Quick Jump: 4th Quarter 2004: October November December
December 31, 2004 Day +639 Day #337 off treatment
Can you believe that this is the last day of 2004. I can't. This year flew by. I don't want to wish the years away, but I kind of like them going fast, it makes us that much closer to another year out from cancer. Anyway, we had a good day on this last day of the year. We started it with a trip to....Wal-mart. This time we were there to get my tire fixed, it had a screw in it. It was going to take 2 hours and I love Wal-mart, but not that much. We had Guh come get us and we went to IHOP for lunch. We then went back to Wal-mart and looked around for a few minutes and the car was ready.
Taylor went to Guh's house to play. He had so much fun. He was riding his 4-wheeler thru the swings like it was a car wash. He is so silly! I wasn't there long before Logan and I left to meet Jim at Angel Hair for his first hair cut. I was worried he wouldn't sit still, but he shocked us. We sat him in the little boat and she put the cape on him. He immediately started ripping it off. She gave him a sucker to suck on. I thought yeah right, like that is going to help, but it did. He sucked on it and looked at himself in the mirror. He never cried, he only looked around so she had to chase him a bit. It was all over in 5 minutes. He looks like a big boy now. He is a cutie! He got MAD at me when we got back in the car. I took the sucker away and he flipped out.
We went back to Guh's to get Taylor. He was hiding from us in a big pile of leaves. He had on camo so he thought that was real funny. Logan was itching to get down so we put him in the leaves and he loved it. He was shaking the leaves and throwing them. He was soon crawling all over the yard. Yes, crawling, he has no desire to walk. Taylor walked at 10 months, but never crawled good, so I guess he had to walk to get places faster where as Logan is quicker crawling. He will do it when he is ready.
After the leaf playing we headed home. We shot some fireworks that Logan hated. Taylor liked watching, but didn't like the noise so he wore head phones. We had some confetti poppers that Taylor liked too. We took down all the Christmas stuff. I am so glad that is done. Taylor was up until about 10:45. I started to get him up to see Times Square and Toys R Us, but I didn't.
Another day in the books. Please be safe tonight as you usher in the new year. Happy 2005 to you all!
December 30, 2004 Day +638 Day #336 off treatment
We had a low key day. Daddy wasn't feeling well today, so he was with us. He got to witness just how fast a mess can be made by a certain 2 little boys. We have got all the toys put away and the upstairs it looking okay with exception to the Christmas stuff that we need to put up and the yard sale goods that need to be moved down stairs. Down stairs, that is another issue. Jim got a desk for Christmas and it will help with the organization a lot once it is all together, but right now it is awful. We have to get all that cleaned up in order to get the play area cleaned up. Then I will have room to put my bags and bags of yard sale stuff. It is all coming, maybe by next Christmas I will be cleaned up from this one.
The boys have been good. They have played very well the last few days. They are loud and wild, but not fighting. It is funny to watch them. Taylor seems to be less "rattly" in the chest area, but still snotty. We will keep the meds going and the vaporizer and air purifier going and see if that clears him up any.
Logan is asleep on his new cushie pillow. He loves his as much as Taylor does. They are so funny with the pillows. Logan doesn't take a passy or carry anything and I hope that that big pillow is not what he chooses since we already carry so much for Taylor. I threw all the many pacifiers that we had in the garbage today, so tomorrow will be the day that Logan wants one. He never did like it much, but after about 7 months old, he wouldn't have it at all. That is fine by me! Taylor will be 4 in 20 days and he will also celebrate the one year anniversary of giving up "mine" aka the passy.
Well, that is it for now. I know that last few days have been boring, but that is the way we like it. We will probably not update for a while since we are gearing up for a busy weekend. Tomorrow is Logan's first haircut! We will also be taking down all the Christmas stuff. Saturday we are picking up the new dryer, packing and picking up Pop's van. Sunday morning we are leaving for New Orleans for the Sugar Bowl and we are staying until Tuesday. Don't look for an update until at least Tuesday night.
We wish you all a Happy New Year. I can not believe that it is going to be 2005! Thank you to all of you who have followed us since 2002. We hope that 2005 is the best year for all of you. It is also a good year to find a cure for NB!!
Pick up the Jan. 2005 issue of Good Housekeeping magazine. There is a story on one of our internet friends, Brandon, and his miracle. www.caringbridge.org/ga/brandonconnor It was a great article about an amazing little boy and his family. Check it out!
December 29, 2004 Day +637 Day #335 off treatment
We went to return a few items today. Taylor swapped in a duplicate toy on a tiny version of the same RC car he got from Pippy. It is so cute and he loves playing with them both. He has found that the remote for the big one will work both cars. He thinks that is funny.
We talked to Dr. Petelos about seeing an allergist today. He recommended we try his Singulair plus Claritin for a while before going to an allergist. He gave me the numbers for a few if I choose to call. We are going to hold off as it is a yucky process. He will be tested (blood test) then if he is in need of shots it is one every 2 weeks for a year then monthly. Not a good thing in his book, he would rather be snotty.
We went by Guh's house since it was pretty. He played on the swing set. Logan loved it too, but he was mad that he couldn't get down and crawl all over the place. We took him back in and let him crawl around. We were ready to leave when the ice cream man came by. We had to wait for him to eat his ice cream sandwich before leaving.
No news to share today. Just a normal day, yahoo! Please pray for all our friends out there battling cancer or other diseases. Pray that Taylor is NED forever.
December 28, 2004 Day +636 Day #334 off treatment
We went to Nana's today for a while. Logan had a good time playing with new toys, we don't have any new toys at our house:) After we left there we went to Goody's and killed time before meeting Jim for lunch. That was the worse trip to Goody's I have ever had. Taylor had big time runs for some reason and I had already had to put him in a pull up at Nana's since I had no more under wear for him. He didn't have any more issues after the first time, so I thought it was a fluke. Well, we are on the opposite side of Goody's from the bathroom when he starts telling me he has to go. I take off like it is the Indy 500 towards the bathroom. I had to leave the buggy and carry Logan and try to hold him and keep Taylor from touching everything. He barely tinkles and says he is done. I was so ill! So, off we go back to the buggy and back to the opposite side of the store. Not 2 minutes later he starts grabbing his rear and yelling that he has to go. Off we go!! This time he really went, but he took his sweet time, talking 90 to nothing. He is finally done and the fun starts. I had to balance in the teeniest stall ever with Logan on one hip with his hands tucked in my coat to keep him from touching. All the while trying to wipe Taylor while keeping him from touching. The lady in the next stall just laughed and said "sounds like you have your hands full". It is rather funny now, but at the time I was so frustrated.
Anyway, we left Goody's, but not without a "reindeer" shirt better known as a John Deer shirt. He loves that since he has a power wheels gator with the John Deer symbol on it. He thinks it is his "horse" like on daddy's car. Jim has a mustang with a horse on front. He doesn't miss a thing.
Logan has been drinking from a cup all day! Yahoo! He can't figure out how to tip up and drink, so we have to help him, but he will get that soon enough. I am just glad that he finally figured out how to drink from a cup. He is turning down milk, so we may have an issue on our hands. We are working on it though.
Please pray that Taylor is NED forever. Pray for our friends that are still battling their disease. Pray for those who are missing their babies. Pray for those that are newly diagnosed. Please stop by our friend Chris' website. Chris is battling relapsed NB and is having a hard time right now. He could really use our prayers and encouragement right now. www.caringbridge.org/fl/chrisbecker
December 27, 2004 Day +635 Day #333 off treatment
We went to Wal-mart, you know we just can't get enough of that place. We got medicine for Taylor who is still feeling yucky. We also got him a vaporizer to go in his room and hopefully help him feel a little better. We shall see if it helps. I rubbed him down with Vicks vapor rub and boy did he stink. He climbed into our bed for a while and he about ran us out.
Logan got into trouble. I guess having presents under the tree was good for him. He has messed around under the tree since we opened all the gifts. He stood up for almost a full minute. He was wobbly, but laughing the whole time. The scary part was that he was between the tree and the window, so if he fell it was either into the tree or out the window. He eventually just sat down and never fell into anything.
Both boys were pretty good today and tonight. After Logan went to bed the rest of us hit the play room for clean up and put up. We took a ton of stuff out and put it in the ever growing yard sale pile, but it doesn't look like we took a thing out. I am going to have to have to have a winter yard sale. We have so much stuff piled up it is getting crazy.
Not much to tell you about today. Please pray that Taylor is NED forever. Pray that Logan never endures anything like Taylor has. Pray for all the families that are dealing with a loss right now or the anniversary of a loss. Pray for our troops.
December 26, 2004 Day +634 Day #332 off treatment
We attempted so sleep late, but Logan screamed until we couldn't ignore him anymore. We got up and went to breakfast then came home and played with all the new toys. Guh came over to play too. She had a new toy that she needed help with. Jim showed her how to work her new camera and printer. She kept the boys for a while, so that Jim and I could go price dryers. Ours has a missing knob and we are using pliers to turn it on and off and it takes hours to dry a load. Anyway, we did a little price shopping and got a little "no kids or toys" time.
We came home to a mopey Taylor. He is just not feeling up to par. He has no fever, but is so full of snot and he keeps telling us that his "this" hurts. This would be the area under his eyes around his knows. That just screams sinus infection to me. I gave him some meds and he went to bed. He is so grumpy and moody. I know he feels bad. I am going to speak to Dr. Berkow about seeing an allergist and maybe getting allergy shots. I talked to Peggy all about that this weekend and it has really helped her a lot. I feel bad that he is constantly miserable due to a runny nose and cough. We are also going to put a humidifier in his room to see if that will help him any.
It has been a fast day, but a good one. We kept saying what we were going to do as far as where to put all these toys, but it never got done. Maybe tomorrow.
Please pray that Taylor is NED forever. Pray that he gets over this cold soon and we are able to find the answer to his sinus issues soon. Pray for Trey and Sophia's families as they deal with this loss. Pray for Gracie's family, tomorrow is the one year anniversary of her passing. Pray for the Sims' as they near the 2 year anniversary of Janie's passing. Pray for the troops and all the people fighting illness and disease.
December 25, 2004 Day +633 Day #331 off treatment
What a long day. That happens you finally go to bed at 1:00 and get up at 5:45. Taylor was moved back to his bed during the night and woke up to potty at 5:45. We figured we might as well go ahead and get up since Logan was awake too. Taylor was very happy when he got to the living room. I am not sure he knew what to do. He stood pointing and saying "hey, I asked for that". It was like he knew he asked for it, but was unsure if it was his. He soon was into it all. He didn't have a need to open anything else as he had enough to do, so we had to open most of the wrapped stuff for him. Logan was a little over whelmed I think, he just sat back and watched. If you watch the video you see Taylor playing and Logan in the background getting into stuff that isn't his while Taylor isn't looking:) Gam maw and Paw Paw came over to see the goodies. Taylor greeted them dressed in his full Spiderman suite, complete with muscles! They were able to see him play his v-tech video games, his blocks, read books, and more. Logan was able to show his pop-onz table and cars. He was most impressed with the marshmallows in his stocking.
We went to Pop's house for lunch. Taylor was totally impressed with the RC car that Pippy gave him, the spider man ball was a hit too. He did a great job playing with his slot car track too until Logan sat on it. Logan ate great, a lot better that Taylor. Logan was very good though. He was not pulling out things he didn't need. He didn't pitch fits. His only thing today was wanting Taylor's cup and not his even though they were identical other than color. We left there and we all headed to our house so that they could all see the stuff Santa left. However, Jim and I had to do the showing since both boys were fast asleep.
