan. www.caringbridge.org/visit/lenziebutland Pray for amber who is in pain with this round of chemo as well. She just can not get a break. www.caringbridge.org/al/amber Pray for Madison who got chemo yesterday and was a big girl at clinic. Way to go Madison!! www.caringbridge.org/visit/madisonbeck
March 7, 2006 Day +1,070 Day #768 off treatment
Wow, look at the number of days past transplant. In a month we will be at day +1,100. That is awesome! Speaking of transplant. I need some prayers for some friends in transplant right now. Kadin is still in ICU with pneumonia. www.caringbridge.org/visit/kadingazzaway Cassidy is on the transplant floor and is needing platelets 2 or 3 times a day. That is a lot and platelets are very hard to come by. If you are O+ and CMV- and can give please call the Red Cross and give for Cassidy. You can get more info or leave her some encouraging words at www.caringbridge.org/al/cassidytierce
Today was a normal day. We went to school and played on the playground. Taylor acted fine and ate great. We got home and he was so snotty and coughing so I gave him some Benadryl. It wasn't long until he was almost asleep sitting straight up. He got on the couch and laid down and I touched his back and he was running fever. It was 101.5, so we added Tylenol to the cocktail of meds he took. I am sure it is sinus infection causing the problem, but it is still scary. He ate a bowl of noodles even while feeling so bad. He has said his tummy hurts. I am not sure if it is full as he ate a lot of lunch then the noodles and a snack too. He may be eating because he thinks it will stop his tummy from hurting. I don't know. There is a stomach bug going around and several of his class mates have been sick with it and other fever viruses. I hope he doesn't get those. If he does, ya'll remind me that it is going around and don't let me make myself crazy! Now that Logan is up, he seems to be more active. They are playing and fighting as normal. I made an off handed remark that if his fever didn't go away he could stay home tomorrow. He said, "my fever will be gone, I will miss my fwends if I don't go". I hope it goes away. I will miss my pay check I don't go!
March 6, 2006 Day +1,069 Day #767 off treatment
Today was a normal day. We went to school where Taylor was good, yahoo!! We went to the playground and played and of course Taylor loved that. After school we went to Nana's to drop off Logan. He hasn't been in 2 weeks, so he was very excited! Taylor did okay in "peech". We have been going for 6 months and he can't even say speech. His Medicaid ended last month, so we are back to paying for his meds, Dr. visits and scans as well as the speech classes. I will say that it kind of sucks as we haven't had t pay for it in so long, but at the same time it is great. It is great because we are back to normal. There is nothing left of his cancer days. I have the paper work to fill out for scholarship funds for speech, but we will still have to pay about $40 a week for the classes even with the scholarship. He better get on the ball and start learning, I can't afford that for long!
He will have surgery on Tuesday, March 14th. They will call us on Monday to give us a time. He may have to have another CT scan. The scan that Dr. LaRussa ordered is not the kind Dr. Hill needs to do the surgery. The nurse did not know if he would need another CT before surgery or not. I do not see what it matters, he still has the one he took in June before the other surgery and we know it is packed so what is the big deal? I am not the Dr, so I guess I will wait until he calls to let me know what to do.
Once we got home I cleaned out my car and the boys played outside. Logan didn't get into trouble this time, but he had a blast. We had to get daddy an appointment to get his window fixed. I don't know if it is the jeep window and how straight up it is or just his luck, but it seems that every week he has a new hole or crack in his windshield and today it finally took all it could take. Oh well, what is a new window in the grand scheme of things?
Well, once again the news was rather hum drum today. I do want to ask you to check on some friends. Sweet Kadin has come down with pneumonia and is in ICU, he has just recently had his transplant. www.caringbridge.org/visit/kadingazzaway Madison went to clinic today and will start new chemo. www.caringbridge.org/visit/madisonbeck Pray for Amber who just can not get rid of the pain. It is bad enough that she has to be sick from all her chemo, but to add pain to it is just awful. www.caringbridge.org/al.amber Christi is in Philly for the long haul, she has very low counts and needs to stay close. www.christithomas.blogspot.com Bailey is waiting on his counts to allow him to harvest some cells and get to Philly for MIBG therapy. There are so many more kids that need our prayers. You can find lots of them at www.sharethelove.org Please pray that Taylor is NED forever and never again has to fight cancer.
March 5, 2006 Day +1,068 Day #766 off treatment
Well, yesterday's low key day turned into an exciting night. I heard Taylor crying at about 2:30. He has had several bad dreams the last few nights, so I assumed it was that. He told me he couldn't feel his legs. He was freezing and was in a ball and I think they were asleep. I stretched him out and covered him and he said he was fine. I could still hear him moaning, so I went to check on him again and he was burning up. I am quite sure it is sinuses as he has just gotten a green snotty nose in the last day or so. It is still scary. I moved him to our bed where he lay and trembled until about 4:30 when he finally stretched out and slept peacefully. He woke up cool as a cucumber, but he had wet the bed. He hasn't wet the bed in ages and he wets my bed. Oh well. I had given him some drink when he took his Tylenol.
The boys went to Gam maw's for a while. Logan has finally given her a name. Mee maw. He is so funny! Now Taylor is saying Mee maw too. He is a little dare devil. He took his bike to the top of the drive way and into the street. (Jim was behind him, but wanted to see just what it was he was trying to do). He got in the grass and flew down the hill. I tell ya, Logan is going to kill us.
Once again, Taylor has been outside and hitting. Today he has been on the ball. He hit about 33 balls. He is going to be a good hitter after all. Logan is again ticked off that he is in bed, but he was so tired!
Today is another slow day. I am washing more clothes, it seems they never get caught up. It could be that Taylor wore 3 outfits yesterday, hmm...
Well, tomorrow is Monday again. We have speech tomorrow as usual. It looks as though the surgery will be March 14th, but I don't have a time yet. I will keep you posted.
March 4, 2006 Day +1,067 Day #765 off treatment
Saturday, hurray! We went to breakfast this morning then the rest of the day was just hum drum. We went to the grocery store and then home to clean up and do nothing. We played outside a good bit today. Logan had a blast and was mad as an old wet hen when we brought him in to take a nap. He was filthy!!! Taylor was pretty dirty himself. He practiced hitting with Jim and he still can not hit it. I don't know if he is afraid or what.
Again, there is nothing to tell today. It has been absolutely normal. Please pray that our days remain normal and are never again consumed by cancer. Pray for those that are in remission to remain that way and those who are not can get there. Pray that this is the year that a cure is found!!
March 3, 2006 Day +1,066 Day #764 off treatment
TGIF! I am so glad it is Friday even though it was an awful Friday. I tell ya, some folks just wont give up until they make a person so miserable. Well, I must say they have succeeded and can give up now. As bad as the day started, I put it behind me and went on. I refuse to let it get me down. My child has been to the edge and back and if we can survive that we can survive anything, so Dear Sir you will not beat me down! I know that makes no since to any of you, but it does to one person!!
Anyway, moving on.... It was another pretty day all though much cooler. We went to lunch with Christian and Temperance today. The kids and I both enjoyed that little change in pace. They came over to play until we had ball practice again. Lucky for me, Jeanna was able to watch Logan while we went to the ball park. It was a good thing as they surprised us with a practice game. We were there in the cold for 3 hours. Taylor hit a ball! He hit it pretty good too. Of course there isn't a fast bone in his body and he got passed by the kid that hit after him. It was so funny! Once again, Jim got there at the last minute, but he was just in time for Taylor's last at bat. He struck out that time. This year it is more exciting and nerve racking. We had kids running back and forth between 1st and 2nd base not knowing which way to go. It was so funny!
After practice we went home and hung out. We just watched TV and played. It was a low key night. I need to be at the grocery store, but no one wants to go.
Nothing much to report here. Please pray for all of our friends who are fighting. Pray that Taylor is cured forever. Pray for those who are missing a loved one.
March 2, 2006 Day +1,065 Day #763 off treatment
Hello again. It is Thursday and it is beautiful outside. Taylor has been outside all afternoon. I wish it were like this all the time. It is just perfect outside. Taylor had ball practice today. It was so pretty that a bunch of teams had that idea. We practice at a local park and it was crowded today. Logan did pretty good. He sat and ate cookies and put pine straw in a bucket. Taylor did pretty good. He stays with the ball better than he did in the beginning, but he still isn't catching them. He is not hitting very good when he is pitched to, but if you put it on the tee he will tear it up. He never misses off the tee. Oh well, he is learning! Jim got to the last few minutes of practice.
I got home just in time to go with Gam maw to a Pampered Chef party. It was fun. I got home to both boys still up and full of energy.
March 1, 2006 Day +1,064 Day #762 off treatment
Here we are at March. I still can not believe how fast the days, weeks and months just fly by. That is good since we booked our vacation for September. It is only a small difference in a cruise prices and land packages, so we will be hitting the seas this fall. It is also Taylor's birthday present. He had wanted to go to Disney in December for his birthday, but he has changed it to "the boat". He has seen photos and heard Gam maw and Paw Paw talk about it and I think it peaked his curiosity. It is much cheaper in Sept. so that is why that time of year. However, I am not used to having kids in school and forgot all about him being in Kindergarten. OOPS! I called the school and several friends with school aged kids and they all said "it is only kindergarten". I wont say that isn't weighing heavily on my mind, but at the same time I feel better. One friend said it best. After all we have been through with Taylor, if he needs to miss a few days to go on a trip then so be it. I agree. He gets 9 unexcused days per semester and he will miss 7 in the first month. I was told to discuss it with the principal and since it is planned so far in advance it will probably be excused anyway. He may have to do work or something while on board, but that is fine. I also feel better knowing it is the first month and it will still be mostly review at school, so he will not be missing anything big. Oh, you all know me and it will eat at me until it is over with, but I think we will all live through it. I just can't believe I did it. I would never have let him miss school for a vacation, but I am not used to thinking about school. I guess maybe I need to get my priorities straight and I wouldn't make those kinds of mistakes! (inside joke) Hey, if it was not meant to be then God would told me not to book it. We thought long and hard on it and decided to go for it.
Taylor had a fantastic day today. He listened well and followed directions. We also only had 9 kids, so it was calm anyway. He is outside playing on the swing set. I am supposed to be doing laundry, but I don't want to, I would rather talk to you! I called Dr. Hill's office today. They had no note in our chart to call us. Go figure! Connie, his CRNP, finally called back. Guess what? He gets to have them scraped. Dr. Hill had said Monday if it didn't bother him then don't let it bother us, but after seeing the CT he said it needed to be done. He said there is no way he is comfortable, there has to be so much pressure. He doesn't complain because it has become natural for him, but it needs to be relieved. I agree. I have bad sinuses though nothing like his and I know how miserable it can be and his must be worse. Poor guy! It could be as early at 3/14 or as late as early April. She had to call and see if he could do it at South or if he had to go to the main Children's hospital due to his history. If he can do it at south then we can do it 3/14, but it will be harder to schedule the OR at the main hospital. I hope we get South and not just to get it over with sooner, but because it so much easier there. There is no APAS like at Children's and no rude anesthesiologists. It is just a lot easier there. I will keep you posted on how it goes.
Back To Top
February 28, 2006 Day +1,063 Day #761 off treatment
Today was a good day. Finally, it is sunny again and warm enough to get outside. Taylor got in trouble for not listening and had to come in the house. I know it hurt his feelings, but I think that is the only way he will learn.
I went to a party tonight, so it was another boys night around here. There is not much to report today. I did not hear from Dr. Hill today. I will call tomorrow and see what I can find out.
Please keep all out friends in your prayers. Pray that Taylor is NED forever!! Pray that we do not get pink eye, crud, stomach bug etc. that is going around.
February 27, 2006 Day +1,062 Day #760 off treatment
Here we are back at Monday. It was a loooong one too! It started off with us going to the ENT. We got there at 9:30 for our 10:00 appointemnt. We were told to get there that early. It was ll:30-ish before we got to a room and 11:45 before we saw Dr. Hill. Only to be told that he can't find the CT and without that he can not do anything. To say I was mad is an understatement. Lucky for us, Mrs. Katie was able to see us for speech at 12:00 and we didn't have to hang out 2 more hours to wait on our scheduled time. After speech we went to McDonald's for lunch. Taylor didn't want his usual nuggets, he wanted a plain burger. Of course the first thing he asked me for was ketchup on it. He then proceeded to lay french fries across it and then put the top bun back on and ate the entire thing. After lunch we dropped some stuff off at Nana's. While I was there I got a nasty phone call that sat my day back. Again, all I will say is the person knows who they are and they need to grow up and stop that. Anyway, we then headed to the airport to pick up Gam maw and Paw Paw. We decided to go early and go in rather than just do curb service. Logan loved watching the planes come and go. He never even asked to get out of the stroller. We went down to the baggage area to wait on them and Taylor and Logan took off running as soon as they saw them on the escalator. I think it was a big surprise. We then headed to their house and waited for daddy to come get us. I played Bunko with Ghen Ghen. I won too! Well, okay I won for the least amount of wins. That is kind of crazy, but it worked for me!
Dr. Hill's office is supposed to call me tomorrow and let me know what they find out on the CT. The only option we really have is to scrape again, but we will have to wait and see what the scan shows.
February 26, 2006 Day +1,061 Day #759 off treatment
Howdy. It is a low key day. Jim had to go into work for a bit and the boys and I just hung out. It did not matter that Logan went to bed at midnight, he was still up at 6:30. Needless to say, he is a pill. He looks awful with the carpet burn down his face, I am glad picture day was last week and not this week. Taylor went to see Curious George with Ghen Ghen and to Don Don's to eat. I know he is having a blast.
Nothing much going on. Be sure to read all the updates. We have had some interesting days lately. It is never dull here in Watts World. Tomorrow we are going to see Dr. Hill about Taylor's sinus issues. Of course, he is not snotty at all right now, but we are going anyway. It is coming I am sure. I hope he has some answers. I will update again tomorrow when we learn more.
February 25, 2006 Day +1,060 Day #758 off treatment
Hi all. How is your rainy Saturday going? We are fine. I am not sure that I ever finished the update from yesterday, but that is okay. Today was more exciting. Jim and Taylor went to pick up the TV. We can finally watch tv in the living room again. The kids thought it was pretty cool. Logan and I stayed home and cleaned up and got the living room cleared for daddy to work when he got here.
Ghen Ghen got here around 5:00 and we got ready for the ball. We were all dressed up in our cocktail attire. It was fun. We ran into all of our nurses and Dr's from the hospital as well as other camp parents. We were most shocked by seeing one of our old high school teachers. It was great to see her again, but it was awesome to see her bidding on stuff to help our kids. We bid on a dresser in the silent auction. We were out bid though. That's okay, it was fun to try. The dinner was wonderful as were our dinner mates. We sat with other parents and camps very own, Jennifer's, best friend. All the hospital staff was around us, so it was one big party. Taylor and Logan both made the video. Logan was on it feeding Copper, the camp dog, pine straw. Taylor made it several times. He was riding a bike in one photo, in the pool, and the very last photo shown was Taylor and his best buddy, Calvin, with their arms wrapped around each other. So cute and that is what camp is about, making life long friendships with kids that truly understand what you have been through. Now, I know that Taylor and Cal are too young to really know this, we us parents know what is happening and we are so grateful for camp. Our bidder number was 666. Hmmm..... We did all our bidding as 999. Just kidding! We all had a good laugh as we started bidding.
