Quick Jump: 1st Quarter 2005: January February March
March 31, 2005 Day +729 Day #427 off treatment
I can not believe that March is over. It is crazy how fast time goes these days. I hate to see my babies grow up so fast, but at the same time it is good to see Taylor get to each and every milestone that at one time we didn't know we would see. I don't want to wish away their childhood, but my own sanity needs to see him at 10, 20, and so on. Does that make any since?
What a night we had. I have never heard such thunder or seen such lightening. I could hardly sleep with the almost constant rumble of thunder. We have that sky light in our room and it sounds awful when rain hits it, but when hail hits it is really loud. I just kept laying there wondering if we could get struck by lightening through the sky light? I know, I need to quit thinking so much it often gets me in trouble:) Luckily it had stopped raining by the time we left for school and we didn't have to run in the rain to get in the building. It is very sunny and warm right now and I guess that means that we will have more yucky weather tonight. Last night also brought eye issues for Taylor. Okay, so it wasn't an issue, but it isn't something we deal with every night. He was standing a good ways away from me and I could see a black spot in his eye. I got to looking at it and it was a piece of grass that was going vertically across his eye over in the corner. He obviously wasn't bothered by it, but we knew it didn't need to stay there. We didn't really know what to do with it, do we did it out, rub it see if it will go behind his eye ball or what. Neither of us wanted to try and dig it out, so we put some of Jim's contact solution in it. We knew he would never let us put it in if he saw it, so I snuck it in and Jim got him to close his eyes and he just quickly popped that eye open and squeezed some in. He got mad and closed his eyes and started to rub it. That was fine since he rubbed it enough to get it to stick to his upper lashes and I was able to pull it the rest of the way out. He wasn't bothered by any of it other than the eye drops and never mentioned it again. I am not sure if he got it in there at practice or in the tub. He had so much grass on them when we were in the tub that when I rinsed their hair I was having to dig grass out of it. He may have gotten it in his eye then, but who knows.
Taylor and Logan match today. When I was in collage and teaching at a day care there I had a parent that always matched her boys and I swore that I would never do that. I do it a lot, not everyday, but a lot. I think it is cute now. They had on denim shorts and yellow John Deer shirts. Red neck huh? Nah, just southern. Taylor picked the shirts out. He is all about John Deer since that is what is on his gator. He points out the John Deer place every time we pass it. They are being so sweet. They are sitting side by side in the fire truck bed (Taylor's old bed that is still sitting in the living room) and reading books. Not just any books either, Taylor is reading one of bone marrow and stem cell transplants and Logan has one on solid tumor cancers. That always makes for a good read!
At school today they both did great. Logan loves all of his teacher, but Mrs. Kelli is his favorite. He knows she has cookies and he goes in the door looking for them. Taylor is still milking the boo boo on his elbow. He is acting like his arm is about to fall off. He held it up the entire time he was in the tub last night. He will not let you near it. I thought it must be real bad, but today his teacher asked him what he did, she didn't even remember, so I guess it isn't. It probably really did hurt when it happened and now he is just afraid it might hurt again. He had fun as always. He and Ethan crack me up. They were running and playing and I could here them making up rules for their game and yelling "your turn, my turn". I know that it is just normal play, but once you have been to hell and back you savor the small things. We all should, it is sad that it takes tragedy to make us see that we should. I had a small class made up of boys, so it was just like having a big class:) The day always drags by when there are less kids, but it wasn't bad. I learned today that we get 2 days off at the end of April. That was good to know especially since we are just coming off a break and not really wanting to have to get back into the swing of things, but at the same time my pocket book would rather me go to work. Oh well, it will probably be needed by then and I wont care as much. We also learned that a child has microplasm. I had no idea what it was or if I should be concerned about it, so I do what I always do, call Meredith. She was off, but because she is so awesome she called the wonderful Rhonda and had her call me. It is a normal childhood pneumonia and nothing to worry about. Thank goodness! Thank you Rhonda and Meredith for checking on us, you guys are great! Where would I be if I didn't have them to put me back together when I flip out over things, everything.
We have one more day of school and then we will be off for the weekend. Taylor has a ball game at 9:00 Saturday. It is also opening day and he will have pictures taken at 8:00 and after the game he will get to jump in the moonwalks and other fun things. Last year he would have nothing to do with any of that and I am interested to see how different he is this year. It has been a year and he has started school and done other things with kids and I think that he will play this time. I also think he will smile for the picture unlike last year. We shall see. That is all I have to tell you today and half of that was probably more than you needed to know. Please keep praying for Taylor and that he is NED forever. Pray for his repeat CT next week. Pray for all his friends that battle this battle everyday.
March 30, 2005 Day +728 Day #426 off treatment
The second day back to school was fine too. Both kids had a good day. Taylor fell while playing ball in the gym and got carpet burn on his elbow. He cried and has shown me the band aid a hundred times. I have not seen under the band aid, so I do not even know how bad it is. That is his first school boo boo. Ahh, another normal milestone. He is doing great at school. He has all of a sudden really started to color and do nice work. Logan doesn't do any coloring as of yet. He still eats crayons. He loves the gym though, he knows right where all the toys are. Paw Paw stopped by to see the boys before he went to work. He had left Food World which is across the street from the church and he saw our car still there. We are home now. Logan is napping and Taylor is watching cartoons. He has already done his breathing treatment and changed into his ball clothes. He has practice later on today and he is ready.
I gotten the Church's approval for a blood drive to be held there in Taylor's honor. I am waiting on the Red Cross to let me know what day is good for them. I will let you all know as soon I have the dates and Times. There will also soon be buckets around town raising money for different charities both local and others such as the Neuroblastoma foundation, Alex's lemonade stand and Give Kids the World. Again, I will let you know where they are and when they get there. Our Lemonade stand will be June 10-12th this year. That is the dates set by Alex's parents. If anyone is interested in helping then or any other time that is more convenient for you or your group, please let us know. Also, if you know of a good place to hold it or have connections with a place or person that could help out, let us know. Be sure to be on the look out for other news.
Taylor slept on the bottom bunk last night. I am not sure why. He was in the top and he got up to potty and got in the bottom. I think he was playing cars (he isn't allowed to go up the ladder with toys) and just fell asleep. He said he was sleeping down there tonight, but we will see. Guh is coming to eat with us or should I say cook for us. We were going to her house, but with ball practice and all it was just easier for her to come here.
Well, I think that that is about all for today. Please pray that Taylor is NED forever. Pray for his April 5th CT. Pray that all his friends who are NED can stay that way. Pray that those who have net yet reached NED/remission can get there soon. Pray for those who have lost a loved one both young or old.
March 29, 2005 Day +727 Day #425 off treatment
The first day back to work/school wasn't so bad. Taylor even said on the way home, "that wasn't so long". I think he meant the drive wasn't long, but I took it the other way, the day wasn't that long. All the kids were itching to get back and had so much fun playing in the gym and being with their friends again. Taylor was so excited this morning to be going back. I think Logan missed it too because when we got there he took off for the gym.
Taylor was decked out in Spiderman shirt, shorts, underwear and shoes. He didn't realize that he didn't have on the socks or I am sure he would have. He was mad that he didn't have an outfit like Logan's, his pants had a tropical look that Taylor called fire. However, once he got dressed and realized it was spidey, he was fine. He of course added spidey hat and sunglasses to the package.
Once we got home he did his breathing treatment and he headed outside. He wasn't out long when he came in due to wasps. They are awful around here and he is very afraid of them. He gets that from me! I was trying to get him to calm down the other day when one got to close to him and then it came to close to me and i freaked out:) He didn't want to play outside unless I killed them all and I can't do that so he opted to come inside.
I think I have figured out Logan's eating issues. He just doesn't want to be in the high chair. He ate a few bites of pancake this morning and wanted down. We have lowered his highchair as low as it will go so the tray is at his eye level when he is walking around. I didn't think anything about it and let him down. I always leave the food because he will go back to it several times. Well, he ate both the pancakes while I got ready and he was playing in the living room. This will be a battle, but he will not eat walking around. He has to sit in his chair. He is getting it. He wants a rice krispy treat and I will not open it until he is in his chair. Every time I try to put him in it he balls his legs up and if I ask him to get in he will turn his head and make a face. After about 10 minutes of trying to get me to open the treat he finally got in his chair, so maybe he will get it soon and he will eat all his food in his chair without a fuss.
Well there is another day in Watts World. We are so thankful for you all who still come here to check on us. Please sign the guestbook and let us know you were here. Please keep those prayers coming as they are felt and God is answering them. Pray that Taylor is NED forever. Pray that Logan never faces this or anything close. Pray for all our friends who fight this battle.
March 28, 2005 Day +726 Day #424 off treatment
Well, spring break has come and gone. We will go back to school tomorrow. I do not want to go, but I know that if I did stay home everyday I would be bored and I wouldn't get done what I got done last week. Once we get back in the swing of things we will be fine. We have gotten up early everyday anyway so it doesn't really matter. We don't have long until we get to go to Disney World and get a 2 week break from school. Hopefully we will not miss anymore days other than clinic visits.
Guh came over today. Taylor loved showing her his bed. They played for a while and I even got a nap. We were off the entire week and this was the only nap I got. The Easter bunny gave Taylor a jump rope and he wanted to learn how to do it. Well it was certainly funny trying to teach him to do it with Logan right in the middle. We were telling him when to jump and Logan started saying something in the same tone we were using to say jump. I guess he was helping. Logan has been silly today, but he has not eaten. He has just lost interest. He ate one meat stick, but then he started just chewing it and spitting it out. I don't know what to do with him. He will drink chocolate milk and that is it. He will throw the cup down if we put anything else in it. Guess what? We are out of chocolate milk. I made some with Nestle quick, but he didn't like that. I think because he puts it down and all the chocolate goes to the bottom and it just tastes like milk.
We have not done much of anything today. In fact the boys are still in their PJ's, the shirts anyway. I have 2 boys that do not really care for pants. They both take them off as soon as we are home. Taylor doesn't really like clothes period, he just assume be in underwear than anything else. As you can see I have nothing to write about, so I will go.
Please pray for Taylor and that he can continue to be NED. Pray for all of our friends that are fighting cancer both young and old. Pray for the George family and extended family as they deal with a difficult time right now. Pray for a fellow Mary Kay consultant who recently lost her mom.
March 27, 2005 Day +725 Day #423 off treatment
Well, we were spared the nasty weather and if we had anything happen at all I missed it as I was sound asleep. We had an Easter miracle of our own both yesterday and today. Logan slept until 7:45. WOW! We had to wake Taylor up to come see his Easter basket. They were neither one to impressed. Logan automatically used his golf club as a weapon. Taylor liked his magnets. We got ready for church and headed out in the rain. I can't remember an Easter that we didn't have rain. All our pictures of Taylor hunting eggs are with rain coats and umbrellas. Oh well, I also don't remember an Easter that we didn't have a great time.
Taylor did not care for his knee socks and he kept rolling them down into little rolls at his ankles. A very classy look. I had an old friend sit next to me today. An old family friend and fellow cancer patient was there today. It was great to see you Ben, keep up the good work! Today was a day to celebrate miracles and we had a church pew with 2 miracles on it, Taylor and Ben. We got to take home the Easter Lily that we bought in honor of Taylor. He wasn't real impressed with the flower.
After church we went to Guh's house. We ate lunch and then hid eggs. Taylor has had so much practice this year at hunts that he did great. We didn't help him at all. Usually we have certain prizes for certain egg colors, but this year each egg and each prize had a number and they turned in the number when they heard that number. They had fun and they all racked up on some cool prizes and money. Poor Logan missed it all. He fell asleep in the car and woke up when we got there, but that wasn't enough and he was grumpy. We put him in his bed and after a few minutes of screaming he fell asleep for several hours. He was still a bit cranky when he got up, but he got over it. After everyone left the boys went out to ride their riding toys. Logan was in the power wheel jeep and it doesn't work, so he got out and opened the hood and jabbered at it.
We left Guh's and headed to Gam maw's. We ate dinner and celebrated a few birthdays. We just hung out and played and visited. We left when Logan was sleepy and we forgot baby. Thank you Anna and Dugan for dropping it off. Logan was asleep in no time once we got home. Taylor was ready for bed when he was trying to get out of a neb, but once it was over he was ready to play.
Do you like the new main page? That is the start of many changes and new things to come. We have many things coming in the next few weeks. We will let you know about them as they approach so be on the look out. Be sure to read "Taylor's stand" link often too. We are going to hold another lemonade stand in conjunction with Alex Scott again this year and new details on that will be listed there. Just keep looking for new things, there are some cool things on the way.
That was our Easter. It was great. We have one more day off and then we go back to school on Tuesday. I am ready to go back and yet I am not. I hope that all of you had a wonderful Easter and no bad weather. Please remember all those families that did not have all their loved ones with them today. Pray for those that were in the hospital today. Pray for Taylor and his success against NB. Pray for Ben as he continues to fight his cancer. Pray for our friend the George's as they go through a rough time. Joy, I am praying for you.
March 26, 2005 Day +724 Day #422 off treatment
What a beautiful day too bad it has to end with severe weather. I certainly hope that we do not have anything too bad come through here. We did some errands today such as the dump and Wal-mart. I got the house clean and Jim got the flower beds cleaned out and new pine bark in. Just a normal day for us. The boys had a blast playing outside. Poor little Logan is all scratched up, but he had so much fun. He should sleep good tonight.
Taylor wanted to go to eat outside at Sonic, but weather did not permit that. We went to San Antonio Grill instead and he pouted. He wanted a corn dog and since they have them I was able to tell him that they went to Sonic just for him and got one. He bought it and was happy then. I will be in big trouble when he catches on to that trick.
Last night we got his bunk beds put up and got his room all put back together. He loves it. He slept on the top bunk. He will not hear of sleeping on the bottom. He plays on it during the day, but at night he is up that ladder. I took most of the toys down stairs and it looks so much roomier in there. He still has plenty to play with in there. He really likes it. I had no trouble tucking him in a little early tonight. I did have trouble getting him to do his breathing treatments. He only had one today. It is hard when we are on the go. He really sounds much better today, but I guess it is because he didn't have the meds to break up the gunk and let it move through. Oh well. Hopefully after the next CT we can at least cut back on the nebs. I do think that the Zyrtec and Singulair is helping. He is still snotty, but it is nothing like it has been in the past. It also helps that he has finally mastered blowing his knows and he doesn't just let it run everywhere.
As for Mr. Logan. His bottom cleared up finally with the use of our left over stem cell Aquaphor, but it has come back. I am not sure what it is. He has had no new foods, soaps, shampoo, diapers, nothing. I have no clue. Does it worry me? Yes, I am a cancer parent, everything worries me. He still is not eating at all. Today he had a few bites of banana, a few bites of cheese about a tablespoon of mac and cheese and maybe 3 green beans and that is it all day long. I know they all go through stages where they do not eat, but as you know, when my 1st child hit that stage it ended in a diagnosis of cancer. He is due back in the Dr. in about 2 weeks for another ear recheck, so we shall see if his weight has gone up any then.
Please continue to pray for Taylor's success against NB. Pray that his CT is all clear and is just asthma related spots. Pray for Logan's eating and weight gain issues and that they are just "picky eater" related and nothing more. Pray for all those that are on this journey that cancer puts us on.
March 25, 2005 Day +723 Day #421 off treatment
Wow! Two years ago today Taylor was admitted onto the stem cell floor and started the stem cell transplant process. I still feel like that was the longest 28 days of my life, but yet here we are 2 years out. God is so good. I am happy to say that we are all well 2 years later. I wish that NB was further away and that it didn't lurk in the back of our minds, but that wouldn't be true.
As I was driving around yesterday I found myself looking in the mirror at the people behind me wondering if they were reading my tag, my magnets, the baseball on the window. Did they put it all together and realize that TJW was Taylor and that he had NB. Did they look in my car and try to see if they saw a sick kid, a well kid, a crazy mom? Isn't that what the magnet and tags are for? To make people think and want to know more. I guess I often over analyze these things. No, not me:) However, that is just me. There are times when I want to rip it all off and pretend it never happened, but that wouldn't be fare. Not to us, Taylor, the other kids that fight or God, who got us all through it. Really, I would like to put Taylor's entire story on the back of the car and that way everyone that saw him get out would know that they were looking at a modern day miracle.
Another driving moment from yesterday.... We were on the interstate and a truck pulling a trailer went by. It was next to me at just the right point that Taylor could see the end of it and I couldn't. He was giggling and laughing and I had no idea what was so funny. Soon enough it was clear to me. The trailer was a horse trailer and it has a horse in it and Taylor could see its butt and tail. He thought that was absolutely hilarious. I. or course, got stuck behind the thing forever and he laughed the entire time. I couldn't help but laugh. Logan was even laughing even though I am sure that he had no idea why.
Last night we went to dinner with Gam maw and Paw Paw then we went to buy Taylor bunk beds. Thanks Gam maw and Paw Paw. He has been wanting some for a while. He picked them out, but he wanted a certain one only because it had a ladder. They all had one it just wasn't displayed on each one. He didn't care what he got as long as it had a ladder. We picked one that we can add too later by turning the bottom bunk outwards and putting a dresser and shelves in. We will go today to look at mattresses and bedding. He is about to bust to get it all put together. He doesn't understand that it isn't ready for sleeping just yet. Thankfully, he fell asleep on the way home and we didn't have to fight that before bed last night.
Today Guh came over. We played outside for a while. I got out the jump house, that was a lot of work. Anyway, Taylor jumped about 2 minutes and told me he was done. He and Logan rode the gator until Taylor ran over him with it. He had to put it up then and go inside, he was being very ugly. Logan rode his 4 wheeler. It is so funny, he uses his index finger to push the button rather than his thumb, but he gets where he is going. We went to Wal-mart and boy was it packed. It was awful. Taylor showed out most of the time, but Logan was good. Logan looks cute. They both look cute in their matching outfits, but Logan looks cute. His short, fat little legs sticking out of those shorts are too much.
Please continue to pray that Taylor has won this battle. Pray he never has to fight it again. Pray that April 5th's CT scan is clear. Pray for all our dear friends that are battling cancer and other illnesses.
March 24, 2005 Day +722 Day #420 off treatment
What did you do on this day a year ago? 2 years ago? I know what we were doing, that is one good thing about having this journal, I always know what was going on. Two years ago we were at UAB doing a kidney function test to see what doses of chemo Taylor could take. Last year we were getting pictures made with the Easter bunny. Guess what we did today? We had pictures made with the Easter bunny. I am so very thankful that we repeated 2004 and not 2003. I hope we never repeat any portion of those cancer days.
It was a huge hassle, but we got a funny picture. We went to Brookwood Village and you have to go upstairs to get into the mall. The elevator was broke and the escalator was too skinny for the stroller. I had to fold up the stroller and carry it, the bag and Logan and then reload at the top. Taylor had to handle it all by himself since I didn't have any hands to help him. We had to do the same trick to get back to the car.
We finally got in line for our picture. It wasn't long at all and Logan was straining every which a way to see. Once it was his turn to go he flipped out. They took 2 shots and one is Logan screaming and Taylor looking at him. The other, the one I bought, is Logan screaming and Taylor making a "what's his problem" face. I didn't think that Logan would like it, but we tried.
We met Jim at Sonic and we ate outside. We had a few errands to run, but Logan got cranky on me so I didn't do them. Guh is off tomorrow and we can try it then. Logan's booty looks a tad better. I have been putting Aquaphor, powder and Aveeno on it. I still have no idea what it is, but it looks better and he doesn't seem to be bothered by it. He is currently running all over the house and playing cars. I have been giving him some pediasure everyday to hopefully put some weight on him. They didn't have chocolate, so we got vanilla and he likes it okay.