They slept until 4:45 when we woke them up to head to Gam maw's for a party with them. We ate first. Both kids did fair in the eating area. They were ready to get to the presents. They had a blast. We were in a sea of wrapping paper. They got trains, cars, musical instruments, movies, fireworks for next week and so much more. We couldn't see out of the back window of the car it was so full. We had to leave a little earlier than planed due to Logan's sleepiness. However, before he got mad he had a very good time with Roo, Uncle Dugan's very tiny puppy. It is literally the size of a mouse and it had a good time chewing on Logan's sock while it was in his foot. We thought it would scare him but he laughed and laughed. The dog was shaking and tugging that sock with all his mite, but Logan was barely moving. It was so funny. They got to chasing each other in circles, we were afraid that Logan was going to fall on Roo and hurt him rather than Roo hurt Logan. Of course the car was already packed up and we didn't have the video camera, so hopefully next time we are all together they will play like that again.
We came home and a few people came with us to play my game of DVD trivial pursuit. It is all about pop culture, movies, TV etc. and I still can't answer any of the questions. Oh well! We had fun trying.
By about 10:30 we were all about to drop, so we called it quits and hit the sack. We hope you all had a wonderful Christmas!!
December 24, 2004 Day +632 Day #330 off treatment
It is with great sadness that I must come to you in this Christmas eve to tell you that we have lost yet another dear NB friend. Our dear friend Sophia went home to Jesus around 5:30 last night. She had just had a second transplant and the cancer had metastasized in her liver. Please be with her family, Diane, Ben, and Olivia, as they start this journey without her. They were one of the first internet friends that we met in NYC. They are wonderful people. Taylor and Sophia used to eat breakfast every morning at MSKCC. We will truly miss Dear Sophia. We love you all Donnarumma family!!! Stop by and visit her site. www.caringbridge.org/ma/sophiamarie
It was a great day for us. Jim had to work, so we spent the morning getting ready and packing up all we needed to bring to Guh's. We went to Guh's around lunch time in order to swap gifts just between us. Taylor and Logan got huge been bags and luggage with their names on them. Taylor got some cool puzzles and Spiderman stuff. Logan got some blocks and books.
I talked to Meredith Thursday to let her know that Taylor had finished all his shots and update her on that. She told me that she was on call this weekend, but she didn't want us to need her. Well, I think she jinxed us (kidding Meredith). Taylor was full of green snot and was rather mopey. In fact I had to wake him up at 10:00. He begged to lay down at Guh's and soon he was running a 100.8 fever. Never hit the magic number not that I would have gone to the ER anyway. I gave him some Tylenol and he rested until Drew and Blake got there. He was up and running then. He didn't eat a lot, but he did play and rough house with the guys. They got race cars, puzzles, blocks and bunches of other stuff. Logan was winding down very quickly, so we all packed up and headed home around 8:30. Taylor was asleep in no time and Logan screamed all the way home. He was fast asleep after a little milk though. However, Taylor woke up when Jim put him in bed. We thought nothing of it and let him get up. He left a message for Santa on the video camera, left a note and milk and cookies and we sprinkled reindeer food on the lawn. I tucked him back in and refused the usual "leave the light on 5 minutes" request and we talked up how he needed to go to bed so that Santa could come. He would get in bed then he would call me. He needed a drink, or a this or that. My favorite was asking to brush his teeth. I told him he could slide this one time since Santa needed to come on so he could go to bed, but he insisted it be done. Yes, he normally hates that procedure, so I knew then that something was up. I assumed he was just to eager to sleep. Soon he called me in to change the movie and to ask yet again to keep the light on. I told him no and he said he was not "hap hap" with me (happy). I told him he would really be happy if Santa didn't come and leave toys just because he was awake. He told me that he had enough toys. I finally got him back in bed and I left the room. Jim and I decided to go ahead and get in bed and hope that he wouldn't think he was missing something because we were up. I told Jim I thought he was afraid. Not long after we turned all the lights off we heard him crying. He was absolutely scared to death that Santa would come in his room. We tried to tell him that he wouldn't, but he wasn't having it. We finally just put him in our bed. He was still scared, he asked about every pop and creek that the house made. Finally at a little after 11:00 he was asleep.
I was so sad that he was afraid. He was not afraid to sit in his lap and has made no mention of being afraid before tonight. We wish you all a wonderful day tomorrow. We wish Jesus a Happy Birthday! We thank him for the miracles that he has performed in Taylor's body. We ask that he is NED forever. Please remember those families that are missing a loved one this Christmas in your prayers.
December 23, 2004 Day +631 Day #329 off treatment
I hate to start an update with bad news, but today I have to. I must tell you that our dear little friend, Trey, went to be with Jesus last night. Another family loses their precious baby right at Christmas time. Trey was a fighter and fought hard for 2 years. He has an amazing family who will miss him dearly. Please pray for them as they start this new journey. Please stop by and leave them some encouraging words. www.caringbridge.org/va/trey Also stop by Gracie's page and leave some kind words for her family. She went to be with Jesus a year ago on Dec. 27th. www.caringbridge.org/al/gracie
We are all warm and snuggly in the house on this freezing day. I saw some snow flurries when I went to the store this morning. We have no plans, but to stay in and be warm and play. I know I said this before, but I am fairly sure this is the last update until after Christmas, so Merry Christmas!!!
December 22, 2004 Day +630 Day #328 off treatment
Wednesday already. Why don't work weeks go this fast? Why do non-holiday weeks not go this fast? I am ready for Christmas, but at the same time not. We work so hard then poof it is over. Anyway, we had a good day. We got up and went to Nana's and helped her with her kids. We thought she was going to have to leave for a while, but she didn't. Logan made sure that no one slept. He finally slept for about 30 minutes after about 2 hours of screaming. We left soon after he woke up since all the kids were still asleep and we didn't want to wake them up.
I had several things that I needed to return, but it was raining and both boys conked out on the way home, so I didn't do it. We will try again tomorrow or after Christmas. It is just some candles and jeans that are way to big for Taylor. No big deal.
Both boys are spending the night with Gam maw tonight and Jim and I are going to the movies. We will then check for needed batteries for Santa and hopefully get the house cleaned for Santa.
I had to sneak back and see what we were doing on previous Dec. 22nds. In 2002 we were preparing to harvest stem cells for the 2nd time since his first batch had cancer cells present. Last year we were home with a new baby and it was just plum crazy. I am so thankful that this year I am able to write about a normal day spent with my 2 healthy boys. Praise be to God!
I am not sure how much time we will have the rest of the week, so here are a few Christmas wishes to you all.
To all the faithful Taylor supporters, we love you all so much. We could never have made it threw this with out the prayers, gifts, and encouragement of all of you. Thank you!
To 4-tower, thank you for being so great! You all became our family, our home. We can not thank you enough for the love you showed to us all and the wonderful way you dealt with Taylor. He loved you all, still does, he just doesn't remember. We miss you all!
To clinic 5, you were and still are so very wonderful. We knew we could come to you anytime and get the answers we needed. It is so nice to go in to a place where you are known and loved. Taylor has never been afraid to go in and half the time doesn't want to leave. Thank you for always taking care of us. Thank you for loving us. We love you all!
Stem cell unit, we are so thankful for all the life saving "misery" you put us all through:) That was a very hard month, but you all made it bearable. You helped us, explained things to us and loved us. We miss you!
PDH at MSKCC, we are so thankful for you all allowing us to come to your clinic and get the life saving 3F8 treatments. You welcomed a silly bunch of southerners into your world and helped make us feel at home. We love you all and miss you!
We wish you all a very Merry Christmas and a Happy New Year!
December 21, 2004 Day +629 Day #327 off treatment
We have had a nice stay at home day. Logan didn't sleep real good last night and was up early. He was in a very crabby mood. He has eczema acting up real bad on his face and it is dry and chapped. He still has an ear infection and has fever from his shots. He is not feeling very good today. He took a fairly long nap this morning and seemed to be much better after lunch. I call it lunch, but he didn't get any. He took one bite, but spit it out after chewing it. Taylor on the other hand has been stuffing his face non stop all day long. We were going to go get Logan's hair cut today (sorry Cathy!), but since he was not feeling up to par we didn't. I don't think it is going to be an easy experience like it was with Taylor. I want him to be at his best when he goes.
They have played very well together today. They played with Logan's car, Taylor will push him on his 4-wheeler. They played chase around the dining room table and peek a boo. They are so funny and cute when they want to be.
While Logan was napping, I did shrinkie dinks with Taylor. I thought he would love it. He is into magic, so I just knew he would love to watch it shrink. Nope, he got mad because he wanted to watch TV while it cooked. I made him watch then he got mad that it was little and not big. He liked them once they came out, but I was disappointed that he didn't like it any more than he did. I need a girl who will love all the stuff that I did as a kid. He likes some stuff that I did, but he doesn't play like I want to:)
I tried to take a picture of them by the tree in their matching camo clothes, but Logan wasn't going to have it. He is very sleepy and he is in his room screaming. He wont take his milk and he wants to get up. However, if he is going to scream no matter what I do for him, he can do it in his room.
Taylor has been a very good boy today. He only changed clothes once. That is a big dip from his usual 6 or more. I am about ready to put locks on the drawers. Speaking of locks on the drawers, Jim put one on the drawer that Logan loves to pull stuff out of. He now stands at it and yells, so does Taylor!
December 20, 2004 Day +628 Day #326 off treatment
We did nothing until 12:30 when we left home to go to the Dr. Logan had his 1 year check up today. He is 20.9 pounds only 1 ounce more than a month ago. He hasn't been eating well, but slept fine, but he still has an ear infection, so I guess that explains that. He was 29 1/4 inches long. I haven't looked to see who was longer, but I know Taylor was heavier than that at a year. He is on Zithromax for his ear. He got 3 shots, a Chicken pox vaccine, a booster prevnar and a second dose of flu since they had plenty left. Meredith just happened to call while we were still there and said that Taylor's titers are all normal. That means that he is responding to the vaccines and they are in his system. He is now able to get his MMR shot. Dr. P went ahead and did it since we were there. That was fine by me since I didn't want to make another trip, but I had promised Taylor no shots. Oops! He was mad, real mad, but he was over it in no time. We go back to Dr. Berkow on Jan. 25th and he will run a different test to see if he can get the chicken pox vaccine.
They both got shots that they need to stay away from one another if they react to it. Taylor can't get the chicken pox and Logan can't get the MMR yet, so this should be fun. Taylor had no reaction the Chicken pox vaccine as a baby, so I don't really expect it from Logan. Taylor never got the MMR since he was sick, so I don't know what to expect from that one. The nurse said that more kids react to the chicken pox than the MMR, so we shall see.
We went to Nana's for a while after the Dr. I had to pick up my home made white chocolate covered cherries. Yum Yum!!! On the way home I discovered that I had no break lights again. No, I didn't discover it by being rear ended. Thank God. We fixed it with another fuse and we think that the trailer may be causing it. Jim used it Saturday and hopefully that is it and not something in my car.
After a trip to Wal-mart for fuses and tooth paste it was lights out for Logan who is not up to par after all those shots. Taylor played and we sat. This night has disappeared on us with out warning. I looked at the clock and it was 5:30 and the next thing I knew it was 10:00. I haven't lifted a finger to clean a thing, but that's okay.
Please pray that Taylor is able to remain NED forever. Pray for Trey and his family who have been told that there is nothing else they can do. www.caringbridge.org/va/trey Pray for the Courtney family as they have reached the one year anniversary of their precious Jake's passing. www.caringbrdige.org.nc/hopefor Pray for all our friends battling this disease and other illnesses. Pray for our troops.
December 19, 2004 Day +627 Day #325 off treatment
We went to church this morning for the Christmas Cantata. It was great. Taylor fell asleep, but what made it funny was that the soloist was singing a song called "Go to Sleep", when he dozed off. He had stayed up later after a hard day of playing and I think he got too still and couldn't help but go to sleep. After church we went to mall. We ran into a few people we hadn't seen for years. That is always nice. The boys were very good. Jim got some new shoes and Taylor did too. Taylor was funny because he put that little finger to his chin and thought about it and tried them all on just like Jim had done. He also picked out a matching pair for Logan. Of course they are spider man shoes. I hate those character shoes, but he loves them and I aim to please. We stopped by Gam maw's for a little bit before going home. Taylor was watching spider man and was eating cheese. Logan was into everything and pitching fits when he got moved. All of us conked out once we got home. It was a long day.