We actually left after dinner and went to the movies. We hated to miss the auction, but we knew we couldn't afford to bid and we took advantage of the sitter and went to the movies. We went to see Date Movie. Don't waster your money, it was awful. It didn't help that we were surrounded by teenagers. We are getting old I guess cause they were getting on our nerves so bad. They talked so loud before the movie and as soon as it started they decide they want pop corn and coke, so they are up walking around. They had cell phones ringing like mad.
We got home around 11:45 or so. Logan was up, but he is so attached to me right now that I know he refused to go to bed. He didn't cry when I put him to bed. Taylor got in bed with an arm full of toys. I didn't hear him play long and he was out. He has a movie date of his own tomorrow. He and Ghen Ghen are going to see Curios George.
February 24, 2006 Day +1,059 Day #757 off treatment
TGIF!!! It is 8:20 in the morning and I am already ready to tie Logan up. He has been in a fowl mood all week and I have had it. He has been put back in the be twice since 7:00. He has pitched a fit over everything. He is ready to go and it is way to early to leave and he pitched a fit. I could go on and on, but I wont. Taylor has been fine other than taking things from Logan and that just sets Logan off again.
We have no plans for tonight other than ball practice. Tomorrow will be fun for Jim and I. We are going to the Red Nose Ball which benefits Camp SAM. We went last year and it was so much fun to get all dressed up and see all the Dr's and nurses all dressed up outside of the hospital. Of course, we can not afford to bid on anything, but it is fun to watch the auction. Maybe we will win a TV? Just kidding.
Ball practice was okay. I really hate having to chase Logan all over. He can't just play right by me, he wants to run up into the woods or out on the field. He wants to go to the playground, but it is not a very kid friendly play ground. I know that sounds crazy. There is metal pieces hanging out of the chains on the swings. The monkey bars are way to advanced for Logan and that is what he wants to do. It is old and rusty. I guess I am being over protective, but I don't like that play ground. Anyway, he did okay today. He ran off a few times and pitched a few fits, but not too bad. He dumped all his gummy bears and raisins out to make a choo choo. I didn't care, he was quiet. Yes, he ate a few off the ground. Hey, he is the 2nd child, I let him eat it:) It will build his immune system! Taylor did okay. He caught a few grounders and made a few throws to the right and wrong person. He did more digging in the dirt and filling his glove with dirt and grass than anything. I told him it was going to hurt when the batter hot one his way and he didn't see it and it knocked him in the head. He hit a few today. He watched Jon rather than the ball. Once he started watching the ball he hit it. He will get there. He is trying and that is what counts.
Jim worked very late tonight. He didn't get home until 7:00. We had to go check on Pop and Pippy. Pippy had surgery and his wound was bleeding more than normal. Pop was having a breathing attack and went to the ER. Note he went with a cigeratte in his mouth. Hmm, could that be the problem? After that we went to dinner. We were going to go to Costco to get a TV, but they close earlier than we thought, so we didn't go. It was a bad luck night, we thought it best to go home. It started with Taylor jumping off the couch which he has been told not to do a million times. Logan thought he would give it a go and landed flat on his face. He has carpet burn on his left nostril and the right one was pouring blood. We got him cleaned up and Taylor went to his room. When we left to go check on Pop and Pippy, Logan fell on the sidewalk and cut his chin. I dropped his sippy cup and rolled under the car. It was dark and I couldn't find it, so Jim backed up so I could see. Yep, you guessed it, he ran over it and popped it. So, back in the house for another cup. Finally, we are on track. We pull into Pop's subdivision and a black cat darts across the road in front of us, we just had to laugh. On the way out, I dropped the new sippy cup down the stairs and it almost fell threw and we would have lost that one too. Luckily, it stopped and we were spared a screaming Logan. Dinner went okay, no major issues. We didn't get home until 9:00. I put Logan right to bed and he didn't make a peep. Taylor played very nice and Jim and I cleared away the old TV and cleaned up that corner. A lot of dust can pile up in a place you can't reach. Yuck.
February 23, 2006 Day +1,058 Day #756 off treatment
Good afternoon. How are you all today? We are dandy? We took Gam maw and Paw Paw to the airport this morning. There was a wreck on the interstate that was backed up for a looong way. We ended up having to get back on I59 and hit I20 and then hit I459. It wasn't bad though, we still got to school at 9:05. (school starts at 9:00) We had a good school day. Taylor had time out today. He was spitting at the table and he couldn't keep his hands off his friends at circle time.
We are now home where we are cleaning up. Taylor cleaned his room in record time today. He sure did keep it clean when he knew Noah was coming over and it literally took him 10 minutes after Noah left to mess it up. Last night we all cuddled in our bed and watched American Idol. It was fun, but I miss the living room TV. Maybe this weekend we can take care of that. While we were watching it Jim said, "Taylor must be 11 or 12" meaning Taylor Hicks who is from Birmingham must be the 11th or 12th guy to sing. Well, our Taylor turned around and said, "No, I will only be 6". Ha, too funny!
Logan has been a pill since he got up this morning. He got in big trouble at nap time. He leaned over the rail of his bed and spit each sip if drink he took out. His clothes, floor, and toy box were soaked. I was so ill.
We have ball practice today at 4:00. I just found this out at 3:06. Logan is sound asleep and it is so muddy, I am not sure I am up for this today. Oh well, off we will go in a few minutes. Taylor did pretty good. We actually went to the field today. He practiced at second base and center field. He didn't catch the ball, but he did good at staying with it and at least making contact with it before it rolled between his legs:) His trouble was throwing it. He doesn't look at who is throwing to and therefore it doesn't go the right way. We rotated positions and he still threw it to the kid that had been on 2nd base. I guess that was out fault for not saying the new names and they don't really know each other. Practice takes forever. We have the field from 4-5 and the batting cage from 5-6. He did pretty good batting today. He did real good off the Tee. He still has trouble watching the ball when Jon throws it. While he was waiting his turn in the batting cage, I over heard some of the kids asking how he got silver teeth. One asked how old he was and when he said 5, (this kid was 6) said, "wow, you already lost your teeth?" He is not bothered by it and he answered best he could. He said "I don't know" when they asked why there were silver. I wasn't going to explain it to a bunch of kids. I don't explain unless there is a parent giving me that "yeah, why are they silver" look:) By the way, I am not bothered by that look. Cancer is part of our lives rather we talk about it or not. I do not mind at all telling his story. The more people know about childhood cancer and that it can hit right here at home, the better. Anyway, he isn't bothered, but it is kind of sad too that he has to endure these questions and looks and he has a little while longer until he looses those teeth.
I guess tonight will consist of us piled up in my bed watching TV again. I don't expect anymore news worthy things to happen today, so I will update again tomorrow.
February 22, 2006 Day +1,057 Day #755 off treatment
Another picture day today. The boys didn't do more individual. I don't need many to choose from or I want them all. They did class photos again with their MWF friends. Logan doesn't seem to feel good today. He has not been himself. Last night he was a hoot. Mrs. Donda brought him a bad of tootsie pops. He put them ALL in his pocket, but some of them were opened so we had to peel them out of his pockets. He looked so silly running around with all those sticks hanging out of all of his pockets.
I had another candle party last night. Jim got in on this one and ordered a bunch of scents he likes. Thanks Gam maw for letting me use your house.
Today Noah is here. They are cracking me up. All I hear is "Hey Taylor" or "Hey Noah". They are being so good. They are even cleaning up after themselves and I didn't tell them too. Well, I did in the car, but it always goes in one ear and out the other, so I was shocked when they finished playing Thomas that they picked it up. They are not really into the same things, so they are spending more time deciding what to play than actually playing. Taylor is so excited to have him here that he is trying to show in everything in the house. He keeps referring to Logan as "my baby" when they get something that is his or that he broke etc. Logan liked having "Noho" in the car. He asked me who that was and I said Noah and asked if he could say that. He said, "uh huh, Noho". Too funny! Logan is not real thrilled that they are down stairs and he is in the bed. It took some convincing to get him in bed. You will never guess what I had to do to get him to sleep. Paint his toe nails!
Let me explain that. A few nights ago, I painted my toe nails pink. He watched me and begged me to do it. I used to paint Taylor's toes when he was that age. I only painted Logan's pinky toes. He has walked around all week saying "where's my pink toe?" When he took his shoes off to take a nap and he realized that his polish was rubbed off, he was mad. I told him I would paint his toes if he went to bed and said, "otay". He requested blue toes. I don't have blue polish so he has one green and one pink toe. He is happy now and asleep!
The boys finally found something they both agreed on, Kinex. They had a blast building and flying their airplanes. They did that for about 45 minutes. I had them clean up and come upstairs around 3:30. I had offered a snack earlier, but they didn't even hear me they were too busy. By the time they got up stairs they were hungry. They sat at the table and worked on a puzzle and had a snack. Logan was awake by then and wanted to join them. He had milk and cookies with "Noho".
I threw Logan when I took Noah to his Nana's. I pulled in the driveway and I asked if this was Nana's house and Logan told me "No!" When we left and went back home, Logan cried and cried saying, "Nannies house today".
February 21, 2006 Day +1,056 Day #754 off treatment
Back to school we went. Taylor was ready, I on the other hand wouldn't have minded staying in the bed. It was picture day, so we all had to look our best. It was class photos too, so even I had to get all fixed up.
Logan actually cooperated today. It took some doing and baby is in the picture, but he is not crying and his hands are not in his nose or mouth as was the case in the Fall. I told him to show her his teeth and he did by leaning forward and smiling this big ols smile. It was cute. I was busy convincing Logan to cooperate and didn't get to watch Taylor get his done, but I am sure he did fine. The group photo was fun. Two kids got to pushing and fell off the bench they were standing on and about pulled the entire back drop down. We had to regroup and separate the kids and go on. We finally got one. She said the oldest group is always the hardest. She says "say Monkey" and they can't just say it, they have to act like monkeys and make monkey sounds. It is crazy. We get to do it again tomorrow and then we are done.
After school we had several errands to run. I went to the bank and Taylor was begging for Burger King, he wanted a Sponge Bob toy. Well, I agreed only if he promised to eat the chicken. As I sat in that crowded drive through I just kept thinking about what happened last time I went to Burger King. Needless to say we didn't get on the interstate to go home, but instead took the back way.
I got home and put Logan to bed and I rushed to the bathroom, I was about to wet my pants. I hear this horrible sounding "moooommmy" come from Taylor. I come running down the hall, pants half on and half off, to see what was wrong. The TV, she is a goner. It is dead as a doornail , wont come on and he is devastated. I know Logan will have a melt down when he figures it out too. He doesn't even watch, but he wants it on. Oh well. I hope that Jim can tinker with it and see what is wrong, but I am guessing a trip to the TV store is on our agenda.
Taylor does have practice tonight. It is batting practice from 5-7. I think it is a come and go thing, so he will be waiting on daddy to come get him and take him. I am having a candle party at Gam maw's house.
Please pray for Taylor to be cured of cancer forever. Pray for Morgan who is in NYC as we speak having her quarterly scans. www.caringbridge.org/nc/morganbarnes Pray for Jake who has been transferred to the bone marrow unit at St. Jude and will start that process. He is only the 2nd child to have a transplant for his type of cancer. Lets cheer him on! www.caringbridge.org/la/jakeowen
February 20, 2006 Day +1,055 Day #753 off treatment
Happy President's day! Jim and Taylor left home this morning at 5:00 to make a very quick trip to the hunting club. They were back home by 10:00. Logan and I just hung out here at home until they got back. He was so sweet while it was just him. As soon as Bubba came home he was mean as a snake. He took a sip of drink and then walked over to Paw Paw's hand and just opened his mouth and let it run out. Evil little thing, he just does that stuff to be mean. We ate an early lunch and gave the kids a bath and put Logan to bed. He finally went to sleep about the time it was time to get him up so we could take Taylor to speech. I went to get him up and found him lying there on his back, eyes closed, knees bent up in the air. Pants around his ankles and diaper in the floor. His pants, socks and sheets were soaked. UURGH!!! This child is going to kill me yet! We had to quickly wipe him off and change his clothes and run out the door to get to speech in time.
Taylor did fair. He seemed last week to have the "t" under control, but today he didn't. He worked hard though and didn't goof off. He did have trouble putting his hands on his mouth and making it hard to understand him. He talks to Katie now quite a bit telling her things he has done, but he talks to fast and uses letters wrong that she can not understand. It is so hard to sit in the booth and know what he is saying and have to watch her try and figure it out and him get frustrated and give up. Logan couldn't be quiet. He had a ball that kept him quiet for a minute, but then he was bouncing it off the wall that separated us from Taylor. I took him out to the one day surgery waiting room and let him play on the slide. He had a blast.
After speech we went to Academy sports to get Taylor a baseball sticker. We have been looking for a month now and finally got one. It looks like a ball is crashing through the window of the car. He saw one at the ball park one day and got visibly upset that the window was broken. When I explained it to him he just cracked up and has asked for one ever since.
Once we did all that running around we came home and hung out. We thought Taylor was going to have practice at 8:00, but it got canceled since the field was so wet. I was rather glad seeing as it was 37 degrees outside.
Please pray for Taylor's continued success against NB. Pray for Bailey whose trip to CHOP has been cancelled for the time being. Pray that he can get his counts back up to where they need to be to proceed with MIBG therapy. Pray for Christi who is finally at home after a long trip at CHOP. www.christithomas.com Pray for Colette who has finished radiation and gotten hearing aids. She is about to scan again next week and this will determine if she is NED and what will happen next. www.caringbridge.org/al/colette Pray for Amber. She was supposed to come home today, but I don't know if she got to. www.caringbridge.org/al/amber Pray for Madison who is finally home, but still having tummy issues. www.caringbridge.org/visit/madisonbeck Pray for Kadin who had his transplant last week and is starting to feel really icky. www.caringbridge.org/visit/kadingazzaway There are so many more kids that I haven't listed. Kids we do not even know and adults too, that are fighting some sort of illness or injury that could use our prayers. Please pray for them.
February 19, 2006 Day +1,054 Day #752 off treatment
Well, I was half right. Logan started yelling for juice at 7:15, but he didn't get down right mad about it until 8:45, so we got to stay in the bed a while longer today. We had to hurry and get ready for church. We made it with not problems even after dressing Taylor twice. I had him all dressed when he decided he needed to potty. His shirt was too big, so he had to un tuck it to keep from wetting it, so we had to re tuck all 3 feet of it and it takes forever when he wants to "do it myself".