Taylor has been a silly goose. He likes to hang up the phone after I am done. I was talking to Guh last night and he asked if he "ring up" instead of hang up. Today he was asleep in the car and had a bag of gold fish in his seat and Logan wanted them. I couldn't reach them and therefore Logan screamed. I was singing and talking goofy to try and keep him happy. We did this for several miles with me twisting at every red light to try and reach the food or make him happy. Taylor all of a sudden pops up and says, "I'm just 'tendin, I'm not asleep". UURGH! I had to laugh though.
Taylor has ball practice tonight and he is excited about it. I will update again tomorrow. I know a lot of you read fro work and you will be off tomorrow. For those of you who will not get to read again until next week. Have a Happy Easter. Please pray for Taylor's continued health. Pray that Logan never endures anything like Taylor has. Pray for all our friends that fight this fight too.
March 23, 2005 Day +721 Day #419 off treatment
I enjoyed staying home yesterday and I think I want to do it again. However, we do have some errands to run. Logan has a rash on his booty that will not go away. I do not think it is diaper rash, but I have no idea what it is. I need to get something to put on him. I also need a few items from good ole Wal-mart. I have to stop and talk to the church about doing Taylor's 3rd annual blood drive there. I will get you all the details as soon as we get it all planned.
We turned in a story to Oprah. She is looking for stories on having you life saved by strangers. The Red Cross asked that we tell our story. I am not sure that that is what she is looking for, but he did have his life saved by countless strangers on numerous occasions. If Oprah gets on board with this idea it could do wonders to boost the blood donor numbers. She can talk anyone into doing just about anything. I have no idea if she would actually have us out there, but I would love to be on Oprah. How cool would that be? While I was on her site submitting his story I saw the link to submit if you want to meet a "hot celebrity". I certainly could have wrote in to meet Kenny Chesney, but I didn't. If I am going to be on national TV I want it to be for something important.
It is only 8:30 in the morning and my living room looks like a tornado hit and Logan has already blessed me with poops. Can it get any better? A few days ago Taylor asked Jim to make him some oatmeal and he made Logan's kind, strawberries and cream rather than Taylor's usual, maple and brown sugar. He refused to eat it and Jim told him to eat a bite to see if he liked it and if he didn't he would make him the other kind. He ate about 5 bites before he wanted the other kind. Well, the past 2 mornings when he asked for oatmeal he asked for the kind with the red things in it and not his kind. He is a little fart. He just wanted to get his way the other day so he refused to eat it and now he wants to eat Logan's kind. Logan wont eat the maple and brown sugar, so I guess I better add oatmeal to my list of things to get at Wal-mart.
We went out last night and ran into Taylor's best bud, Ethan and Logan's teacher. Logan thought she was plum crazy for being anywhere but school, he just looked at her. It was funny. Hopefully, that proved to Taylor that no one went to school, I know that it was well past school hours, but he doesn't have to know that. He is not waking up mad anymore, but he does ask every morning "am I going to school today"? He also wakes up in a frenzy when he hears the garage door open. He takes off to hide thinking Jim is coming home and then runs to the front door so he can see him go by the house. It is a very frantic few minutes until he gets awake and can see what is going on.
We have now had an outing and are back. We met Guh at Ci-Ci's pizza where Logan did okay with pasta and Taylor had 4 pieces of pizza. We went to Wal-mart where Logan screamed bloody murder the entire time and I have no idea why. We are now home and Taylor is outside playing and Logan is in bed. I am not sure if he is asleep or not, but he is quiet. This morning when I put him in the bed so that I could get ready he was hilarious. I was watching him on the monitor while I did my hair and make up. He was standing on his head and pushing his blanket through his legs like a football. He would just fall over and laugh. I think that bed will have had it by the time he is done. He stood up and shook the bed and laughed and laughed. He is a goof ball.
I think that is about it for today. I will be sure to let you know if anything big happens, but I am sure it will be low key from here on out. Please continue to pray that Taylor is cured of this disease and never again faces cancer. Pray that his CT in April is clear. Pray for all out friends fighting this battle.
March 22, 2005 Day +720 Day #418 off treatment
Ahh, a moment of peace. We have been up since the rack of dawn, but what's new. Logan did take a nap this morning. I got so much done, but it sounds like Taylor is undoing it all. We moved his stuff to one side of his room so that we can put up a new, bigger book shelf. Hopefully that will cut down on some of the mess in there. Taylor and I played cars and watched cartoons. When Logan got up we had lunch. They both did pretty good although they liked the junk better than the food. They played for the next few hours sometimes they played well together and other times not so well. Logan is back in his bed, I know he is tired since he is so grumpy. He is playing rather than sleeping, but he is screaming so he is staying. I am sure he will fall asleep soon.
It has been raining all morning and now it is just as bright and beautiful outside, I guess that means that it will be nice and yucky outside later on tonight. It has been sunny in here. The kids have been so silly. Logan wants to climb onto the couch so bad, but he just can't do it. He got a throw pillow and stood on it like that would help. I laughed so hard. They have pushed their pop corn toy around pretending it is the vacuum cleaner. Taylor has danced and sang and pretended to be Super man. Last night was the perfect definition of normal. Taylor was outside hitting balls off the tee and doing a dang good job. I went out to watch and took Logan with me. He was barefoot and running all over. It was dark, but they played on their riding toys by the light of the flood lights until we drug them in. I remember rushing home this time of year to get all my homework done so that I could spend the rest of the day outside. That is just the sort of thing I always thought of us doing until we had a kink thrown into it, but we worked that kink out and now we are doing those "normal" things.
Please pray that we have many more normal nights. Pray that Taylor is NED forever. Pray that Logan never faces anything close to what Taylor has. Pray for all of our friends that are fighting their own battles with cancer or other illnesses. Pray for those who are missing a loved one today. Pray for those who have just started this journey. Pray for our troops.
March 21, 2005 Day +719 Day #417 off treatment
We are finally home at nearly 5:00. We left the house around 10:00 and went to the post office. We mailed a magnet to Dr. C. and it turned out to be funny. It kept sticking to the mailbox at the post office and wouldn't go down. I finally had to go give it to the man and he was laughing at us. We then went to IHOP to eat with Guh. It has been a long time since we did that. Taylor ate pretty good. Logan slept until I woke him up when the food came. He ate fair, but he was still a little groggy. We did a little shopping after lunch. We went to Goody's and it turned into a deja vou episode. we hadn't been in there 5 minutes when he starts yelling "I gotta go poop". I tried to get him to wait after all he had gone a tin before we left home. Well, no such luck, he then started to yell "I got poop in my pants". Off we go, running with the stroller and Taylor close behind towards the bathrooms. Luckily I did have the stroller, so it wasn't as big a deal as last time. He did his business and we were on our way. I don't know what it is about Goody's that causes him to feel the need to go to the bathroom, but it never fails. After that stop we went to Nana's and dropped off Logan so that I could go to the dentist, again. Taylor was a ham this time. He talked to the dentist the entire time. After the dentist I got my hair cut. I have no clue how it looks yet since they were booked and she worked me in and I didn't get it dried. I pulled it up. It is barely in a ponytail, so it is shorter. I got a razor cut rather than a scissor cut, so maybe it will be better. I hate my hair! We went to get Logan who had been a good boy again. He ate a ton and played. He and Taylor were not ready to go, but I made them and we were heading home. We are now here. Logan is napping, I hate to let him this late, but he was so tired and cranky. Taylor is outside playing and enjoying the warm weather before it rains. Our only plans tonight are to go to the grocery store. I plan to clean tomorrow since it will be nasty out and we are staying home all day. I guess there wasn't much to tell in this second update, but that is okay. until later....
It is the first day of spring break and my kids don't get it. Logan was still up at 6:30 and Taylor wants to go to school. I can't get him to understand that no one is there and that he is not the only one not going. They have already been making me laugh. They have had a little brawl and wrestled around until Logan bit Taylor and that ended it. He is going to be that kid that bites everyone. I dread that. Taylor is wearing footed pajamas and is stuffing toys down them so Logan can't get them. Whatever works I guess.
I will give you a better update later, but I wanted to share our good news. All of those holes in Taylor's hips came with a price of pain, but brought us good results. All 4 biopsies came back clear. Dr. B told the nurse practitioners if any of them talked o us this week to tell us it was clear and Rhonda jumped on the chance to call me. I got nervous when the phone rang and the caller ID said Children's Hospital. They usually do not call results in, I email and ask. However, after our scare last week, they know we want to know. Thanks Rhonda and Dr. B! I also asked her about asthma and his episode at Pump it up. She said we could definetly go see an asthma specialist, but he is already on the big guns, 2nd line meds for asthma. All he could do different was get a break through inhaler and I really don't want any more meds. It is more than likely exercise induced and he has always been to sick to do much therefore nothing has ever happened. I think we will hold off and see how he does when it gets warmer and we start going outside and doing more.
Check back later for a better update.
March 20, 2005 Day +718 Day #416 off treatment
Hi all. How are you? We are all great. We went to church this morning and heard the Easter musical, it was great. Taylor went back to the room with all the kids to get a palm leaf, but he chickened out before it started. I figured he wouldn't do it, I did try, but he was about to cry and I didn't want to force him. Maybe next year. I am not sure why he is so shy at church after all it is the same building he goes to school in and many of the same kids and teachers.We had a short tribute to a troop who has returned home. Welcome home Jay Michael! After church we ran home and changed then went to Sonic. We took our lunch to Gam maw's and ate it before we went to hunt eggs.
The kids had so much fun. They could see them all over and it was killing them to wait on the start time. Once it was time they were off and running and they were done in no time. Now I know how my parents felt. It takes 30 minutes to go hide them, but 2 minutes to find them. They had so much fun going to the prize table and claiming their prizes. Logan had fun on the swing set and slide. He was having a good time. Taylor was too.
We had to pull them away to go home. Logan fell asleep and took a pretty good nap. Jim put up a new fan in Taylor's room. His was the only room that didn't have one and we have been saying we would get one for years, but never did. He found one at Lowe's the other night and they only had one so we got it. The blades are bats and the light fixture is a glove with a ball in it. He loves it. Daddy didn't love putting it up, but it is all worth it when he lights up when he sees it. He is taking visitors to come and see it if you would like to make an appointment:) He is so funny wanting to call people to tell them about it.
Please pray that Taylor is cured of the beast that once ravaged his body. Pray for all his friends that battle different illnesses.
March 19, 2005 Day +717 Day #415 off treatment
Happy Birthday Janie. Please remember our dear friends the Sims' as they remember Janie today on what would have been her 8th birthday. www.caringbridge.org/al/janiesims
Today was a good day. We were up by 6:30 thanks to Logan. Taylor followed shortly after 7:00. Taylor had practice at 10:00, but it didn't last long due to rain. He did good though. He is really trying this year where as last year he could have cared less. Logan and I stayed home. Logan actually fell asleep soon after they left and I got some stuff done around the house. After the guys got back home we just hung out. We did a little cleaning, a little playing, a little sitting around. We left around 4:00 and went to Gam maw and Paw Paw's then we all went to dinner where both boys ate great.
It was a restful day. I think we all needed a day to hang out. I am so glad that we are off all week and I can do a little and sit a little. I plan to take a nap whenever I can get Logan to take one. Tomorrow we are going to church. I can't get Taylor talked into walking his palm leaf up to the front by himself, looks like I will get to walk in with the kids. After church we are going to a Easter Egg hunt. Taylor is looking forward to it and maybe Logan will pay more attention if there is no riding toys in the way. I doubt it, but we will see.
Please pray that Taylor is NED forever. Please pray for our new friend, Davis, who has just entered the stem cell unit. Pray for our friends that are fighting cancer or other illnesses. Pray for the families that are missing their babies tonight. Pray for our troops and the family that misses them.
March 18, 2005 Day +716 Day #414 off treatment
Happy Birthday Kim!
What a day we have had. It was so nice to finally have a great day with no worries and with lots of fun things going on. We went to school as usual, but I got a huge surprise. I had 3 dozen roses delivered to me from Jim and the boys. I had 11 red and 1 white from each one of them. It was gorgeous, now me trying to drive home with it was not a pretty, but we did it. We had another Easter party at school and an egg hunt. We got to do it outside this time and the kids loved it. Taylor had a blast though he looked crazy. He had worn some khaki pants that the bottoms zip off to make shorts with some slipper socks that had spider man on them and they were pulled up to his knees. That was fine since you couldn't see them, but he took the bottom off his pants and wore them as shorts with those socks pulled up to his knees. Yeah, he looked crazy! When school was over we loaded up and realized that we didn't have Logan's baby AKA blanket. We looked everywhere and thought it must have gone home with someone else which would be okay for the weekend, but we are off until March 29th for spring break. We finally found it in the play oven, he was cooking it. He is a nut! Taylor did that to me once when he was about that age. I went to get him from daycare and he only had one shoe on. We looked and looked and after about 30 minutes we dug through the garbage and there it was. My kids like to keep me on my toes. We went home for just a few minutes and unloaded the car and changed diapers and pottied then we headed out again. This time to Pump it up or Pump that up as Taylor calls it. He was the youngest in a group of 8-12 year olds and I thought he would not like it. Wrong, he hung with them the full 2 hours. He was sliding with them and climbing with them. He did great. They were real good with him too. Logan showed a little more interest in it this time, but still didn't really like it. He bounced on the end of the obstacle course for a minute. He preferred to climb up the little wedge used to get in and out of the stuff and then slide down. Of course, he played with the cozy coupe. Taylor had a hard time getting has breath after the party. He has never been formally diagnosed with asthma. He was thought to only get wheezy with a cold. I guess we never noticed any other times because he was not able to get out and be as active as he is now. I will definitely be asking the Dr. about it. He was coughing and going crazy all during his play time and for about 10 minutes afterwards. That didn't stop him from polishing off 2 cups of chocolate ice cream and cake. Logan didn't do to shabby on his plate either. After the party we headed home where Gam maw and Ghen Ghen were ready to keep them so Jim and I could go out. We went to dinner and a movie for my birthday and did a little window shopping. We got home around 11:30 or so. Both boys were in bed and we were right behind them.
Thursday night when we put Taylor to bed and turned on his movie we learned that his DVD player is dead. He was very sad, but we told him it was okay. That poor DVD player has served it time. It played nonstop, day and night while in the hospital and then it went to his room while at home. He now uses it in his room at bed time and some nights it still plays all night. We will replace it, but it is kind of sad. It is like losing a friend. Isn't it crazy to be that way, but I guess when it is such a huge part of your day for so long you feel that way. Oh well.
Please continue to pray for Taylor success against this disease. Pray that he never again faces cancer. Pray that Logan gains weight and never faces anything like Taylor has. Pray for all our friends battling cancer and other diseases.
March 17, 2005 Day +715 Day #413 off treatment
Happy St. Patrick's Day! I hope you all wore your green today. We had a long day, but it was good. It was real good after Meredith emailed and said that Taylor's bone marrow aspirates were clear. We will have to wait about a week to get the biopsy results. We had an 8:00 appointment for Logan. He had his 15th month check up today. He was 31 inches long and 21.11 pounds. He has been at 21 pounds for about 6 months. He eats like a horse and runs like crazy, so we are guessing that is the reason, but it does worry me. Taylor was about 27 pounds at this age and when he started to lose it was due to cancer. I can't help but have that worry in the back of my mind. Otherwise he checked out fine. He got 2 shots and he is cranky. He got his MMR and they said that one would cause pain, fever and possible a rash. Sounds fun. Taylor never got that when he was little because they had a shortage of it and then he was diagnosed and got no more shots. He did finally get it in December and he had no side effects from it. Maybe Logan wont either.
After the doctor we went to school and we were only about 10 minutes late. We had an Easter Party and an egg hunt today. The kids loved it. Taylor had most of the candy eaten before we got to Nana's. He loved looking at the different types of eggs that he got and all the candy. Logan found 2 eggs and was done. Since it was raining we just put plants and toys all over the gym and hid them there. Logan found his cozy coup car that he loves and decided that he would rather do that then hunt eggs.
We had to leave early to go to Nana's. Taylor played very good with Nana's kids. He had fun. She has that wet toilet paper, I don't know what it is called, but he cracked me up going to get it and calling it wet wipes. We got home around 4:30 and both kids were sacked out. Logan just didn't get his nap, but Taylor has taken several doses of Tylenol. He acted like he was in pain at school, but it was an attention getter. He took off running and slid to get to an egg, so I don't think he hurt too much. I better go and get them up before they sleep too long and I can't get them to go to bed tonight.
Please pray that the biopsy is clean. Pray that the CT is clean. Pray that he is NED forever. Pray that Logan's lack of weight gain is okay. Pray for all our friends that are fighting cancer or some other illness.
March 16, 2005 Day +714 Day #412 off treatment
What a long day. We got to the hospital at 8:00. We sat in the waiting room until a little after 9:00 when Meredith came in and got things moving. Of course, Taylor had a cough and that was causing concern for anesthesia. We had to do a breathing treatment. I had not given him any since I wasn't sure if that was allowed while NPO. It worked out good anyway, the respiratory guy had a smaller mask that fits his face better and it looks like a dragon. After the neb treatment we had to go up to x-ray and get a chest x-ray done. That was okay since it showed all the junk sitting right where the CT was lighting up. I took that as a good sign. We went back down to the clinic to wait on Dr. Berkow to read the films. He was fine with Taylor being put to sleep, but we had to check his oxygen levels and as long as they were over 94 he could get sedated. He was at 99 for the longest before jumping to 100, 98, and so on. We went back to the waiting room to wait on a Simon Sedation room to open up. It was about 12:15 before he ever went back. He was injected with the propophol and was asleep in a few short seconds. I left him in the capable hands of Meredith, Rhonda and Richard all of whom we all love and trust. I went back to chase Logan with Guh. He is a handful and he can get away from you, fast. It was a about 1:00 when I went back to help wake him up. He is awful to come out of sedation. Finally, he woke up and went and sat in the transfusion room of clinic. Wow, we have not been back there and it is awesome. I hope to never ever need to be in the transfusion room again, but it would have been nice to have had it a few years ago. The old one had a bout 5 adult chairs in it and it was always crowded and loud. The new one has tons of reclining chairs, it is dark and each chair has a TV with a headset so it stays quiet. Each chair has an adult seat with pillows made in, so that the moms can be comfy too. It was real nice. Guh had to leave and head to the airport for a business trip. I had to get Taylor to wake up so that we could get out of there. Finally, he woke up and ate some Cheese Its and Cheerios. By 2:00 we were leaving clinic. However, we still had some issues to cross before leaving. Taylor wanted cereal, but all the breakfast stuff was put up. There was a St. Patrick's day party going on with free ice cream, so we went for some of that, but it was gone. We tried for a diet Pepsi, but she put ice in it and he had a melt down. UURGH! I finally just headed to the car and let him be mad. We stopped at McDonald's for nuggets that he has yet to eat. He has had 2 ice cream sandwiches. We finally got home around 3:00 and we are just hanging out. I got my personalized car tag in the mail today. Yeah!
They had a St. Patrick's Day party in the lobby of the hospital today. We sat and watched employees do karaoke and it was fun. A little boy about 9 years old who is a cystic fibrosis patient stood up to sing I swear. He stood in front of at least 100 people with his mask on and sang. He hit every high and low note. The people were cheering him on and with every yell or whistle form the crowd the louder he sang. We stood on the 2nd floor and watched. I think Taylor just liked the fact that a kid was singing. I stood and cried like a baby. It is so amazing that we have the awesome hospital right here in Birmingham. It is so cool that they have so many things like that to offer the kids and help keep their hope alive. I was proud of our little friend who stood up and sang his heart out.