December 18, 2004 Day +626 Day #324 off treatment
Party day! Logan was a piss ant, not a good day for a party. Luckily a mid morning nap fixed him right up. We were up early and getting ready. Taylor was just as excited as Logan, of course, Logan had no idea what was going on. We started with food and chit chat then let Logan have his cake. I told you all he was different from Taylor. Taylor was not about to stick his hands in his cake and get dirty, but Logan didn't mind. He went 2 handed then smeared it all over his face. He was so messy that we had to put him in the tub. He loved it. Taylor helped him out as he was not worried about being messy this time.
Logan didn't want to open gifts, so I did that. He got some great clothes and toys. He is loving the riding toys. He got a little car that goes by itself when you push the man. He loves to push it then chase it. He is so funny.
After everyone left and we cleaned up some, it is still a big mess, we went to Guh's. Well, Temp, Christian, Taylor, Logan and I did. We went to a party in her neighborhood. Taylor and Christian loved it since there was room to run wild. The guy also had a huge race car memorabilia collection and they loved looking at it all. He even gave them both a car to take home. We walked down the road to see Santa. Santa was on the roof greeting kids and giving out candy. It was great. The guy on the ground used a wireless microphone to tell Santa the names of the kids and what they wanted. When Santa called for Taylor, Christian and Logan the older boys were amazed. When he told Taylor he had some Spider man stuff for him taylor just stared. It was funny.
Logan stayed with Guh while the rest of us went to eat. Jim and Chris had gone to see a movie, so it was just mommies and their boys. They had fun playing peek a boo under the table. They did get loud, but after waiting forever for our food we let it go. They were not too loud and they both hushed to stuff their faces when the food came. We do have some eaters! We went back to get Logan and headed for home. It was interesting having all 3 kids in the back seat. I know that I would go crazy if I had to do it everyday. Logan pulled Christians hair and he hates that. Christian touched Taylor and he was just yelling to yell. It was funny, but could have gotten ugly if we had to go too much further. We had fun though!
Did everyone remember to watch or record the One From the Heart special? It was good. It showed our wonderful camp facility and some of the things that we do there. I hope it gave the camp a lot of publicity. They are an amazing group of people and they help make an amazing group of kids have a super week at camp. We love Camp SAM!!! www.campsam.org
December 17, 2004 Day +625 Day #323 off treatment
We went back to school. Everyone wanted to know how it went and I was thrilled to tell them great! Taylor had many gifts waiting for him as did I. We had a great time opening it all when we got home. Logan is loving his Sponge Bob ball he got from Miss Becky. We had to run a few errands after school then we headed home to start baking cakes.
I am going to be honest with you all because you love me and will NEVER mention it to me or make fun:) I do not cook as I am sure you all know by the number of times that I write about us eating out. I hate it and I am no good at it. I proved that tonight. I am able to laugh at myself though, I am not ashamed to tell you. I didn't pay attention to what I was doing or read the directions. I had it in my head that the cake pan called for 2 batters, so I mixed it all up and poured it in. I went on about my business of cleaning and all while it baked. I came to check on it about 20 minutes later and it was pouring over the pan. I called Jim to tell him and we just laughed. It is tradition fro us to do some kind of major screw up when we bake these cakes. We tried cutting the top off and finishing baking it, but the liquid just poured all over the place. I got the batter ready, one box this time, for Logan's cake and then headed to Food World for another cake mix.
We did it right this time, but it stuck to the pan even though we coated it several times with non stick stuff. Jim had to make up where to put the lines to make the picture, but it still turned out okay. It was a long night of decorating. We made Logan a green star cake with a blue one that matched the plates. We had this spray on stuff that made us all high and half the kitchen green. However, the cake looked like green snake skin. Jim ended up starring it with the good icing over the "snake skin" icing. We were done by midnight, not too bad for all the trouble. I think that Taylor's Spider Man next month will finish off our decorating. We will be buying from then on.
We will also be having parties elsewhere. Now that Taylor has school friends, we are not having 15, 4 year olds at this house. Can you imagine!
It was 2:00 before I went to bed since I had to clean up the kitchen and fold laundry. Taylor woke up at about 3:00 crying and very upset. I think he had a bad dream, but I couldn't understand what he was saying which was only worsening the issue. He finally told me he wanted a car that was under the bed. I dug it out and he was okay. I don't know what that was all about.
December 16, 2004 Day +624 Day #322 off treatment
REMINDER!!! Please watch or set up your VCR. Saturday from 2-3pm on ABC. "One From the Heart" hosted by Sharon Stone. It is a show that is featuring the different charities that the PGA Tour benefits. Camp SAM is one of them and it will be featured. Maybe you will see us, but if you don't you will see a wonderful group that is so good to the cancer families. You will see where we go to camp and the amazing things that they do for us. Please watch!
Happy Birthday Logan! I can not believe it has been a year. When he was born I was so scared that I couldn't handle it or I couldn't love him like I did Taylor. I hated getting up at night and couldn't wait for him to be a year. Well, I did handle it though at times I am not sure how and I do love him so very much. No, it isn't the same as Taylor. Taylor is the oldest, the first and is special due to his cancer and the times we spent together in the hospital, but Logan is loved just as much, just different. Does that make any since? I do not miss the getting up at night, but I do miss that little bundle that would let you hold him. Now I have a wild Indian who is quickly making me insane. I looked for about a minute for my keys today. I was holding him digging in my purse with my free hand and he was chewing on them.
His first year was very different from Taylor's. I guess I will always wonder how much of it was just different kids and how much could have been cancer related. Taylor was always sick with snot or ear infections. He puked all the time and had lots of runny diapers and diaper rash. Logan has had the runs once and it was when they both got it. He has had 2 ear infections and one little fever/cold. I am so very thankful for that and pray that he never faces anything close to what Taylor has. I pray that Taylor never faces it again. Isn't it funny how God knows who can and can not handle it. I mean if it had been Logan rather than Taylor we would have all gone nuts. He wouldn't have been as calm and go with the flow as Taylor was and that would have doubled the stress levels of it all.
Logan's first birthday was spent a lot different than Taylor's too. Taylor's first birthday was on a Saturday so he spent it partying. Logan spent his at the hospital. We had to be there at 8:30 this morning. The clinic had be re carpeted and new furniture put in over night, we were not sure we were in the right place. We are getting a brand new clinic in January and our current clinic will be for something else. It is going to be very nice, we can't wait to see it. Anyway, we did his MIBG first at about 9:00. It went smooth. Logan was cutting up and being silly. Taylor watched TV. I did good at not looking until the end. I saw a spot on his leg that I didn't like, but she never tried to rescan it, so I figured I didn't know what I was looking at. I was right. Meredith called this afternoon and the MIBG was negative for any NB. His CT scan was clear of any tumors, but it did show some thickening of the sinuses. I knew that without the CT:) It also showed some spots on his lungs that are not getting enough air. It is not pneumonia and it is not disease related, probably due to his asthma and sinus issues. He will recheck that at the next scans unless we see need to sooner. I admit that it scared me silly when Meredith said it, but I am okay now. All his counts and HVA/VMA etc were too good to worry over this. It could have been that way all along and this film just got a better look. I am going to do my best to let it slip to the back burner. Please pray that it is nothing that will ever cause him any trouble. After the scan we went to the cardio area and his heart checked out. It is all good. He still has that tiny hole that we knew about. 1/3 of the population has it and it is not considered a heart defect. It is only important in his case due to his port/central line. They need to be sure that it is in the right spot so that meds do not go into the left side of the heart. That is not recommended, but not dangerous, so it still isn't that big of a deal.
By 10:15 we were done and headed to the Children's Harbor to the jewelry sale. Taylor picked me out a pair of earrings and we are going to wrap it up for my Christmas gift. He picked Jim some D batteries and box cutters. He is very proud of it. He showed it to him, but we are going to rap it anyway. It was funny when he did it because it triggered a memory of me at about his age. I remember grabbing some tools that my mom was about to wrap and running to show my daddy.
We went to Cracker Barrel where Taylor ate fair and Logan ate like a PIG! He had already eaten before we left, but he still polished off half a pancake, some green beans and half a corn muffin. Once we got home both boys got a bath and went to bed. Logan has found a new toy. Well, kind of. He loves to play with the pots and pans, but tonight he was in the kitchen in the dark playing and when I flipped the light on to check on him, he was in the empty cabinet. He is so silly!
I will update again probably Sunday. Tomorrow will be busy baking cakes and getting ready to have Lo Lo's party on Saturday.
Please join us in thanking God for another great round of scans. Pray that Taylor is done with cancer and is NED forever. Pray for all the kids fighting this disease. Pray for our troops.
December 15, 2004 Day +623 Day #321 off treatment
What a day! Not as long as our past scan days, but a little harder on Taylor. In fact, he told Guh on the way home that he had a tuff day and that they do that to him all the time and he doesn't want them to do that any more. Poor little guy. We were early to clinic so he and Logan were able to run around and play a little before we got started. It was so cold and Taylor was still half a sleep, so he wasn't real chipper, but okay. He, of course, had his Spider man stuff on. He weighed in at 33.1, he was 33.5 2 weeks ago, so he is holding steady. He is about 38 inches tall. We got his port accessed at 8:30 and then headed up to get his MIBG injection. That didn't take very long at all. He will go back at 9:00 tomorrow morning for the scan. Not a favorite of mine since I don't like to look, but often times can't stop myself. I also hate the CT scan since I can not see what they are looking at and it makes me crazy. I guess I am crazy!
After he was injected with the dye we went back to clinic. We never did get to see Cardiology, so we will try that tomorrow. He went back to an exam room and since Dr. Berkow was out today Miss Rhonda just checked him out to clear him for sedation. He got the all clear even though after only 2 days off Augmenton he is snotty again. UURGH!!! We went up to Simon Sedation and got started on his bone marrow biopsy and aspirates. I went back with him until he was asleep. While we were waiting on them to get all set up he was talking to Dr. Winkler about Christmas. She asked him what he got me and he said a football. She asked him if he thought I wanted a football. He just shrugged and said, "I don't know, I do" He is a character! He finally went to sleep and I left. It took a lot longer than normal and I saw Richard come up then go down. I thought something may be going on, but didn't think to much of it. Finally Rhonda and Meredith came out and said that they had some trouble getting the biopsy from the front. I went back to the room where he was having a hard time waking up. He was tired and that extra boost of medicine didn't help. He finally stirred enough for them to let us go back down stairs. We sat in clinic for a little bit to see how much pain he was going to be in. He never needs pain meds after this procedure, but since they had to poke him a few extra times and dig a bit harder we were afraid he would be in pain. He didn't seem to be too bad, so we just gave him Tylenol with Codeine rather than morphine. He took a trip to the toy box, but he was still asleep and just grabbed something. He got a stuffed cat.
After this we went up to get his CT scan. Since he was still asleep and had not had any drink yet they didn't even attempt to make him drink the contrast. That works for me. It meant no fighting and bribing him to drink that stuff and it meant no hour wait to let it get into the blood stream. He was able to go right in and get the scan. About half way through the scan he perked up and was silly. The scan didn't take but about 15 minutes and we were on our way to eat. Taylor ate a pretty good bit of his grilled cheese and a lot of his ice cream sandwich. Miss Rhonda and Meredith came to check on him and he was still bleeding a little, but he was okay. I had to ask about the troubles in the Simon sedation room. During that 15 minute CT scan I was able to let my mind wander to far. I know that marrow can get so packed with cancer that you can not draw it out and I was so scared. I could hardly wait until the scan was over to get to Meredith to ask her about it. It was fine! The aspirates or liquid part can get packed and not draw out, but the biopsy wont. There is a artery that runs through where they needed to go to get the marrow and since he is so small it made it harder. It had nothing to do with him at all. He had no problems with the back biopsies just the front. He does seem to be in more pain than ever before. I have given him several doses of pain meds. I think he will be okay tomorrow.