It was youth Sunday and our youth group did the service today. It was very good. I enjoyed it. Good job guys and girls! Taylor was not very quiet today. He was talking and rolling a car on the wood. After church Guh came over to play. We hung out at home for most of the day. We ended up watching the Daytona 500 just for lack of nothing better to watch. I have never been into Nascar, but yesterday I couldn't tear myself away from it. Jim got a big kick out of that. I think I am hooked. We ended up at the grocery store seeing as we had nothing to cook. Taylor and Logan both wanted to sit in the back. You can't let Taylor walk as he ambles along and bumps into stuff and gets in the way. Anyway, I had them covered with food and they were mad as a hornets. Logan let out a blood curdling scream and half of Wal-mart turned around and looked at him.
February 18, 2006 Day +1,053 Day #751 off treatment
Taylor ended up having batting practice last night at an indoor batting cage. He thought that was pretty cool. Lucky for me, Jim was home by then and I didn't have to go. I put Logan to bed early last night and just sat. He did not nap very well yesterday and he was very grumpy. I bought some drawers for his room and rearranged it and put all his cars and stuff in the drawers, it looks a little better. I think he may have been afraid. He begged for the light to stay on and when I turned it off he pitched a fit. I am not sure if he was upset with the room being different or if he knew it was early. Who knows, he slept fine once he went and was up right on time, 7:00.
Today the boys went on a little "guys day out" journey. I don't think they did much, but Logan was thrilled to be in the jeep. I met Guh, Nana and Mary for some "girls day out" shopping and dinner. I didn't get home until about 8:00.
I let Logan stay up until about 10:30, care to wager on his wake up time tomorrow? I say it will still be 7:00. We shall see.....
Please continue to pray for all the kids and adults who are on treatment. Pray that a cure can be found, soon.
February 17, 2006 Day +1,052 Day #750 off treatment
You will not believe the day we have had and it is only noon. Of course, Logan was up at 7:00 as always. Taylor slept until about 8:45. They played like angels all morning even in Taylor's room. Taylor put shoes and socks on Logan. They played power rangers and all kind of stuff. All that stopped when Logan picked up a toy that he got in his stocking at Christmas and Taylor was convinced it was his. He fell out in a fit just like last night and that landed him in his room where he has been for about 2 hours, cleaning. He came out to tell me that when he looked in his sock that toys was in it and it was his. UURGH! How do you explain that Santa left it and you are sure it was for Logan with out giving anything away plus not laughing that he said he looked in his sock? Anyway, he is over it now and is trying to clean his room, but he is playing and pottying more than anything else.
Logan has been crazy too. He wanted juice and I told him to bring me his cup. He took off looking for it, but never came back. I just assumed he started playing or his cup had juice in it when he found it. Taylor came running in to tell me Logan was in the water. I couldn't imagine how he was in the water, so I took off to see. He had brought the pop corn tin from Christmas into my bathroom and was standing on it and was trying to fill up a little bucket. That child is going to be the death of me. I took him out and dried the bucket. I left the tin in there and shut the door. I went on about my laundry. I saw Logan walking down the hall carrying the tin. I followed him to see what he was up to now. He used it to stand on to get some gum off the island in the kitchen. I put the tin on the stove and it will be going in the dump tomorrow! He wasn't done though, he went back to the bathroom, but had to find something else to stand on. This time he tried the scales, but they didn't work very well. He weighs 28 pounds though:)
I don't think I told you about Logan using the potty. Last Friday, the boys were playing. I heard them in the bathroom and they are not allowed to play in the bathroom as Logan will be in the toilet or pulling the shower curtain down. Anyway, Taylor was laughing and cutting up, so I went to see what Logan was doing. Well, we couldn't get mad, he was on the potty chair. He had taken his diaper off and sat himself down. Of course, his little parts were pointing straight out and not in the potty, but he did potty. Now since he was pointing outward he wet the floor, the wall and his shoes, but that's okay, he used it all by himself. He hasn't done it again, but we are working on it.
Taylor also had a "boy" moment last week. He called me into his room one night around 11:00. He was trembling and on the verge of tears. I had no idea what was wrong. In a very soft, scared voice he said, "My TT is hard and it hurts". I had to bite my lip to keep from laughing out loud. I asked if he needed to potty and he said no. I asked if he had touched it and he quickly said no. I told him that that happens to little boys sometimes and it is okay, it will go away in a minutes. I proceeded to tuck him in and all of a sudden he lifts the covers and looks and says in a much happier voice, "it went away, mommy". I tell ya, there is never a dull moment around here!
At this time, Logan is eating a hot dog and is about to be put to bed. Taylor is still cleaning his room. I am about to shower and eat lunch so we can go to Wal-mart when Logan gets up. I am sure more excitement will follow, but I will update you tomorrow. Have a good weekend.
February 16, 2006 Day +1,051 Day #749 off treatment
You want to hear something crazy? Jim and I started dating 14 years ago today. We dated for 7 1/2 years before getting married. We will be married 7 years in August. My My! Today was a pretty smooth day. We had school as normal. Finally, we were able to go to the playground. The kids loved it. Taylor played outside once we got home. We didn't have long to nap and play as we had our 2nd ball practice at 4:00. Taylor did much better today. He still has a problem keeping his eye on the ball when he is at bat, but he is doing better. He practiced both left and right handed and did better left handed. Logan did better today too. He played on the little car I brought him to ride. He dug in the dirt and had a massive poop. All part of the fun. We went to eat with Gam maw and Paw Paw after practice. Both boys ate like pigs, I guess all that outdoor play left them hungry.
Taylor is on the Rookie Timber Rattler team. We can not use major league names for some reason this year, so we have this odd name. I wonder what a timber rattler uniform will look like? Should be interesting.
Once we got home the fighting began. Logan took a little hot wheels trailer from Taylor's room and he is ticked off. He has yelled and pitched a fit about it for over 30 minutes and I finally just put him to bed. He fell asleep, but we woke him up since it was 8:00 and we knew he would be up at 6:00. The boys played nicer after that. I put Logan to bed at 9:30, we will see if that helps him sleep late tomorrow. We are out of school, so I hope it does.
February 15, 2006 Day +1,050 Day #748 off treatment
Today was a pretty laid back day. It was computer day for Taylor at school today. He loves that. They played some sort of airplane game and they had a ball. We came home after school and Taylor is outside playing. He is about to die to get on the trampoline. I wont let him unless I am with him. When Logan gets up I will go out. Logan has yet to jump. It has been so cold that he hasn't been out. He doesn't even know it is out there. Taylor was pretty good at school. He was told first thing this morning that it was warm outside and it would be a good day to go out and play, but if he got in trouble at school he would not go. He is having his buddy Noah over next Wednesday. He is so excited! This will be the first time he has ever had a friend over to play. Well, he has Christian come over, but they are just like brothers, so I don't count that.
There is not much to report and for that I am grateful. Please remember all the kids that I listed yesterday in your prayers. Add Morgan too that list. She will be heading to NYC on Feb. 20th for her scans. Pray she has safe travels and great results. That is also the date of her stem cell transplant 3 years ago. Way to go Morgan! www.caringbridge.org/nc/morganbarnes
February 14, 2006 Day +1,049 Day #747 off treatment
Happy Valentine's day!!
I looked back to see what we had done the last few Valentine's and it was not to exciting. We did cards for the nurses in 2003, 2004 we did the same. In 2005, they were both in school and at age 4, Taylor had his first school Valentine party. This year is the same. However, I did find humor in Feb. 19, 2003. It was the night Taylor stayed up all night and colored his belly pink with a marker. If you want to read it you can check out the archive page. It was so funny to go back and read it, I could just feel the frustration and humor that I felt that night.
It was party day at school. We had a great time though it was very busy. Taylor made some arts and crafts and had a good time passing out part of his cards. He got tired of doing it and left it to me. That was fine since I could do it much faster. I didn't put the "to" on Logan's, so it was much easier to do. He had a good time dropping them into the his friends bags. Taylor was impressed that Logan had made his own bag!
We left early to go to Taylor's clinic visit. We were a little bit late since the car in front of us inside the parking deck was going about 3 miles and hour, literally! The clinic is never busy in the afternoon, so it was fine. Just as I thought they wanted us to do lab work. I told them it had all been done last week, but she had to "check" anyway. I just had to laugh when she called me back up to let me know " your labs don't need to be repeated since they were drawn last week." DUH! Anyway, we waited for a little bit in the waiting room, but that was fine. Taylor was lounging in a big old bean bad and watching cartoons. We went back to weigh and he weighed exactly the same, 37.4 pounds. He was 1/2 inch taller, but I don't think one of the days was correct. WE went into a room and about 2 books later, Dr. B was there.
It was the best visit ever. All lab work was normal, all urine samples (to check for tumor levels) were normal, his diphtheria and tetanus titers were normal. That means that he is making antibodies to those and the immunizations took. He MIBG was normal. Dr. B said he was very pleased with Taylor's progress. That felt so very good to hear. He witnessed Taylor's jumping up and landing on his knees and said he was just a wild Indian. He did write that he had some bruising, but not worried. They heal up in a timely manner and that is what counts. He scared me when he pulled his pants down and said, "umm mom". I thought something was wrong. No, just his undies on backwards. He got a kick out of that as do we. He always wears them backwards so that he can see the picture rather than it be on the back. He is so goofy! We will do a CT and a bone scan on May 9th. That is only 3 months, but we are doing that since you are supposed to scan at the 3 year mark of transplant. His 3 year mark is April 2nd and that is too soon to scan again, so we will do 3 and call it the 3 year mark. I am not sure at that point how long we will go. You all know it didn't bother me any for him to do 3 months!
We went out to eat with Gam maw and Paw Paw. Logan brought a sack full of candy with him and played with it and kept himself quite entertained. The boys had a blast going through all their cards and goodies they got from school. I got a pair of Brighton earrings and key chain. I got a cookie co. cookie that said I love you. The boys each gave me a rose. I must say I didn't do very good for Jim. He got some sugar free candy from the kids and Logan got him socks. I let Taylor pick what he gave him and he said, "I am given' the candy cuz daddy will hate socks."
Please continue to pray for Taylor's complete healing. Please pray for Amber who is STILL in the hospital and in pain. www.caringbridge.org/al/amber Pray for Tina, our dear little angel friend, Austin's, mom, as the 24th would have been his 9th birthday. www.caringbridge.org/al/austin Pray for Colette who is 3 days away from being done with radiation and is waiting on the radomization leg of her protocol to see if she will get the antibodies or not. If you all recall, we didn't do that since the FDA had closed that antibody trial when we got to that point, so we went to NYC. www.caringbridge.org/al/colette Pray for Bailey, I have not talked to them lately, but he is due to be heading to CHOP soon. Pray for Cam who is rapidly IMPROVING after getting his MIBG therapy last week. www.caringbridge.org/fl/camspage Pray for Madison who has had some tests this week to see why her tummy is acting up again. www.caringbridge.org/visit/madisonbeck Pray for our newest friend, Kadin. He just had a stem cell transplant yesterday. Pray that those new cells start to grow soon. www.caringbridge.org/visit/kadingazzaway Pray for the other Tina, sweet angel Stanton's mom. Feb, 13th was his "angelversary" and the 14th would have been his birthday. www.caringbridge.org/la/stanton Keep the prayers coming for Miss Christi Thomas. She is back in CHOP with pain, but her "lumps" and eyes look much better. www.christithomas.com. She now has a blog, so check it out and leave her a message. There are so many others that need our prayers. Pray for all the sick kids and adults too. Pray for those who are missing a loved one. I failed to mention last week that a distant cousin of mine had been found dead of an over dose. Please be with his family as they deal with this loss. Brad was my age, so it was way to early for him to go. To Brad's family, we are praying for you all!
February 13, 2006 Day +1,048 Day #746 off treatment
Today was not the best of days. Those involved know who they are and they know that they were WRONG, but that's okay. I am over it and done with it.
It was a wild day, but it was a good school day Taylor got talked to, but not a big deal since we all know what happens when you make too big of a deal out of things like that. He told a friend at school who was being rather bossy to "get off your a-- and get it your self." We are not sure where he picked that up. It is not that we do not say naughty words from time to time, but we know we have 2 parrots in the house and we try very hard not too. Anyway, it was hard not to laugh and get mad all at the same time.
Tomorrow is a party day at school and that should be fun. We will be leaving school a little early to go see Dr. Berkow. It should be a quick visit since we have already done all the labs and all that. I am sure they forgot to take it all off the order for today, so they will try to make us do it again, but that is okay. Guh is going to pick up Lolo after school so that we don't have to take him with us.
February 12, 2006 Day +1,047 Day #745 off treatment
We had a very lazy day today. Logan did not ever throw up again, but we hung out at home just in case. He did have several loose diapers. One he even put his hands in and then walked up the stairs with both hands covered! What fun we have here in Watts World! We grilled some hamburgers and that was about the extent of our day. Guh brought Taylor home around noon and he and Logan played down stairs for a while. Taylor went to jump on the trampoline for a few minutes. It is just so cold outside. It was also a little wet and he couldn't do any tricks, so he got tired of it. Gam maw and Paw Paw called and said that they boys could spend the night with them. We drove over and dropped them off. We were all in our pj's. Jim and I were going to go see a movie, but there was nothing good playing, so we just came home and watched the Olympics.
February 11, 2006 Day +1,046 Day #744 off treatment
We had a busy day today. Well, not really busy, but we were not at home. We started the day by just hanging out and watching cartoons. Logan is into the Wiggles and he will say, "more song" when they stop singing and talk. We met Gam maw and Paw Paw at the Olive Garden for lunch. It was so good and I was so bad. I was down 2 pounds yesterday, bet I'm not this Friday! Oh well, it sure was good! We did a little shopping after lunch. Well, the boys did. Taylor got some Power Ranger stuff and Logan got some Thomas the Train stuff.
The plan all day had been for Taylor to go to a party with me and Guh then he would spend the night with her. He changed his mind and didn't want to go, so I headed to Guh's by myself. Just a few minutes after I left, Jim called and they were going to drop him off at Guh's, he had changed his mind. When I got there he said not to get his bags out, he was just playing for a while and he was going home to sleep. He played for a while and then looked at me and said, "you can get my bag, I am going to spend the night.". I went to get ALL his bags, he looked like he was moving in not spending one night. We soon left for the party where Taylor was very good. He liked looking out the window at the snow that was falling. Yes, we had snow in Alabama. It didn't stick, but it was nice to look at. We had planned to go to Wal-mart after the party, but it was so cold and Taylor didn't want to go, so we went back to Guh's. I half expected him to jump in the car with me, but he didn't. He waved good bye and he took off to play.