Please pray that the bone marrow results are clean. Pray that the Ct on April 5th is clean. Pray that the breathing treatments are working and it cleans up the spots on his lungs. Pray that he is NED forever. Pray for all our other cancer friends that are at some stage of the game. Don't forget to wear green tomorrow or get pinched!
March 15, 2005 Day +713 Day #411 off treatment
Hi! Another day has come and gone. Today we went to school as usual. It was a fun day. My class combined with Taylor's to watch an Easter movie. They had fun. It was fun for me to watch him interact with the other kids. After school we went to Don Don's for some chicken nuggets per Taylor's request. We saw the lady in front of us hit the car in front of her. Taylor saw it too and was in shock.
We came home for a while and I picked up some and did some laundry. When daddy got home we went to Tuscaloosa for a while. We had dinner at Wings. It was kids night and they ate free and had a magician stop by the table. He did some magic tricks. Taylor was slightly impressed, but it was the gun made from a balloon that impressed him. We went to Woods and Water with, Logan loved the bass in the big tank. He was opening and closing his mouth at them. Taylor found a huge, John Deer tractor that he likes to ride on. No, it isn't really for riding, but he thinks it is.
Both boys fell asleep on the way home, so bath time was scrapped and at 9:00 we were all in bed. The boys were snoozing and we were watching Idol and House which we had recorded. Those are our new favorites.
Well, it was another normal day for us. Please pray that Taylor's bone marrows are clean and that his next CT is clear. Pray that he is NED forever. Pray for all our NB friends as well as all our cancer friends.
March 14, 2005 Day +712 Day #410 off treatment
Hello all. Today we went to school, of course. Taylor did his breathing treatment like a pro. He was wild as a buck today and I am not sure why. He was crazy. Logan too. He had me crazy before 8:00 this morning. He was climbing on the fireplace, trying to climb through stair rails, taking Taylor's stuff and on and on. He napped at school and therefore he didn't nap after school. However, it didn't matter today since we didn't go home. We went to lunch with Jim then to Nana's. Daddy had work done to the jeep and we had to pick him up after work, so we didn't want to go home and come back. The boys had a good time playing at Nana's.
We had dinner with Gam maw and Paw Paw at the Olive Garden. Logan showed out for us, it was nice and embarrassing. He was good once food came out even though he had had some baby food at Nana's. He will eat baby food at her house. I think I will buy him some for here, sometimes it is easier to feed him that and know that he got enough.
Once we got home we watched Extreme Makeover again. We missed it last night since the weather man broke in and stayed on the air for over an hour. UURGH! The boys got a bath and Logan went to bed. Taylor and Jim and building with legos and I am talking to you all. I am so glad you are there. It is such therapy for me to come here. I can get it all out and even if you didn't understand it, you listened and I got it off my chest. Thanks for listening. You can't know how helpful it is to read the guestbook and know that support is there.
We have been invited to a ribbon cutting at the new clinic on Friday afternoon, but I am not sure we will make it. It is at 1:00 and we have missed enough work and school lately and really do not need to leave early that day. We will just have to wait and see. We will be going to a Pump it up party Friday. He is so excited. It is with some older kids, so I hope that he will play and no freak out. I don't think he will have a problem, but you never know.
Well, again we have gotten through another day and I have given you a small glimpse into our normal activities. I am so glad to give these normal, boring updates. I hope that we can always give a boring one:) Please pray for Taylor and pray that he is NED forever. Pray that April's CT is clean and there is no more concern. Pray that Morgan and her brother are feeling better soon, they have been fighting a virus. Pray for all the kids fighting cancer and other illnesses.
March 13, 2005 Day +711 Day #409 off treatment
Today we went to church. After church we ran home to grab some clothes and we were off again. We got some lunch and took it to the Botanical gardens and had a picnic before taking off in search of a picture spot. We found several, but not the same one. Just like I thought, Logan was not as cooperative as Taylor was. He was always trying to get off the rock. It was fun and I think we got some good ones. We went for ice cream after the gardens. We ate outside and Taylor was covered in chocolate ice cream, but it was okay. It was very strange for me to go to the gardens. It was wonderful to go and see Taylor be happy and healthy, running all over the place and jumping off of rocks. However, at the same time it reminded me that the last time we were there with him, he was healthy and we were still in the that ignorant bliss of nothing can ever happen to us. Oh well, no use to dwell on the past. We have become better people and made wonderful friends on this journey.
Anyway, now we are home and watching Extreme home makeovers as it remodels the home of a neuroblastoma patient. It is wonderful to see the heart on these kids, she wants to redo the children's ward at the hospital, so that it isn't so drab. How sweet is that! All the cancer kids we have ever met are so compassionate and caring. It is so wonderful that they have these traits, but sad that they have been through so much and seen so much happen to friends.
Please pray for these kids that are fighting cancer. Pray that they are able to be cured. Pray that we see a cure one day even if it is not in our lifetime. Pray that Taylor is NED forever. Pray that we can use his story as hope for others going through a similar situation. Pray that his bone marrows are all clean. Pray for all the families just starting this journey. Pray for our troops.
March 12, 2005 Day +710 Day #408 off treatment
Taylor had his first ball game today. He did great. It is amazing what a difference a year can make. He paid attention and knew what was going on. He was not eating while he played or digging in the outfield. His whole team did great.
After the ball game we went to get some lunch. Taylor remembered that he didn't play on the playground at the ballpark and we had to go back. He played for about 5 minutes and he was happy and we headed home. Logan fell asleep in the car at 10:30 and is still asleep now and it is 1:20. I have gotten a ton done, but now I am ready to go to Wal-mart. We have big plans tonight and I need to get ready soon. We are going to the Red Nose Ball, a huge fundraiser for Camp SAM. There will be dinner dancing and an auction. We were invited last year, but couldn't go, so we are excited about it.
Well, here I am again. Logan finally woke up at about 2:30 and we headed to Wal-mart. Once we got back home Jim took the kids outside for a while. Logan loved riding in the gator as Taylor drove, unfortunately, Taylor didn't like having a passenger. They were so funny. Taylor pushed Logan on his 4 wheeler for a while. He always seems to get tired of pushing when he is up in the trees and leaves Logan up there. Of course, Logan doesn't care. Logan was fit to be tied when he had to come in so that we could start getting ready. Luckily, Guh got here soon after and took them back out.
We were soon all dolled up and on our way. We got to the Healthsouth ballroom in time to look at all the silent auction items. We bid on a window pane with ducks painted on it, but were quickly outbid. It was pretty neat to see all out doctors and nurses dressed in their best rather than scrubs and lab coats. It was nice to talk about life and stuff other than white blood counts and test results. However, Dr. Berkow did tell us that the final reading of the MIBG was perfectly normal. He is so great!! We also had our picture made with Miss America. She and Mike Royer were the emcees for the night. It was neat to see her in her new role and to know that she is still the down home, southern girl she was when we first met her. Her first words to us were "How is Taylor"? We sat as a front row table and had a scrumptious dinner. Soon it was time for the live auction. I have never seen anything close to that. It was fun watching or rather listening to the action. It raised a lot of money for camp SAM. We are thankful to Camp for all they do for us and we are thankful for all those people last night that cared enough to help camp and the kids.
Please continue to pray for Taylor to remain NED. Pray for all the kids that fight this fight everyday.
March 11, 2005 Day +709 Day #407 off treatment
Hello all. I can not believe it is Friday. I knew it would be a long week since we had scans. I really knew it would be a long week when we had problems arise. However, it was not a long week, it flew by. I thank God that it did, I am not sure I could take one more day this week:) I went to work yesterday after the tests were done and I guess I was on pure adrenal and a "happy high" because today I am about dead, the week and fear has caught up with me and I could sleep for hours.
We went to school today and had a great day. I am pleased to say that there is not much to report today. I would love to give you guys boring updates from now on! I had many church people come by to congratulate me/us. I had man well wishing parents as well. It is so great to have all of them, our family and you, our internet friends to support us the way you do. Taylor did a neb treatment before school and one at school and has already had one since we have been home. He didn't mind doing it at school. Several kids got in his face and looked and asked what it was for, but he wasn't bothered by or didn't seem to be. I will take him to a different room if it seems to bother him, but he will have to do them at school at least until April 5th.
I don't know what we will do tonight other than go to good ole Wal-mart and get his medicine re-filled and get a few things. Can you believe that we have not been to wal-mart all week. Wow! Maybe we will find something else to do or maybe not. We will have to be up early for the ballgame, so we wont do too much. Feel free to join us at 9:00 tomorrow morning at McAdory ball park if you would like. He would love to have you all there.
Last night we all went out to dinner. We ran into some friends. Taylor saw a friend from last years ball team and one from this year. He was excited. Logan ate good, but Taylor didn't. He was too busy coloring and getting the lady to hang his pictures up. At first he didn't want to leave them, but then he decided it was cool to leave it so others could see it. Both boys fell asleep on the way home at about 7:40 and they were both out for the night. It was pretty peaceful here last night. We did nothing!
Please continue to pray for this lung issue to be airway related and not cancer. Pray that his April scan shows things cleared up or at least clearing up. Pray for his NED status to continue forever. Pray for all of our friends that are still battling cancer.
March 10, 2005 Day +708 Day #406 off treatment
Whew! The MIBG scan was clean. We are now pretty sure that it is asthma related. He will have a CT scan of the chest only on April 5th. He will also do more urines as well. This months urine samples will be crazy I am sure after all the bananas he has eaten this week. I was not even thinking about him having a urine test and was just excited that he was eating so much of a healthy food. Oh well, I will just not even request the results since I know they will make me crazy even though I know the cause. For the time being, we will keep on doing 5 neb treatments a day as well as his Singulair and Clairitin. He will do this until his scan and then they will decide if he needs to stay on the nebs or what. While I was typing the bottom half of this update Pat, one of the burse practitioners, called and said the urine was all normal even with all the bananas. Praise God!
We arrived at the hospital at about 7:20 this morning. He was still rather sleepy, but seemed fine. He is coughing like mad now that all the gunk is breaking up. He sounds awful, but I guess it is a good thing. He played and colored while we got signed in. He went back right at 7:45 like Tanya had said. Thanks Nuclear med gals!!! I couldn't go. I try to read too much into every little spot even when I know all is fine, so I didn't want to even see it if I knew it could possibly light up. Instead, I went up to 4 tower and sold some NB magnets, thanks guys!! It wasn't long after we (Gam maw and I) got back to the nuclear med waiting room that Paw Paw came out and said that the tech thought all looked fine. These same great ladies have done every MIBG scan Taylor has ever had here in Alabama, so I knew then that things were okay. He was out in no time and we went to clinic to call DR. Berkow. He was down in about 10 minutes and we went back into a room to talk to him. He did not have the final read from the radiologist, but it all looked good to him when he went to read it. That is such a huge relief. I was very much afraid, but did fine until this morning. This morning when I got in the shower it just hit real hard that in a few short hours our lives could be changed forever, again. It is always frightening to have that fear of relapse in your mind, but for it to have been so close was awful. Please say a special prayer for all of those who are fighting relapse and feeling that fear. Also, say a special thank you prayer for Taylor being okay. I will take reactive airways any day.
Taylor will have practice tonight and will play his game at 9:00 Saturday. We hope to see you all there. It is just a practice game and his real season will start in about 2 weeks. We went to school after the hospital and shared many hugs and tears as we breathed a huge sigh of relief. I work with a magnificent group of women, but the fact that it is at a church, our church, was great. I had so much support and prayers. Thank you all! The boys went to Gam maw and Paw Paw's house after school. Taylor was going to go to the movies with them, but when Logan flipped out because he didn't get to go they changed their minds. I came home and got more alone time. I thought I would clean up, again:) however, I decided to chill out and let the day go by without doing anything. When you get hit with such a scary moment you remember that the little things don't matter. I know that, but we had gotten into that "normal" routine and I felt the need for everything to be "right". I hope to never have to be reminded not to sweat the small stuff again. I promise I will remember!
Thank you all SO MUCH for all the prayers, kind words and support you offered us today and always. We appreciate it all so much. Please continue to pray that this indeed is reactive airways and that the next scan is clean and clear. Pray for him to remain NED. Pray for all our friends that are still battling cancer. Pray that the NED kids can stay there. Pray for those that have lost a loved one.
March 9, 2005 Day +707 Day #405 off treatment
We went to get the MIBG injection this morning. The nuclear med lady let him get it early since he was supposed to get it yesterday and it was someone's mess up that caused us to wait. He was left accessed yesterday so that he didn't have to do it again today. Oh and by the way, the port removal surgery was canceled until we know what is going on, so he is going to be mad when he gets that port accessed again next week when we do bone marrow's and he will not forget that I said yesterday was the last time. He will do bone marrows Wednesday in Simon Sedation since he will not need OR. UURGH!!
Anyway, after the injection we went to clinic to get the noodle out and he was so happy. He has not been accessed more than a few hours in over a year and he forgot how to function with it in there. He couldn't bend and was worried about sleeping with it in. He has no clue that he lived almost 2 years with noodles hanging out all the time.
He begged to go to school, so he went and I took off to get all his meds filled and get him started on his nebs and get this over with. Jim had left a message on the NB forum where all the NB parents chat. We had a friend write back that had done this exact thing in December and it turned out to be restrictive airways. Her MIBG did light up, but it was congestion. They say IF nb presents in the lung it is nodular and his is not, so that is all good news.
I will let you all know as soon as we know anything. Taylor will play a game on Saturday at 9:00 if all is well and Dr. B gives the go ahead. Please pray that this is not cancer. Pray pray pray!!!!!
March 8, 2005 Day +706 Day #404 off treatment
Well, the scans didn't come out as "clear" as we had hoped. I will start at the beginning... We got to clinic right on time and signed in and got his port accessed. I went on and on about how it was the lat time that he would have to do that. We went up and got started on the contrast. He must be getting more contrast due to his weight and all, but he just couldn't drink it. He has been known to drink the rest of his tea/contrast mix for lunch if we had no choice, but today he was gagging on every sip. He finally had about 5 ounces and I called the nuclear med dept and had them start timing him. In about 30 minutes we went back. He scanned in no time and was still as a mouse. We got some tea and food and then headed to the MIBG injection. That was a mix up, they only inject on Wednesday and scan on Thursday. I never even thought about it, so we were done for the day, but would have to go back on Wed. and Thursday rather than being done on Wednesday. Oh well, no big deal. We went back to clinic to let them know that he was done and to see if Dr. Berkow wanted to see him today or tomorrow. He chose today.
We were put in a room and waited on him to come in. I felt a little uneasy during the scan, but I just assumed it was nerves. However, I guess it was genuine. Dr. B asked several out of the ordinary questions, so I knew something was up. As you recall, in December he had a spot of blocked airways on his CT of his lungs. Dr. B did call and tell me, but was not concerned. However, it is now bigger and darker on the CT. It is very unusual for NB to relapse in the lungs, but if course NB is also known for doing it's own thing. He is very congested and it could very well be reactive airways or asthma related.
I wont say that we are not scared out of our minds, but we are somewhat confident that it is not cancer. Of course this is all our "assuming" not Dr. words, but here is our thinking. His MIBG was negative last scan period, so if it had been cancer we think it would have lit up. Of course he will have that scan Thursday and if it is clear then that will be a very good sign. Anyway, if it were cancer we feel that it would have spread like wildfire in 3 months time. He is also eating and playing like crazy, I don't really know what to think. Please pray that all is fine and this is not cancer!!!
He has started nebs again with high power steroids and we will keep that up for a few weeks and do another CT. He will get another CT no matter what the MIBG says.
Please pray that this is just a little bump in the road and not a huge road block. Pray that is just congestion and asthma related and not cancer. Pray for us as we wait it out. We appreciate all your support. Please pray that our baby boy is fine.
March 7, 2005 Day +705 Day #403 off treatment
Well, it is Monday. This will be a long week due to scanning and all, but when it is over we will be rejoicing our clean scans and 3 months to not think about scans. Taylor and Logan both are in great moods despite the ever present snot and cough. They both had god days at school. We had to go by Food World this morning and Taylor wanted to bring cookies to school, so he brought green shamrock cookies and Logan brought some pink Easter cookies. It was a fun little treat for him. I am sure Logan could have cared less, but we couldn't leave his class out.
We made it home just before the rain started coming down hard. Logan took a very long nap, so I know he is not feeling real great. Taylor is playing and seems to feel fine. I am so glad to see him feeling well. That is always great to see, but the day before scans you are very glad to see it.
We have to be at the hospital at 7:30. He will have his labs and urine in clinic then go have his CT and MIBG injection. It will be a much quicker day than normal. We normally have to wait to get into Simon Sedation for bone marrows before he can drink his contrast and do his CT. However, we will not do that tomorrow. He will have his bone marrows done next week in the OR when he has his port taken out. We shouldn't be there too long and hopefully Ct will not be too behind that early in the morning. You never know though! We will go back Wednesday for the MIBG scan, that will be a very quick day.
Taylor has a ballgame on Saturday, March 12th. It is a practice game, but then again all of his are:) He will not have another one for 2 weeks when the season actually starts. He will play at 9:00 at the same field as he played last year. That is field 5 in the very back of the McAdory ball park for those of you who would like to attend.
Sunday we will be heading to the Botanical gardens. When Taylor was 14 months old we went there and took pictures. One of them is what we had chalk drawn and is hanging over our fire place. Sunday is the day that Logan is the exact age of Taylor in that photo and we are going to attempt to get a similar shot of him in the same overalls. Who knows if we can find the same spot or if he will cooperate, but we will try. Taylor climbed up on that rock and sat there, I don't think that Logan is as stable in his feet as Taylor was. Taylor looked and acted more like a big boy than Logan does. We will let you know how it turns out and maybe post the similar photos if we get it.
I will update again tomorrow. Please pray that it is a smooth day and that he has clean scans that show NED status. Pray that he has no confusing spots or issues, just 100% clean. Pray that Logan is a good boy for the trip and that it is a smooth, quick day. Pray for all our friends in this journey. Pray for all of our troops and their families that are missing them. Pray for all the families that are missing a loved one big or small. Pray for all those people that are just starting the cancer journey or any up hill battle.
March 6, 2005 Day +704 Day #402 off treatment
We didn't make it to church today. I was so tired after coming in at midnight. I slept as late as Logan would allow which wasn't very late. I took Logan with me and we went to get Taylor and Guh and do some shopping. We didn't get much done with 2 screaming boys. We went to Mary's for a while and let them play. Taylor was in hog heaven with their train set and Logan loved Buddy, the dog.
We came home and grilled some burgers and watched TV. Both boys went to bed a little earlier than normal. They both have nasty noses and coughs. I guess they just have the crud. Taylor found a Goofy costume and has been wearing it and making us feed him dog bone cookies. He can even do tricks:) It is very funny!
Please pray for our upcoming scans. Pray that he has no questions asked, NED results. Pray for my sanity through it all. Pray for all our friends in this battle.
March 5, 2005 Day +703 Day #401 off treatment
Taylor had practice this morning at 11:00. It was still a bit cool for Logan plus I was in no mood to chase him all over, so we didn't go. Taylor and daddy went and Taylor did great. He woke up crying saying that he didn't want to go and I assumed he would not do anything once he got there, but he did great. It is amazing how much he has improved since last year.
After practice we went to the Galleria and had some lunch and shopped a little bit. Once we got home Logan napped and Taylor and daddy went outside. I attempted to nap, but it didn't happen since Logan was really just in the bed screaming rather than sleeping. Taylor went to Guh's to spend the night and daddy and Logan had some gut time. I went to see Clutch with Gam maw and her pals. It was fun, they are a cover band that plays in Panama City. We have seen them several times before. I had fun. I got home and my guys were sound asleep and neither one budged when I came in.