After lunch we went back to the clinic to get de-accessed. We checked on his counts that we didn't think ever got drawn last week, but were and they are fine. I didn't find out about his titers, but I will do that tomorrow. After he lost the needle we were headed home. Tomorrow we will see Dr. Berkow and get results off scans. Hopefully in a week we will know the marrow results. I am calmer than I have ever been, but still nervous. Tomorrow will be a short day as far as I know. It wont take but a few minutes to get the cardio test done and about 45 for the MIBG. We will then just be waiting to get results of the scans. I will update when I know results.
Please pray that all the scans come back clear with no questions asked. Pray that Taylor is NED forever. Pray for all the kids that are battling cancer and other diseases. Pray for the families that have lost a child or have been recently diagnosed. Pray for our troops and the family members that are missing them.
December 14, 2004 Day +622 Day #320 off treatment
Baby It's Cold Outside. I think that that is the theme song for today. It is freezing. I stuck my head out long enough to plug in the outdoor lights and about froze. I am glad that today was a stay at home day. We did nothing. We played and while Logan napped Taylor and I emptied the garbage and vacuumed the living room. Logan helped me do laundry by closing the dryer door every time I put something in and I had to re-open it a hundred times. He thought it was a great game, I did not.
I have my hands full with him. He got put to bed for his behavior and I have a feeling it will be a very common occurrence for him. I popped his hands a bunch of times for getting in the garbage and for pulling the blinds and for taking things off the tree. Well, when he decided to slap me in the face then pinch me, he got put to bed. He played for about an hour then slept for an hour. He woke up no different. Well, madder because I had blocked his beloved drawer and he couldn't get to it.
It has been a good day. Taylor has been a ball of energy which is always good to see the day before a set of scans. It is still a bit hard to think about scans as it is just an anxious time for us. However, it is nice to go into it with a clean bone scan behind us and him feeling so great.
We finally got the kitchen put back together. It was interesting. I helped with the bakers rack and island. I attempted to help with the stove and fridge, but wasn't. The kitchen is back and now all we have to do is get the little stuff all cleaned up and we will be done. I am so crazy! We had things put back together by 7:30 or so. When I got ready to put Logan to bed at about 8:00, I went to the living room looking for the fridge to get milk!
Taylor took advantage of the night before a NPO day and ate 3 ice cream sandwiches. He was so dirty! We all got in bed around 10:00. We knew we had a busy day ahead of us and needed lots of sleep.
Please pray that Taylor has perfectly clear scans that show he is still NED. Pray that we have a smooth day and a quick one. Pray for all of our friends that are battling cancer. Pray for our troops.
December 13, 2004 Day +621 Day #319 off treatment
Today We went to school. I was back in my class and Taylor did fine with me leaving him. I didn't think that at this point it would matter, but I didn't expect his crying earlier in the year either. He is still wearing his Spider man stuff. He has now added the t-shirt that is about 2 weeks dirty. I had to stuff it in my purse and give it back to him after school. I can not keep it off him long enough to wash it. He has another one, but it will not do.
I was watching him eat lunch through a window. He was cracking me up! He was done with his macaroni and wanted his sweets. He couldn't get the teacher's attention so he started to wave the empty bowl in the air. She held up his raisins and a pecan spin for him to choose. He picked the pecan spin then proceeded to hold up his shirt and rub his belly and chant "yummy in my tummy". He is so funny. He does stuff like that at home all the time, but I have never seen him do it at school. The kids all had their hands painted to make angels for a gift for the parents. He told me all about it and how Miss Joy did it. He also shared with me a very sweet moment I would love to have had on video. He told me that he colored baby Jesus and that he slept on the hay like cows eat. He also told me that an angel told them he was born and followed a star to get to the barn. How sweet! We went to Subway to get some dinner (the stove is still on the living room:0) and we passed a nativity scene in a yard down the road. He told me all about it again.
He has had the best time with this messy house. He has used way too many of my wet wipes, but he has the wet dry vac sparkling. He has cleaned it and cleaned it for days now.
Tonight Jim hung new quarter round and puttied it as well as sealed the grout. Tomorrow we will finally be able to move the stuff back into the kitchen. Yahoo!! Logan will be mad, he will no longer have free reign over the drawer full of baby spoons and bowls. I have those things all over as well as syringes. He loves that drawer!
December 12, 2004 Day +620 Day #318 off treatment
We did get to sleep until about 8:30 today. Logan was in a fair mood and Taylor was too. Taylor begged to go help Jim in the yard. I bundled him up and off he went. It wasn't all that cold, but I can not have him getting sick since he will have to be sedated next week. Jim cleaned leaves from the yard and roof. That was a stressful job. Not just that it is a nasty job, but due to an incident that I do not think I told you all about. A friend recently sold her house. The family who bought it has just experienced a tragedy that has hit us all very hard. The father was putting lights on the house and fell off the ladder and was killed. I can not tell you how sad that made me. I know the excitement of a knew house and what it feels like to have a slap in the face right in the middle of all that excitement. (Taylor was DX 2 weeks after we moved in our house) Please keep this family in your prayers. Anyway, that really made us think as he was climbing up and down that ladder.
Later in the day Logan and I went shopping with Guh. Taylor didn't want to go. That was okay since Guh was able to pick up some things for him without sneaking around. Logan was a very good boy for the journey. He was very sleepy and wasn't happy about his cold milk, but he still did good. I got home around 5:00. Just in time to feed and bathe the kids and get ready for another day.
I did get another early gift. I put my knew toile beading on. It is so smooshy and comfy that I want to spend all day in bed. Hey, there's an idea for Mother's Day. Taylor told me he didn't like it and to put the other one back on.
December 11, 2004 Day +619 Day #317 off treatment
Today Chris and Jim finished laying the tile. I took Taylor to a birthday party. It was for a little boy that was in Taylor's class before he got sick. It was so great to see him and his family. They have been great supporters of us in this fight. Thank you so much for inviting him! The party was at pump it up and Taylor absolutely loved it. After we left the party we had Guh follow us to Express Oil change again. I felt better having her behind me knowing my breaks didn't work. I left my car there and they fixed it for me. We did a little shopping and then ate some Milo's. As soon as we were driving out of Milo's the guy called and was done with the car. It seems to be working now and hopefully we will not have that problem again.
We were also just in time to go back to Lawson's house to see Santa, but Taylor fell asleep and I didn't want to wake him. He didn't know anything about it as it was a surprise for their kids, so I didn't have to explain why he missed it to him later. Thank you Jim and Vicki for the invitation!
We got back home to a tiled floor that we got to sponge off every little while. We went to Wal-mart and Lowe's and got some Krispy Kreme dough nuts. Taylor chowed down two and Logan had one. Who doesn't love a Krispy Kreme?
We all collapsed into bed around 10:00 although Taylor continued to sneak up and didn't go to bed until nearly 12:00. He gets that from me. I would rather stay up and sleep late. Unfortunately Logan hasn't grasped that yet.
December 10, 2004 Day +618 Day #316 off treatment
Today we went to school. I taught Taylor's class. His teacher had to go back into the hospital. Pray that they can figure out what is going on and fix it soon. I have been told numerous times that Taylor is good at school, but if he acts the way he did today then they are telling lies. Joy assured me that he was acting that way for my benefit and I am sure he was worse for my benefit, but I am willing to bet that he isn't an angel at school.
He wasn't bad just a wild Indian:) I have always had 3 year olds or younger and was scared to death when I learned I was moving to 4 year olds. However, here it is about 4 months later and I was about to have a nervous breakdown with the 3 year olds. It is amazing the difference in that 1 year age gap. The three year olds were very good just not as independent as the 4's.
After school we headed to Nana's to play. I got some Peanut butter fudge that she had made. Taylor didn't want to try it, but he finally gave in and did and then he ate about 4 pieces. Logan had no trouble polishing off 2 pieces himself. After we left Nana's we went to Express Oil change where I learned that I had NO break lights. I don't mean I had a blown light on one side, but no lights at all. Needless to say I was a nervous wreck coming home.
Once homed I cleaned out as much of the kitchen as I could and even drug the bakers rack out. This is where the fun started! When Jim got home he and Chris took the stove, refrigerator and island out and put it all over the living room and dining room. It is lovely. The kids think it is great to have a fridge in the living room, so does Jim:) I know that all the cars that are slowing down in front of the house are looking at the Christmas lights not me in the front door pouring milk, but it is funny!
Jim and Chris got all most all of the tile laid tonight. Logan slept through all of the commotion. Taylor and Christian sat on buckets at the kitchen door and watched.
December 9, 2004 Day +617 Day #315 off treatment
Today we stayed home. It was too rainy to try and get out and there was really nothing that we needed to do. We played around and did a lot of nothing. Logan is drinking milk today. I give it to him a little cooler each time in hopes of him being okay with it cold rather than having to warm it up. If I can get him to drink from his cup then we will be good. He can, he just doesn't swallow it. He lets the liquid roll right out. I am not sure why, maybe he gets too much.
We didn't do very much today other than just play and watch cartoons. Not very much to report to you.
December 8, 2004 Day +616 Day #314 off treatment
Today was a school day. We had a great day. Logan even took a nap at school, very unusual for him. He was mad at the big kids because he wanted the police car and he couldn't get it. He thinks he is as big as they are. Taylor went to school fully decked out as Spider man. He put it all in his basket like Miss Christi asked him too, so he is allowed to bring it back one day. He is always so good at school, so I guess that is what matters. He is good where he needs to be. He and all the other boys are heartbroken that the big wheel is broken and had to be thrown away. He loved to get to school early and get it out. I guess maybe the birthday fairy can bring him a big wheel cause Santa is spent out:)
We came home from school with all intentions of staying put for the day, but we headed to Wal-mart since tomorrow is supposed to be a nasty day. We got all our Christmas shopping done and even got it all wrapped up. We are done!! We now just have to get the house in order for Logan's birthday party and the Christmas company we will have.
Logan had a rough evening. I don't know why he was so tired other than he got his nap earlier than normal and it threw him off. He was so mad and nothing you did made him happy. I finally put him to bed at 6:30 where he slept until 7:00AM!!! Taylor helped me wrap gifts and decorate some ornaments. He painted an ornament for us to hang up. He has several more to paint, but opted to save them for later.
Please pray that Taylor is NED forever. Pray that next weeks scans are crystal clear, no evidence of disease. Pray for all our friends that are fighting cancer. Pray for those that have lost a loved one or have just been diagnosed. Pray for our troops and their families left missing them while they are away. Pray that they return home safely.
December 7, 2004 Day +615 Day #313 off treatment
What a day we have had. Just another day that we will laugh at one day, but not today. However, I read some sites today of fellow cancer mom's that have lost their children and I am thankful to have Taylor here, trouble and all.
We started the day great other than I wanted to stay in bed and listen to the rain, but Logan didn't. I did some laundry and vacuumed up the mess that Taylor made while he ate 5 biscuits. Yes, you read that correctly, 5 biscuits. That was a mess well worth it. Logan played well for a long time in his room before going down for his morning nap. I took my shower then and no sooner had I gotten out, he was awake. I got him up and he got into everything and Taylor yelled about it. A normal day!
By about 12:00, Logan could not keep his eyes open and neither could I. Logan went right to sleep this time. I laid down, but never went to sleep. Taylor had no intentions of sleeping and therefore was not going to let me. I finally just got up. When Logan woke up we went to the post office again. This time we needed post card stamps for birthday invitations. I can not believe that in a little over a week, we will be celebrating Logan's 1st birthday.