I went to get Jim and Logan and we went to the grocery store. Logan was so good. I am able to reason with him a little bit these days and it is great. When we first got there he wanted to play on the little car out front. I told him he could after we bought our food. He said, "otay". He then started to get ugly about not getting to sit in the back of the buggy. I told him he wouldn't have room for his milk if he sat back there, he said, "otay". He did real good until we were about half way through and he got mad. I opened a bag of gold fish and he was good the rest of the way. He was cracking me up. He would put his hand in the bag and say "where are you fish" and when he pulled it out he would say, "dere you are". He saw gummie bears at the check out counter and had to have some. He only eats the green ones which is funny to me as most kids want the red ones.
Our plan was to meet Taylor and Guh at out church this morning, but I had to call her at about 10:00 to cancel. Logan had thrown up twice. I am not convinced that he is sick, but there is a bug going around our school and I didn't want to risk it.
February 10, 2006 Day +1,045 Day #743 off treatment
What good sleep we all got last night. Logan even slept all night without wanting juice. You don't realize you aren't getting a real good sleep until you get one. I sure whish I didn't have to get up this morning, I could have stayed there all day.
We went back to school today. Taylor was so excited to be back. He really misses school when we don't go even on the weekends. I hope that feeling sticks when he moves to kindergarten in the Fall. Can you believe that in 6 months Taylor will be in kindergarten. Wow! Taylor was rather wild today. It is so great to know that he is healthy enough to act up, but it is also quite annoying. He did better than he has been in the past, but still rather wild. He did have time out in the gym.
We were not home long this afternoon before it was time for his first ball practice. He had so much fun and it proved he has over come so much. He was all boy and didn't need me at all. When practice was over he and all the others took off in the rain to the playground. The kids played on the playground for a bit before practice started. Taylor didn't know any of the kids, but it will be fun for Jim and I. There are 3 kids that we know there parents. One of which Jim played with in high school and they won the state championship. Taylor did okay. He has to work on keeping his eye on the ball and not what is going on around him. He hit one ball out of 900 that Jon pitched to him. One of the dads worked with him for a long time and he finally hit one with him too. He ran pretty good around the bases, but we all got a laugh out of his perfect jump OVER first base! It sprinkled the entire time we were out there. I have to say, Taylor has never played in the rain and he was really loving it. He did not want to keep his hood on, but he did. It helped the there were other mom's demanding that hats be on. Finally, it started to really rain and they quit. All the parents took off for the car and all the kids took off to the monkey bars.
Logan did pretty good. I had to chase him a few times, but he did much better than he did last year. He did not like his "toat" getting wet and wanted it off. We had to walk to the car and get his cup and baby and then he drove a dog crazy trying to cover it up with baby. He is so goofy!
We are now home watching our new Curios George video. It came with a free kids ticket, so we may go see the movie, Taylor loves the 3 episodes on the DVD he bought. It is Jim's late day, so I guess we will stay home all night. It is yucky out (AGAIN) anyway, so we might as well stay in. Taylor is spending the night with Guh tomorrow night. I will update again soon. Have a great weekend!
Please join us in thanking God for the miracles he has performed in Taylor's body. Pray that he has been cured. Pray for Morgan who will head to NYC on 2/20 for her scans. This is also her 3 year transplant anniversary. Pray for Cam, Christi, Colette, Lenzie, Bailey, Amber, Madison and our newest friend, Kadin. Also all the others who I didn't name. Check out www.sharethelove.org and you can visit tons of kids and adults who have some sort of illness or injury that they update about.
February 9, 2006 Day +1,044 Day #742 off treatment
Praise be to God! Taylor has yet again been declared NED. Taylor and Jim went to the Dr. this morning for the MIBG scan. As usual things didn't go as easily as planned. They had told us yesterday that all we had to do was get an arm band since the test was ordered blah blah... Anyway, when they got there they were told to sign to weigh and all that. None of that was necessary nor was it told to us. Finally, after telling the specific person who told us we didn't have to do anything today realized she did indeed say all we needed was an arm band and they were off to nuclear med. It is never easy on scan day. I think anxiety levels are high and it just gets hard to focus. It never takes long to get called back for an MIBG. He did great as usual and the test was over by 10:30. Jim called and I met him at Wal-mart to pick them up and get lunch while his jeep got new tires put on. We talked about the scan over lunch. He made the mistake of looking at it and his tummy was all lit up and it scared him so he didn't look anymore. I wasn't worried about that since I know the bladder and some fluids in the belly will light up, but I had wanted to see his legs since they had been so bruised. The more I thought about it the more I worried. I ended up calling Meredith. Rhonda is going to kill me when she finds out I already know the good news! We came on home and put Logan to bed. Taylor went out to jump on the trampoline for a minute. He looked way to healthy to be sick, so I kind of pushed it out of my head. Meredith called soon after that and said she was waiting on Dr. Vaid, the radiologist to read it and if she didn't call today not to worry it was just because he had not read it yet. It wasn't 10 minutes before she called back and said it was negative. Dr. Berkow has not read it yet, but he reads them with the radiologist, so I am pleased with the answer Dr. Vaid gave. With that being the only test we did all we have to look at next week is urine and lab work. I am not too worried about urine with a clean MIBG as the urine test it looking at tumor markers in the body and a tumor would have shown up on the scan.
We are so relieved to have this day behind us and not to have to do it again for at least 4 months. Dr. B will schedule that on Tuesday. Please join us in thanking God for another set of clean scans. Pray that Taylor has been cured! Pray for all the kids who are still fighting their disease.
Taylor got a call today from his new baseball coach, Jon. We will be meeting tomorrow at a local park to let the kids get to know each other and play a while. I am not sure when actual practice will be. I think we will be on the same team as a little boy of a guy who played with Jim in high school, so that will be fun. I will keep you all posted on his game schedule so you can all come out and watch.
February 8, 2006 Day +1,043 Day #741 off treatment
I forgot to tell you all some of the funnies from the last few days. Taylor likes to sit in the ab lounger and eat cookies. That is kind of hypocritical don't ya think? Logan cracked us up the other night. If you have gum you might as well just give Logan a piece no matter what kind. He had a piece of Dentine fire and it is pretty hot. He would chew it a minute then take it out and blow it like it was "stove" hot not spicy. He is a goof ball!
We left around 7:20 this morning. We made our traditional hospital day Sonic run. Taylor had is traditional grilled cheese. We didn't get to the hospital until about 8:20 due to horrific traffic. I really feel for all you folks that have to drive to down town B'ham daily!! We got signed in and I put the Emla cream on Taylor's hands for his IV. It just would not stick, so I had to ask Kenna to help us out. Much to my surprise she brought us press and Seal rather than a tegaderm. Pretty cool idea. She said it works great for ports too for any of you guys reading that still have a port. I didn't even ask for more tegaderms for next scan period. Angela from IV therapy didn't take all day to get there like last time. She actually helped us out. Taylor was not scheduled to get labs today, but Kenna and Angela (and me) saw no need in getting an IV today just for the isotope injection and then getting a poke in the arm next week for labs. She had Berkow sign for that to happen today. Thanks guys! So, he got his IV and as always Miss Angela did a great and quick job. It was relatively pain free and what few tears did fall were dried up with the mention of the treasure box. She drew his labs and Cynthia gave us the cup for his HVA/VMA urine collection. We went to the treasure box. He picked out a pretty cool wooden snake. I also got to talk to Mrs. Rhonda and she left herself a message to call me Friday morning with MIBG results as she knows I can not wait until Tuesday. Thank you Rhonda, I love you! Taylor was now done in clinic. We had everything done. Tomorrow he will have to go to clinic just to get an arm band, but that is it. Once he has that he can go up to nuclear med for the MIBG scan and then go home. Tuesday when we go all we have to do it see Dr. B, all his labs are collected, so it should be short and sweet. We went up to see Miss Tonya in Nuclear med. She let Taylor push his saline, isotope and heparin into his IV. For 3 years now I have taken a camera with me and never thought twice about it until it was too late. One day I will get a picture of his scan. Tonya took his IV out and we hit the road.
We went to the Paw Paw patch for some good ole country cookin'. Logan ate great. Taylor did fair. We then went to Guh's house for the afternoon. They got to watch the washing machine mad fix the machine. Taylor thought that was pretty cool. They played outside for about 5 minutes. I had told them 10, but Taylor was mad that his 4 wheeler wasn't going fast enough and wanted to go in. Suited me, it was cold! After Guh's house we met daddy for dinner and then went home and hung out.
Tomorrow is the big day. I am so ready for it to be over. We got a card from church to let us know that they were praying for us. Thank you so much! He is tired tonight, but I did wake him up and drag him out of the warm bed at 6:45. He also went full blast at Guh's all afternoon. Please keep him in your prayers tomorrow. The actual scan starts at 10:00 and will last 30-45 minutes. Please pray during these times. Pray that it shows no cancer at all and he can be cured of this beat forever. Pray for Cam who started his MIBG therapy yesterday. Pray for Amber who is still inpatient with a lot of pain. Pray for Colette who is doing radiation right now. Pray for Christi who is home now from CHOP and seems to be making some improvements. Pray for Bailey, I have not heard anything new, but he still needs his miracle. Pray for all the kids that I have not mentioned or do not even know. There are so many kids out there fighting. Pray that a cure is found soon!!
February 7, 2006 Day +1,042 Day #740 off treatment
Today was a pretty good day. Taylor did fair at school. He had a real hard time being still and he kicked a friend, but he listened better than he usually does. We are now home finishing up the last minute cleaning before my meeting here tonight. I am about to put the computer away and I thought I would update real quick before I do.
Tomorrow is injection day. Guh. Taylor, Logan and I will head to Children's at 8:00 in the morning. His injection is scheduled for 10:00, but I assume it will take forever to get IV therapy down there, so I am going early. The actual scan is at 10:00 on Thursday. Tomorrow is short and sweet, but right slap in the middle of school. We don't have enough time to go and then leave and get to the hospital and not enough time to bother going back after the hospital, so we will miss. We will probably go to Guh's house afterwards to play just for a change in scenery.
I will be sure to update Thursday. I don't think we will get results until Valentine's day when we go to the clinic to see Dr. B. However, you all know me, I will never be able to wait that long and I will have to call him! I will post what we do know, so be sure to check back Thursday afternoon.
Please be in prayer for this scan to be crystal clear and show NED!!! Pray that Taylor has been cured of this beast once and for all. Pray that his reactive airways have improved as well. Pray little Cam who has had even more progression over the last few days. He is in a lot of pain. He started MIBG therapy today, pray it stops the disease from spreading any further and that a treatment can be found to get him clean again. www.caringbridge.org/fl/camspage
February 6, 2006 Day +1,041 Day #739 off treatment
Welcome back to Watts World on yet another rainy Monday. Mondays are bad enough, but to be cold and rainy just adds to it. I went to bed with the news talking about snow and hopes of not having to get up and get out in the messy weather, but no such luck. We ventured out in the cold, dreary weather to go to school and speech.
Taylor had a very good day at school. He started off rather rocky in line, but I reminded him of Friday night and how he went to bed early after getting a spanking and he seemed to get the picture. After school we went drop Logan off at Nana's. He knows where we are going about a mile from her house and starts yelling, "yeah, Nanny's house today." Taylor and I rushed right back out the door to go to speech. We could have gone a little early today since the kid before us canceled, but Taylor was eating his snack and wanted to wait. He did great as far as his articulation went today. However, Mrs. Katie had to work hard to hold his attention and get his cooperation. I got a copy of his progress report through out the last 20 visits. I do not have a copy of his first test yet, but I will get one next week to compare with this one. Here is what this one said as far as scores. Based on the tests given his sentence structure meaning if I said, " point to the spotted dog with a blue hat" he could do it, was equivalent to a child the age of 6yrs and 6 mos, that is good. His word structure was that of a 4yrs and 2 mos. His expressive vocabulary (he is able to make you understand his needs etc.) was that of a 5yrs and 0 mos. This adds up to mean that he has age appropriate receptive and expressive language skills. That is the part that got him a 100% in language skills. However, his problem is in articulation. Some, just some, of the letters he substituted were l/y, k/t, w/r, b/v etc. those are just a few of the initial sounds. He also has trouble with medial sounds as well as end sounds. This is what landed him with a 61% in articulation. This means he has a severe impairment in articulation. His prognosis for improvement is good with intervention meaning we don't get to stop speech for some time. He does very good with on target cues. This means if she holds a flash card with a taco on it, he can say it correctly. However, if you asked him what he wanted for dinner and he casually said taco it would come out caco. He does not have good spontaneous control over his speech. This will continue to be one of his goals.
I know that probably made no since and was rather boring, but that is where he stands in speech. I find it all very interesting. I took a few speech classes in college and had thought about speech pathology as a major, but in all honesty, wanted to be done and took a quick and easy major. I should have stuck with it and I could be saving $56 dollars a week on speech:) Just kidding, he loves speech and loves to play with Katie. I would kill him, he gets so frustrated when I correct him or try to work with him, but he just goes with the flow for her. He needs time away from me just like I need it away from him.
Please continue to pray for Taylor's success against NB. Pray that Thursday's scan will be all clear with no questionable spots and that it reveals NED status once again. Pray for all of our friends that are still battling. Pray that those who are NED can remain that way.
February 5, 2006 Day +1,040 Day #738 off treatment
We got to sleep late without having to just tune out Logan. I was up at about 8:45, but Jim really took advantage and slept until 10:00. He went to get the kids and the house is back to normal. Toys everywhere and fighting going on! We have no plans other than to go to Wal-mart. I am saving that for when the game starts and hopefully it wont be too crowded. I could care less about watching it. Jim is outside putting the trampoline together. The kids are beside themselves with excitement. I don't know if he will get it all done today or not. I told them it was too cold to go out more than a few minutes if he gets it done. We got a big kick out of that. All of our cancer friends that we have been checking on from and Pennsylvania and in that area have written about getting out and taking advantage of the unseasonably warm weather, that weather being in the low 50's. Here we are telling our kids it is too cold to go out as it is unseasonable cold here and it is in the low 50's. That just cracks me up!
Taylor started his new sinus treatment today. Well, it isn't knew it is just a different method. We have been using Ocean mist spray, but we have changed to the Ayr bottle full of solution. It was a mess, but what a huge difference in the first squirt! I am thrilled about it and hope it will relive some of his problems without another sinus surgery. He had to lean over my lap that had a towel over it. I squirted the solution up his nose as he stood leaned over with his mouth open. After just one squirt a huge blob of green gunk starting coming out his nose and mouth. I know that is so gross, but he has to feel better.
Jim did get the trampoline done and Taylor jumped a little bit, it was just too cold. He went to Wal-mart with me and Lolo and daddy stayed home. We are now watching the super bowl just to see the commercials. I gave the kids a bath and found a bruise on Taylor's leg, one on his butt and one on his back. Did that make me worry??? You figure it out! I can not wait for Thursday to be over with. We do not go to see Dr. B until the next week, but I know they will call if there is any cause for concern. Jim is going to the actual MIBG scan. I hate that scan. I want to look at the screen, but at the same time I don't want to be anywhere near the screen. I will let him handle that one. He has gone to the last few and things have worked out fine, so we will keep it this way.