March 4, 2005 Day +702 Day #400 off treatment
Friday at last. Paw Paw picked up both boys from school. I had the entire afternoon to myself and I made myself be productive. I got the house cleaned with execption to my bedroom that is swimming in laundry. We all have way too many clothes and I hate to put it away, so it is folded in piles all over and hung all over. It will all be dirty again soon and then it wont be all over my room:)
We met Paw Paw and Gam maw for dinner. They were a little late because both boys fell asleep. How they made that happen, I'd like to know! Taylor ate good, but then went back to sleep at the table. I will say I am a little concerned with him being so sleepy, but I also know that I am the worlds worst at being overly worried at scan time. Logan ate fair, but not his usual. Once we got home we all just hung out and played. Logan went to bed around 8:00 and I attempted to tackle some of the laundry. I got a lot put away, but it is still all over the place. I would rather scrub toilets and tubs than do laundry. I think that may be a little backwards, but it is true.
That is about it for this Friday. It was a nice day. We don't have too much planned for this weekend, so we will update again next week.
March 3, 2005 Day +701 Day #399 off treatment
We made it, Friday is right around the corner. We had an interesting day today. Taylor woke up earlier than normal. He said he was sleepy, but I thought nothing of it. He wasn't playing. He fell asleep at the table at school. They moved him to the mat and covered him up and he slept a little over an hour. I was a little worried about it as were his teachers. He woke up and ate most of his lunch and played fine in the gym. I guess he really was just tired. He did complain of a headache and an eye headache which would be in the sinus area. I am hoping he is getting a sinus infection or the sun was in his eyes and that is all that is going on.
After school we went to take Logan to Nana's and I went to the dentist. Taylor went with me. He did great as usual. He played with a puzzle and markers for the hour or so that we were there. He made sound effects in the background that sounded like the machines and stuff she was using. We went to the toys store after the dentist. He found several "wow" factor toys. He settled for a pair of Spider man sunglasses. We then headed to get Logan who had been a good boy. It's a good thing too since I have to go get a filling and I will need Nana again.
Taylor was running and fell and skinned his knee and tore his jeans. I think he was more upset about his jeans than the boo boo. We went to buy a patch for it and of course the blue one wasn't good enough. He chose a fire print. He is so funny. We headed home after that stop. Logan was a bit grumpy tonight. He got a bath and went to bed. Taylor has said he was sleepy, but is playing fine. I think ball practice and getting up too early just got him out of routine. He practiced on a weekday last year, but he didn't have to get up early the next day and he didn't really practice he was just there. Last night he ran and hit and really focused on it. We will keep an eye out, but I think it is the pre scan week jitters. Please do pray that he is fine and that scans and tests next week are crystal clear, no questions asked, NED.
That about raps up today. Please pray that Taylor is just tired or is getting a cold and nothing serious is going on in his little body. Pray that he is NED and will remain that way. Pray for all our friends that are battling this and other illnesses. Pray for our troops.
March 2, 2005 Day +700 Day #398 off treatment
Wow! Can you believe it has been 700 days post transplant. Only 31 more days until he hits his 2 year post transplant day. It has flown by, I am not complaining, mind you, but it seems unreal at times that we have done all that we have.
Anyway, on to today's news. We, of course, went to school. Taylor didn't eat much lunch, but that was my fault. I made him a jelly sandwich. He is good at eating new things at school that he would never have touched at home. However, that was not the case today, he didn't like it. He ate all his yogurt and all his graham crackers and we grabbed some Chick-fil-a after pictures.
Pictures, now that was a trip. I had bribed Taylor with the Toy store which we didn't have time for since Logan was the problem today. Taylor was perfect. He looked where the lady said to look, sat where she said, said what she said and smiled great, no goofy faces. Logan screamed bloody murder. I finally had to give him his blanket and even that didn't help. The few that did turn out he is covering his Easter outfit up with the blanket or has it in his mouth. Oh well, you live and learn. We let him go play for a while then tried again, but he went bonkers when I headed towards the room, so we didn't get any of him in his spring/casual outfit. It is probably better than way or I would have spent a fortune! We did get some good ones though.
On the way home Taylor and I were playing one of our many car games and he cracked me up. He was saying paw Paw and Guh and asking if I knew their "real names". He only knows I am Kim, daddy is Jim and Paw Paw is Eddie. I asked him what Gam maw's name was and he said "Gam maw". I asked him what Paw Paw called her and he said "Sweetheart". I personally have never heard him call her that and it cracked me up. I guess Gam maw and Paw paw talk mushy when we aren't around:) He then told me he wanted to sing me a song. He proceeded to sing "One day, a long time ago, I lost my go A's hat and I had to wear my go go hat and I was so sad. Now I found it and I am hap hap again". Yes, he sang it to me and I laughed very hard, it was so cute. Maybe a country music career is in his future.
Once we got home Logan was asleep and I put him in his bed. Taylor was cleaning his room. However, it never seems to get finished. He went to poop and I told him to call me when he was done. I waited and waited and never heard him. I thought maybe I just couldn't hear him, so I went to check on him. He had pulled a stool over and had his feet propped up and his head in his lap and was sound asleep. Again, I had to laugh. I stood him up and he automatically bent over to get cleaned up though he had not even used the bathroom. He pulled his pants off and went to the couch, but he never went back to sleep. I would have left him if I thought he wouldn't have fell off the potty.
Guh is on her way over to keep Logan so that I can take Taylor to ball practice. He is not really wanting to go, but I think it is because he is sleepy. He will be happy once he gets there........
I knew that Taylor would love practice once he got there. He did pretty good. He is getting better at hitting pitched balls rather than off the tee. He is getting good with the alligator or catching ground balls. He still likes that big tree:) The boys did great and had fun, but as soon as coach said it was over they took off to the tree. Once we got home we ate dinner that Guh cooked and watched American Idol. Lo Lo pigged out on mushrooms and green beans. He is so funny.
Please remember Taylor and his continued success against this disease in your prayers. Pray that his upcoming scans are crystal clear and show NED status. Pray that he does well with his Bone marrows and port removal surgery. Pray for all our friends that are in this battle. Pray for the families that have lost a loved one.
March 1, 2005 Day +699 Day #397 off treatment
What a day! I will start off with the sad news. Our fellow NB warrior, Chris, went home to be with Jesus yesterday morning. We never met him, but he and his family were a great help when we were gearing up for NYC. Please stop by and leave some kind words for his parents and family. www.caringbridge.org/fl/chrisbecker We will miss our dear friend. I had been checking in on him for years, he was my adoptee on the www.sharethelove.org website.
We had a great school day. After school we went to get the boys hair cuts. Logan was asleep and I never wake him up, so we just didn't cut his. Taylor did fine as always and we were in and out in no time. We went to get our new car tags. Here are some words of advise for those of you going to do that soon. Take your old car tags off and bring them in with you unless it is your renewal month. Make sure you have the commitment to purchase form with you, it should be with your tag receipt. We were both charged the $59 fee again and had to show that form to prove we had paid it. They really do not have a clue what is going on. To top it all off, she kept my drivers license and I had to go back. Anyway, they are cute as pie and we are so glad that they are finally here. Way to go Dan and Deidre!!!
We went back to Angel Hair and got Logan's hair cut. He was almost finished when he decided he didn't like it. He cried, but he stayed still and he threw his sucker away, he wanted it back when it was all over. He was royally ticked off at me when I took it away in the car. Finally, we were heading home. We got here around 5:15. Jim grilled and we ate dinner. I gave the boys a bath very early, so that we could just hang out the rest of the night.
we are currently watching American Idol. Taylor is in his room playing and Logan is running around biting a foam football. He is a mess. He is laughing big belly laughs. It makes me think back to when Taylor would put his passy in our mouths and laugh like it was the best thing on Earth to do. Their laughs are totally different too.
Please remember Taylor in your prayers. Pray that he is finished with cancer forever. Pray for his friends that are still battling. Pray for the families that have lost a loved one. Pray for those that are just starting. Pray for my fellow Mary Kay consultant, Vivkie, her mom is slowly slipping away. We wish the family well and all our prayers go out to them.
Don't forget to contact us for an NB magnet.
February 28, 2005 Day +698 Day #396 off treatment
Wow, I read back over the past few days and it was a boring read! Don't you love it? Today was not any more exciting than normal, but I do have some business news to share with you all.
First off the Curing Childhood car tags will be in the tag offices tomorrow, March 1st. If you pre-purchased one you can tale the receipt you got to your tag office and you can get your tag. However, be aware that you will not get the full 12 months out of your $50 fee, so you may want to wait until you re-new anyway. We re-new in October, so we are going to go ahead and get them and we will have to pay $50 again in October. We will still get a good 8 months out of it plus it goes for a good cause, $41.25 of that will go to Children's Hospital Oncology dept. every time you re-new.
Also, the Neuroblastoma car magnets are in and they are cute. They are purple and Gold with little kids on them. If you are interested in one they are $2.75. Please email me or call me if you are interested in one and I will get you one or some:) These magnets came about because of the hard work of Trey's mom. Thanks Misty!!!
www.candlelighters.org is the link for the "conquer kids cancer" ribbons that I wrote about a few days ago. My apologies for the incorrect spelling causing the link not to work. It should work now and they have all sorts of things to purchase to raise awareness of childhood cancer.
Please feel free to contact us if we can answer any questions on these "business" topics.
As for today, it was normal. We went school where Taylor was in rare form. He didn't get in trouble, but he was wilder than normal. He is getting more and more comfortable. I am glad, but I don't want him to start getting in trouble. I am not really worried, he knows that he can't get in trouble, but it is funny how different he is now than he was in August.
We have just played since we got home and Logan is napping. I have been updating and haven't done anything productive while he slept. That is okay, I knew I had a lot of catching up to do on this webpage. I hate to leave you all hanging, but as you can tell by the updates, there wasn't much to tell. Please continue to pray for Taylor and his success against his disease. Pray for his upcoming scans. Pray that they are clear with no confusion or questionable spots. Pray for all our friends that are battling cancer and other disease. Pray for our troops. Pray for our friend Chris and his family. He is not doing well at all and may not be with us much longer. www.caringbridge.org/fl/chrisbecker Pray for our new NB friend, Davis, who will be entering stem cell in a few weeks. Also, Sarah, she has the flu and as well as a compromised immune system, she could use our prayers. www.caringbridge.org/nc/sarahsmith
I had to come back and add this. My child is crazy and I now have year book photos for his senior year. They are the ones he will be hiding from me so that I can't put them in the book. He is in spider man underwear and socks with a gun holster around his waste with a green water gun in it. He is running around here looking like a stripper or something. He is cracking me up. Just in the few minutes it took me to type this he has already changed his "costume". Now he has lost the holster for a pair of roller skates that he is wearing on his hands and running and rolling on all 4's. This child is a mess and full of energy. I tell yaw, I am scared to death about scans just because we all know how unpredictable this monster can be, but at the same time, it is pretty easy to see he is full of life and nothing more.
February 27, 2005 Day +697 Day #395 off treatment
What a wet and yucky day today was. I went to church by myself today. After church I went to a bridal tea and a Southern Living party. It was another girl's day out for Temperance and I. We stopped to get dinner for us and the guys on the way home. She came in for a minute and Logan fell to pieces when she left. He cried and that little lip quivered. He was pitiful. He was a crab all day long and didn't nap much, so I put him to bed a little early. He went right to sleep. The rest of us watched the Academy Awards. Taylor had seen more of the movies that were nominated than we had. He was very happy to see the cartoons, but would get upset thinking that they were coming on.
By 10:00 us old fogies couldn't go on any more and we went to bed. Taylor had fallen asleep in the living room floor so we had to move him. We had another great day. If it hadn't been so gloomy it would have been better.
February 26, 2005 Day +696 Day #394 off treatment
Taylor had ball practice this morning. He did pretty good. He started to cry at the end and didn't want to run bases. He was hungry. He does not like breakfast right when he gets up, he prefers to eat after he has been up a while. He didn't get to eat before we left, so he was ready to eat half way through practice. Of course once practice was over and the boys could go play in the dirt and climb trees he was no longer hungry and could play just fine.
After practice we went to Gam maw's and played for while then we went out to eat. Taylor is really into corn dogs right now and he as a little disappointed when Golden Rule didn't have one, but that didn't stop him from scarfing down a grilled cheese. We came home after lunch and played outside. I needed to go to Wal-mart, but no one wanted to go with me, so I called Temp and we had a girls night out. We had dinner and did some shopping.
Taylor was sound asleep on the ottoman when I got home. I moved him to his bed and was out for the night. Logan was already in bed when I got home and I never heard a peep from him either. It was another great day full of playing and goofing off.
February 25, 2005 Day +695 Day #393 off treatment
Logan and I made our way to school today. I am so glad that it is Friday again. It was a normal day and we got home a little earlier since I didn't have to drag Taylor out of the building. Logan fell asleep on the way home and took a great nap. He woke up at 2:45, but I was on my way to the potty so I was going to come get him on the way back. However, he fell back asleep in the minute it took me to go. He slept until 4:00. WOW! I got a lot done while he was asleep. I still have a ton of laundry to fold, but that's okay.
Ghen Ghen came over to watch Logan until daddy and Taylor got home. I went to Guh's and we went to Old Tyme Pottery and then to a candle party. I didn't get home until after 10:00, but Taylor was still up and talking non stop. He had to tell me all about the hunting club and the Fox he spotted and falling asleep in Papa's coat and many more stories. He is so funny telling them. He talks 90 to nothing and rambles until I have no clue what he is saying. You gotta love it!
He had a great time, but he is glad to be home and is ready for ball practice. I had to make him go to bed and he was upset with me about it, but he was gone in no time.
Please pray that Taylor never again has to deal with cancer again. Pray for his friends that fight cancer too.
February 24, 2005 Day +694 Day #392 off treatment
Logan and I went to school today. We left a little bit early and went to Nana's to keep her kids again. She is almost done with her dental work. Logan was the wild child as usual and got in the most trouble. Not really, he was pretty good today. We hung out with Nana for a while after she got home. Soon it was time for us to leave and meet some friends for dinner. I met some old work friends. We haven't all gotten together since the summer. We didn't have a full crowd tonight, but it was fun. I had to cut it short since Logan was tired. I had to bring him with me since Jim and Taylor were still out of town. He was good and ate like a pig, but he had not had a nap, so he was ready to go to bed.
We got home around 7:00. Logan was sacked out before we got here and slept through getting changed and PJ's on. I curled up to talk to Guh and watch TV although I never found anything good on TV. I climbed in bed and watched HGTV until I fell asleep. That is what I call a good night. I most certainly had better things to do, but again couldn't bring myself to do it.
February 23, 2005 Day +693 Day #391 off treatment
We went to school again today. Taylor went in full camo gear. He was head to toe camo in preparation for tonight's trip to the hunting club. He was very antsy waiting for daddy to get off and Paw Paw to get here to pick them up. He of course fell asleep on the way down and was out for the night. Logan was asleep before they left and as for me. I piled up in the bed to watch TV. I really should have been doing something productive, but I couldn't make myself do it.
It was a normal day for us. We played out in the yard for a little bit. We stayed as long as I could stand keeping up with Logan. He can get into real trouble and quick. We said good bye to our neighbors as they moved away and we packed Taylor's bags for the hunting club. He packed like he was staying a month. He needed everything camo that he owns.
Please pray for his continued success against the beast that once ravaged his body. Pray that he never again has cancer in him. Pray for all our friends that are battling cancer and other diseases. Pray for all our troops.
February 22, 2005 Day +692 Day #390 off treatment
We went to school today. It was a normal day for us. We came home after school and stayed there. We cooked dinner and watched American Idol. Guh came over and played for a while. Taylor was hitting the ball out in the yard and was doing a super job. He likes to say "keep my eye on the ball" while he points to his eye then the ball. He is so funny. Logan slept through the visit and missed Guh. She wanted to beat the bad weather.
Both kids got their baths and went to bed fairly early as did we. It was a normal day with nothing to tell about it. Makes for a boring update, but it makes us feel good. Thanks for all the prayers and support that got us to these normal days.
February 21, 2005 Day +691 Day #389 off treatment
Jim was off today, but not me. We had to make up a day since we were out due to hurricane Ivan. The boys went with me, but Jim came and got Taylor a little early. He went to Sonic and ate great. They played outside for a while and were inside resting when I got home. Logan took another great nap while I took care of a few things. I took the boys back outside while Jim went to the dump. Logan swung for a while then played with his car and Taylor's gator. Taylor rode his bike and played ball. We went to the Galleria after daddy got home. We ran into quite a few people we knew. We had fast food in the food court so that everyone got what they wanted. The boys did a flip flop tonight. Logan didn't eat much of anything, but Taylor pigged out. He ate 3/4 a cheeseburger, 2 1/2 nuggets from Don Don's and most of the fries. He then asked for Chick-fil-A nuggets and ate 4 of those. PIG!
We found Easter shoes for both boys and they will have pictures made March 2nd. We just looked around for a while then headed home.
February 20, 2005 Day +690 Day #388 off treatment
We went to church this morning and then the guys stayed home and Guh and I went shopping. We went to Wal-mart, you know the place you can never get enough of. Guh likes it so much she spent some time there while in Hawaii:) You should have seen us two "techies" trying to print out digital pictures on the Kodak machine. It was interesting.
I went to the grocery store all by myself. I love to take my kids all over the place. I have never been one to not go to Wal-mart or something just because I had both kids, but the grocery store is one place I like to go alone. Taylor wants everything he sees and he gets so wild in there. Logan wants to drive the car buggy and that causes hair pulling and "he's on my side" issues. Anyway, I did it this week just me, myself and I and it was great. I got a great reception when I got home. The boys greeted me at the steps with hugs and kisses.
Logan had some dinner and then was ready for bed even though he had taken a great nap. Taylor stayed up and played some. We all went to bed by 10:00. We had a very good, normal day and it was great.
February 19, 2005 Day +689 Day #387 off treatment
We have been busy today. We took Guh's car to the airport since we couldn't pick her up. We got done with that just in time to go to practice. Taylor had so much fun. He even said when we got in the car, "I had a whole buncha fun". I am so glad. It really helped that he had 3 people there that he knew. He also participated. He didn't hit real hot when pitched to, but he did good off the T. We will have to get outside and work on it. He and his school friend dug in the dirt and had a lot of fun. I think he is going to enjoy it more this year.
Logan had a blast too. He ran and climbed and is about as dirty as Taylor. He was very sleepy and got grumpy and he was mad that he couldn't get out on the field with the boys. He was out like a light before we got in the car good.
Last night Taylor told me that his knee hurt then his left ankle, the same spot that he complained of the other day. I admit that I was panic stricken to hear pain especially pain in the same spot, but to see him run and climb and play like he did today, I would have to say he was fine. Please pray on the matter.
After ball practice we came home and Logan took a very long nap. Jim and Taylor went outside and then to Paw Paw's for a while. After Logan woke up we went to Guh's to see her pictures and get our Hawaii goods. Taylor was upset when it was time to go. He got over it though and fell asleep as did Logan. Logan was out for the night, but Taylor got back up for a while.
Please pray for Taylor and that he is still and will always be NED. Pray For Morgan's scans to be clean. Pray for Carter who is re-scanning in NYC. Pray for Chris who is still having tummy troubles and is inpatient again. Pray for Jay who has had progression. Pray for Sarah whose immune system doesn't want to work without IGG injections. Pray for all the others who are fighting NB and other diseases.