We went to the dollar store and looked around then went to Sonic for a chocolate shake. That turned into to trouble later. I got an odd letter in the mail and I am like a little kid, I can't wait to get inside to look at it, so I opened it once I parked the car. I told Taylor to sit still and we would get out in a minute. Taylor didn't sit still, he decided to act silly and sit in the toy box that is in between his and Logan's car seats. When he did this he sat on the Sonic cup and crushed it. Chocolate went everywhere, in the seat belts, between the seats, all over Taylor and then all over everything he touched as he scrambled to get out. I put Logan in his walker and told Taylor not to move and attempted to clean it up. Logan darts out of the garage like a speed demon and straight to a puddle and got all wet. I got the car cleaned up and we went upstairs. Logan got put to bed and Taylor went to his room to play. I just sat! It was bad enough that he made the mess, it was just that I am so tired of telling him 10 times to do something and him not listening. That is our big thing right now. I am glad to know that it seems to be the issue with all his classmates right now. It is nice to have a normal problem. He was very good the rest of the day. I now say it once and rather than repeating, I just state to him that I have already said it once and he does not want me to have to say it again. It usually works, but not always. Oh well, like I said before I am happy to have him hear no matter what behavior and happy to have a "normal" problem.
We went to the grocery store when Jim got home. Taylor went as Spider Man. He wore his mask and gloves. He is so funny. Logan sat in the little car with Taylor and drove. It was cute, but trouble. He was pulling Taylor's hair and Taylor didn't understand why he wouldn't stop even though we told him too. It was funny to us, but Taylor was ticked.
Another wonderful day. Please pray that we continue to have these wonderful, normal days. Pray that Taylor is NED forever. Pray for all of our friends that are battling this and other diseases.
December 6, 2004 Day +614 Day #312 off treatment
Back to school. We made it on time and we were all at least half a wake. After school we went to the bank and post office, but I am not sure it was meant to be. The mail box store that used to be right by the church is gone, so I headed to the interstate and to the bank first. We were about 2 miles from the exit we needed when we came to a dead stop. An eighteen wheeler carrying cars had turned over and cars were everywhere. It was a mess. We got off and had the option of waiting at the light to get right back on the interstate or going through town. I opted to skip the light and go through town. Wrong choice. We got stuck behind a stalled car that was being pushed by a police car down the highway. Then a funeral procession came through. I did not mind that wait, but I did wonder what next? We finally made it to the bank and then headed to the post office. On the way we got behind a funeral procession. I have no idea if it was the same one or not, but I had to just laugh at all the hassle for a 10 minute errand.
We finally got home around 3:00. Taylor was mad that it was raining and he couldn't go outside. Logan was sleepy and hungry. He took a bottle, but never went to sleep. He got up and the two of them played for the longest time. They were loud and wild, but it was so funny. No fighting or yelling just playing.
Both boys ate a great dinner before we went down stairs to play. They didn't get along as well this time, but it wasn't too bad. Logan was about to fall asleep, so he was very grumpy. I finally brought him upstairs around 8:00 and gave him a bottle and put him to bed. He was gone in no time, no whining to get out of bed this time. He did wake up about midnight crying, but went back to sleep. I gave him some Tylenol. I can only imagine that having 8 teeth come in at one time is not fun! The top 4 are almost in, so maybe his discomfort will end soon.
Taylor was in his room cleaning up. I guess he climbed in bed when we decided he didn't want to clean anymore. He fell asleep around 9:30 and we didn't even know it. We went to see how he was coming with his cleaning and he was asleep. He would rather do anything than clean up his room. He was mad because I wouldn't help him. I didn't help make the mess, so I wasn't cleaning it up. Besides I was busy cleaning up the tea and yogurt that he spilt. Anyway, he didn't pitch a fit about it he just went to be instead:)
We have had a busy weekend, but very fun. We will try to take it easy this week before scan time, Logan's birthday and Christmas get here and there is no time to rest. I will update again in a few days.
Please pray that Taylor's scans are crystal clear with no questionable spots. Pray they only show NED and will forever. Pray that all our friends fighting this and other battles are doing okay. Pray for those who have lost a loved one as they enter this holiday season. Pray for those who are newly diagnosed. Pray for our troops and there families who are missing them.
December 5, 2004 Day +613 Day #311 off treatment
I can not tell you how bad I wanted to stay in the bed this morning. I do not know if we were very tired or what, but that hotel had the best bed ever. We were up and on the road by 9:00. We had to stop for breakfast since Taylor had his meds, but that didn't take but a minute. Taylor ate 2 hash browns then fell asleep. We made good time, I guess everyone went home last night as the roads were not crowded. We got home about 11:00 and started getting ready.
By 12:30 we were headed to Guh's to get Logan. He was so funny when he got in the car. He was trying to touch Taylor and just jabbering away. Guh said that he yelled "Mama" at every closed door. He missed us. Taylor missed him too because he asked if we were going to go get him. When we asked if he missed him and grinned and said no.
We got to Healthsouth for the Camp Sam party right on time despite our busy morning. Taylor loved the brownies and Logan just wanted to crawl all over the place. He was a little hard to deal with. Both boys sat in Santa's lap. You would have thought it was a chore as they both had such a sour face in the picture. They were happy, but that is what the camera caught. Logan got a ball that makes noise and a rubber duck and a teddy bear from Santa. He loves the ball, but he loves Taylor's gift too. Taylor got a little wagon full of Legos, a beach set full of all kind of sand toys and a felt board. Logan is all into the wagon and legos. Taylor caught on quickly at this age to build with them, but Logan just likes to drop them into the wagon, dump them out and start again.
After we visited for a while with clinic friends it was time to go. We went straight to Children's Hospital where we were an hour early for the Children's Harbor tree lighting. We went to 4-tower to visit some of the nurses. Taylor just settled in like old times. He was running around and having a good ole time. He pulled Logan around in a wagon until it was time to go. He then pulled him all the way to the Children's Harbor. Again, Logan was hard to handle. He ended up going into the play room until it was time to light the tree. Taylor ran up to stand with the survivors AKA the faces of childhood cancer. The big lighting ended the program. Luckily most of the people there were at the Camp party too as we did not have time to mingle this time. We had to go. We had two hungry boys and I had shopping to do.
I went to the Dillard's sale with Ghen Ghen and Gam maw. We had a good time. My feet hurt so bad that I did my shopping with no shoes on. We got some good bargains. Taylor is going to love the Spider man PJ's we found. We left Tuscaloosa at about 9:30 and headed for home. I was beat. I came in and got lunches and diaper bags ready for tomorrow and hit the sack. Again, I was gone in a minute. Taylor was not gone as fast, but he did stay in the bed and play and not get up. Logan was out like a light, he has had a busy day too.
December 4, 2004 Day +612 Day #310 off treatment
We got up around 8:00 our time and got ready. Fan fare didn't have a lot that Taylor could actually win, but he did enjoy the games. He really liked the bean nag toss at the Chick Fil-A stand. He never won the cow, but he still enjoyed trying. He stood in line for a very long time for a simulated race car only to be told he was not tall enough. The lady working it let him just sit in it for a minute. He wasn't upset about that, it probably would have scared him when it moved anyway. He ate some pizza for breakfast. That was the only option and he had to have it since he had taken his Augmenton before we left the hotel.
There was a huge parade with floats and balloons that he wanted to watch. We would have let him had we know that he would be ready to leave fan fare so soon. Oh well, he did get to see a Woody, Cat and the Hat, Coke bear and several other balloons as we drove past. He loved it. He also got a kick out of all the escalators in the Conference center that fan fare was held in. He sat in the lobby and played cars in the window seal for the longest and was happy as a pig in the sunshine.
Soon it was time to go up to the Hospitality area where we had dinner. It was delicious food, but not kid friendly. Taylor did enjoy a lot of corn bread and some cool whip. He danced around to the bands music and then he was ready to go back out into the lobby and play. While we were out there we realized that Tiger Walk was about to start, so we went outside to watch. We were up high, but not real close, so I am not sure that Taylor knew what he was looking at. The stadium was open after Tiger Walk, so we went on in.
We got Taylor a hamburger once inside and he ate about half of it and it was a big burger. He had some popcorn later on, so he did pretty good. There was no tea, so once his cup was empty he was done. We tried to get him coke, but he wouldn't have it. It was about an hour and a half before the game started, but he was good as gold and played and yelled. He liked the fact that he could be as loud as he wanted and no one heard him. The seats around us were empty for a long time, but they soon filled up. We knew then that our 40 yard line seats were good. Randy Campbell sat right next to me and Stan White's wife behind us. Taylor climbed in Randy Campbell's lap for a photo. Stan better look out because Taylor and his wife did some flirting:) It was a lot of fun and Taylor loved it. He screamed and screamed and jumped and jumped. Each cup holder had a coupon in it and people were throwing them on the ground. He collected all that were by us. When the game was over we walked around and got some cups to take back to Gam maw. Taylor was collecting coupons. We now have enough for free Dr. Pepper from Chick- Fil-A for life:) He is crazy!
Once we collected cups and coupons we went to the car that was right outside the stadium and headed for the hotel. We got caught in traffic, but it still didn't take but about 15-20 minutes to get back. We parked and went in, but Jim was soon on his way out. I packed and Taylor played while Jim walked to McDonald's for a very late dinner. I thought Taylor was going to go to sleep before he got back, but he caught his second wind and was all over the place. He was kicking his new SEC football and riding his skateboard. He didn't eat a lot, but he did eat at the game and we didn't. Finally at about midnight we hit the bed and I think we were all out in less than 5 minutes.
December 3, 2004 Day +611 Day #309 off treatment
We went to school today. We got the boys school pictures back too. I know people are tired of seeing photos of my kids, we have just had 3 sets made, so we have been giving out pictures like mad. Anyway, after school we went to Wal mart for a few last minute items that we didn't get the day before even with a trip to both Target and Wal-mart. We came home and finished up our packing and loading the car.
Jim came home just in time to leave for the Christmas party. There were not a lot of people there, but we still had a great time. Taylor had fun with his new crash car that Santa gave him. Logan got a puzzle that he will love, but he was too busy pushing chairs around to look at it. The kids both ate great and Taylor ate at the kid table all alone. None of the other kids wanted to sit there, but he did.
After some visiting and playing we headed out. We had to drop Logan off at Gam maw's where he was going to stay while we headed to Atlanta. We finally headed that way around 9:00. Taylor went right to sleep and slept until I put his PJ's on in the hotel and he went right back to sleep then.
We made good time with only one stop for gas and drinks. We found the hotel easily, but couldn't find the entrance:) It literally took us about an hour to drive around and figure out which side to go in. We finally made it and got in and settled around 12:15. We had a little scare when the hotel worker told me that the room was cancelled, but it had been made twice and one was cancelled, so we were okay.
Please pray for all our friends battling this disease. We have learned that Carl has passed away rather unexpectedly last week. Keep the Robinson family in your prayers. www.caringbridge.org/mn/carcar An NB friend of Morgan's, Eric, has also passed away after a 10 year battle with the disease. Pray that Taylor is NED forever. Pray that the upcoming scans are clear. Pray for Sarah who has been having some strange symptoms. www.caringbridge.org/nc/sarahsmith Pray for Chris who has recently had surgery and is still inpatient at MSKCC. www.caringbridge.org/fl/chrisbecker
Pray for the many others who are battling NB and other cancers and diseases.
Congratulations Randy and Andrea on your upcoming family addition! Congrats to you to Cathy!
December 2, 2004 Day +610 Day #308 off treatment
Today we went to lunch with Guh and Nancy. We went to IHOP where both boys polished off some pancakes and eggs. We went to Target afterwards, we managed to spend plenty even though they did not have what we were looking for. We went to get Taylor's hair cut. We met Nicole that I used to work with and then went to Toys R us. My children were crazy and have convinced her not to have children:) We had a short visit then we both headed off in opposite directions to finish up some errands. It was nice to visit even though it was literally a few minutes.
We did a little more shopping and then we came home. I decorated some ornaments for the church tree and I packed clothes for this busy weekend. I even ironed all our clothes for Sunday since we will be rushing in and right back out the door.