Please pray that Thursday's MIBG scan is perfectly normal and NED status remains. Pray that his urine and labs are normal as well. Pray for all of our friends who are still fighting. Pray for those who are NED to stay that way. Pray a cure is found soon!!!
February 4, 2006 Day +1,039 Day #737 off treatment
What a busy day! We all got up and got ready for ball try outs. Taylor was very excited and went dressed in full uniform. Of course, it was covered by layers of coats, toboggans and the like. I can not believe it has been in the upper 50 and 60's all month and the one day that we have to spend outside, it is 45 with 100 mile and hour wind. Okay, so I exaggerated a little! Try outs were the most unorganized mess I have every seen. I wont go into detail, but trust me it was a mess. We ended up taking Logan to Gam maw's, it was too cold for him to be out there. What was supposed to start at 11:30 didn't start until 12:30. Taylor did really good. He caught all 3 grounders that were hit to him. He didn't hit any of his 3 balls, but he had a good swing and was watching the ball. I imagine it is hard to hit a ball when your hands have frost bite! After his turn at bat we hit the road. We picked up Gam maw and Lolo and went to eat some lunch. Gam maw and Logan went back to her house and Jim, Taylor and I went to the mall. Taylor is his daddies child!! Taylor and I went into Stride rite just to kill time while Jim went in the sunglass store. He found a pair of hideous, chartreuse and navy shoes. He was begging for them. I told him no, we would would go to the Disney Store and look at Power Rangers. He told me, "no, I don't want that, I want those." (pointing to the shoes). I just had to laugh and yes, he got the ugly shoes. He is so proud, he almost ran over a guy when we were walking back to the car because he was looking at his feet!
The boys went to Gam maw and Paw Paw's house to spend the night. Jim and I went to see the movie Dick and Jane. It was okay, but not up to Jim Carey comedy standards. It was kind of dumb. Anyway, it was still nice to get out with no screaming or fighting kids in the back seat. We came home and took advantage of no kids again. We cleaned house! It is almost done, yahoo!
Taylor has had a great day and I know he is fine, but I still have my worries. I know it is all due to scan time and the many kids I know of right now who are not doing all that great. Please keep praying for Madison, Bailey, Lenzie, Sean, Kadin, Christi and Cam who has recently learned of his NB progression. www.caringbridge.org/fl/camspage It is just heart breaking to read about all the sadness and though we cancer parents are "trained" not to compare kids and situations it is VERY HARD!
February 3, 2006 Day +1,038 Day #736 off treatment
Well, we finally made it home. It has been a long day. We went to school where Taylor had to sit in the hall. He started his day awful and I told him to get out. He finally decided he better behave and he did much better. After school we went to get gas and ran home real quick to get an umbrella as the sky was threatening to let loose. We then headed to down town Birmingham to St. Vincent's to see Dr. LaRussa. We didn't wait in the waiting room at all, but we sat about 30 minutes in the room waiting for him to come in. Luckily, he has the coolest office in town and the kids were happy as pigs in the sunshine and never complained. We got Taylor's favorite room, the sports room. He played golf and basketball while Logan played with a Thomas train that was left behind.
Taylor had 99% oxygen in his blood, his lungs sounded fine, all the coughing is from gunk in his head not his lungs. That made me very happy. He weighed in at 37.2 pounds. Yahoo, he has gained 12 ounces since Jan. 11th. I can gain 12 ounces over night, skinny kid. I never even noticed how tall he was, but I doubt he grew much in 3 weeks. Dr. LaRussa can't look at the CT since it was done at Children's. He was going by the faxed report from the radiologist. I do not remember the actual names, but both the sinus behind the nose and in the cheek area were packed solid. There is supposed to be air in them, but his is too packed. He has referred us back to Dr. Hill, the ENT. We will see him on Monday, Feb. 27th. I hope that he will be able to fix it other than scraping, but I suppose we will have to do it again. Dr. Hill did say that Taylor's tubes, for lack of a technical term, are smaller than normal. We do not know if it is from chemo or just born that way, but we hope that he can fix it.
Tonight we are expecting more bad weather, so we are just hanging out at home. Taylor ended up in bed early. He has not listened very well and ended up hurting Logan. Tomorrow is try out day and we have tried to talk it up, so he participates. Right now it is all about getting him to participate rather than be the best kid on the team. I am not sure if that makes since, but hopefully it does.....
February 2, 2006 Day +1,037 Day #735 off treatment
We need big prayers for Bailey and B+ blood. We got an update on Bailey last night and things are not looking very good. He waited for hours yesterday for platelets and none could be found, they finally had to give him A. If you are B+ and CMV negavtive then please go give for Bailey Moore. You can call Life South and Red Cross to see which one or both that are set up for a direct donor for him. Bailey has no function in one kidney and only 80% in the other. This is causing him to not be able to get a strong enough chemo to hold him over until March when he can go to Philly for MIBG study. Please pray that he can be as comfortable as possible and that the oral chemo he is on can keep the disease at bay until he can move onto a trial study.
As for Miss Christi Thomas, things are also not looking good. She had some visible lumps on her head and was sent to CHOP to get an earlier MIBG. This is the scan that lights up any spots of cancer. Her dad, Shayne, put a photo of the computer screen on her page and her entire little body is glowing. It is so sad. Please go to www.christithomas.com and check on her. You can also follow the links to her Blog spot and read more frequent updates and leave a message. Please pray for miracles for these two sweet children.
Today has been crazy. I don't know if it is weather or what, but I am ready for it to be over. Taylor was awful. I spanked him twice at school and he still continued to misbehave. He could care less. He is now playing with his new leap pad toy. He can not watch TV. I made him sit in his room all afternoon Tuesday and that didn't phase him. I am really getting close to the end of my rope yet at the same time after reading all the sadness in the NB world right now, it is hard to stay mad.
We will go tomorrow to see Dr. LaRussa to get the results of yesterday's CT and the blood work that was drawn 3 weeks ago. I will be sure to let you know what it says and what the plan is to fix it. Other than Taylor's usual cough and snot, he seems fine. Logan is coughing and his ear is draining again. Yahoo! I am ready for warm weather. There is a terrible stomach bug going around and I am praying very hard that it stays away from this house!!
February 1, 2006 Day +1,036 Day #734 off treatment
Can you believe it is already February? Where does the time go? Today was a fast day. We went to school and it was computer day. I love computer day! Taylor, Logan and I left at 12:30. I totally forgot about finding somewhere for Logan to go. I just thought, quick scan, he can go with us. I totally forgot about the fact that he couldn't go in the room. I ran him by Nana's and we headed on to the hospital. We were there way early and I had hoped to get it done, but they still let us sit for 45 minutes. I finally had to call the CT dept. (there is a sign that tells you to do that after a 30 min. wait) and have them get on the move. The scan took all of about 3 minutes total once we got in there. We will go to Dr. LaRussa's office on Friday to get the results of that. I called Meredith to let her know it had been done just in case Dr. B wanted to take a gander at it. You know it will not hurt our feelings at all to have more than one set of eyes look at it.
We took a quick visit to 4-tower. There were a good many nurses up there that we knew. He was being a show off. We saw on the board that a lot of kids we know are up there, but we didn't stop in. Taylor just has a sinus infection and is not contagious, but I didn't want to freak anyone out by walking in with green snot coming out. We hope all our friends up there are having a good day!
We are home now and Logan is sacked out. I will probably regret him napping so late at bed time, but he was so ill that I had to let him go. Taylor has been outside for a while.
Please pray for the CT to show an easy to fix sinus issue and nothing else. Pray for next weeks MIBG scan. Pray for continued NED status.
Back To Top
January 31, 2006 Day +1,035 Day #733 off treatment
Today was a bad doyfor Mr. Taylor. He has been not following directions, he threw cars across the room when made to share, he has yelled, not sat in his seat and on and on. He is now in his room mad as a hornet. Logan is napping, he was very tired today. I love those days! I can get so much done if he will take a good nap. Today is day 21 of augmentin. It did not upset Taylor's tummy at all. I wonder if that means he didn't get its effects? After all, he is snotty. I guess we will find out tomorrow when we do the CT. He is supposed to be NPO, but I am not doing it. The child has been doing scans all his life and does not need to be sedated for a 5 minute scan. I did call and tell her. When the oncology dept. orders scans they do not even call to remind you much less explain anything. It was so funny to me that this scan that was ordered by another Dr. got so much attention. They called us several days ago to remind us to be NPO and explain what that was. I got a letter about it too and a reminder call today. Too funny! It is odd to be looked at as an "ordinary mom" that doesn't know the ins and out of the nuclear med dept.
Please pray that all goes well with that and nothing but clogged up sinuses are found. Pray for next weeks MIBG and that nothing but clean, clear, NED status is found.
January 30, 2006 Day +1,034 Day #732 off treatment
Monday already! It was a pretty good day. We had speech after school. I got his scores back from where he was tested last week. He got a 100 on his language. That means he knows what pictures and words are even though he may not say it properly. He scored a 61/100 on his articulation. That is not real good, but it is much improved from his August test which he scored a 40/100. He will not be stopping his speech therapy anytime soon, but that is okay since we are seeing progress. After speech we got haircuts, desperately needed hair cuts. We then met daddy at the Galleria for a little shopping and then had dinner while Wal-mart changed the oil in the car.
We didn't get home until after 7:00. I gave the boys a bath to get all the itchy hairs off. They played and fought for a little while and then we went to bed.
Please be in prayer for Taylor's CT scan of his sinuses. I am not looking forward to it since he is snotty even while on antibiotic. He cleared up for about 2 weeks and that was it. Please continue to pray for next weeks MIBG scan. That and a urine test are all we are doing this month. I am so glad yet so afraid! I am ready for it to be over and us to have that NED status once more. Please be in prayer for our friends who still fight their battles. Amber www.caringbridge.org/al/amber Lenzie www.caringbridge.org/visit/lenziebutland Colette al/colette Madison visit/madisonbeck and so many more.
January 29, 2006 Day +1,033 Day #731 off treatment
Happy Sunday. Today is a lazy day around here. Jim has gone to the hunting club for the last weekend of hunting. The boys and I are just hanging out. Logan is being mean as ever. Taylor is watching cartoons. He is coughing, but not that closed up barking sound he had last week. He is stuffy too. I think we definitely have a cold. He did not want his breakfast, but he ate 4 mini pancakes when I made him.
Last night both boys were so cute with popsicles. Taylor knows the routine. He will strip his clothes up and wrap up in a towel to eat his. Logan had one too that I was trying to help him with, but of course that 2 year old was not having that. He went and got his baby and put it over his legs and took the popsicle from me. I am ready for summer when they can run outside and get as sticky as they want and then get in the hose pipe.
We stayed home all day. Gammaw picked us up at about 6:00 and we met the guys in Tuscaloosa for dinner and then we brought Jim back with us. Once we got home we just sat around and all went to bed early. I feel a lot better about Taylor's eyes and he is full of green snot. I have never been so happy to see snot.
January 28, 2006 Day +1,032 Day #730 off treatment
Circus day! What a blast we all had. It was a great show and Taylor was "oh mying" all the way through. Logan wasn't scared and seemed to like it. Logan liked the elephants. Taylor liked the flipping and acrobatic stuff. Taylor also found it very amusing when the horse pooped and the man had to come scoop it up. 100% boy! Of course, he liked 7 motorcycles going at once in the big dome. The dogs sitting up was funny especially when they got tired and their legs would quiver. Taylor bought a cool motorcycle spinning thing. I am very shocked he didn't pick the sword! Logan didn't have a clue what was going on, he just touched something and that is what he got. He got a cannon that shoots a man out. He never said a word about us leaving his in the bag since there was no way to play with it in the show.
Last night they had a blast at Christian's. Taylor is a different child when he is out like that. He was quiet as a mouse. He played, but not that roudy kid I see at home and school. I guess that is a good thing that he knows how to behave in some one else's home. When Christian started opening gifts Logan turned into a crazy man. He started screaming "mine" after every gift. He is so silly. They had a great time, I think they like going to see other people's toys since we don't have much to play with here. (Hear sarcasm)
Gam maw kept the boys tonight while Jim and I went to Wal-mart and had the oil changed in the car and bought groceries. It was nice to do it without kids screaming and climbing in and out of the buggy. It was also nice to push a regular buggy and not that big ole car buggy.
I am strangely happy to report that Taylor is very snotty with big green boogers and is congested. I do not know how after 18 days of augmentin, but he is. I guess that means we will probably still see some thickening of the sinus on Wednesday's CT. We will then get referred back to Dr. Hill. I guess we will find out soon enough. Bless his heart! His eyes look much better, but I feel better having a cold/sinus infection to lean on as far as how he has looked. He woke up in the middle of the night last night and was moaning and groaning he was so cold. I put 4 blankets on him and soon he was spread out sound asleep and burning up. I am not sure if had fever or just hot from so many blankets the next time I checked on him, but he was cool as a cucumber when he got up.
Please pray that Taylor has some improvement with his sinuses and will not require much in the way of fixing it. Pray that next weeks scans are crystal clear with no "ify" spots and that they say NED!!!!
January 27, 2006 Day +1,031 Day #729 off treatment
TGIF, I have been ready to say that since Sunday night. I guess it is this worry wart funk I have put myself in, but I have just not been in the mood to do anything this week. Taylor, again, woke up with a horrible croupy cough. It did slow up a great deal, but he did still cough at school. I am not sure what that is all about. To me, his look awful. I always think that, but last night when Jim mentioned it, I get all in a tizzy. He actually looks better today, so maybe he is tired and getting an allergy thing going. Maybe he has crazy parents??? I know I drive you all crazy with my worries, heck, I drive myself crazy. I think, no, I know, it all bowls down to scan time, I have several adult friends in the midst of some health scares as well as several kids having some major issues. It all happens at once and I get to emotional over it all and it makes me crazy.
Please pray for the adults. I will not mention names at this point, but you all know who you are. We are praying for you all and are hear to walk you through it. As for the kids. Bailey is doing low dose chemo here in preparation for a new treatment in Philly. Pray for Jake Owen who is finishing up chemo at St. Jude and coming home to rest and prepare for a bone marrow transplant. This is not a standard procedure for the type of cancer he has. Please pray that this little pioneer is successful in this journey. Pray for Christi who has just finished a new treatment at CHOP. Pray for Amber who is inpatient. Pray for a new little friend who is 11 months old and has been newly diagnosed with a brain tumor. They do not even know yet what type it is. Unfortunately, I could go on and on. Please keep all the kids and families out there going through so much, in your prayers. Pray that Taylor is the lucky recipient of crazy parents and is still and always will be cancer free.