February 18, 2005 Day +688 Day #386 off treatment
Welcome to Friday. I am so glad that it is Friday. We had a great day. Taylor woke up when Jim opened the garage door. That is the norm lately. He is upset because he thinks he is coming home and he always hides when he comes home. He comes flying out of his room to get under the dining room table. He is fine once he figures out he is not coming home and he will have plenty of time to hide later. He ate a bowl of oatmeal this morning. Logan ate pretty good this morning. He had some applesauce and some strawberry baby snacks. Not the best breakfast ever, but at least he ate. I
We had to make a Food world run before school. Taylor wanted mac and cheese for lunch rather than the lunchable I had for him. He ate a good bit of it plus his yogurt and some cookies, so it was worth the stop. He got treasure box at school today. He picked a red power ranger toy. He is into power rangers right now and I don't know that he knows anything about them other than he has a few happy meal toys of them. Oh well!
Logan was so tired he fell asleep at about 10:00. His teacher told me we had to stop having our nightly parties and keeping him up so late:) He is quite the party animal too, he went to bed at 8:00 last night. He didn't eat much lunch, but he managed to eat the birthday cake that was brought in by a friend. He didn't want that food last night for dinner and I guess he didn't approve of it for lunch today either. Oh well, so much for chicken and mixed veggies. He loves pasta and he eats it all the time and I was trying to give him something better for him as well as variety, but he wasn't having it.
We are home now and Logan has had a nap and Taylor and I have played cars and watched Shark Tales. The boys are now playing. Taylor is in another one of his get ups. He has on camo shorts, an orange spider man shirt, his camo jacket, a camo hat and a pair of knee length camo rain boots. He alternates the boots with is "go A's" flip flops which are yellow and green flip flops. He is quite the looker today.
Jim didn't end up coaching a baseball team, someone else had already filled the spot. Taylor is on Johnny's team, my good friend, Amanda's, cousin. He will have his first practice tomorrow at 10:00. He is so excited. He is a little upset that coach Kurt wont be there, but he is thrilled that we are on the A's team again. Me too, we wont need new shirts:) He has his friend Will on his team as well as a friend from last year and a friend that is in his class. He is going to enjoy it much more this year. He is one of 3 who have played before and I hope that he will act like a big boy and participate unlike last year. We shall see, I do not think he will do much tomorrow since it will be new people and stuff. However, you never know now that he is in school he may be more open to this whole practice thing.
Guh will be home tomorrow. Taylor is excited, but not as much as me. I haven't had my phone partner for a whole week. Taylor has had us laughing this week. Yesterday he wanted cookies or so I thought. I still haven't figured out what he was saying, but it sure sounded like cookies. We obviously didn't have it as he could not show it to me. I tried to get him to tell me what it looked like and we went on and on over this for a good 5 minutes. He finally cocked his head with hands on hips and told me "ROTYA, COOKIE" or whatever it was he was trying to say. It was real hard not to laugh even though he was cocking an attitude with me. Speaking of attitude, he most definitely has one. I guess that is a little bit of 4 year old and a little bit of spoiled rotten coming out of him.
I have heard from Trey's mom and the Neuroblastoma car magnets are in. She will be shipping me 20 this week. If you are interested in purchasing one for your car please email me or call me. This will help bring awareness to this specific type of cancer. I will have the cost for them as soon as she gets back to me. I am sure they will go fast just to our family and friends, but I am more than happy to contact her again if I run out. You can also go to www.candelighters.org and look under "store" to purchase conquer kids cancer car magnets and other merchandise. These will bring awareness to childhood cancer in general.
Please pray for Taylor's continued success against this monster. Pray for all those who are still battling disease. Pray for our troops. Have a blessed weekend and off day if you are off Monday.
February 17, 2005 Day +687 Day #385 off treatment
We had a normal day today. Logan has not had any fever and is eating a touch better. He slept all night with no complaints and woke up happy. He was full of the giggles today, he has laughed all day. I am glad to see that he is feeling better. Taylor tried to kill me this morning. He woke up and told me "look at how I walk" and was attempting to walk in a limp. I made him go get a million things to watch him walk and run and saw no hint of a limp. I am assuming that maybe his leg was asleep and it felt funny to him. I had his teacher watch him and she said he ran and played all day with no problems. You want to hear something odd? Taylor ate more than anyone at his table today. Ha, the picky kid ate all his lunch. I was worrying over him last week and this week I can not keep him out of the pantry and fridge. He came home and ate a cup of yogurt and some graham crackers. That is fine by me. Logan did fair today which is probably what a normal 1 year old would eat, but not him. He loves to eat. He did better at school than home. He is like the dog, if others are around he has to eat it to be sure he gets some, but if not one is looking he will pick at it and come back to it later.
I am so glad that tomorrow is Friday. Yahoo! It has been a long week and I am ready for it to be over. Please remember Taylor in prayer. Pray he is NED forever!! Pray for Morgan who is scanning this week. www.carigbridge.org/nc/morganbarnes Pray for Cam who has been limping. It seems he may have a broke toe, we hope that is all it is. www.caringbridge.org/fl/camspage Please pray for Chris who is inpatient again with tummy trouble and pain. www.caringbridge.org/fl/chrisbecker Pray for Jay who is in pain as well www.caringbridge.org/md/jaybarnett
February 16, 2005 Day +686 Day #384 off treatment
We ended up at the doctor this morning after all. He woke up at 5:30 this morning with a 101 temp and was just moaning and groaning. I felt bad for him. I tried to rock him but he wasn't having it. He was sure mad at me when I put him back in bed. He went back to sleep after a few minutes of screaming. He was still hot when he got up at 7:30 and I had given Tylenol. He has an ear infection in his left ear. The Dr. said he may have the "viral" thing that Taylor had last week making him run fever, but his ear is bad enough to have caused fever, so he didn't test for that. We went on to school and made it by ten. I hope that he didn't contaminate the place:) We went to get his Augmenton and some Motrin to swap with the Tylenol. We also met Gam maw for dinner and delivered some candles. Logan had fever again by the time we got home. I gave both boys baths and gave Logan some Motrin and Augmenton and he was ready to roll. He was up until 9:00 and then cried when I put him to bed. He didn't dry long and he was out for the night.
Taylor had a good day at school. He was silly! He was a good boy this time when we went to CVS unlike our last visit there. He is getting snottier and coughing more. I am sure it is just cold or sinus on top of his normal crud. He is on his 3rd month of Clairitin and Singulair and we have seen no difference, so I think we are about to go ahead and see the Allergist. I hate to put him through shots if that is what he has to do, but I know he is miserable with always coughing and being snotty.
Looks like Jim may be coaching Taylor's team. They ball park had more little ones sign up than coaches. We have not heard yet if they have found a coach or will use Jim and Dale. We also got a call last night to gather info for Jim's class reunion. Wow, we are getting old. I can not believe that he has been out 10 years and me 9. Seems like yesterday yet a million years ago too. Boy will we have a story to tell. A lot of people that we graduated with have no idea about our little miracle man.
That is about it for today. We have a pretty good day minus the ear infection and fever. Please remember Taylor in prayer as well as all our friends.
February 15, 2005 Day +685 Day #383 off treatment
We had another good day. We went to school and Taylor got candy. He was very good today, he is the only one in his class who didn't have to sit in time out. He ate great! He ate all his ham and cheese and some rice krispie treat and cheese crackers. Logan didn't eat well. He doesn't feel well at all. He had a touch of a fever. I called the Dr., but couldn't get in. I am going to let it run its course and see what happens. I am guessing that he has whatever Taylor had Thursday. I gave him some Tylenol and he seems to be feeling a little better. He still isn't eating, but he has drunk a lot and played, so I think he will be okay. Hopefully he doesn't have an ear infection. He pulls on his ears just as a habit, so it is hard to tell if they hurt or not. We shall wait and see.
Taylor has played great tonight as well as eating great! He had an entire lunchable for dinner and some junk. That may not be the healthiest of choices, but it is food. He didn't want to play outside today, but he has managed to run like crazy inside. Both boys had a bath and were ready to watch American Idol. Logan likes to listen and Taylor likes to sing and dance with them.
We have been wondering what Guh is doing. It is still day time in Hawaii, so I am guessing they are doing something fun in the sun. Taylor found Hawaii on his map puzzle. We were talking about vacation days and when to take them and Taylor piped in with "Guh is on a vacation day". He also told a kid when we were out to eat the other day, "Miss Joy doesn't allow that". The other child was standing in his chair. It is so funny to see him use things he has learned. I know that all these funny sayings and what not would be precious no matter what, but after wondering if he would ever get to this point makes them even more precious.
Please pray for his complete healing and to never again have cancer in his body. Pray for Morgan as she scans. Please check out some of friends sites and leave them some kind words. www.caringbridge.org/nc/morganbarnes www.caringbridge.org/pa/carterfinger www.caringbridge.org/fl/chrisbecker www.caringbridge.org/md/jaybarnett
February 14, 2005 Day +684 Day #382 off treatment
Happy Valentine's Day!
We had a nice, normal day. Yahoo! We went to school and then to Wal-mart. It was must do today. Taylor woke up wanting oatmeal and we didn't have any. Of course Wal-mart was out too and I got some kind of heart healthy stuff for the time being. He hasn't asked for any again, so we shall see if he is going to eat it. Taylor played outside for a while. He wanted Logan to come too, but I couldn't keep Logan on the sidewalk and out of the mud, so that didn't work.
Jim and I went to see the movie Hitch. It was so funny. The kids stayed with Gam maw. She got to see Taylor's messy room. Messy doesn't even begin to cover it. I have never seen it so messy. I just haven't had time to get in there and clean it up. Taylor spent a little while yesterday picking up and he really did get some stuff put away, but you can not tell. He was in bed when we got home but still awake. He has eaten better today than he has been, but still not great. Isn't it amazing how this has all come out. Isn't it amazing that I know what I was doing on every day of every year for 2 years. It is actually pretty cool to look back on it and see what progress and miracles have taken place. Isn't it amazing that our updates are now on such mundane topics and craziness that I pull out of thin air:) I love it.
Not much happening today. I hope you all had a great day. Thanks for signing the guestbook. We are so glad to have gotten that fixed. Please pray for Taylor's continued success against cancer. Pray for Morgan who will begin scans this week. Pray they are all clear. Feb. 20th marks 2 years post transplant for her. YAHOO!!!!! Pray for Chris and Jay who are having progression. Pray for Carter who will get rescanned this week since his last set is not clear enough. Pray for all the families that are missing a loved one or just starting this journey.
February 13, 2005 Day +683 Day #381 off treatment
***Update***: Guestbook link to sign/update Taylor's Guestbook is now working. You should be able to sign his guestbook without any problems. To sign his guestbook please click the link above, or the link on the main page, or just click this link: Sign Taylor's Guestbook If you have wanted to sign his guestbook, but have been unable to, take a moment and sign in and say hello. Also all previous guestbook signings have been moved to the archived guestbook located here:Archived Guestbook.
Finally, Jim was able to fix the issues with our guestbook. Please sign in and let us know you have been here. We love to read the guestbook. Anyway, on with the Taylor update. He is back to normal, praise God. We had a wonderful day. Taylor started the day with 2 bowls of oatmeal, Yahoo!! We went to church this morning and it was great. I have had a rough week and even though I have prayed and prayed over Taylor I have not let it go and let God handle it. I kept taking it back and couldn't get peace. Today's service was all about letting it go and trusting God with our fears and prayers. I felt so much better. Logan went right in and started playing and never knew I was gone. He was good for them. He drank all his juice and snack, go figure:)
After church we had to go to Babies R Us and Lowe's and to the grocery store. We stopped for lunch where Taylor ate a ton of bread and a good bit of mac and cheese. Logan didn't do too shabby himself, but he didn't eat as much as he normally does. Both boys were ready for a nap, so we headed home. Logan took a long nap. He didn't wake up until 6:00. He is still up at 9:00, but he is winding down, so soon we will tuck him in.
We will go back to school tomorrow where I am sure we will get back to normal. Taylor has been full of energy running and being silly today. He has a new song and dance. He is moving to "shake your groove thing, hey, hey". He is so funny. The boys have been into it with each other all night. Logan keeps attacking Taylor and then they yell at each other. I can not imagine how crazy it will be when they are both big enough to fight. Oh boy, I really will be in the insane asylum.
Thanks again for all the prayers the past few days. Please continue to pray for Taylor to be NED forever. Pray for all our friends as they battle their disease.
February 12, 2005 Day +682 Day #380 off treatment
We did make it to the gymnastics meet last night. It was fun for me, but the guys didn't like it to much. Taylor liked the pre-show stuff with disco lights and smoke. It just moved too slow for him, but he did like watching it for a while. It was cool to see an Olympic gymnast, Taren Humphries, do her stuff. All the girls were great, but you could tell she was more polished. We left after 2 1/2 rotations and met Paw Paw. Taylor would not eat, but Jim did. I drove home alone and left the guys to go to the hunting club.
Today Taylor ate a lunchable, pin wheels and beef jerky. He has walked, ran, dug, and everything in between and is full of energy. The guys found a weather balloon and we have to mail it back to the national weather service. Taylor was asleep when he got home, but once he had a bath he was ready to go. We went to dinner with Gam maw and Paw Paw. Taylor still wont eat. We had to make him eat about 1/4 of a grilled cheese. Logan was asleep as soon as we got home and Taylor who had had a power nap was ready to play.
I was ready for bed. Gam maw and I went to pick up Guh's car from the airport and then did some shopping and then Logan and I had a rough time. I wont go into detail, but I will say that Logan is going to send me to the insane asylum before he is 2! I finally got Taylor in bed about 10:00. Once I got him there he was gone, but it took work.
Thank you all for your prayers this week. They have been felt and heard. Taylor seems to be feeling much better now if we can just get him to eat. Please pray for Morgan's upcoming scans, Haley, as she begins her treatment and all our other friends battling cancer.
February 11, 2005 Day +681 Day #379 off treatment
Today was another wake up with shock day. I woke up to the sounds of throwing up yet again and my heart just sank then I realized that it was Jim. I am sorry that he feels bad and boys does he feel bad, but it was such a load off to see that it probably really was just a virus. Taylor woke up in a great mood. He even asked to eat. In fact, he woke up at about 3:30 wanting to eat, but was asleep again before I got him some drink.
We got to school and got some cheese crackers out of the vending machine and he started eating them, but I think he got upset when I couldn't sit with him any longer. He ate a little mac and cheese and cheese crackers. Jim said that if Taylor felt as bad as he does then he understands now why he acted the way he did and refuses to eat. That too makes me feel better about it all.
Guh came to Taylor's Valentine party at school. He has nice red hearts on his face and he was excited to have her there. He went with her for a little bit after school and I picked him up after making a Mary Kay delivery. He is now outside trying to blow bubbles, but it isn't working very well. He took a short little nap and Logan took a looong one. I was disappointed that the best nap ever took place at school and in the car and he woke up in the driveway. Oh well!
We are supposed to go to the Alabama Vs. Kentucky gymnastics meet tonight with Camp SAM, but if daddy doesn't feel much better we may not make it. The boys were also supposed to go to the hunting club after the meet, so I don't know if they will or not. Taylor can always go to the movies with Ghen Ghen if they don't.
That is about it for us. What a week, I am glad to see this one come to an end. Hopefully this weekend and next week will go better. Please pray that Taylor and Ca Ca just have a stomach bug and both are 100% soon. Pray that Taylor starts to eat again soon and pray that Logan and I are spared. Pray for all our cancer kids out there.
February 10, 2005 Day +680 Day #378 off treatment
Today was one of those days that I just did not need. Logan didn't sleep well, he was crying on and off all night. Taylor was coughing something awful and I was so worried about them that I didn't sleep well. I went to check on Taylor at about 5:30 and he was cool as a cucumber, so I felt better and went to sleep. I got up and got ready for work and then went to get Taylor up. He was like a fire ball, in fact he was, he had a 103 temp. It has not been that high since chemo days. I was hysterical. I just couldn't take it with the already lingering fears of why he has been sick and odd acting all week. I was a wreck this morning.
I called clinic, called Jim to come get Logan, I was too stressed out already and didn't need to add him to my list. I called into work and lost it as soon as Joy answered the phone. I couldn't help it. I know she thought I was crazy, heck, I am, but I just couldn't help it. It is very stressful to live in such fear. Anyway, Taylor is saying he is fine and wants to go to school. We did go and drop off his Valentine's before heading to clinic.
We got there at about 10:20 and the computers were down. They were having to hand write all the registration forms and that was taking forever. It was nearly 11:30 before we got registered and was able to go to the back. He weighed 33.4 pounds and was 38 inches tall. After we did labs we went back out to the waiting room and waited. Logan found a new friend. He just walked up to an older gentleman and raised his arms to be held. The guy picked him up. Logan soon wiggled down and we assumed he realized he didn't know this guy. Nope, he just wanted his blanket and he went right back to him. Paw Paw, as we learned his name was, needed that little distraction. He was there along with his wife, daughter, son-in-law, and granddaughter who was being diagnosed. We did not know yet what her diagnosis was when we left, but it was a solid tumor on the kidney. Please pray for our new friend, Haley, and her family as they start this battle.
I had to leave to go to Nana's to help out so she could go to the dentist. I hated leaving them there. I have such a great need to be in control and know what is going on and I couldn't do that if I was not there. Anyway, I left and they were called back as I was leaving. I called as soon as I got to Nana's because I couldn't wait any more. They had seen Dr. Watts and he said counts were perfect. They took some urine and it was fine, but I don't know what they tested for. Dr. Watts guesses that he has a virus. Hmmm, that sounds familiar. Oh, and by the way, his temp at check in was 97.8 and later on 2 different thermometers was 96.4. I think he just likes to ruffle my feathers at times!
He and Jim went on home where he ate a few tater tots and played. We all met up with Gam maw and Paw Paw for dinner. He ate a little mac and cheese, but it took a lot of bribing and threatening. He was determined not to eat. We got home and took a bath and while we were doing that he said "let me show you what me do today" and proceeded to pretend to limp. I of course about blew a gasket. I have interrogated both he and Jim about this one. He is not limping and I have not noticed any before he said anything, but I still do not like it one little bit, not at this point, after all we have done this week. Taylor told me that he did it racing daddy at Lowe's, but then changed it to "it's okay, it not hurt anymore". Again, he is not limping, but I am afraid that he is afraid to tell us if he has pain or feels bad. I don't blame him the way I over react and knowing what he will deal with at the hospital. I did go ask Jim if they raced and he did say they were running and he fell and did limp a little, but stopped. I guess he just twisted it a little. I hope so anyway. I am sure he did, but this is not a good time for all this. My poor little nerves are so frazzled and fragile. No one yell at me or look at me the wrong way or I may fall apart.
It is not nearing the 11 O'clock hour. Taylor is playing cars because "hawk eye" here needs to watch him walk and talk and everything in between in order to rest at all. So, after this long day we are heading to bed. Please pray that this is all me and not cancer invading my baby. Pray that he is NED forever and cancer never again invades his little body. Pray for my sanity and Taylor and Jim's sanity to put up with me. Pray for Meredith's sanity too because I will make her crazy until I feel better. Pray for all our friends in this battle.
February 9, 2005 Day +679 Day #377 off treatment
We went back to school today. Taylor seems to feel better though he will not eat much and is in an odd mood. We started the day on the wrong foot and I am not sure if that is the reason for his behavior or just me over analyzing it all. He is not easy to get up in the mornings at all, he gets that from me. Anyway, I have to drag him out of bed and by the time he is finally dressed and ready it is past time to go. He decided that he needed his hat and sunglasses. He couldn't find it, so he got mad and was pouting and talking ugly. I started down stairs and that made him mad because he wanted to be the line leader. We finally got to school and I parked under the awning since it was raining and he got mad because I told him to climb to the front and get out which is what he normally does anyway. Today he wanted me to say "1,2,3 wake up Jeff". That put him in another frenzy and he stood in the rain until he got mad because he was wet. His teachers said that he was quiet, but he played. I peeked in on him several times and he was playing quietly. He did ride the police car and run around in the gym. I guess he was just tired and week after all he has had very little food. Today he ate all the ham and 2 pieces of cheese from his lunchable and a bite of the Twix bar. I guess that was okay after being sick. Okay, I guess we will say he is fine and I will TRY to stop analyzing him so much. By the way, I thank you all who emailed me. I am not glad that any kids are throwing up, I hate that for any child, but it did make me feel better to know that it is going around.