Pray for all our friends that are battling this and other diseases. Praise God that Miss Shannan's surgery did not reveal cancer. Pray she is feeling better soon.
December 1, 2004 Day +609 Day #307 off treatment
I can not believe that it is December. It seems as though we just celebrated Christmas and wasn't it just a few days ago that we brought home that little 7 pound bundle of joy. Here we are again this time with a 20 pound bundle of trouble. Just kidding. I can not believe he is a year old. I admit that I do not like the baby stage and last year I couldn't wait for him to be older, but now it is sad. My last baby is not going to be a baby much longer. No, that does not mean I will try again:)
Today was a long day. What a way to start the month, but since it all ended on a positive note it is okay. We left home with plenty of time to get to the hospital, but due to the bridge that is out on the interstate, it took 20 minutes to merge on to I-65. We were about 30 minutes late to clinic. We were rushed in and accessed and sent upstairs. If were not there in the next 10 minutes they were going to cancel our procedure. I hated that I was late, but I didn't apologize since in 2 years we have never been late. It also kind of made me mad that they are quick to cancel us, but they never have much to say when we have to wait an hour or more past our appointment time when they are behind. Oh well, we made it up to the nuclear med area and got his injection. We then headed back down to clinic. He was weighed and measured. He was 33.3 pounds and about 38 inches tall. Taylor and I then went to the Children's harbor to pay for his ribbon on the cancer tree. He will have one on the tree at the hospital and the national tree in Washington D.C. We also took a trip to the drink machine and to potty in a cup. He told me he didn't need to go, but he ended up filling up the cup and having to finish in the potty. We then just hung out in clinic 5's waiting room until it was time to go back upstairs and get scanned.
It was around 10:00 when we headed back upstairs. We ended up meeting a nice guy who got Logan quiet a minute and turns out he and his brothers went to school with Guh. Now I have a friend in the radiology department. We didn't wait too long up there until he went back. He had to potty before he could scan and he did wet his leg again. This time I cleaned him up and we stripped him before the scan just to be sure. The scan only took 11 1/2 minutes. He was good as gold for the entire procedure. I had to look at the screen even though I swore I wouldn't. I admit when I first looked I was scared, his head was just a glowing, but it was just a growth plate of some sort. We just happened to have a radiologist in the room with us, so I now know all the areas that are supposed to light up. Now I know I can never look again, if I ever saw anything other than what he said glow, I would hit the floor right then and there.
After the scan we headed to the clinic and saw Dr. Berkow. He did not have an ear infection which shocked me after the other nights episode, but he has not mentioned it again either, so who knows what that was about. He had clear lungs despite the gunk going on in him. Dr. B did start him on Augmenton to try and clear this yucky cold up. We had a lot of blood drawn, but somehow none ever made it to the lab for a CBC, so we did not get counts. We are not worried about those. They were fine on Nov. 5th when we were there and everything else was fine, so we will just check them on the 15th when we go back. Dr. B's first words when he came in our room were "bone scan is normal". Taylor jumps up like he knew what that meant and said "yeahoo". He doesn't say yahoo, but yeahoo. Anyway, we were very excited. I do feel better going into the big scan time in a few weeks with a clear one under our belts, but I am still nervous. We have not had a bone scan in a long time since it is usually used if a MIBG shows a suspicious spot. That leads me to believe that this is a huge thing to have it be clear and it is also the test that diagnosed him. However, I am still nervous. I guess that is just human nature and will always be there. At any rate, we are thrilled and truly believe that all scans will show these same results.
After our clinic visit we ran to the pharmacy and to eat. Taylor didn't eat anything and Logan was just whiney. He is a mama's boy so bad!! He cries every time I get out of his eye sight even if I am pushing the stroller. I couldn't go 2 inches without him flipping out. We stopped by the water fountain and brushed Taylor's teeth before going to the dental clinic. We were called back quickly and it started out great. We have done a great job of keeping those new teeth clean and they looked good. However, he did have a cavity in his right, bottom molar that is not capped. Dr. Fellers said that by filling that it made it like a broken piece of china, it will always have a crack in it no matter how tight the filling. We will have to concentrate really hard on those 2 teeth that are not capped to keep cavities out. Taylor was screaming every time he touched that tooth, so he decided to go ahead and fix it. They do not use numbing meds for that. My little trooper have a cavity filled in about 5 minutes with no meds. WOW! I don't think it hurt so much as he was about to puke. He has a horrible gag reflex and just the tech trying to suction him would set him off. They didn't get to use the kind of filler he wanted to due to him not keeping his mouth open long without gagging. It didn't help that he had a gallon of spit to choke on and she couldn't suction him or he would puke. It was a lose-lose situation. Anyway, they did a quick filling and then put some fluoride on it. He got some stuff out of the toy chest, there is slim pickings in the dental clinic. I am not sure what it is that he and Dr. Fellers finally decided on, but he liked it.
By 2:00 we were finally headed home. Taylor wanted to go to Guh's, so we went there. Both boys were asleep on the way, but woke up to play. We put ornaments on the tree and watched a movie. Logan rode on his 4 wheeler that is supposed to be his birthday present, but he wont know. He gets off of it like a big boy. It cracked us up. He sits and points and acts like a baby should then when he is ready to get off, he just throws that leg over and jumps off. He has watched Taylor on his 4 wheeler too many times. He wants to stand up to ride it rather than sit:)
We finally headed for our house at about 4:30. When Jim get home Taylor went outside to help him put up the outdoor tree and the train. He loves it. He got tucked in around 10:15 and I think he was asleep by 10:16. I think that about ends today. It was a long one and I am headed to bed.
Thanks for all the prayers, please continue to pray for the next batch of tests and continued NED status.
November 30, 2004 Day +608 Day #306 off treatment
I have a little plaque in the kitchen that says Mothers of little boys work from son up to son down. I must say amen to that. They are giving me a run for my money today.
Neither one has any desire to eat. They are both snotty, so I guess they don't feel real swooft. Taylor has been so mean to me and Logan. Slamming doors, yelling, hitting. I am at my wits end with his attitude. Logan keeps locking himself in his room. I open the door and he closes it right back, so I can either stand there and keep opening the door or I can go about my business and let him scream. What to do?
Taylor topped the day off at lunch. Jim had called and offered to bring him a happy meal when he got off. Taylor was so excited that I offered to load up and drive in the rain to get him one for lunch. He was so excited. We got there and he thought that Jim was going to be there and when he wasn't, he was mad. He refused to tell me what he wanted. He refused to eat it too. He was not allowed to play until he ate it. Needless to say that got him to share with Logan. He was quick to dish out the fries:) He ended up eating 3 nuggets and about half the fries.
He watched Spider man 2. I thought it was too scary for him, but we couldn't pull him away. He was in "mam mode". You know the mode, you can yell and jump and act the fool and they don't hear it. He could not even pull himself away to help me make tea. That is his favorite job. He is so into the spider man thing. He pretends to climb walls and he is going to kill himself trying to spider man up the stairs.
I did some wrapping the other night and a gift accidentally got pushed under the ottoman and we didn't know it. Leave it to Taylor to find it. We had a quick fix though. We told him that Santa hid it there as a warning that if he didn't straighten up that would be all he got. It didn't work, but it was worth a shot. He did believe that Santa left it, but he didn't care enough to behave. Not for long anyway.
Tomorrow is scan day. Please pray that we get an all clear. Pray for all our friends that battle cancer everyday. Pray for our troops. Pray for Shannan and Chuck as they gear up for surgery.
November 29, 2004 Day +607 Day #305 off treatment
Ready for a look back? On this day last year we dropped Taylor, Guh, and Mary off at the airport for a 2 week stay in NYC. That was a hard 2 weeks, but I needed it since I was only a few weeks from having Logan. I can not believe it has been a year. It seemed like the 2 weeks took a year. I can not believe that Logan will be 1. Holy cow!
Back to school. Taylor was ready. He wanted to ride the big wheel. We gave Miss Shannan her present early since she may not be back by Christmas. She is having her surgery Wednesday. Please pray that the surgery goes well and the cyst is non cancerous. After a few tears were shed by us two emotional women, we were off to a great Monday.
My class was great. They say Taylor was great, but he showed his tail once I picked him up. He wanted to carry Logan's diaper bag, but it was way to heavy and he was being very ugly about it. Once he got it to the car, he was ugly and wouldn't get into the car seat. I finally had to pop him to get him in and buckled. We then headed too the bank and Wal-mart. He was quiet because I told him no prize and he wanted to prove he could be good to get one. Too bad he didn't prove much! He was right back at it once we got to Wal-mart.
We found out today that Taylor will miss his school Christmas party and Santa, but that will be okay since we will be hearing Dr. Berkow give us the best Christmas present of all. He is sure to tell us that Taylor is NED still. We will begin our scans on Wednesday and finish them up on the 15th and 16th. We can not get the bone scan and MIBG together due to the isotopes they inject into him, so that is why they are spread out.
Another reason is that he will see Santa this Friday night at Gam maw's sorority party. He is also going to the Camp Sam party on Sunday. Sounds like a busy weekend huh? Well, you haven't heard the half of it. Taylor won second place in the Amnews contest at Amsouth and he got tickets to the SEC game this weekend in Atlanta and tickets to Fanfare and dinner. He won from voters voting on his photo of him, Aubie and Big Al holding the Amnews at the Lemonade stand. I know he will love fanfare and all the games and real players and I think he will enjoy the Georgia dome, I know I do. That is the way it should be. Comfy seats, cup holders and roof over head. I can handle football like that!
Taylor has been cracking me up today. He was horrible when I picked him up from school. I mean crazy. I wouldn't let him have a toy at Wal-mart and he was not allowed to get anything at Wal-mart. I knew he was mad, but he has to learn. I have been concerned with his right eye since he has been so snotty lately. He constantly rubs it and messes it with. Anyway, he started rubbing it right above his eye brow and going on and on about it. I asked him what was wrong and he said that I hurt his feelings and that is where his feelings are. I was laughing so hard.
Once we got home he went outside to play. He was digging and hurt his finger. He came in to get a band aid. He put it on like Finger stick Fay in NYC would have done. One around and one over the top. He started giggling and when I asked him what was so funny his reply was "I put it on the wrong finger". He is a nut!
We have no plans for tomorrow other than to hang out at home and look at more rain. I know we need rain, but enough is enough. Taylor has lost faith in is rain rain go away song.
Please pray that Taylor's scan is perfectly clear and NED. Pray for all the kids battling cancer. Pray for our troops as they fight for us. Pray for all those who are dealing with a lost loved one at the holiday season. Pray for Chuck or "Huck" as Taylor calls him as he prepares for back surgery. Pray for Miss Shannan as she prepares for her surgery.
November 28, 2004 Day +606 Day #304 off treatment
Today we slept late. We did that because Taylor was up a good 2 hours with an ear ache. I assumed it was coming with the nose and eyes running. I gave him some drops and Tylenol and he finally went back to sleep. He was crying and make a huge fuss. He was just a tugging and rubbing his left ear. I will make sure that Dr. B looks at that on Wednesday.
We did pretty much nothing until time to go to Gam maw and Paw Paw's. We had Thanksgiving over there a little late. Our little family has grown so much in the last few years that we have a lot of working out to do to get us all together. We had a lot of fun. We went from no kids to 4 in a short time. They were all 3 and under. It was fun to watch them play. Taylor is the oldest and poutiest. Logan is the youngest and thinks he can hang with the others. Logan ate like a horse. Taylor picked, but at least ate healthy food as he picked. They went out to play football for a while, but it was rather cold for the little ones, so they came back in. They were all happy to wonder around with an ornament in hand.
After dinner I heard those familiar bells of the ice cream truck. You know the one that we never saw in the heat of summer, but we have caught every weekend in November. Go figure. I tried to get everyone to talk real loud, but it was too late. Taylor had already heard it. All the kids even uncle Dugan had some ice cream. All of them had a few licks then were done so the dogs were happy. Logan liked Uncle Dugan's and was quite pleased to have Anna feed it to him.