Now that that is all said and done, we are off to party hardy at Mr. Christian's 3rd birthday. Taylor picked out his gift. He had saved a Scooby bag to put it in. He got a gift in it and knew that Christian liked Scooby, so he saved it. The bag is huge and our gift is not, but he would not have it any other way. Kids are so funny! Logan is in bed with his new tractor and trailer set from Fred's. He is a "hook" guy just like Taylor was. He loves anything with a trailer on it. Even at school, he loves the little trailer that hooks to the bikes. I don't think he even knows we have the same thing here at home.
January 26, 2006 Day +1,030 Day #728 off treatment
Today was a fair day. Taylor could not be quiet even after I took the class down to snack and he and a fellow talker had to stay in the room with Mrs. Cretia. He was wild as a buck. I am glad to see that especially when I am having these crazy thoughts in my head at scan time, but at the same time I get tired of it too. He woke up with an awful barking cough. I gave him a breathing treatment and he never did cough again. I am not sure what that was about. It is time to hit the nebs hard to be sure all the reactive airway stuff clears for scans.
After school we went on a candle delivery journey. Logan napped in the car, but must not have got enough because even though he was awake when we got home, he went right to sleep when I put him in his bed. Yahoo!
We do not have plans for tonight. I guess we will just hang out and enjoy all my yummy candles. Tomorrow is Friday which is Christian's birthday and it brings us one day closer to the circus. Taylor has not been bothered by the antibiotics at all and I certainly hope that the circus is not the place it hits.
Please pray for Taylor's continues success against NB. Pray that he never relapses or gets a secondary. Pray that his late effects are minimal if any. Pray for Miss Colette who will soon start radiation, my least favorite part of all TX!! Pray for all of those who are still fighting.
January 25, 2006 Day +1,029 Day #727 off treatment
Happy hump day, 3 down and 2 to go. Today was a pretty good day. Taylor was a little mopey in the classroom, but was wild as ever in the gym. He has been fine at home, I really do know it is just me.
Once we got home we did pretty much nothing. We played Chutes and Ladders, Don't spill the Beans and did a few puzzles. He is really into games and puzzles right now. Logan has been a goof ball all afternoon. He loves to act like he is going to kiss you then run away so that you will cry. He thinks that is so funny. Speaking of him being goofy. Last night he cried and cried about an hour after he went to bed. He wanted juice. We ignored him for a long time thinking he would stop, but he didn't. Finally, Jim went in his room and he was laying on his back and when the door opened he just held his cup up in the air. When he brought it back to him he was leaning against the back of the bed with his arms crossed and a very disgusted look on his face. I told Jim that I was going to get one of those hamster things to put on the side of the bed so that he could suckle some water any time he wanted.
Guh came over and played with the boys. Jim and I went to dinner, alone. It was rather fast with no kids and quiet too. We were not gone long. Once home Guh, Taylor and I played a few games and then she had to go home. Taylor has been in trouble for a smart mouth today. If I hear him say poo poo again I may just make him eat some. Of course, I would never do that, but I am about to that point. I have no idea what to do with him and his little attitude.
Please pray that Taylor's scans are clear and show NED status. Pray that he has been cured of this beast for good. Pray for Morgan who will also be scanning in February. Pray for all those who are still fighting.
January 24, 2006 Day +1,028 Day #726 off treatment
Hi all! I am happy to report that Taylor has not made any mention of any aches or pains today. I honestly think he says things just to say them or get attention and then I, in my GCD (see yesterday's entry) ways take it too far. He has mentioned his tummy hurting, but today is day 14 of the augmenton.
We had a crazy day at school toady. We are a voting place and it was a voting day. We could not go to the gym, so the kids were stuck in the classroom for 4 hours. UURGH! We finally just went to the playground. It was chilly, but they needed to run. After school we came home and let Logan get a little nap and then we took him to Nana's. Jim and I had to go run a few errands. We then all had some yummy Jim N Nicks.
We were all back home by 5:30 where we just hung out. We watched American Idol and Taylor just laughed and cracked up at some of the sillies on there.
Please pray for Bailey. He has NB as well and has been given only a few more weeks to live, the beast is taking over his little body very fast. Please pray for Amber as she enters the hospital for chemo. Pray for Colette, another NB patient. She will be starting radiation this week. She has also had some fundraising buckets stolen from gas stations in her home town of Mobile. Pray that this person is caught and they get the money back. How could anyone steal, but to steal from a sick baby, crazy! Pray that Taylor's upcoming scans are all crystal clear in showing NED!!!
January 23, 2006 Day +1,027 Day #725 off treatment
Another rainy start to the work week. We had a pretty un eventful day at school. We dropped Logan off at Nana's house and Taylor and I headed to speech. Today was his 19th class and he was retested to see how much progress he has made and where we need to go next. He has made progress, but I do not think he will be stopping the classes any time soon. We did get to change our appointment to 2:30 rather than 3. That is always nice, 30 minutes is 30 minutes.
We picked up Logan and headed for home. Nana had a b'day gift for Taylor and she got he and Logan little fold out stools. They love them. They watched Clifford while sitting on them and then used them as little tables for a snack.
Taylor has mentioned his left and elbow hurting off and on today. It drives me bananas. I know there is nothing wrong, but it is a few weeks from scan time and I am in my over worry/over analyze stage. I was reading a magazine at speech and I have self diagnosed by self with "Generalized Compulsive Disorder" AKA I worry too much. It said people with this disorder don't have to so called rituals like OCD patients do, but they have small tendencies that add to stress. For example, (this was in the book) checking and rechecking a raised mole on your elbow. If you keep checking it, you may can stop it from being bad. Another was checking and rechecking the sent box of your email. I don't do that, but I do check the alarm clock 900 times before I go to sleep. I say I have it. There is no meds or anything, but it listed several ways to train yourself not to do those things. Yeah right!
January 22, 2006 Day +1,026 Day #724 off treatment
Happy Sunday. Today was my day to sleep late. I stayed in bed until nearly 9:30. I wasn't asleep, but it was nice to stay put and not be rusing around to get everyone ready. We didn't make it to church. It was rainy and I had been up half the night. We got a wrong number phone call at 1:30 in the morning and I couldn't go back to sleep. I am telling you people that Toy Story is a true story. I don't know if you remember a few years ago that Taylor had an RC car from the movie that used to come on at night. Well, last night when I got woke up by the phone I heard a man talking. Logan sleeps with NPR radio on, so I thought it was that. I wondered why it was so loud all of a sudden, but didn't put much thought into it. After trying and trying to go back to sleep and couldn't I got to listening to it and realized the mad was telling the story of Toy Story. I heard Zerg and Rex and Buzz fell down the elevator shaft. I got up and went to Taylor's room and he CD player was just a going. That thing has not worked for months and he can not get to the CD's, so I know he hasn't been playing with it. I guess it got turned on by accident and took it all night to finally come on or maybe it is haunted??? Who knows, it just seemed funny to me that every time we have a toy or radio go crazy it has something to do with the Toy Story movie.
We have had a lazy day today. We were home all day. I think Taylor has cleaned his room about 10 times. I can not get it through to him that if he will put up what he is done with before moving on, he wouldn't have such a mess. Anyway! I went to another candle party at Gam maw's house. I am having yet another one to help her out. We get free stuff when folks book off of us, so if you are interested in coming let me know. I haven't set a date yet, but I will be soon.
Guh came over for a little while after the party and played with the boys. Now we are all just being lazy. Taylor and I played Chutes and ladders and Don't spill the beans. We attempted to build a puzzle, but it was impossible. Jim bought it the other day when he bought Taylor some. It is the same picture on both sides, so you don't know if you even have the right side and it is the same picture repeated throughout. UURGH, it was very nerve racking.
I can tell it is scan time. I am noticing all sorts of things that I wouldn't notice any other time. I am nit picking and I know it, but it is still hard to get through the weeks and days leading up to scans. Taylor always says "ouch" when he has an itch and that drives me crazy. "ouch" puts me in panic mode and I do not want to panic over an itch. He also has a spot under his eye. I noticed it in the car this morning and later he fell and hit his eye on the straw of his cup on that spot. It, of course, will drive me crazy. Please pray for me to STOP doing this to myself. Pray that his scans are crystal clear and NED. Pray that he has been cured of this beast forever. Pray for all our friends that are battling their on disease. Pray for those who are missing their loved ones right now.
January 21, 2006 Day +1,025 Day #723 off treatment
Today was a good day. We got our usual wake up call at 6:00 from Logan's room. He got some milk and played until about 8:00. We got up and just hung out at home until Gam maw and Paw Paw called and invited us to lunch. After lunch we went to Children's to get Taylor's Augmentin refilled. Children's had already billed for the entire 21 days, so I couldn't just refill it at a pharmacy closer to home. Of course when I got there it wasn't filled and they wanted to bill me again. I have no idea what it going on. They gave me the meds, but didn't charge me, so who knows what will happen with it.
We headed back home after that little trip. Taylor worked for quite a while to make a card for Noah's gift. He had me write out Happy Birthday Noah and then he wrote it himself. He was quite proud of himself. Finally, as Taylor told me, it was time to go to Noah's. He played ball with some friends for a while then went in to play in Noah's room. He had a blast. He loves to go to other people's rooms. Oh how much neater Noah's room was than Taylor's. He loved it. I am so thankful for these normal things he gets to do now. Thank you Noah and family for having us. I had a very good time too getting to talk to other adults. We get to talk at school, but not without interruption.
Taylor wanted to go to the mall, but daddy didn't so we ended up having another night at home. I was dissapointed as it was the night for the Miss America pageant and we couldn't watch it. As you all know our dear friend Deidre was Miss America and her platform was childhood cancer. She has spent the last year and a few months (she got a little longer due to a contract change) spreading awareness of childhood cancer and raising money for research. The pageant is no longer in Atlantic city or on CBS, it is now on CMT and we do not get that channel. I called Guh and she taped it for me, so I can see it later. We are so proud of Deidre and all the work she did before during and I am sure she will continue with it now. Thank you Deidre!!! Remember, those of you who have Charter cable, you can see Taylor, some friends and Deidre in a commercial they made this summer about the curing childhood cancer car tags.
January 20, 2006 Day +1,024 Day #722 off treatment
I must say that again, I am so glad it is Friday. We had a pretty good day today. I am so glad that Mrs. Karen was there, Taylor is better for her. We had an average day at school. We had cupcakes again and the kids loved that. Once we got home we had more of the same. Taylor immediately cleaned his room. I told him when we left home this morning that when we got home he had to clean up, but I did not have to tell him again, he just did it. Yahoo! When he got done he went to play in the yard. He played golf and baseball. He swang too. He is so exited about his new found ability to pump his legs and swing him self. He has known how to pump for a while, but only to keep himself going once we pushed him. He has a new method now. He found a stick and used it to push himself until he got high enough then he tosses it to the side and uses his legs. He didn't want to have to stop to come get me and show me so he screamed at the top of his lungs until I came to the door. He is crazy! Luckily, I was watching him and had already seen or I would have been in a panic with him screaming like that.
Taylor is back inside now as it is starting to drizzle. Tonight is Jim's night to work late, so we are just hanging out at home. Taylor is so excited to be going to a birthday party tomorrow afternoon.
Please pray for the upcoming sinus scan on Feb. 1 and for his quarterly MIBG on Feb. 9. I see no reason to worry, but as always fear does creep in.
January 19, 2006 Day +1,023 Day #721 off treatment
Happy 5th Birthday Taylor!!!!!
I can not believe that Taylor is 5. It is hard to believe he was born 5 years ago period. It seems like only yesterday. However, add in what we have been through in his 5 years and it really seems crazy. On Oct. 10, 2002, I felt sure I would not see this day and yet here it is. Not only is he 5 he is a healthy 5 year old. God is so good. We certainly sing his praises for the miracles he has performed on Taylor. We also continue to pray that Taylor has been cured of cancer forever and never again will endure it or it's treatments. We also pray that we do not see any or at least any bad late effects.
I would like you to all go visit www.caringbridge.org/amber I know you all have heard me talk about her. Her journaling is fabulous. She is 17 years old and some updates are that of a 17 year old. However, some are so amazing, like today's. Check it out and leave her some encouraging words as she is inpatient for more chemo.
Today was a good day. Taylor started out a little whiney when he didn't get to be line leader, but he got over quickly and was a pretty good boy today. He was thrilled to bring cup cakes and the others enjoyed them too. They didn't get all messy like I thought they would with that blue icing. Logan keeps asking if it is his cake. He can have some tomorrow on bath night!
Last night Taylor opened his gifts from Jim and I. He got a USA puzzle that talks. It tells the capital and stuff like that when you put each state in. Right now he just likes that it is a puzzle, but hopefully that stuff will sink in and when it is time to know that stuff he will have an easier time learning it. He also got a Pizza topple game. He loves seeing how many toppings he can add without knocking it over. Jim bought him some big boy puzzles too. He got some 100 piece Sponge Bob and Madagascar. He is pretty good at it too. He gets a little frustrated, but he comes and goes and works at it until he gets it.
Please pray that we have many more happy, healthy birthdays. Pray he is cured of cancer for good. Pray that his upcoming sinus CT is fine as well as all other upcoming scans. He will start his scans Feb 8th. Actually he will only get an MIBG. He will inject on the 8th and scan on the 9th. Thursday is the only MIBG day and it is not Dr. B's day, so we will go back on Feb. 14th for his clinic visit and results. I am sure that I will be able to call him though and not have to wait a week. You all know I can't do that!
January 18, 2006 Day +1,022 Day #720 off treatment
I did not want to get up this morning. When I was pregnant with Taylor, we lived in Auburn. Our heat kept going out, so we bought a mattress cover that was a heater. For some reason we never got it out when we moved back home. We pulled it out last night and hooked it up and boy was it toasty. We turned it on about 10 minutes before we went to bed and it was warm when we got in. It is always so cozy when you wake up, but it was especially toasty today.
Anyway, enough about how good I slept. Today was a pretty good day. The kids didn't want to listen, but I think it is the age, weather and season. They have had enough of being inside and are ready for warm weather. We again had a few errands to run. We will be swapping cars again. We are getting the air charged back up since it has a new hose on it. I know we don't need air yet, but since the guy has time, we are getting it done.
I don't think we have any plans for tonight. I am sure we will watch American Idol. We had a good time laughing at them last night. Taylor is still asking when he will be 5. As usual, we are counting things by sleeps. One more sleep and he is 5!!
I think it is obvious that we are having normal days and there isn't much to update on. Please pray that this is how it will be forever. Pray that Taylor is NED forever. Pray for his upcoming Sinus CT and his other scans.
January 17, 2006 Day +1,021 Day #719 off treatment
Back to school. We had a good day today. Taylor is convinced that he is 5 since he had his party. I can't get him to understand that his birthday is Thursday. He had a blast today talking to his friends about his party and all the fun he had. They are so funny! We had a few errands to run after school, but luckily it was all quick and easy and didn't require me to get the kids out in the rain. I need to be in the grocery store, but I will do that when Jim gets here. I had planned to take them this morning, so that they could have a good lunch, but with all the rain I didn't want to go. Poor Taylor had instant oatmeal for lunch at school. He didn't care!