We were on our way to Wal-mart to get a new pillow since he threw up on his and I threw it away which by the way really ticked him off when he realized it at bed time last night. Speaking of, he was begging to go to bed at 6:00, so at 7:15 I finally tucked him in and by 7:20 he was down stairs in the playroom. At 10:00 when I tucked him in he begged for 5 minutes more. Crazy! He was his usual self when I picked him up too. It was nice to see that ugly side for a brief minute:) Back to Wal-mart, we didn't go since it started pouring rain on the way home. We cam eon home and put Logan down for a nap which he never took. He just screamed for an hour. We are all going to go back tonight.
That about does it for this Wednesday. We will update again soon. It will be a busy few days with all our parties and camp stuff going on this weekend. Please pray that Taylor is fine and that he is NED forever. Pray for all our friends battling cancer too.
February 8, 2005 Day +678 Day #376 off treatment
The rest of today has past rather quickly. Taylor never did eat the lunchable that I gave him. He said he was too cold or sick to eat. He eventually got mad at me for talking about eating, so he went to his room. He was in his bed when I went to check on him. He did start running fever. I didn't know what to do with him. In the beginning we were not allowed to give Tylenol until his temp hit 101.4 and we called clinic. I wasn't sure if that was still the case. If he has something like a cold and I know he is fine, I will go ahead and give it anyway. However, after last night I wanted to be sure it was a bug and nothing more, so I held off until I heard from clinic. Since he still has his port we are still supposed to wait until clinic says give it and they draw cultures. His fever went away on its own before Kelly called back, so it didn't really matter.
Logan finally went down for a nap around 1:30. Taylor and I laid in the floor and snuggled. I fell asleep, but Taylor never did. He would get still and then pop up. He says one minute that he feels fine, the next he has a tummy or headache. I have no idea how he feels. He plays like a wild man for a while then he crashes and looks like a lump. I hate this waiting game we tend to play with things like this. He did ask to go to school again, so maybe he is over it and will do great at school tomorrow. He was upset when I told him that school was over for today and he had missed it. I told him we would go tomorrow and he said "I will make my friends sick". Poor baby!
After Logan got up and started eating a snack I made Taylor an offer. He has a fold up ruler that broke and he loved it. I told him if he ate a good bit of something he could go get another ruler. I know bribery is not the way to go, but hey whatever works at this point. Anyway, he finally ate about half a bowl of Mac and cheese. It has only been about 10 minutes, but so far we are okay. Praise God!
Please continue to pray for him and that this is a virus that will pass, fast! Pray that he is NED forever. Pray for his friends who are in the fight too.
Monday night ended like any other. Taylor fell asleep on the couch watching TV. I moved him to his bed before I went to bed. I heard him cough several times and for some reason had a bad feeling about it. At 2:30 in the morning I woke up and I have no idea why. I decided to go check on him. I flipped the hall light on and he sat up and started crying. I ran in and he was sitting in a pile of vomit. I started towards the bathroom with him, but didn't make it. We had to stop and use poor night night to catch it. We continued on our way to the potty and made it this time. He did vomit a few more times in the potty before getting in his sleeping bag in his bedroom floor. I took about 20 minutes or so to get his bed stripped and the wash started. I had just settled back into my bed when I heard the familiar sound of throwing up once again. I ran into his room and he was crying and again sitting in vomit. We ran to the bathroom, but nothing else happened. I changed his clothes and put him in another sleeping bag in the living room floor. I was about to leave to go clean up his floor and get the new load of laundry ready to wash when he said "uh oh, I gotta go". I grabbed him and took off, we made it and took care of things with no mess this time. He headed back towards the living room and as soon as he hit the hall it hit again. That was the last episode for the evening and so far today he has not had any trouble. He will not eat though. He fell asleep fairly soon after 4:30 and woke up around 9:00 or so this morning. He has no fever and I think that is good. He is playing some and being wild, jumping off furniture and what not. Things that are not allowed, but are a welcomed sight after a scary night. Anyway, at this exact moment he is laying down again. I gave him some food and he got in bed. I am not sure if he still feels bad or thinks he may throw up if he eats. I want him to eat so that we can see if it stays down, he has had a cup of tea.
I am a nervous wreck. I just do not deal well with these little episodes. I emailed Dr. B. and he said there is a virus going around and to push fluids and let him know if it worsens. Please pray that it does not worsen and that it is not cancer related. I really think that it is just a bug, but I still worry. I will update again later, I just wanted to let you all know what we had going on. He did ask to go to school, so hopefully he is feeling better. Thanks in advance for all the prayers!
February 7, 2005 Day +677 Day #375 off treatment
Monday again! This week is full of fun. Tonight we are going to make our Valentine's and goodie bags for school. The boys will both have a class party on Thursday and Friday. I am sure that Logan could care less other than there will be cookies and candy involved. Taylor is very excited. I am sure that he has no idea what is going on other than he gets to give out his Spider man Valentine's that he has had for 2 months. He had a party at school when he was 1 and like Logan only cared about food. He ate an entire tub of strawberries by himself that day and puked pink everywhere that night. The next Valentine's day was spent in the hospital and the last one he was home, but had no one to give cards to.
Anyway, the day was normal. We went to school and we made it out the door on time with no head injuries or fits. Although Logan was a bit of a pill this morning and still is. He is sitting in the kitchen crying and I have no idea why. He is very tired, but he wont nap, so there he sits. Taylor is slithering/crawling like spider man on the floor. It is a very strange technique that he has that I am not sure that I could do. We came home after school so that Logan could nap, but as you see that didn't work. We are hanging out until Guh comes then we are going out. She is about to leave on a vacation to Hawaii and wants to see us before she goes. I can't believe that my luggage and puzzle books are going to Hawaii without me. I took her to NYC with me:) Just kidding Guh, have fun.
Another short update due to a great day. Please pray that it stays that way. Please pray for NED status forever. Pray for Morgan's upcoming scans. You can go to her page at www.caringbridge.org/nc/morganbarnes to sign up for a prayer time during her scan days. A friend has set that up for them. Also pray for Gail and Janet as they train and run in the Mercedes marathon this weekend. You can leave them some words of encouragement at www.caringbridge.org/al/todds or www.caringbridge.org/al/janiesims
February 6, 2005 Day +676 Day #374 off treatment
This morning we moped around and did nothing. Went to breakfast because Taylor asked for pancakes, but once we got there he ordered a grilled cheese. Go figure! He hasn't eaten good in a few days, so at least he ate a little. Logan on the other hand did great. We went to the Dollar store and to Big Lot's to kill time. Taylor was not feeling well and wanted to go home. He was complaining of tummy and back aches. I was on edge by the time I got home. He was pointing to his ribs and chest area and he eventually burped two huge, manly burps and seemed to feel better. He had asked to poop and never could, so I am guessing he had a little gas. I certainly hope so. I hate times like these. I have said it before and I will say it again, cancer kids should be spared the normal ailments such as gas and sniffles. They have suffered enough and so have their parents.
Anyway, he is now outside playing in his bounce house and on his riding toys, so I guess he feels better. He said it didn't hurt, but you never know with him if it is not hurting or he doesn't want to tell. I don't blame him for not wanting to tell, but still I wonder at times.
We all played outside today for a long time. Logan loved it. Taylor pushed him on the 4 wheeler and I pushed him on the bike. He raked and played with a ball. I had to bring him in when he started getting into everything. Jim was washing the car and he kept wandering over to that and he wanted to climb up the front steps and he wanted to play in the ditch. UURGH! He was happy to come in and get a snack.
Whose watching the super Bowl? I guess everyone, you never know what you night see during the Super Bowl! Well, we will wish you all a good evening and we will check back in soon. I promise I will update sooner next time. We have been busy with normal life this week and just didn't get to the computer. I did get to some websites and checked in on some friends. Keep all our NB warriors in your prayers as well as our other cancer friends. Remember those who are missing a child or have just recently been diagnosed. Please pray that Taylor is NED forever and that what ever has his belly aching is nothing cancer related.
February 5, 2005 Day +675 Day #373 off treatment
Today was a low key day. The boys went to Paw Paw's to jump in the jump house and play. Logan was truly dirty, he played on the swings and in the dirt with Taylor. I went shopping with Guh. I met up with the boys and the rest of the gang for dinner later in the day. We had Mexican and neither of the boys ate well at all. I think they were too tired to eat. Taylor was so excited about his prize I got him. It was a fold up ruler. He loves to measure things. Of course he doesn't get it. He will measure your leg and say "60 pounds".
After dinner we went home. Logan was asleep by the time I got his bedroom door shut. Taylor climbed in my bed to watch the ABC movie and help me fold clothes. I finally got him tucked in around 10:15, but I am sure I was asleep before him. He had caught a second wind and was playing cars.
February 4, 2005 Day +674 Day #372 off treatment
This week flew by. I can't believe it is Friday, I was just complaining that it was Monday. Today was a school day. Taylor seems a little off kilter to me. No one mentioned that he seemed odd, so maybe it is me. He was shivering in the lunch room, but he didn't have fever. He was running and playing in the gym after lunch, so I guess he was just cold. When we got home we played cars and watched his new video that Macey gave him. He loves it, we will need a new one before long because he watches it 10 times a day. It is a very cute learning video.
We started this day with a bang, literally, Logan fell and hit his head on the sofa table. He immediately had a black eye. I am not used to having a healthy child with a goose egg, so I called the Dr. They took my info and called me back over 4 hours later. I am glad he was okay. He was fine by the time we got to school, he didn't even have the black eye or goose egg by the time we left school. He is such a big boy, he walks in line with his friends, he doesn't want to be carried. He is so funny!
Both boys stayed with Paw Paw while Jim and I went off for a little while. We went back to get Logan, but Taylor spent the night. We came home and put Logan to bed and cleaned up very little. We really just laid around and watched HGTV.
February 3, 2005 Day +673 Day #371 off treatment
This week is flying by. We left school a little bit early today and went to Nana's so that she could go to the dentist. Jim took Taylor to work with him and he slept for an hour and 45 minutes on his desk. He never made a peep. Thanks Ca Ca for helping me out today and taking him. Nana's kids were good, but I was so bored. I don't know how she does it everyday with no one to talk to. I am used to having other teachers to talk to. I left there at the same time that they left work. We got home near the same time. We went to eat dinner with Paw Paw and Gam maw. Logan chowed down on some baked beans and a lemon. He is strange, we know. He loves lemons. He will eat all of it not just suck on it.
We came home to take a bath. I changed Logan's diaper and left him naked to go run water. He ran and got under the dining room table. I thought to hide from the bath, but that wasn't what he was doing. He tt'ed all over the floor. He didn't make one peep about the bath this time. I don't know what that was about or if he will do it again on the next bath. Both boys were sacked out soon after their bath.
February 2, 2005 Day +672 Day #370 off treatment
Wednesday already. It is a gloomy day again today, but we are all good. We went to school and then home. Guh came over again to get some stuff and play with the kids. We played Taylor's Spider man game. We did a lot of laziness tonight. My poor kids didn't even get a bath. I think they will live. I am mad at Temperance. We were having a party together at my house and she changed her mind. That is not what I am mad at, I am mad that she told me too soon and my house is a disaster only 24 hours after she told me. Next time tell me the day of:) Just kidding, I am not really mad, I just found it very funny how fast I quit worrying about it being kept clean. It is horrible already. I guess I need to pretend that there is a party coming up every weekend. Oh well, that's okay, we like it messy.
Here we are at another short day. We just don't have anything going on right now. I am sure it will get exciting soon, it always does. Please pray that Taylor is NED forever. Pray for all our friends in the cancer world.
February 1, 2005 Day +671 Day #369 off treatment
I can't believe it is already February. It will be Christmas again before we know it. Today we went to school as usual. Taylor likes Tuesday because he likes the small class, but he misses his friends from the other group. I finally got some girls. I have had 4 boys in my T/Th group all this time. I am so glad to have girls now.
After school we went to Wal-mart as usual. Logan fell asleep and rode in his stroller. Once we were done there we went home. Logan continued to nap and Taylor and I played cars. Later in the evening, Temperance and I went to a Pampered chef party. We had a good time and spent some money.
I came home to bathed kids and Logan was in bed. Taylor was still up and playing. Logan didn't care for the tub again tonight, but it wasn't a huge ordeal like it has been the last few night.
These updates are getting shorter and shorter. Isn't it great! Please continue to keep Taylor's good health in your prayers. Pray for all our friends fighting cancer.
January 31, 2005 Day +670 Day #368 off treatment
Back to school. Logan is finally feeling better and is back to his old self. Thank goodness. He got a new little boy in his class that is younger. He is jealous that the baby is getting "his" Becky's attention, but it is making him better at home. I think he will get over it. When I checked on him he was off playing in his police car. After school I took the boys home and Paw Paw watched them while I went to sign papers for the Jeep. Taylor is so happy to have it he can't stand it. He thinks it is cool! Guh came over tonight and we ate and played in Mary Kay. After she left we started the bath process. That has turned into an ordeal. I don't think I mentioned it yesterday. Logan flipped out and we thought it was due to too much bubble bath, but he did it again tonight in clear water. He is stiffening up and refusing to get in the tub. He will run and hide if you turn the water on and we used to turn it on and him come running in trying to climb in. I am not sure what it up with this new behavior.
That is about all we did today. Please pray that we continue to have these kind of days. Pray that Taylor is NED forever. Pray for all our other friends fighting cancer and other diseases.
January 30, 2005 Day +669 Day #367 off treatment
We were rather lazy today. We all slept a little later than normal. We got up and went to Target and to Drivers Way to test drive a car. Jim's car has finally died. We finally got home around 3 or 4 and just hung out. Things are still clean since I am having another party in a few weeks. We are trying to stay on top of it. Yeah, like that will last.
Pippy came by tonight. Taylor and Logan both did some showing off. They are so silly. That was about it for us today. We did a lot of nothing. Thanks for your continued support!
January 29, 2005 Day +668 Day #366 off treatment
Saturday at last. We had no phone due to a main line down in the area. I had a candle lady coming from Auburn where the ice storm was. It was a mess. We got a phone back by mid afternoon and the candle lady made it fine. We had a great time at the party and I got some great stuff. Thanks guys! After everyone left my two best friends hung around until we decided we better invite the men and kids too. We all grilled and watched all 5 of our kids play together. That is the kind of stuff I imagined my future being. Guess what, now we have it!! It was a lot of fun and when it gets warm and all 5 kids, (4 of them are boys) can play outside, we will do it again.
Logan stayed with all of us women for a while so that daddy could take Taylor to his best buds party at pizza hut. He was so excited both before and after the party. I am loving that he is so involved now.
What a wonderful way to celebrate being one year off treatment. Taylor took his last dose of Accutane, the last thing he did as treatment, on Jan. 29, 2004. He has not has any meds or other treatment for cancer since then. Praise God!!
It was a long day and we all were sound asleep as soon as we hit the bed. It was a great "normal" day for us. Please continue to pray for these wonderful days. Pray that Taylor is NED forever and cancer never again invades his body. Pray that Logan never suffers what Taylor has. Pray for all our friends battling cancer.
January 28, 2005 Day +667 Day #365 off treatment
We were able to go back to school today. We had a good day. After school we went to get mine and Taylor's hair cut. Logan was asleep in the stroller and we wanted to hurry before he woke up, so I went one way and Taylor went another. He did great. He went to the kid room and got his hair cut all by himself and when he was done he came out, got a root beer sucker and sat down and waited on me. He is getting so big! We were going to go to Wal mart, but it was too cold and Logan was still asleep. We went home and played and watched cartoons.
Once daddy got home we got ready to go to Christian's house for his birthday. Happy birthday Christian! The kids had a great time. Taylor found a spider man riding toy and was content. Logan was all over playing with everything. Of course there was food, so he had fun with that. He puked all over the rug, sorry guys! After the party, I dropped off the guys and I made my Wal-mart run. I needed a few forgotten things for my candle party. That took forever since they had about 4 lanes open. Once I got home I got down to business cleaning my house since I was off all week and didn't do it.
January 27, 2005 Day +666 Day #364 off treatment
Last night Taylor was playing with magnetic letters on the fridge. He spelled his name all by himself which was good in and of itself, but how he did it was the amazing part. He could not find and "R" so he got a "J" and turned it upside down to make a "r". Very creative in general, but genius for a 4 year old to figure out! He blows my mind sometimes.
We stayed home again today. Next time one of them is sick, I am going to work and giving my pay to who ever volunteers to keep my kids. It has been a while since I was home all day with them. They weren't bad, but Taylor wanted to go out and it was too cold and Logan just didn't feel good. It was crazy. I was glad when it was time to go to a friends Pampered Chef party. I had a good time and got some new kitchen tools since I cook so much. Really I got a slicer to make things easier when I cut the kids apples and stuff. I like things simple!
Once I got home we did baths and what not and we all went to bed. Not a big day for us.
January 26, 2005 Day +665 Day #363 off treatment
Logan woke up cool as a cucumber. I started not to even go to the Dr, but decided we better go since he has been running fever on and off since Friday. Good thing we went since he has Strep Throat. He started Amoxil today and should be feeling better soon. I hate that he has strep, but I was so relieved to get a definite diagnosis and not have to worry about mysterious fevers, I don't like those you know. He can not go back to school until Friday. UURGH! I would rather get up and go to work after the last 2 days with these boys. They have worked the nerves today!!! Taylor had an all out tantrum in CVS while I waited for them to call the insurance co. about something they couldn't figure out. We were in there about an hour! He was spitting and kicking, but when he BIT me that was the end of it. He lost the candy bar he had gotten and then he pitched another fit. It was very embarrassing!
Once home he continuously woke up Logan, I finally made him go to bed where he drifted right off and left Logan to scream. Logan did finally go to sleep, but not for long. Once Logan got up he knocked over the CD rack and 2 dining room chairs plus played in the toilet while I did laundry. He is furious right now because he is in his high chair and doesn't want to be.
I talked with Dr. Kushner in NYC and the 3F8/GM-CSF protocol calls for scans every 3 months for 2 years after the start of 3F8. That means he has to get scans in March and June then he can go to every 6 months. I have a few months before my heart gives out over the stress of going 6 months between! We will be doing his bone marrows last and in the OR rather than in Simon Sedation and they will have Dr. Barnhart remove the port then. That way he only has to be put to sleep once. I have asked that the cuff that held his broviac line be removed as well. That will make it a little bit more cutting, but they couldn't do it when he had it removed and the port put in due to his very borderline platelet count. It was agreed that it could come out when the port did, but that it could stay in. I want it out, that is just a foreign object that could cause infection. Why keep it?
I went to the grocery store tonight. I had to take the boys since they wont let me leave the room much less the house. Jim went too, Logan didn't feel like being there, but would have been just as mad if I had left him, so it didn't matter. I wont be home the rest of the week in order to go. I am going to a Pampered Chef party tomorrow with no kids! Friday we are going to Christian's birthday party. Taylor is so excited to go to Christian's house and play.
Well, that brings everyone back up to speed with the happenings in the world of Watts. We will go back to school on Friday and get back to normal. Hopefully the meds will kick in and Logan will feel better soon. He is already fever free, but not eating real well.
Pray that Taylor is NED forever. Pray that he doesn't get strep, we do not need to have anyone else missing school or work. Pray for all our friends that are battling cancer.