It was soon apparent that 4 little ones and a few big ones needed naps. We all headed our separate ways with full bellies and new memories.
Both of our little guys were sound asleep once we got home. That long 3 mile drive just wore them out:) I started the job of wrapping gifts. It was a job indeed with the help of Logan. He was sitting on my rolled out paper. He didn't want to play with the un-opened roll I gave him, he wanted to unroll it all. He wanted to sit on the bigger wrapped items or rip bows off. I love to wrap and curl ribbon, but this year it was too hard. I still have tons to wrap, so maybe next time I sit to do it, I can get more into it. I will have to ship Taylor off to get some of his done.
Taylor woke up around 8:00 and got up. He took all my scraps even the ones I had planned to keep for smaller gifts. He took them to his room with some silk tape from the hospital and wrapped his toys and put them under his tree for his little kid. When we asked him about his little kid, he called him in for us to meet. He literally yelled, "Little Kid" and then held his hand out Vanna style as if to introduce him or her to us. This knew imaginary friend has no other name, but he does play with "it" a lot. Too funny!
He finally went to bed around 10:30. I was shocked that he went down so easily after that long nap. He did play very hard today. He has made no more mention of his ear, so I am not sure what that was about. Logan was up by the time Taylor went to sleep, but he zonked back out with a little bit of milk.
November 27, 2004 Day +605 Day #303 off treatment
More shopping. Jim and I took the kids to Gam maw's and we did a little more shopping. It finished up just about everyone and of course the boys got more. It is so hard to look in all those stores at all that stuff and not buy. We do plan to give some for b'days and some for Christmas and not give it all at once. However, it doesn't matter much since Logan's birthday is 9 days before Christmas and Taylor's is 25 days after.
We headed back home where we did more decorating. Jim put some of the lights outside. It was dark and wet so he didn't put any on the roof, but the banisters and the tree are done. We may not do the roof line since we now have a new train and outdoor tree to put out. We don't want to over do it. Taylor is so excited about his train. He wants to put his little wooden train outside too. That may take a fight to convince him not too, but we shall see.
We had a bad bulb in our new tree. I was none to happy when the top half didn't light up. I couldn't bare the thought of un decorating just to do it again, but we changed the bulb and it is fine. Thank goodness.
Taylor's eyes look better as far as goop goes, but they are still red. He is still snotty and coughing, but seems to feel fine. Logan now has goop again. He is still pulling on his ear, so I am not so sure that his antibiotic got rid of that infection. I am going to see if I can twist Dr. B's arm to check it out when we go Wednesday. I am also curious to see if Taylor has one. The nurse told me when I took Logan in last week that if they eyes and nose are goopy then almost always the ear is infected. My trusty flashlight that helps me self diagnose ear infections is dead. I will have to let Dr. Berkow do the diagnosing this time.
Please pray that Taylor is NED forever. Pray for him as he starts this next round of scans. Dec. 1st he will have a bone scan, check up and dental check up. I am nervous and not nervous. No matter how sure you are that all is okay there is always a dark cloud that looms over head around scan time. Pray that he is all clear with no questions asked. Pray that I get through it all with my sanity and I don't make Taylor crazy asking him if he is okay:)
November 26, 2004 Day +604 Day #302 off treatment
Whew, I am tired! Temp and I left home at 4:30Am. We did some damage in the stores until about 3:00Pm. I am done with all but 4 people. Yahoo!! Of course now I have to wrap it all. We just hung out and rested until about 6:00 when we met back up with Temperance and added all the guys both big and little and went to eat and Wal-mart.
Boy did we make a scene in Golden Rule. We apologize to all those who witnessed it:) Taylor and Christian both had fits over who knows what. We all know how little boys can be at times. Logan fell apart when I went to take Taylor to potty, that was loud, but the real fun came when he choked. He swallowed a fruit loop and it didn't go down right. He gagged and coughed and I beat and beat. I am certified for CPR and the Heimlich, but when it is your kid it all flies out of your head. It was not so bad to need those techniques, but it was pretty bad. He finally puked all in my hand. It was just a great trip to eat.
Logan went right to sleep once we got home. Taylor and Christian now had a second wind and were playing great together, but loud. Jim and Chris watched a movie and I don't think Temp and I got much out of it since we were so tired it wasn't funny. Finally at about midnight I was fast asleep in my warm bed.
November 25, 2004 Day +603 Day #301 off treatment
We went to Guh's house today. Taylor was rather mopey this morning. He didn't want to eat or much of anything else. He has such goop in his eyes it is awful. I of course had to get a case of the worries, but I am trying to treat this as a normal illness after all, Logan had yucky eyes a week ago. He was pitiful all the way to Guh's, but once we hit her driveway he was full of energy. He ate 4 slices of ham. He played with Drew and Blake downstairs. They taught him to play Uno. He was doing pretty good. He helped Guh put up her tree. Logan is so funny. He has heard "ahn, ahn" so many times that when he was at Guh's he pointed to her tree and said "ahn, ahn". He made a beeline for the tree this morning. It didn't have ornaments on it when he went to bed last night. He took a few ornaments off, but after that left it alone. He is in love with his own photo on the table. He points at it and talks to it all the time. Very cute!
We came home from Guh's and the boys crashed. I cleaned up some and made plans for shopping tomorrow. Taylor woke up at about 9:00, not good! He did fine though. I went to bed around 11:00 and he was tucked in his bed watching a movie. I don't know when he went to sleep, but he was quiet and didn't make a mess.
What a Thanksgiving. We were with family and friends and we had so very much to be thankful for. We are thankful for Taylor's health. We are thankful for all the Dr's and nurses that got him to NED status and of course the good Lord above. He is the ultimate healer! We are thankful for Logan and his health. All our family and friends both localy and internet friends. We love you all and wish you a Happy Thanksgiving.
November 24, 2004 Day +602 Day #300 off treatment
We Went to eat with daddy and to pick out a tree. As most of you probably remember, last year half our lights didn't work and we had a crazy looking tree. We got a pre-lit one this time. I hated doing the lights anyway, so that will save some of the hassle in taking it all down later.
We had to go get Taylor some more yellow triaminic. He is still goopy, but he looks a little better. When Jim gets home we are putting up the tree and Taylor wants to put on his Ruben shirt and watch the American Idol special. He is into Jingle Bells big time, so I hope they sing that.
Gam Maw and Paw Paw came over and got to witness the tree going up. Logan was more interested in the box than the tree. They both played in it for a long time. Taylor really liked putting ornaments on this year. He put them all on the same 3 limbs, but otherwise did great. He loved looking at them and would get so excited over characters and things.
I wish you all a wonderful Thanksgiving. Have safe travels and fill your tummies. Be sure to tell your family how thankful you are for them as well as tell God. We are certainly thankful this year for 2 healthy little boys. We are also thankful for all of you out there who have been with us through this ordeal.
November 23, 2004 Day +601 Day #299 off treatment
We hung out at home all day today. Good thing since it was so nasty outside. We got the house all cleaned up and ready to get out the Christmas decorations tomorrow night. Taylor is so ready.
Logan and Taylor were into everything today, but good. Both ate fairly well, but not their best. I left when Jim got home to do a facial. We had a great time playing in makeup.
Please pray that Taylor is NED forever. Pray that we never face cancer again. Pray for all our friends that are battling cancer too.
November 22, 2004 Day +600 Day #298 off treatment
Welcome back Monday. We had a nice Monday despite the oddness of it all. We went to school where Taylor made his teacher cry. No, he didn't moon her or spit at her anything like that. She called the kids up to let them say what they were thankful for this Thanksgiving. He said "you Miss Shannan". I am so glad that he loves her and is comfortable, but he is the only one who didn't say mommy. Hmmm. No, really I am not upset at that at all. I am glad that he is comfortable enough to tell her that. After school we went to get more pictures made. We went to the new Portrait Innovations and it was great. There prices are reasonable and you get the pictures the same day. We got some cute ones of both kids, but some really cute ones of Logan in his "baby's 1st Birthday" shirt. It was rather busy so we chose to come back and pick our pictures up rather than wait. It was pouring down rain and we had to park across the street, so by the time we got both boys loaded up and all I was drenched. I did not want to go home as it was 3:15. I would have had to turn around and come right back. We went to McDonald's and got some food and Logan was asleep, so I parked and Taylor and I ate and watched the cars drive thru all that rain for almost 2 hours. I went back to the picture place and called them to see if they could get my order ready and then let me run in as now both boys were asleep. The oh so kind lady brought them to me and I never got wet, again! I then headed to meet Jim and then headed to meet Temperance. It took my 25 minutes to merge onto I-65. I am not used to driving a 5 speed anymore and by the time I got there my left leg was like jelly. Anyway, we made it and had a great time. I didn't win a thing, but lucky Temperance did.
As we ended our night we went around the room and said what we were thankful for. What a cry we all had. We all had so much to share and it was so nice to sit with good Christian women who we could cry with then laugh with in the next breath. It was an awesome ending to our night. Temperance and I topped it off with a trip to Arby's and some good ole girl talk. We also planned our day after Thanksgiving shopping strategies. Fun is yet to be had!
November 21, 2004 Day +599 Day #297 off treatment
We went to church with Mary and Andy today to see Blake get baptized. Taylor liked the contemporary service with the band. He dropped his crayon and that got him all worked up and he couldn't sit still. He was quiet with exception to the one outburst of "I want to go home". He was very wiggly. He had seen the kids area when we went in and he wanted to go in real bad, but once he realized I wasn't staying he didn't want to go. We all went to eat at Cracker Barrel after church. Taylor ate half a grilled cheese and 2 corn bread muffins with grape jelly. I don't question it, I just praise him for eating. He stayed with Guh for a little while, while I went to get Logan and Jim. We then all went to Target and a few other places. Taylor fell asleep and Logan was a sour puss, so we headed home before we went to all the places we had set out for. We stopped and got some Arby's and didn't get Taylor anything thinking he was out for the night, but he woke up. I had to go the grocery store, so I took him with me and got him McDonald's on the way. I told him I was going to get nuggets since that would be easy to eat in a buggy, but he insisted on a cheeseburger. I got it and he ate EVERY bite. He likes them plane, but occasionally he likes ketchup, so I always ask how he wants it. When I said "do you want anything on it" his answer was "yeah, I want some meat on it" Smarty pants!
Please pray that Taylor is NED and will be forever. Pray for all our friends that are battling cancer and other diseases. Remember the families that have lost loved ones as we enter into the holiday season. Remember our troops and the families that are missing them.
November 20, 2004 Day +598 Day #296 off treatment
How is everyone doing today on this the biggest football day in the state of Alabama. We are okay. Taylor had a tad bit of a fever when he woke up. He took some Tylenol and is fine now. It was only 100.6 not quite to the magic number. I did not call clinic as I am sure it is viral in nature as always. He has a nose full of green snot that is much worse than it was yesterday. He did say his head hurt but again I am assuming it is all that snot in his head. I do worry that the one time I don't call in to clinic to report fever will be the time I need to. However, we do this fever thing so often that I can't help but be confident that he is fine. He never acted like he felt bad. He jumped out of bed and got dressed and headed to the dump. He has been sword fighting and ate a few tator tots. He hasn't eaten good, but that is not all that unusual for him. He is now digging in the candy bowl.
Logan is doing fine this morning. He has eaten and played. He seems to be sleepier than normal, but I think he just didn't get his nap out this morning. He is playing fine and ate good.
We watched the game at Gam maw and Paw Paw's house. Taylor was funny because he wasn't paying any attention to the game, but he would be yelling things that he had heard us say. "Run Auburn", "Touchdown" "What are you doing" etc. Logan had the mess scared out of him a few times when someone yelled or cheered. It was funny. He lined up all the dining room chairs and made it a train. We all had to ride the "Folar Exfress":)
We left after the game and both boys crashed and we were close behind them.