Logan now has both ears draining. The right one which was draining is looking better. The left one is awful! It is so nasty and he hates it when I clean it up and put drops in it.
We did make it to the grocery store today. Taylor picked our Darth Vader cup cakes. They are navy blue, so the kids mouths will be lovely I am sure! Any parent's reading this, don't send them in good clothes Thursday!
January 16, 2006 Day +1,020 Day #718 off treatment
Today was spent shopping, well, it was for me. Today was Jim's day to be in charge of kids. He had to dress them, feed them and deal with them all day. Taylor had speech this afternoon. After speech the guys came home. I was not far behind them.
As for tonight we just hung out and did nothing. We watched the Golden Globe awards. Logan is not feeling good again. Now his ear is infected. He has a lot of drainage running out. He is already on antibiotic and since he has tubes they will just give him drops anyway. I have drops, so I will just give him those and hope that it clears up on its own.
It was a low key day for us. Hope you all had a good one.
January 15, 2006 Day +1,019 Day #717 off treatment
Party Day!!! Taylor was so excited that he could barely keep it together. We had a low key day at home. Logan napped, but there was no way Taylor was going to. We built a puzzle. Pop sent over a puzzle that used to be mine. I loved to build it. Taylor did real good with it.
Finally, it was time to go. We got everything all loaded up and headed to Pump it Up. We stopped to get Logan and Taylor some real food before all the action. Taylor was too excited to sit still and eat. When we got there there were already a few friends there. The kids were already busy playing before we ever left the waiting room. They were so excited! They busted loose into the play room for fun filled hour and a half. They all had a blast. It is funny, I am their teacher, so they were tattling to me and handing me hair bows and toys and stuff. I think Jim had as much fun as the kids did. Logan had a blast. He went down the big slide head first! He has no fear. Taylor was so sweaty it was not even funny, but I am proud to report that he had no trouble breathing after playing that long. Maybe we are making head way! When it was cake time we gathered them all together to take a group photo which was so cute. The kids ate and drank plenty. I am sure all the running really gets to you. It was soon present time and they all enjoyed that. Taylor got so much cool stuff. He has already opened everything! He is so mad at me because I didn't have enough AA batteries for his new fish game. I am 1 short and it is killing him. He is cracking me up. Logan has left him alone, like he knew that it was new stuff and he didn't need to mess with him.
Thank you to all the friends who came to the party. We are so glad you came and we had so much fun. We were not even out of the parking lot good when Taylor asked if he could have his birthday there next year! Hey, if that is what makes him happy then so be it. I think he has been through enough in the first 3 years of his life to warrant a few "Pump THAT up" parties. Taylor calls it pump that up rather than pump it up.
January 14, 2006 Day +1,018 Day #716 off treatment
What a busy day. We got up and did some laundry and normal stuff like that. We then headed out for our day full of business. We headed to the dump which both boys just love. We then went to the ball park and registered Taylor to play Rookie ball. He has moved up to the next league. It costs a huge amount more to play and so we had to sit down and discuss the league and rather or not he wants to play. He said no at first, but then changed his mind. He has promised to be a big boy and not cry and whine and all the "baby" stuff he did last year. We shall see. He better play right after I paid all that money. The ball park should be ashamed of charging that kind of money for a 5 year old to play ball! Anyway, we are signed up and try outs are Feb. 4th. That should be interesting! After the ball park we headed to Hoover where we ate lunch and then headed to Guh's for some cake baking fun! We baked the cake and then headed out for some icing. I am normally very prepared, but I guess with Dr's visits and the car being worked on and all that I just let it get past me. Walmart didn't have the icing, so we had to go pay more for it at Hobby Lobby. We finally got what we needed and got back to get busy. It didn't take long at all since the power ranger only had 3 colors. Taylor helped make the suckers for about a minute and then he was gone.
When we finished with the cake we cleaned up Guh's kitchen. We leave it at Guh's house since she lives so close to Pump it up and we wont have to cart it all over town with us. We loaded up the trampoline and then headed to Paw Paw's. We left the kids there while we went to get my car back. Yahoo, I am so glad that I have my car back. Thank you Pippy for working on it for us. I am glad that Pop let me drive his van, but I am still glad to have mine back. I have not driven it since the accident, so that was fun too. It felt very funny!
Once we had the car back we met the boys and the rest of the crew for a quick bite and then it was off for home and bed. I hope that Logan sleeps better tonight that last night. He was up all night. He wasn't sick or anything like that, he just wanted to get up. He talked, cried, whined, kicked etc. all night. I was ready to choke him. Guess what, he was still up at 7:00!!! I didn't think about it at the time, but I think it is the albuterol they gave him at the Doc on Friday.
January 13, 2006 Day +1,017 Day #715 off treatment
What a day. It is Friday the 13th and it feels like it. Logan coughed all night and ran fever all night. He woke up from his nap yesterday with a 101 temp. I took him into the Dr. Today. Dr. P is not real sure what the problem is. It may be the beginning stages of RSV, but there is no real office test for that. He did an x-ray of his lungs and it was clear which was good. He was rattling, so he had to do a breathing treatment. It was kind of odd to be there doing those things. That is exactly how Taylor's baby visits to Greenvale used to go. However, I guess Logan has seen Taylor do this stuff enough and it wasn't so bad for him. He whimpered on the x-ray table. He never really cried, but was scared. He did good though. We did the breathing treatment which didn't bother him at all. Taylor is doing 5 a day right now and Logan is on 4, I will spend my entire day doing nebs! We finally left there at about 11:00. We got there at 9:00 after driving through a torential down poor.
I stopped by CVS for the Zythromax. I am sure Taylor will not get whatever this is since he is on 21 days of Augmentin:) We finally got home around 12:30. Logan had no desire to go to bed, but he did. He didn't sleep very good though. He is coughing something awful and he sniffs constantly. His nose is barely running, but he sniffs all day and it drives me crazy. I tried sucking it out with the bulb syringe, but there is nothing in there to suck out. Crazy boy!
Taylor watched cartoons all afternoon. He was mad that he couldn't go outside since it stopped raining. I could not get him to understand that it was still wet and muddy. I did my usual laundry! Logan woke up pretty early due to all the coughing, so he got up and they played in their tent and tunnel system.
Ghen Ghen and Bob came by with Taylor's b'day gifts since they will be out of town for the party. He got a lot of power ranger stuff and a cool remote control car that Logan wants real bad. Taylor had a real hard time sharing at first, but he finally let it go and let Logan play with it. They are ready for tomorrow to come, so they can take it outside and drive it.
Tomorrow is a busy day, so don't look for an update. We have to register Taylor for baseball and pick up raffle tickets. I will let you all know the price and prizes for anyone interested! We have to go to good old Wal-mart to get party stuff and then we have to make cake. Jim is making a red power ranger cake and Taylor and I are going to make suckers out of molds. He is so excited!
Sunday is his party at Pump It Up. He is so ready for that. He can't wait to see all his friends especially the ones that don't go to school with him and he doesn't see them everyday.
January 12, 2006 Day +1,016 Day #714 off treatment
Today was a good day. The kids were good, the weather is nice. Taylor is outside on the swing set again and riding his scooter on the deck. He has really been drawing lately and drew himself on his scooter and it is pretty good. I don't think Logan feels good. He his coughing an awful cough and he laid down in the floor when we got home. I put him in his bed and forgot to shut his door, but he was still fast asleep even with Taylor running up and down the hall.
It is now 5:10 and Logan is still asleep and coughing like crazy. I guess I will have to go to Wal-mart and get some meds for him tonight. I hope he gets over it quick before it gets bad. He had this a while back and it never really developed into anything. I gave him Accuhist and it knocked him out, so maybe he will be up soon and feel better.
Today was not much of an update day. Please check in on our friend Sean who is having some allergic reaction to his chemo and is in some pain. www.caringbridge.org/al/sean Check in on Christi who was to start a new tx this week and the drug was thawed to early and ruined. She had to wait a day for more to come in. This is a hassle as far as time off work and school, time without tx and money. Pray that this tx will help her. www.christithomas.com Please pray that Taylor has been cured of NB for good and that it never again enters his body or any other type of cancer. Pray that all this augmentin doesn't upset his tummy too much and it nips the sinus issues.
January 11, 2006 Day +1,015 Day #713 off treatment
I must say it has been a LOONG day. It has been a while since we had an all day Dr. day and I haven't missed them.
We took Logan to school and then headed to St. Vincent's for the asthma and allergy Dr. We drove around the parking lot for 10 minutes and then gave up. We left and went to a deck across the street and finally found a spot. We were still a little early and he was a little behind, so Taylor had plenty of time to play in the waiting room. He loves to go to Dr. LaRussa's office. The waiting room has a plane coming out of the wall that they can drive and each exam room has a different theme with themed toys in it. He loves it!
Once we got into our jungle themed room we started the history part of the exam and then moved on to weight and height. He was 36.6 pounds and 3 foot 5 inches. He has grown 1/2 inch since October and hasn't gained an ounce. I truly don't know how, he has eaten enough in the last 2 weeks to gain 5 pounds. I guess all the running and jumping keeps it off. Maybe I should start flipping on and off the couch! He had to blow the birthday candles out on the computer to test his lung function. It looks at how much air he has in his lungs and how fast he can push it out. If he were wheezing or had a lot of build up in his lungs he would not blow out many candles. He did fine. He blew out all but 2 candles on every try. He has fine lung function for his height and weight. He coughed several times during the visit and Dr. LaRussa said it was a sinus cough, it is all in his head not in his lungs. That is good! He is concerned about the constant snot. He is going to hit it HARD and if it doesn't stop we will be referred back to Dr. Hill in the ENT. He thinks maybe we are not cutting it with a little dose of antibiotics. We are going to do 21 days of Augmentin. Yes, I said 21 days. That will be awful! I hope he doesn't get a totally torn up tummy from it. After the 3 week round of antibiotics we will have a CT scan of the sinus and he can see if it is even touching the stuff. We had the choice of doing it at St. Vincent's or Children's. I of course chose Children's. We will both be more comfortable being where we are used to being. A CT of the sinus will only take about 5 minutes. It being at Children's will also help if we go back to Dr. Hill, it will already be in his computer. He also wants to do a lot of blood work to look at his immune system. I had a choice of where to do that too. It was children's or the lab at St. Vincent's, the same lab that drew all the blood when we were dealing with Dr. Mayberry at the Ortho. clinic when he first got sick. I didn't want to step 2 foot near that place plus I knew that the phlebotomist at Children's could work better on and with kids. We have scheduled the CT for Feb. 1st at 2:00. We will rush there after school and Logan will get to go along for the ride.
Finally, we were done there, but not as early as we had hoped. It was 12:00 and we had play therapy at 12:30. I was going to take him to McDonald's, but the line was around the building. We opted for a box of cereal from the hospital and a coke. He was fine with that. We did play therapy as scheduled. He did new things today. He stumped me a few times. I am glad that he did, but at the same time sad. I had to tell Mrs. Terry that it would be our last day for a while. With the close watch Dr. LaRussa is keeping on him and scans coming up and speech changing, it is just too much driving back and forth and something had to be cut out. It, unfortunately, had to be the free service that he didn't have to have. He was a little bummed as he enjoys going, but we will try to drop in any time we are over that way. We will be doing weekly play sessions at home while Logan is napping. I will call into her to see how things went after we are done.
After that we flew down to the dental clinic which is always behind. It was about 30 minutes past his appointment time that he was called. Dr. Thomas makes up for it though. He is so great with Taylor. He is a really nice guy and Taylor has no problems at all just going back with him. He didn't cry for me to go or anything. He has no cavities this time. Of course, how could he, the only two non capped teeth are already filled! All his caps look great. He told me he didn't cry and the he gagged. I knew that, he has the worst gag reflex ever. He said when he grows up he wants to be a dentist. He also wanted to know if he went to school would they teach him to turn on the light that he uses to look in your mouth. How funny!
While he was in the dentist, I went over to clinic 8 and visited. I also had out script re written so that I could have it filled at Children's. I didn't want to have to go to the pharmacy after all we had already done. I had already called Meredith this morning to have her call in SSKI drops for the upcoming MIBG scan. When I went to pick all the up we saw our old Stem cell pharmacist, Elizabeth.
Next came a new thing for us. We have been visiting Children's for 3 years now and I thought we had been in every dept. by now. Nope, we did a new one. Since we were having labs drawn that were ordered by an outside physician we had to go register in the outpatient area and go to a different lab that we are used to. Taylor liked the waiting room as it is right on the main level and he could see lots of people, but I knew once he got in the back the unfamiliar place would throw him. I also knew that no cream to numb the area would tick him off. I got him past that one by telling him that with no cream there would be no tegaderm to pull off and that is worse than the needle stick. He started to scream when she ripped open the alcohol pad. We got him distracted and he never even knew she poked him. He did cry out when the band on his arm started to hurt him. She had to draw 4 viles of blood versus the 1 he is used to and I guess it got tighter than usual.
Finally, at 3:45 we were done. Taylor fell asleep as we pulled into the neighborhood. Taylor played games with Guh for a while. She had picked Logan up from school and kept him. After a few games we headed over to Paw Paw's and Gam maw's for a while. They had cooked dinner and invited us over.
Please pray that 21 days of augmentin is okay. I worry about so much of the stuff! Pray that this will allow us to get to the bottom of some of this snot. Pray that no more surgery is needed on the sinuses. Pray that the CT scan goes well and nothing is seen. Pray that the upcoming scans are clear as well. We have no reason what so ever to worry, but as you know, scan time is worrisome no matter what.
January 10, 2006 Day +1,014 Day #712 off treatment
Today was a pretty good day. Taylor got a spanking at school. I told him this morning before ever leaving home that he HAD to behave and follow directions at school and he couldn't. I told him one warning and that was it. He calmed down some, but still had to be told a few times. After school we dropped Logan off at Nana's and then we took off. We went to the bank and then to the dollar store to get all the stuff for his party goodie bags. We had time to go by the toy store, but he had to promise no fits when he was told no as I was not buying anything. He did pretty good with that one. We then headed to speech. We ran into Mrs. Jennifer, Taylor's old child life specialist at Children's. It is always nice to see people outside of the hospital. We were at Children's South, but that is far enough away for me. I got to meet her sweet baby girl for the first time. She was a doll. We then went to speech. He did okay. He just can not get that T. He will not say K or C when you ask him, but that is what he says rather than T. It is very frustrating. He did okay as far as cooperation though.
After speech we went to get Logan and found that my old pal, Hollie was at Nana's. It was nice to visit with her for a while. We then headed home. I am not having fun driving Pop's van and rush hour traffic didn't help that.