January 25, 2005 Day +664 Day #362 off treatment
Today we went to clinic 8. Notice the new number. Our new clinic is now opened and it is very nice. It is much bigger than the old clinic and is equipped with a TV/DVD in every exam room. The waiting room has a ton of different TV's and video systems. I do not like going so late in the morning. It took us about 45 minutes to even get registered because it was so crowded. We finally got weighed, he was 34 pounds. We waited for a while before going to get accessed. We only got accessed for labs so that he got flushed, it had been about 6 weeks. He didn't have to leave the needle in. He must trust Kandi or she has an extra gentle touch because we did not get the fit that we have been getting at access time. Once labs were drawn we went to collect urine and then to wait. We waited way to long, we ran out of snacks and I packed a ton! It was nearly 1:30 before we left and Logan was ready for a nap and lunch. It wasn't too bad.
When we finally saw Dr. Berkow, he tried to kill me. He is ready to start scanning every 6 months and eliminating bone marrows all together. Um, I can't handle that! Can you imagine how crazy I would be or how crazy I would make Meredith! He wants me to talk to NYC and see what they think before we go on with this plan. I know that it is huge that he is ready to go that far apart, but I will be honest, it will not hurt my feelings if NYC said no. We also talked about port removal!!! The only reason he has had any resignation is due to the craziness of this disease. He has reached a huge milestone just by getting to this point, but some kids do relapse 2, 5 or 10 years out and he didn't want to de-port then need it. I say pull it, we will cross that bridge if we ever have too, go willing we never do.
Taylor showed his butt all day. He screamed and talked ugly. He was all over the place running and jumping. I know that it is great to see that he is so healthy, but it is still annoying when you are stuck in clinic and your kid feels bad. I could not make him stop. He continued his behavior while Dr. B tried to examine him. I was so embarrassed.
We met Guh at the Olive Garden and he ate pretty good. Logan still isn't up to par and didn't eat much. Taylor went home with Guh and Logan and I came on home. Jim picked up Taylor on his way home from work. We just hung out at home tonight.
We will be taking Logan to the Dr. tomorrow. He spiked a 101 fever today and is just laying like a lump. I will let you know what we find out. I must say, I do not like these out of the blue fevers. They tend to make my mind wander where is shouldn't!
January 24, 2005 Day +663 Day #361 off treatment
We went to school today. Logan is still very blah, just not feeling like himself. We stayed at home tonight and did a lot of nothing. The boys played and took an early bath. Logan went to bed early. Taylor fell asleep playing in his room. He slept in the floor. I cleaned out my car and packed up for a day at the hospital.
Taylor sat in time out at school today. He ran over someone with his bike. He is getting to wild for words these days. He is pretty good at school, but he is coming out of his shell more everyday and I am afraid he is going to get bad at school too.
Pray for Taylor's continued success against this disease. Pray for Morgan and her family as they start another stay in NYC after a very eventful trip up there. www.caringbridge.org/nc/morganbarnes Also pray for Carter who has gotten some not so good news about his disease status. www.caringbridge.org/pa/carterfinger
January 23, 2005 Day +662 Day #360 off treatment
Party day! We went to Golden Corral for lunch before the party. Jim dropped me off and I ran in to pay and get a table while he parked. Children 3 and under eat free and 4 and up are nearly $4. I was not paying $4 for Taylor to eat a handful of ham and a few bites of ice cream, so I said he was 3. He is only 4 days over 3! Well, he proceeds to say "uh uh, I'm 4". The lady didn't hear or didn't care one, but I felt as big as an ant for lying, but that was too high. Heck, Logan is the one who should be charged, that boy can put away the food. However, he didn't eat much today. He is not running fever today, but still not up to par.
After lunch we had to make the daily stop at Wal-mart for the last minute forgotten items. I ran into an old friend, it was great to see you Leigh. We went to Guh's until time to leave for the party.
Taylor was being shy and not talking to the girls that were there, but when CJ and Andrew got there he turned into a wild man. All the kids had a blast playing. Logan loved the bounce house at Halloween, but not today. He screamed any time we got him near it. He was happy with the cozy coup. We adults even had fun playing. Taylor sat in the throne chair to open his gifts. The boy has hit the jackpot again. He got some great gifts and is already playing with it all. We will post pictures soon of the past few months. It is about time for some new ones.
Logan has yet to have a nap and is very grumpy. He tried to sleep during the party, but it was too busy, he might have missed something. He is running a fever again, so it looks as thought we will be back to the Dr. tomorrow. I can not help but worry myself even though I know that it is a bug of some sort. Taylor has not eaten worth a squat today or yesterday and of course I worry about that too. Please pray that both boys are fine and this is just a passing thing.
We will update again in a few days. We go to clinic on Tuesday and I am going to make an appointment for Logan too. I will let you know how those go. Please continue to pray for Taylor's health and NED status. Pray that both boys are fine now and just have a cold. Pray for all our friends in the cancer world. Pray for our troops.
January 22, 2005 Day +661 Day #359 off treatment
Today is cleaning day. Logan is still not feeling well and he has a 100 temp. He has taken 2 naps and that is not like him at all. Taylor and the guys got home around 2:00 and we cleaned up and packed up what we needed to go make the cake.
Finally, we got it right on the 1st try!! We baked the cake on the first try, it didn't stick to the pain or anything. The entire cake was perfectly formed and easy to see how to ice it. Yahoo! It turned out very cute, Taylor liked it. He will probably not want it tomorrow, he ate a ton of icing as we went along. We will go back to Guh's tomorrow to get the cake. It was much easier to do at her house. It was easier as far as carrying it tomorrow, but also it was her kitchen I messed up:) I know I am horrible, but I hate to cook and clean the kitchen. Yuck!! A lady asked me in Wal-mart today if I was a baker. I just laughed and told her I could live in a house with no kitchen! I really could, I just need a fridge and a microwave in a corner somewhere and I would be set.
Logan was fighting sleep, but finally fell asleep. I ran him to the car and he never budged even when I put him in bed at home. Taylor fell asleep in the car and was out for the night too.
Not much to report, Taylor had fun as usual at the huntin' club. He went to Woods and Waters a huge outdoor store in Tuscaloosa. He went to Hooters for dinner. Not my first choice for his dinner, but he had the girls wrapped around his finger. They wanted to sing happy birthday to him, but he wouldn't let them. He was shy! He lost his balloon in a tree and that led to a huge melt down. He also pitched a fit and popped a hole in his brand new Spider man hover disk. Daddy was able to fix it, but he was again distraught over it. Life can be so tragic at times, but oh how we love these kind of tragedies over the ones we have experienced in the past.
January 21, 2005 Day +660 Day #358 off treatment
TGIF! This has been a long week. I guess all the birthday excitement and all made it kind of hectic. Taylor is totally excited about his party and all his friends coming. He, Paw Paw and Ca Ca went to the hunting club again. They will be back tomorrow after noon and we will go to Guh's to bake the cake. No, we are not running to Guh's because we are "baking challenged". We are doing it so that the precious cargo, aka the cake, doesn't have to travel far. I would die if we got it made then ruined it in the car. Pump It Up is less than a mile from her house and only a few turns, so we feel safer about that distance than the 20 minutes from our house.
Anyway, tonight was just Logan and I. He is so funny. He tried to eat some gum, he bit the paper and all. He was mad when I took it away, but he will live. He had a hard day this morning, but after a huge poop, he seemed better:) Last night he left a green trail from the bathroom to the living room. Not the kind of trail you are thinking of, but a soap trail. Taylor has bottles of colored soap and Logan snagged one when we were in the bathroom doing laundry. We didn't know it and as he crawled thru the house he left a green mark every time he put his right hand down.
Taylor sat in time out today for going behind the curtain that hides the toys and church tables and chairs. He seemed upset when I talked to him about it, but I think that was more because he thought I was mad. I know that he pouted and poked his lip out when he sat on the red line, but I don't think he really cared. He got a sticker later for being a good listener. He is so funny at school. He made an "A" out of his gold fish at snack, however, he didn't get to finish eating them since he played to long rather than eating. We are used to that! The best part of the day was the conversation he had in the eye Dr. We had to take Jim this afternoon and while we waited he and Logan were playing with a lego table. A little girl and her dad came in and she came to play too. She told me Logan was "so beautiful" as she rubbed Logan's head. I don't think he liked it, but he sat there. She asked me what "my little brother's name was" talking about Logan. She told me her brother's name was Phillip and she was Carmen. She then moved on to Taylor. In the past he would have ignored her like the plague, but not today. Not the new 4 year old Taylor Watts. She asked him his name and he immediately said "Taylor Watts". She said her name and that she was 4. He dropped his legos and held up 4 fingers and yelled, "I am 4 too". She invited him to her clean house for dinner and he said he couldn't because he was having a spider man party. She proceeded to tell us that she didn't go to school because her tummy was sick and she had the runs 2 times. Taylor just looked at her. It was classic, I would love to have it on video. Everyone in the waiting room was laughing, but her dad who tried to ignore that last comment. It was so cute! I was just proud that he didn't shy way rather he had a normal conversation with her and played. He has come so far!
We came home and Taylor played outside for a while before Daddy got home. He went to the hunting club with Paw Paw and Daddy again tonight. Logan and I stayed home and played. Logan went to bed at 7:30, he doesn't seem to be feeling very good.
Please pray for Taylor and his continued success against NB. Pray that Logan doesn't get sick and this is just a passing bug that passes us by. Pray for all of our friends that are battling cancer and other diseases.
January 20, 2005 Day +659 Day #357 off treatment
We went to school today. Taylor is full of the crud again, but he is okay. Logan seems to be getting it too. We came home after school and played. Taylor must think it is Christmas again after his birthday. He is loving it. We finally cleaned Taylor's room. It was so awful that he literally had to tip toe through the holes in the mess to get anywhere. Even cleaned up, it is a mess. There is no more room and stuff is just stashed here and there. Oh well, you are only young once. One day all too soon, we will be getting rid of toys and I am sure that will be sad.
Sorry to tell you, but that is all that happened today. No news is good news! Please pray that he continues to be NED . Please pray that as boring as it is, we continue "no news" updates.
January 19, 2005 Day +658 Day #356 off treatment
Happy 4th Birthday Taylor!!!
I can not believe that Taylor is 4. I know that on the awful October day that I never thought this was possible. However, my Faith is much stronger now and your fervent prayers have led us to his day. I now believe that many, many healthy birthdays are in his future. This is the first time he has ever brought cup cakes to school and he is so excited. He brought powdered doughnuts at his 1 yr. birthday, but that doesn't count. We had planned on bringing cup cakes to his old school for his second birthday, but they had closed prior to that and his counts wouldn't have allowed that anyway. Finally, at age 4 he gets to have a school party and a cool party outside of school or home. He doesn't understand, he thinks you have to have it at home. I have always done it that way, but he has never had 20 friends to invite! I know he will have a blast once he gets there.
What a day we have had! Taylor woke up in a very good mood. We went to school and he was very happy to bring in his cup cakes. I got pictures of his classmates at his mini-party. He is so ready for the big party. After school we went to The Olive Garden, we never got to go last night since the pictures took longer than planned. He called Guh on the way and I about lost it when we he told her, "I am 4 today, but I am still Taylor Watts and I still have Lo Lo". I guess he thought maybe since he was born when he was 3 he would vanish when he turned 4. No such luck! They really do get along much better now. Taylor still doesn't let him in his room, but they play well in Logan's room:) Anyway, we stopped by Guh's house for a minute and he opened one of his gifts from her. He begged for a Spiderman table and chair one day and she went back and got it. He opened it today and was happier with the box than the table and chair. He was mad that it was bigger than his folding chairs at home. He didn't get that Spider man was really geared towards older kids who are bigger. Oh well, he will love it sooner or later. All I know is that I didn't have to bring it home since he was mad at it, therefore, I didn't have to find a place to keep it.
Both Logan and Taylor fell asleep in the car and slept until Jim rang the doorbell when he got home. That was okay since we were leaving to go to the Cracker Barrel with Ca Ca's family. Taylor didn't eat too well, but he was too excited. Logan didn't eat real good either, but I am sure he ate enough at school to make up for it. We ran into a baseball friend from last year. Taylor of course acted shy, but we will talk about him for a week now that we have seen him. He is funny that way. After dinner we all came back to our house where we ate cake and opened gifts. Taylor hit the Spiderman jackpot. He got clothes, toys, tatoos, window clings, coloring books and more. He also got a Bounce House to jump in outside this summer. He keeps looking at the box and talking about it. I hope we have another warm spell come through soon, so we can get it blown up and bounce.
Logan enjoyed Bubba's cake as much as his own! We took a bath and then Logan went to bed and Taylor played with all his goods. He is currently putting window clings on the storm doors.
Thank you all who have signed in today. We hear that a lot of people had trouble logging onto the guestbook page. We don't know why it is doing that, but keep trying. Please keep praying for many more healthy birthdays and NED forever! Pray for all our friends who are fighting cancer. Pray for all the families missing a baby right now as well as those who are just starting the journey.
January 18, 2005 Day +657 Day #355 off treatment
Today we went back to school. Logan had to show everyone how he could walk. He is really trying! Taylor is coming out of his shell on Tuesday and Thursday. He barely talks on MWF when there are a lot of kids in his class. Tuesday and Thursday he is 1 of 6 kids, so I guess he is more comfortable. He just blurted out singing and he has never done that. He will do it at home. He is very vocal and silly at home, but not at school. I am glad that he is coming out, but I hope he doesn't get so comfy that he starts getting in trouble.
You will never guess where we went after school? Wal-mart, we just had not gotten our fix. No, I had to get cup cakes for Taylor to take to school tomorrow and I wanted them to be as fresh as possible. Also, we have pictures tonight for the church directory and I didn't think about what to wear until this morning. I am planning spring colors. I know it is cold, but we had 3 sets of winter/Christmas photos done and if these turn out good then I will not have to do spring ones later. Anyway, I found spring colored long sleeve shirts for all of us, but Taylor's orange sweater was entirely too short, so we had to get something new. I went ahead and got them matching shirts. I plan on Logan wearing what Taylor wore for his 2nd Easter since it has never been worn since, but Taylor may just wear this nice "springy" shirt. Don't you all love how I am thinking out loud here:)
Logan took a long nap and woke up as cranky as can be, but seems to be fine now. We are planning to go out to dinner for Taylor tonight. We are going out tomorrow with the entire family, but tonight we are making it just us.
January 17, 2005 Day +656 Day #354 off treatment
No school or work today. We slept as late as allowed and then went to the Galleria, again. Taylor rode the Merry Go Round and we just killed time, we didn't even buy anything. I know you all know our love for Wal-mart and that we seem to go everyday, but today we set a new record. We went to 4 different Wal-marts. Jim was looking for something and we went to Hoover, Pelham, Wildwood and Bessemer locations. We thought about just finding more to go to just to keep the streak going. Needless to say we still didn't find what he was looking for. After the 3rd stop Taylor said "Another Mal-mart". It was funny.
Once we finally got home the boys just played and took baths. We had a fire and we just hung out and watched the movie "Remember the Titans". Taylor was into and was playing football in the living room. He also danced around and did what they did during warm ups. It was so funny and it was made even funnier since he was in under wear and nothing else. That is his new thing, he comes in the door stripping. I am not sure why.
Please pray that Taylor is NED forever. Pray for Bailey who has had to postpone his transplant due to packed marrow and progression elsewhere. Pray for Sarah who has a "spot" on her lung. Pray it is not NB and that the word remission comes soon. Pray for Chris who is finally feeling a little better and was able to travel to Texas to look into Baylor's new study. Pray for all the others that are battling cancer.
January 16, 2005 Day +655 Day #353 off treatment
Guh left early to go to church. I thought Taylor would be mad even though we explained that she would be leaving before he woke up, but he wasn't. We cleaned and did laundry. Jim got home later in the afternoon and I climbed in the bed. It is very tiring running after two boys. I took about an hour nap and it was great. We just hung out all night and played and watched TV.
Logan is walking better every day. He is making conscience effort now to walk rather than crawl. He is still falling and only going 4 or 5 steps at a time, but he is trying. He gets too excited and tries to run and it doesn't work. I don't remember it being such work for Taylor to learn. He just did it. Anyway, he is going to be all over the place very soon. Taylor is loving it. Every time Logan goes a fairly good ways Taylor will be in awe and want us all to look. He tells us that he can walk a long ways and that he learned a long long time ago, when he was 3:)
January 15, 2005 Day +654 Day #352 off treatment
Today Taylor, Logan, Christian, Temperance and I went shopping. We started the day with baseball registration for Taylor. He has raffle tickets to sale. If you want a chance to win $500 let me know. That didn't take but a minute and we were off and running. We went to the Olive Garden for lunch. He of course ate great! I We went to the Galleria, but didn't stay too long. It was so crowded and we had 3 little boys who needed naps. We got what we needed and left. We then went to Guh's and let the boys play on the swing set and in the sand box. It was so cold that that didn't last long. We went to play inside. After a short nap for Christian and a snack for Taylor and Logan we headed to a few more places before heading home. We shipped all 3 boys off and Temp and I went to Wal-mart and dinner in peace and quiet.
Guh spent the night with us per Taylor's request. We just played and watched TV. It was a busy day, so we went to bed around 10:00. Taylor wanted to sleep in my bed so I made him put on a pull up. It has been a long time since he wore one and he didn't like it. He asked to take it off and go to his bed a few times. I think some of that was due to the fact that he wanted to play and we kept making him lay down. He soon fell asleep.
January 14, 2005 Day +653 Day #351 off treatment
Today I read back over the last few Januarys to see what we have been up to. It is very sobering to look back at 2003. In January of 2003 we were inpatient and watching Taylor bleed. He had a grand total of 6,000 plts and he couldn't stop bleeding. There were no platelets to be found for him. Finally in the middle of the night he got some. A reminder of how important it is to give blood and platelets to help others. We were also scanning and we found out that he still had some cranial involvement and other areas, but it was all improved, nothing new. We did get good news that week, his stem cells that had been collected the 2nd time around were clean. Taylor managed to make it home for his birthday, but did not get to have his party. As you recall his 2nd birthday was celebrated about 9 months later.
As for January 2004, it was smoother. We had just welcomed Logan and we had just had clean scans. We did get to plan and have a Mickey Mouse birthday party for our partially bald little boy. As you may or may not remember, he had only half a head of hair for a long time, so by January he had had it all buzzed and it was peach fuzz all over his head.
Today at school we had several parents discussing the Children's ER and how non helpful they are, blah, blah, blah. I agree that the ER is not my favorite plave to be, but what ER is? They are all slow and you never get the answer you need or want. I stood there and listened and never said a word, but now I seem to be letting it eat at me. I want them to know that Children's saved my babies life and that I have no complaints about it. They are lucky enough to never have had to experience Children's and all it has to offer. We as Alabamian's especially us local to Children's should feel very blessed to have that wonderful facility in our back yards. It is an amazing, state of the art hospital full of caring people. The caring people that healed (with God's help, of course) our baby. I wouldn't trade it for anything!! Thank you Children's hospital!
Anyway, it is Friday and I am glad. It has been a good week, but I am ready for it to be over. We took Logan for his ear check today and he is fine. He weighed 21 pounds even. I would have guessed more, but oh well. We went to Wal-mart and Logan slept the entire time in the back of the buggy. He woke up while I was in line to pay and he looked up and laughed. He has walked a good bit today. He is doing the same thing, falling when he realizes he is on his own. He also is drinking a lot now that he has mastered tipping that cup up. He had to drink some kool- aid since he drank all his juice and loved it. Of course he loved it!
Gam maw, Jim, the boys and I went to Greensboro, Al. to Buck's, a hole in the wall joint where you will get the best steaks in the world. Paw Paw was hunting and Jim stayed with him. Gam maw and I drove the kids back. We all ate good! Logan was fussy on the way home, but he soon fell asleep. Taylor got fussy as well. He was ready to get out of the car. He too soon fell asleep. However, unlike Logan, he was wide awake and ready to play when we came in the house. I finally had to yell at him at 1:00AM when he brought me about the 10th toy to fix. I don't know if he went right to bed then or just left me alone, but I didn't hear anymore from him after that point.
Please pray that we continue to have these wonderful days. Pray that Taylor is NED forever! Pray for all our friends who are fighting cancer. Pray for our troops.
January 13, 2005 Day +652 Day #350 off treatment
Today was a school day. We left school early to keep Nana's kids, but due to weather and a kid with a nasty virus we didn't go. We came on home since there was only a few minutes left in the school day. Logan napped and Taylor ate. He really did eat all day. He was eating lunch when we left school. I stopped to grab a bite for me in the car and he wanted a happy meal. He ate every bite of that then ate a pecan spin wheel and another lunchable. He better have gained weight after all that. Every time I think he has for sure gained he has lost or stayed the same. I am not a very good judge of that. We will find out on the 25th when we go in for a routine clinic visit. We should also test to see if he can get his chicken pox shot as well as get his port flushed. That is no big thing they will just draw labs from his port rather than his arm. We just do not always have to do that, it just depends on the time frame between visits. The new clinic is open and we can not wait to see it. I know it is nice. It will be strange to be in a new place after 2 years, but fun too. It was different to go to NYC once their new clinic opened, but it was so nice and new, it was great.
We are going to go to Gam maw and Paw Paw's tonight. Ca Ca has to do some computer doctoring for them and we are just tagging along. Logan is growing and changing everyday. I have a picture of Taylor at 13 months framed in the kitchen. Logan is a few days shy of 13 months and he looks nothing like Taylor. Taylor looked more like a little boy where as Logan still looks like a baby. He took a few steps on several different occasions today. He realizes that he is doing it and he will stop. We know that is the problem because he never falls rather he will stop and stand there a minute then sit down. It is like Wyle Coyote when he realizes he has fallen off the cliff and he hangs there a few seconds before falling. He has also changed in the food department. A week ago you could have given him ham or cheese and he would have turned his nose up at it. Not now, he is on his 2nd piece of cheese and he had a piece of ham for snack earlier. He helped Taylor eat a lunchable the other day. He is only on a cup now, no bottles. He hasn't had a bottle in about 3 weeks. He had no trouble transitioning other than he didn't drink a lot since he wouldn't hold his own cup. Lazy! He learned to hold it, but wouldn't tip it up and would get mad and throw it. He now will tip it up and drink. I don't know if he will at school, but he will at home. He learned that trick while sneaking a swig of Taylor's tea:)
Taylor's tube fell out of his left ear last night. That was the original tube that was put in back in November 2001. That little bugger stayed put for quit a while. It was hanging on by a thread of gunk and he kept digging at it. I thought he had pushed it back in when it was no longer visible, but we found it in his bed. YUCK! The right ear has its second tube that was placed in March 2003 right before his transplant. It too is about to fall out, but it can't come out because of all the gunk on it. I guess it will eventually fall out too. He has the nastiest ears. I am not sure if it was because the tubes were out of place and the ear couldn't drain or what, but he is funky:) I asked him if he can hear any better, but I don't think he understood the question. We go back to the audiologist in April and I am interested to see if he has any improvement now that that blockage is gone.
Well that is about it for today. Not much going on here in the house of Watts. That is a good thing. I did hear today that angel Trey's mom is in the works to get Neuroblastoma car magnets made and sold to raise awareness. I have emailed her that I want LOTS, so you all email me if you would like a magnet to go on your car. It will help raise awareness of our specific type of cancer.
January 12, 2005 Day +651 Day #349 off treatment
Taylor was glad to be back at school. He couldn't have looked more country. He had on a John Deer shirt, jeans, hunting boots and a belt with his name burned into it. Oh, and a Incredibles mask. How funny is that!
I told him I had a surprise for him. We had to go the bank, so took them to the park. We didn't stay long since it was rather windy and I am not convinced that Logan's ear is better. They both had fun. Logan swung for a long time. Taylor loved it all and ran from thing to thing. We will have to go back when it is warmer and hopefully by then Logan will be able to walk. He wanted to play so bad, but I didn't want to put him on the cold ground. He also wanted on the merry go round thing, but I was afraid he would try to crawl away while it was going. We will just have to have daddy next time we go.
We are back home now and we are just hanging out. We have no plans tonight. We are going to grill before it gets cold again, so Taylor can play outside a little bit more. Logan screamed bloody murder until he fell asleep and now that he is awake he is a whiny thing. I am about to put him back to bed. I don't know what is deal is today. Taylor is playing none other than hunting club while watching cartoons. He is also playing garbage man. What is the fascination with that? I had a little girl ell me toady that she was going to be the garbage man when she got big. Maybe it is the riding on the back of the truck that strikes them. Taylor swaps from garbage man to Don Don worker for his career choice. I know when I was little I was going to work at Chuck E Cheese or be a nurse. Well, I teach which is still with kids and I may not be a certified nurse, but I was a nurse to Taylor, so who knows maybe kids do know what they want to be this early.
Please pray for Taylor's continued success against the beast that once was inside him. Pray for all our friends battling cancer.
January 11, 2005 Day +650 Day #348 off treatment
Another school day for Logan and I. Jim and Taylor got home about 10 minutes after we did. Taylor was as good as gold all weekend, but now that is over. He is so tired that he can't stand it and it making him so mean. He played outside for a little bit before going to Wal-mart and to eat with Gam maw and Paw Paw. He wore the same clothes all weekend. He refused to change. Oh well, you have to choose your battles!
Guh came over to see him for a little while. It is funny because now Logan wants to be held all the time and so does Taylor. When anyone leaves our house they have to scratch their tires or Taylor gets mad. I know our neighbors love it. Anyway, Guh always tries but nothing happens. Well tonight she did it and it was loud. I laughed so hard I cried. It was so funny to me to hear my mom leave and catch a wheel. I'm going to change her name to Hot Rod Granny.
After Guh left we got ready for bed and Logan went first. He went with no wining. He saved all that for 3:00AM. That is his knew thing. He gets up for about an hour around 3 and screams. He will then sleep for about another hour and start all over. He will not rock or drink or anything, so we just let him scream. Therefore we are not getting good sleep ourselves. Taylor was such a good sleeper, but not Logan. He has about ruled out naps and I can't have that not at 1 year old. UURGH!
Taylor didn't want to go, but he was asleep in 5 minutes. He was so sweet. He gave me a big hug and told me he missed me. He is such a sweet guy. They always told me boys love their mommies and that is one thing they have in common. I can't get a moments peace, but I know I am loved.
January 10, 2005 Day +649 Day #347 off treatment
I had a sad moment today. Taylor loves to read signs on the road or find letters he knows. He loves Wal-mart trucks! Logan and I were on the road today and a Wal-mart truck went by and I started to say "look, there is a Wal-mart truck". I stopped when I realized that Taylor wasn't in the car. It his me like a ton of bricks how much I missed him. I was a little sad then, but I knew he would be home tomorrow. What really hurt was that it could be an all too real event if his cancer were to come back or had it not responded as well as it did. Now, I am not getting all down or losing Faith that he is healed. It just hurt to think that that is the constant pain that Janie, Austin, Trey, Sophia and Jake's parents and many others that I don't even know, feel every day. I can not imagine that. It must be so hard to go on. I wish I could take all that pain away. It may be selfish to say, but oh how I pray that I am never in that position. Please pray that they are all okay and they can get through every day.
Logan and I went to school today. I was so early. I had to get up early so that I could get a shower before Logan woke up plus I only had one kid to dress. I felt like I was forgetting something leaving home with only Logan. We went to Nana's after school and watched her kids. Logan had a great time in the playpen with another 1 year old little boy. We went to dinner with Gam maw this evening. He seems to feel better than he did yesterday, but he still didn't eat a lot.
Once we got home we played. Logan stayed up a lot longer tonight than last night. He was playing so sweet and being so silly I didn't want to put him to bed. He finally went to bed around 8:30. I snuggled up to watch a Lifetime movie. What more could a woman ask for? A quiet house, no men around to disturb you while you lay around and watch Lifetime.
I talked to Taylor again. He is still having a ball. He is filthy from mud riding. He finally got those boots dirty and he is okay with it. He climbed up the ladder to the shooting house all by himself and stayed 2 hours. He was a little restless and I am sure to noisy, but he liked it. So, it is official, he has hunted. He said he saw a reindeer:)
January 9, 2005 Day +648 Day #346 off treatment
Today Jim and Taylor went with Paw Paw to the hunting club. They will be back Tuesday. He didn't want to take his boots because he didn't want to get them dirty. He is so goofy! Logan gave us a good mess today. He found the dough nut that Taylor left on the fire place last night and he ate it. He left a trail of sugar all over the room. Logan and I went shopping with Guh and out to eat for lunch and dinner. He was a very good boy. He just loved all over Guh. When he woke up from his nap he didn't act like he felt real good. He ended up throwing up and going to bed early. I guess he had that little tummy bug that is going around.
He went to bed early and I cleaned and did some laundry. I then piled up in my bed and watched TV. I miss the guys, but it has been nice too. I did talk to Taylor on the phone. He is having a blast. He is riding his gator and Paw Paw's 4 wheeler. He has eaten enough pecan spins to turn into one. He helped start a fire and sat in the shooting house. He was on the phone telling me about it, so I am sure that they didn't see much, but it was okay since he was having so much fun.
Please pray that he is NED forever and that he continues to have these wonderful weekends full of fun. Please remember all our friends that are battling this and other diseases. Stop by and leave some encouraging words to Chris. He is in NYC still. He is inpatient again and has pneumonia and liver issues. www.caringbridge.org/fl/chrisbecker
January 8, 2005 Day +647 Day #345 off treatment
Today we went to Will's birthday party. Taylor had so much fun. There was a moon walk and an art activity, all the things he loves. He was really excited to see a real fire truck. He got to climb all over it and check it out. He got a certificate of completion and he is now a Jr. fire fighter. It was a cute party and I had to drag him out. We had to go back in and eat more ice cream because it was different than the ice cream at our house. He also found a new food combo. I gave him some ketchup for his hot dog, but he used it to dip his cheese puffs. Gross!!!
After the party we came home and cleaned out the garage. Taylor rode all his riding toys and Logan played in the exersaucer in the garage. We got cleaned up after that and went out to dinner. Taylor and Logan both ate like pigs. We stopped by Krispie Kreme on the way home. We had to get home so that Jim and Taylor could pack, they are going to the hunting club in the morning. He is so excited!
January 7, 2005 Day +646 Day #344 off treatment
TGIF! Today was a long day. We had a good day at school until Taylor had a little upset. He went to the potty and while he was in there taking his sweet time, his class went to their room and my class went to the gym. We were at lunch when he went in the bathroom. His teacher told him they were leaving and offered to wait, but he told her no. It scared him when he came out and he couldn't find anyone and he went back to the bathroom and cried until he finally came into the gym and found me. His teacher was crying as hard as he was, but it was okay. He was fine when I went to pick him up, in fact, he didn't want to leave.
We came home and let Logan nap and then we went to Wal-mart and the bank. Logan was very fussy. so we were not out long. We came home just before the rain and we stayed put. Taylor found Toy Story on TV and was content. He hasn't watched it in ages and it used to be all he watched. He is hooked again it looks like. As soon as it was over we had to go get the video out. He is playing and having a good time. Logan is sound asleep. He plays so hard and fights sleep so bad at school that he was pooped.
Tomorrow we have a fire fighter birthday party for his friend Will. Taylor is so excited to go. He is really getting into all this party stuff. Speaking of birthdays, I have been dreading his since I know he thinks he gets to move up to my room as soon as he is 4. He doesn't realize that he has to wait until the new school year. Well, as I was gearing up for the fight, he surprised me. He told us the other day "I think me will stay downstairs cause I will miss, miss, miss CJ if I go upstairs". Thank goodness I wont have to fight that and they will both move up together in the fall.
Please keep my dear friend and a Taylor's teacher before he was sick, Sarah, and her husband and family in your prayers. She had her baby boy this past weekend. He was born with no kidneys and lived about an hour. Our deepest sympathies go out to the family. We know the power or prayer and God's strength. Please pray that they have the courage and strength to get through this time. We love you guys!
Pray that Taylor is NED forever. Pray that all our cancer friends can find cures this year! Pray for those families that are missing their babies tonight. Pray for those fighting this battle.
January 6, 2005 Day +645 Day #343 off treatment
Happy Thursday to you all. We went to school today. It was a little odd to go on Thursday. Logan did great with his new teacher. Taylor was a little confused why all his friends were not there, but he did have Ethan who will be coming 5 days a week also. They got in trouble for fighting! It isn't funny, but it is. It is funny that 2 years ago he had a broviac line and we had to be so careful not to pull it out and now he is getting in trouble at school for wrestling. You gotta love it!
I only had 3 kids in my class, so it was a laid back day. I was able to clean up the room while they played centers. It was a long day since it was so laid back. We had fun though. I was doing Taylor's invitations and I was trying to be sure I had one for everyone and I asked who was in his class and he said, "which class"?
We came home and didn't go anywhere today. Taylor was mad that it was rainy and muddy and he couldn't go outside. We just played inside until dinner time. That was fun and messy. Logan fed himself ravioli. We had a bath tub full of noodles once we bathed him. It was funny. He wasn't near as messy as Taylor was after he would feed himself at that age. We tried to get a picture, but he kept hiding his head. I need to get Jim to post some pictures of Taylor at Logan's age. I don't think they look a like, but some do.
Please continue to pray for our friends that are dealing with cancer or the loss of their babies. Pray that Taylor is NED forever.
January 5, 2005 Day +644 Day #342 off treatment
Today we went back to school. Taylor had a good day although he was mad because I put the wrong spider man shoes on him. He was ready to play with all his friends. Logan had a bit of a time since I took him off the bottle, but he did okay. He came home and took a 2 hour nap, maybe we can make that habit. Taylor played outside. He made a huge dirt pile. We went to Pop's to return his van. We had to go to the grocery store too. We had no lunch food for the school. We will start going 5 days a week this week, so we had to have extra food.
Logan fell asleep in the middle of the living room floor. I moved him to his bed and never put pj's on him since I thought he would wake up, but he didn't. He slept all night, in his overalls. Oh well! Taylor had a bath alone, the first time in a while. He had fun splashing and getting a little to rowdy. He likes to bathe with Logan, but he also likes to splash and be silly.
Another day of normal for us. Praise be to God. A friend pointed out today how awesome it was for us to have been through so much and to now be planning Taylor a cool party. We are having his 4th birthday at Pump it Up. He is so ready! Can you believe he is about to be 4. He was not even 2 yet when he was DX. WOW!!!
Please remember all those who are still battling this disease and others. Pray for those who are missing their babies or have just been diagnosed. Pray that Taylor is NED forever and that cancer never again invades his body.
January 4, 2005 Day +643 Day #341 off treatment
We had some breakfast at the hotel. Logan had breakfast twice:) The child has done nothing but eat. He even took about 10 steps for a cookie! We were on the rode by 9:00. Logan went to sleep pretty quick this time and Taylor watched movies. We stopped for lunch and a little stretch and we were off again. We were home by about 3:15. We just unpacked and did laundry and got ready for work and school. Tomorrow morning will be a hard one for the boys and I since we have been off for 2 weeks.
Not too much to report here other than we made it home safely. Please stop by Janie's page as today is the 2 year anniversary of her earning her angel wings. www.caringbridge.org/al/janiesims
January 3, 2005 Day +642 Day #340 off treatment
Today we rode the street car all the way in both directions just to see a few sights. Logan loved it. He would talk to the passing cars (the trolley runs down the middle of the street) Taylor was cleaning the trolley. He used about 5 wet wipes on that window and seat. We know that at least one of those trollies is a little cleaner now. I think having to be so clean and neat for so long got to him.
We went to Landry's to eat and then walked to the hotel. Logan fell asleep on the way back and was ready to play when we got back. We all were able to sneak in a little nap. Jim and I walked to Walgreen's and got some snacks and dinner. Everyone headed to the game, but Logan and I stayed put. I gave my ticket to Taylor. Now don't all of you football loves jump me on this one, but I just don't really cafe for football, so I didn't see the need in paying for a ticket for Taylor when I didn't care if I went or not. By 6:30 Logan was sound asleep. I ate my dinner in peace and watched TV. I was ready to cuddle up with a book around 9:30 when the fire alarms went off. Logan jumped up and was crying. I got my shoes on and was ready to go outside when I learned that it was just a smoker on the elevator and it was not a fire. UURGH!! I was now stuck with a kid that had had a 3 hour nap way to late at night. He looked out the window and pointed to people walking by. He pays attention and learns more than we think. Jim and Taylor had on jerseys and a guy walked by in one and he went bonkers yelling "Da Da". He finally went back to sleep around midnight.
The rest of the gang got back around 11:00 or so. Taylor was sound asleep. We watched a little TV and packed up before going to bed.
January 2, 2005 Day +641 Day #339 off treatment
We left home at 4:00AM! We left early in hopes of the kids sleeping thru most of the 5 hour drive. Taylor went right back to sleep, but Logan didn't The one we wanted to sleep wouldn't. I fed him his breakfast and he finally went to sleep. Taylor slept for several hours before waking up and watching movies. He was happy as a pig in sunshine doing that. We got to New Orleans at about 10:00. It was too early to check in, so we went to Bourbon street and looked around and ate some lunch. At 12:00 we started back down Canal street to the hotel. We checked in and the boys played for a while. Taylor liked hiding in the walk in shower. Logan liked leaning over the air conditioner. He had ice cold hands for 2 days! Logan was so tired that he laid in his bed and Jim patted his back about 2 times and he was gone. I made Taylor lay down against his will and he was gone in about 5 minutes. We all laid down and slept 2 hours! Wow, was that great. We all laughed that we were in New Orleans, 5 hours form home and all we were doing was sleeping. I think we were all fine with that, I know I was.
At 4:45 when we all got up we got dressed and headed for dinner. However, dinner didn't come easy. We rode the street car to River Walk and looked around. Taylor loved the life sized Spider Man that was on sale for $1000. We left there and headed to find some dinner. It was either an hour wait or not suited for children. We ended up in McDonald's. Taylor ate good, but Logan ate great. He had 2 chicken nuggets and some hamburger. We walked back to the hotel and just hung out. Logan went right to sleep with no problem. Taylor colored quietly for a while then climbed in bed.
We had a fun day and can't wait to see what else we can see tomorrow. On our ride down we passed the Tulane Children's Hospital. That is where one of our NB friends, Madison, is treated. Please stop by and say hello to her. www.caringbridge.org/la/madison
January 1, 2005 Day +640 Day #338 off treatment
Happy New Year!
We started it with a bang or fever how ever you want to look at it. I gave him Tylenol and he was fine, but still worrisome. We went to buy a new dryer today. That was fine until trouble hit. The new one has a door that opens downward rather than out like the old one. It wouldn't open as it was hitting the laundry room door. WE couldn't move it or is hit the electrical outlet and messed up the venting. Jim had to move the electrical box over and by then the stores were closed so we couldn't get vent. I had to hang up all the wet clothes all over the house. We are leaving tomorrow, so I will not get to dry them. Packing was great fun. Logan wouldn't let me get 2 feet away and was so very whiney. I finally had to just put him in his bed and let him scream. I finally got packed and in bed by midnight.
Guh came over to play today. We started cleaning up, but we were making a bigger mess than anything. Not much going on here today. Just cleaning up and packing up for a fun filled weekend in the Big Easy!. War Eagle!!
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