We went to dinner with Gam maw and Paw Paw. I stayed on my diet and had salad. I have lost 3 1/2 pounds!!! After dinner we came home and got baths and watched TV.
January 9, 2006 Day +1,013 Day #711 off treatment
I had my heart in my throat when the phone rang and it was Children's Hospital. They wanted to remind me of Taylor's appointment. I had no idea what they were talking about. I knew I hadn't made an appointment for anything. It was dental clinic. Once I gathered my wits, I got ill. I hate that they generate appointments for you rather than letting you make them. How does it know when a good time is?? Anyway, we went ahead and changed play therapy this week to Wednesday to save an extra drive up there. We also added a trip to Dr. LaRussa to see if we can't figure out anything more on this snot. He was clear as a bell in Orlando and 24 hours after we hit home he is just as green and gross as ever. Hopefully that little tid bit will mean something to Dr. L and he can figure something out.
We had a great day at school. The kids were great. It was so nice that we went outside for a while. They love that! Taylor is outside now. I am watching him through the window as he plays on the swing set. He is so funny. I will fill you in on a few funnies. I am sorry it has been so long between updates, but we get so busy and things are just so normal there isn't much to tell.
The other night when Jim was gone, Taylor decided he would sleep with me. He had all his blankets, pillows and few books and toys. You would have thought he traveled out of state rather than down the hall. I was reading a book and he wanted to read one like me, so he went back to his room to get his book with lots of words and not pictures. He came back with his tattered copy of Bone marrow and stem cell transplants. He flipped through it a few minutes then opted to play with a toy. He picked one up and said this is my "penis" toy. I about fell out of bed. I kept asking him to repeat it. He was not smiling, so I knew that he wasn't trying to say what was coming out. I knew it was like that "fork and spoon" episode not to long ago. I finally took the toy away from him to see what it was and it was a happy meal thing that taught Spanish. He was saying "Panis" rather than Spanish, I was so tickled then.
Today he has been thinking a lot. He has told me on several occasions after I told him to do something or that I was going to do something, "yeah, I been thinking about that". He is so funny!
Logan has been looking for Bappy who is really Happy. Happy is Taylor's pound puppy that stays locked in his room and Logan wants it. Logan has one name Roo Roo, but he thinks he
January 8, 2006 Day +1,012 Day #710 off treatment
Hi all. It was another busy day. I had another candle party. I am addicted, can you tell! I had a lot of fun with all my friends and family over. Would any of you believe that I had trouble spending all my money? I had earned a couple hundred dollars of free stuff and I just could not spend it. I got it done though!
After the party Guh kept a VERY tired Logan while the rest of us went to the funeral home. A huntin' club buddy of theirs passed away. Taylor was very good there and I think it did some hearts good to see him doing so well. We will have the entire Rosser family in our thought and prayers.
We were going to go eat with Gam maw and Paw Paw, but Logan fell asleep. He wouldn't nap with all the excitement at the house, so he fell asleep at 6:30. We went by Pop's house and swapped cars. I have no wreck damage, but I have a list of things that need to be fixed under the hood! I will be driving the lovely gold mini van for while. I am so grateful to Pop for having 2 cars and allowing us to borrow it, but I am not a mini van mama and I am not enjoying it. Well, I must say the room is nice and the kids live the view they get with the wide windows, but I still don't want to drive one. Anyway, after that visit we went on home where we played board games. Taylor is very much into that right now. We played a few and then did a puzzle. After that excitement we had to go to bed. Taylor was very sleepy as well and was gone in no time.
Please continue to pray for Taylor and his success against NB. Pray that he is NED forever. Pray for those who are just starting or starting over. Pray for those who are missing their loved ones.
January 7, 2006 Day +1,011 Day #709 off treatment
I am exhausted. It has been a busy day. We started off with breakfast at the Plaza with the entire crew. We then came home and cleaned. We even steam cleaned the carpets. It looks so much better. How long do you think it will last? After a day of cleaning I went to dinner with Temp. and all 5 of the guys stayed here and played.
It was a very simple day, but that is the way we like them! Please keep Taylor's continued success in your prayers. Please keep Karen in your prayers. Keep all the kids still fighting in your prayers as well as those families who are missing a loved one.
January 6, 2006 Day +1,010 Day #708 off treatment
It was another good day. The kids were great today. I guess all of us were ready to get back into routine. Taylor has been fair at school. He has been loud and had trouble listening, but nothing too bad.
Please be in prayer for my new friend and co worker, Karen. She had a biopsy done and is waiting on the results. Please pray that it is not cancerous and can easily be taken care of.
After school we came home where we hung out all night. Daddy and Paw Paw got home late tonight from the hunting club.
January 5, 2006 Day +1,009 Day #707 off treatment
It was back to school for us today. It was a very easy day. We didn't have many kids. I guess some people will just finish the week at home. It was rather crazy to go back on Thursday. I drove for the first time today. It was not bad. I just knew I would be shaking like a leaf, but I wasn't. I drove Jim's car. I have some work that needs to be done on mine and Logan's car seat was already in his car, so we just took it. Of course I was ill as a hornet when I topped the driveway to see it was sitting past empty. UURGH! We stopped for gas then headed to FoodWorld for some lunches. I have to go to the grocery store this afternoon when Logan gets up. We have no milk and he keeps throwing the juice or tea back at me.
I am glad that we are back on routine and I am glad it was an easy day. I am also happy to say that Taylor's chicken pox shot spot is gone. The lump and the red mark are gone. His goose egg is gone down, but he still has the burn and cut on his forehead as well as a lovely orange colored bruise.
January 4, 2006 Day +1,008 Day #706 off treatment
Whew, what a Christmas vacation we have had. It is the last day. We go back to school tomorrow. I want to and I don't want to. I feel like I didn't get a break with all the hustle before Christmas and then the wreck after Christmas. I am not sure how driving to school tomorrow will go. It will be my first trip out. I know I will be fine, but I must say I am a little scared. Taylor never had any problems with any aftermath of the wreck. However, I did. If it looked like a car was coming over I would be on pins and needles. Any fast jerking movement or the such would scare me. Any of you that have ever ridden with Jim know that I was on edge for the 8 hour drive!
I wanted to share this poem that a friend sent us. I copied and pasted, so ignore the crazy capitals and all. I was not in the mood to go fix it all after I changed the text and all. You get the point....
A drunk man in an Oldsmobile They
said had run the light That caused the six-car pileup On 109 that night. When
broken bodies lay about "And blood was everywhere," "The sirens screamed out
eulogies," For death was in the air. "A mother, trapped inside her car," Was
heard above the noise; Her plaintive plea near split the air: "Oh, God, please
spare my boys!" She fought to loose her pinned hands; "She struggled to get
free," But mangled metal held her fast In grim captivity. Her frightened eyes
then focused "On where the back seat once had been," But all she saw was broken
glass and Two children's seats crushed in. Her twins were nowhere to be seen;
"She did not hear them cry, " "And then she prayed they'd been thrown free, "
"Oh, God, don't let them die! " Then firemen came and cut her loose, " "But when
they searched the back," "They found therein no little boys, " But the seat
belts were intact. They thought the woman had gone mad "And was traveling alone,
" "But when they turned to question her, " They discovered she was gone.
Policemen saw her running wild And screaming above the noise "In beseeching
supplication, " Please help me find my boys! They're four years old and wear
blue shirts; "Their jeans are blue to match."" "One cop spoke up, ""They're in
my car, " And they don't have a scratch. They said their daddy put them there
"And gave them each a cone, " Then told them both to wait for Mom To come and
take them home. "I've searched the area high and low, " But I can't find their
dad. "He must have fled the scene, " "I guess, and that is very bad." "The
mother hugged the twins and said, " "While wiping at a tear, " "He could not
flee the scene, you see, " "For he's been dead a year." "The cop just looked
confused and asked, " "Now, how can that be true? " "The boys said, ""Mommy,
Daddy came " "And left a kiss for you." "He told us not to worry "And that you
would be all right, " And then he put us in this car with "The pretty, flashing
light. " "We wanted him to stay with us, " "Because we miss him so, " "But
Mommy, he just hugged us tight " And said he had to go. He said someday we'd
understand "And told us not to fuss, " "And he said to tell you, Mommy, " "He's
watching over us." The mother knew without a doubt "That what they spoke was
true, " "For she recalled their dad's last words, " " I will watch over you.
"The firemen's notes could not explain "The twisted, mangled car, " And how the
three of them escaped Without a single scar. "But on the cop's report was
scribed, " "In print so very fine, " An angel walked the beat tonight on Highway
Today has been spent as usual, washing clothes and cleaning up. I feel as though that is all I ever do. I don't get much credit for it either. I am in a funk if you can not tell. I wont bore you with it. Anyway, both boys are now in the bed. Yes, I said both. I had heard as much screaming and arguing as I cared to hear. I put them both in bed. I don't think either one is asleep, but I am now cleaning up in peace. I took a time out to check my email as I was expecting one from Camp. Taylor was offered a Kindermusic scholarship. It did not work out as the times for the classes were school times. However, we greatly appreciate the offer.
We have no plans for tonight other than to get ready to go back to school. I am not in the mood at all. I know it will be a difficult day after 2 weeks out of school. At the same time I am ready to get things back to normal and get back into our routine.
I certainly hope you all had a great holiday season. We did despite a few crazy days! May 2006 bring us ALL continued success against NB. Pray that a cure is found in 2006! Pray that those who are NED can remain that way and those who are not can reach it soon. Pray for those who are starting this new year without a precious loved one. Pray for those who are still fighting in the new year. Pray that this year brings them a miracle. I know that in no time at all I will be writing "I can not believe it is July". The days seem to fly.....
January 3, 2005 Day +1,007 Day #705 off treatment
Today was another travel day. We were out of there by 8:00 our time. We made a few stops for food and drink and bathroom breaks. We made a lot more stops today than the other night. Logan was very good. We didn't expect him to be so good during a day trip, but he was fine. They watched movies the whole way. Logan took a little nap, but when he was awake he jabbered 90 to nothing. We sang a lot more Johnny cash too!
We made a stop by Mary and Andy's to get my car. It has no wreck related problems, but some mechanical work is needed. Great! However, I am very glad that it is not wreck related and no insurance claims will be needed. We will be getting those problems taken care of soon. Jim drove my car home. I am still not in the mood for driving.
We came home and threw all the stuff in the floor and went to bed. It was a long day in the car.
January 2, 2006 Day +1,006 Day #704 off treatment
Game day! We got up late again, but that was okay. We went to Chick Fil La for a quick lunch. They dropped Logan and I off at the hotel and then they headed to the game. We just played for a while. House keeping came by and we went to the pool. It was 80 degrees there and he wanted to swim. He was furious that I wouldn't let him. I had no idea it was going to be that warm. We all had one pair of shorts for "just in case" that we wore all week:) He enjoyed his time outside, but he easily went in after a while. I laid him down and he fell asleep. I ended up taking a nap too. The game didn't go so hot, so they left a little early and were back in the room not long after the game was over. Logan was still sleeping, so we just hung out there until he got up. We then headed for dinner and another outlet mall. This mall was so huge that we barely saw any of it. We were all so tired that we were not really into it. We headed back to the room. I had packed up most of our stuff while they were at the game, so I just sat around. We played and watched tv for a while. We had to make Logan lay down, but he did fine.
Today was not all that exciting, but we still had fun. I can't get over how good the kids have been. Taylor really had fun at the game and ate his traditional bucket of pop corn.
Please pray for safe travel home. Pray that Taylor's chicken pox and head injuries are all fine. Pray for complete healing for Taylor.
January 1, 2006 Day +1,005 Day #703 off treatment
Happy New Year!!
It is almost crazy to think back to new years 2003. We spent it in the hospital getting chemo. I would never have thought that in 3 years we would be spending new years in Disney World. God is so good!
After a very late night, we slept late. We didn't get up until about 10:00. Logan even slept until 9:30. We had lunch at the Olive garden. We think we got the same waitress we had 3 years ago. She was from Mississippi and understood the importance of sweet tea and made Taylor is very own cup of sweet tea. We did not need tea this year, he was fine with his coke, but it was pretty cool to run into the same girl.
We stopped by an outlet mall and got in some shopping. The kids played at a playground at the outlet. Great idea for the dads and kids that don't want to shop! We then gave Taylor the option of going back to the Magic Kingdom and riding splash mtn and all that again or going to MGM to see the power rangers. We all know what he picked, MGM. He was in a much better mood today and was very into things. He asked several times to ride splash mtn, but couldn't since we didn't get hopper passes. He was fine with it though. We went to the Honey I shrunk the kids playground. They loved it. Logan got brave and was going up and down the slide by himself. Taylor had to sit in time out since he kept running off. It was just too crowded for him to run off and explore by himself. Just as we were about to leave Taylor found a "worm hole" to go into. It was pitch black in there and a kid was laying in the floor and he tripped over her. He hit his head hard and has a huge goose egg and cut right smack in the middle of his forehead. It is very pretty! After a $60 trip to the Power Ranger shop he was good as new!
We left the kids with Gam maw and Paw Paw while we rode Tower of Terror. I could not even enjoy it for fear of Taylor's boo boo being bad. You all know I wanted to call Meredith so bad I could taste it! I didn't though and I made it through! She would be so proud, I am a big girl now! When we met back up with them Gam maw had taken the kids on the back lot tour. They came flying in with 5 minutes left in the power ranger visit. He was one of the last few kids to see the Red ranger. He didn't care that he didn't see the rest of them. He was front and center for the little show they put on when they load back up in their car. He jumped a foot when the white ranger jumped and landed right in his lap. He loved it. We went for a snack and to ride the Rockin' Roller coaster. We went back over to look at the Specticle of lights. It was just that. There were 5 million lights. It was a very pretty and crazy sight! By that time we had had enough and loaded up and headed towards dinner. We were looking for an Outback since we had gotten a gift card for there for Christmas. We couldn't find one, so we had decided to just get some fast food and go to the room. While we were driving around thinking about what we wanted we stumbled across an outback. We pulled in and fed 6 people for $17. Not bad huh! We then proceeded to get lost. We drove all over Orlando and some how ended up back at the Outback! We went back to the room and hung out. Logan had fallen asleep in the car and was out like a light.
We were all so tickled that he was laughing in his sleep. Let me explain. We had some big magnets on the car and one of the room keys got on one and de-magnatized. We were trying to see which on worked and neither one would and we were all tired and ready to get in. We soon saw that Gam maw was using her Publix card to try and open the door. We were laughing at that and you know when you are tired things are 10 times funnier. We just couldn't stop laughing! We got in and started dressing Logan in his pj's. I went to change his diaper and his boy parts were sticking up. Taylor decided to say, very loudly, "hey, Lolo's tt is standing up". Well that sat us all off again. Logan was giggling in his sleep. He never woke up, but he was smiling. He snoozed without moving a muscle as we all played, watched TV and talked for a few hours.
Back To Top
Go to News Archive: | Go To TaylorWatts.org