November 19, 2004 Day +597 Day #295 off treatment
We went to school today. Taylor's teacher was back and seemed to be feeling well. Taylor showed her his scar from his tumor resection surgery. He was full of energy every time I peeked in on him. I was alone today, but my kids were great.
We got home and hung out. Logan took a nap and Taylor played. He had another date with Ghen Ghen. Uncle Bob is going to get jealous if they keep this up. They went to see Sponge Bob. He loves this movie going thing. He got home around 8:00, but Jim and I were not here. We went out to do some Christmas shopping. We are done with the kids. Toys R Us was out of what we wanted to get Logan, so we went to Wal-mart and there it was and cheaper. Jim had a good point. The bad thing about being done now is that we have a month to be eager to give it to them. We have some things that Taylor is going to LOVE. I think Logan will like what he is getting, but Taylor will too. That could spell war!
I think we are going to have Logan's Birthday at Dec. 18th. Can you believe it is time to plan a birthday for him. Seems like I just brought him home in a stocking.
Logan had a big time last night. Uncle Dugan came over to help Gam maw out. Logan liked that. He was so funny. We have a bird that sings Rockin' Robin and rocks. Dugan was holding Logan's shoulders and rocking him. He stopped and played the song again thinking that Logan would rock on his own. Well, smarty grabbed the bird by the shoulder and rocked it like Dugan had done him. It was cute!
November 18, 2004 Day +596 Day #294 off treatment
Today started out as a stay at home day. However, Taylor decided that he needed some Olive Garden and I decided to get some Christmas shopping done. Taylor ate great once we got there. He couldn't get the fact that we couldn't go until Jim got his lunch hour. He was ready to go then. We went to the bank first. I wasn't going to try and explain all my banking needs to a 3 year old, so when he asked why we went there I said to get money to eat with. He didn't want to go to the bank, so he said that Jim could pay. I told him that he didn't have any money either and he said "well, he has cards". Too smart!! He ate good as he always does there. After we left there we went to Big Lots and had a good ole time.
We went out to eat with Gam maw and Paw Paw. Taylor ate good again. Logan was a bit grumpy, but it was a little late for him. He ate a little bit of ham, I guess he is coming around to meat. He has had a few bottles of real milk too. He just doesn't like it cold, he likes it warmed up. Picky!
Once we got home both boys had a bath and we all went to bed. Nothing big to share, but isn't that the best update, the one with just normalcy.
November 17, 2004 Day +595 Day #293 off treatment
Today we went to school. Taylor was in rare form. He is definitely comfortable there now. He danced like a nut at music time. His class even did a little song and dance for my class and was right in there doing every step and even making up a few. He had a few issues. We have to give them 5 minutes at a time on a bike then make them swap. When it was his turn to get off he laid on the ground and held onto the back of the bike so the other kid couldn't go. I finally got him up and low and behold he somehow got the bike back. The next time he got off I had to pull his hands off, but he caught it with his feet. I had to carry him across the gym with it in his feet and let another teacher take the bike. He then walked the lines of them gym with his arms crossed and his lip poked out until he saw that the bike was empty again. I do not know if he would have tried all of that with is teachers or if it was because I was in the room. He normally is not in the gym with us, but his teachers were out. Please say a prayer for Miss Shannan on of his teachers. She went to see an Oncologist yesterday. Pray that she only has a cyst and no cancer. She will have surgery on Dec. 1st. Pray that those goes smoothly and she heals quickly.
We went to Wal-mart after school and got Logan's birthday present, it was on sale, but only yesterday. We then went to Nana's. Every time we head to Hoover he thinks he has to go to Nana's. He needed his pants changed anyway, so we went. Once again he pooped at school and didn't tell anyone to wipe him. Logan got a nap then we headed home. Guh, Pippy, and Pop came over. Taylor showed off his sword fighting skill and Logan showed off his walking attempts. He can walk with a push toy or around the furniture, but he has not tried to take any steps alone. Nana got him down and looked at his teeth or lack of. He has had just those bottom teeth since July. He is getting all four front ones at once. Fun! No, I didn't even know so I guess it isn't bothering him. When we went to the Dr. last Friday Dr. P said it looked like they were trying to come down and I guess he was right. You can see the little white spots peering through. It looks like he is going to get the 2 on the sides before the front teeth. He and Taylor can both ask for their 2 front teeth for Christmas:) He does not let the lack of teeth slow his eating down. He ate a about half a small can of English Peas at about 4:30. He soon found Taylor's uneaten plate and ate all the corn, potatoes and 2 chicken nuggets. We were breaking it up, but got tired of it and gave him the whole thing and he ate it with no problems. He does love to eat! That is the only meat he has ever eaten. He never even liked baby food meats. Now if we can get him to drink out of a cup and wear shoes! He can drink out of a cup with tea in it just fine. If you put milk or juice in it he seems to "forget" how to do it.
Please pray that Taylor is NED forever. Pray that Logan never faces anything like Taylor has. Pray for Miss Shannan and her family. Pray for all the kids who are fighting this fight. Pray for Jay, a teenager we met in NYC, who also has NB. He is not doing real well right now. www.caringbridge.org/md/jaybarnett
November 16, 2004 Day +594 Day #292 off treatment
Today we went to the Galleria to see Santa. He was on a lunch break when we got there, so we had some lunch too. Taylor ran into a friend from school and they took a spin on the carrousel. He rode a one antlered reindeer and thought it was funny that he didn't have two like all the others. Shew, that could have been a disaster if he had been in a bad mood. Santa finally came back at 2:00 and we stood on line. We were only number 2 in line, but the wait still was too much for 2 little fellows. As soon as it was our turn Taylor said "I want to go home". He didn't cry, but you could tell he was a little unsure about the jolly old guy. Logan could have cared less, he just wanted that Mickey Mouse puppet the girl was using to make him smile. We got an okay shot, Taylor was back to his old tricks. He was too busy looking to see if Logan was smiling to smile himself. After the mall we headed towards home. Taylor is down stairs playing in the all clean playroom that I am sure will not be very clean once he is done. Logan is in his room playing with his door.
We ran into Aubie's mom in the galleria. It was so nice to see her and to know that they still check in on us. Taylor didn't giver her the time of day while we were talking, but in the car he quizzed me all about her and where Aubie was.
We have no plans for the evening other than to hang out. Logan and Taylor loved playing downstairs last night, so we will probably do that again. Please pray that Taylor is NED forever. Pray that Logan never faces anything like Taylor has. Pray for all our friends that battle this everyday.
November 15, 2004 Day +593 Day #291 off treatment
Back to school. Taylor wore his new boots to school. He was in a strange mood. Well, he was normal, but different than how he acts at school. He told Joy no when she told him to line up and told Christi no when she told him to come do art. When the line left him he of course jumped in. I have to "pretend" to leave him often when he isn't ready to go, so I am used to it. I guess he is now comfortable enough with them all to act like himself. I hope that doesn't mean that he is about to start getting in trouble. He normally sits on a riding toy right at the teachers feet, but Friday I went to tell his teacher something and he was way at the other end of the gym playing with a group of boys.
Taylor is playing in his room and Logan is napping. We have no plans for tonight, so I guess that is it for this update. Please pray that Taylor is NED forever. Pray for all our other friends that fight this battle. Pray for the families who have lost a loved one or newly diagnosed. Pray for our troops.
November 14, 2004 Day +592 Day #290 off treatment
Today was picture day. We got up and got ready and went to Guh's and got Taylor ready. We went to Target and had family photos and Christmas photos done for Christmas. They will be back Nov. 30th. They are not as good as last years, but they are good. They had the same back drops as last year except one, so we did them all on that one back drop and that was a little disappointing, but oh well. Logan is not the easiest kid, he isn't screaming he just likes to lunge off the table, so we had to stay on top of him and he always looks down right when you snap the picture. We still got some good ones. Taylor did great. We usually have to fight him to not look at Logan and focus on the camera, but today he did it. He got an Incredibles car for doing so well. He has a very hard time smiling on cue he has to be truly laughing to smile good, so all his photos that are a true smile he has his mouth wide open.
We went to the Galleria after Target. Taylor didn't get to ride the carrousel the other day since they were putting the reindeer on it. He rode it today after he made a "hap hap box" as he calls it. That would be a happy plate to us. He has to be correct and say happy box or bowl etc. He had had a happy meal. Santa is already at the mall. We didn't see him today, but we are going to go back one day this week and see him before the lines grow long around him.
We stopped by Gam maw and Paw Paw's for a while. Taylor found some hunting boots that were for Christmas, but he has them now. He loves them. They are high top "real" boots as he calls them. We had to swing by Pippy's to show him the boots and raid his tackle box for plastic worms. Taylor thinks he is fishing when he throws the worms on the ground and uses his toy fishing pole to catch them. He doesn't realize they are the bate.
On the way home Logan fell asleep, but woke up for dinner. Taylor fell asleep and stayed asleep. I finally woke him up and he crawled back in bed, but he got up after a bit and was up late!! He ate yet another happy meal. He finally went to sleep after some coaxing. He has a new job chart that he gets stickers for doing the things listed .He gets prizes at the end of the week based on the number of stickers. He has being doing fair. It helps to get him to eat and clean up, but he still isn't real hyped on the following directions or being nice to Logan categories.
November 13, 2004 Day +591 Day #289 off treatment
Today has been the best day. Taylor did not want to get up. He was still up at 12:30 last night. I wasn't, but he woke me up to tell me that he lost the top to a marker. I told him to get in bed, but I have no idea if he did because I was back asleep in 2 seconds. Once I finally got him up and out the door he was fine. We went to Andrew and Abby's birthday party. He did GREAT!! I just knew he would be wrapped around my legs the entire time, but he wasn't. He went right to Andrew's room and followed the boys everywhere they went even outside. He had so much fun. I had to drag him into the kitchen to do cake and presents. He wanted to play in Andrew's room. He didn't want to leave when it was time to go. Once we got in the car he was sick. I have now decided that he is "sick" when he is not getting his way. We went home and got Lo Lo and Guh and we went to IHOP to eat and to Babies R Us. By the time we did that both boys were in a bad mood, so we headed home. They both fell asleep and stayed asleep once we were home. Logan got up and ate dinner and I had to wake Taylor up at about 5:15. We went to Milo's and the Dollar Store. Taylor was in a much better mood, so I think his problem all day was just lack of sleep. We all headed back to our house and packed Taylor up and he and Guh went to her house.
Jim had gone to the Auburn game and he got home around 8:00. Logan was having no part in going to sleep. I rocked and rocked and rocked. I finally just let him dry himself to sleep. Jim got an ESPN game day hard hat for Taylor. He is going to be so excited. It has Home Depot on it and he is all about Home Depot and his Tony Stewart racing outfit.
November 12, 2004 Day +590 Day #288 off treatment
Today we went to school then to the Dr. We were very early, but they took us on back and we were on our way out by the time our actual appointment time rolled around. Logan does have an ear infection in his left ear. We dropped off a prescription for Augmenton and Jim will pick it up on his way home. We will also be putting Erythramiacin in his eyes. We already had that since he had blocked tear ducts. Taylor got his Flu shot. He was very big too. He did cry, but none of that unnecessary screaming and thrashing that we normally get. We had a little confusion. Little babies have to wait 6 months between the 1st and last HepB shot, but that is not how Taylor's re-immunizations were to go. He actually got that shot last month right on schedule, but the nurse did not write it down and Dr. P wanted to give it to today even though it was 7 days until his 6 month mark hit. I had to explain that he already had it and it didn't matter about the 6 month mark. He understood all that he is just on a pediatrician mindset not transplant mindset. We got it all straight. Taylor is indeed done until his titers allow him to get the MMR shot.
We have a busy weekend planned. Taylor is going to see The Polar Express tonight with Ghen Ghen and Bob. Tomorrow we are going to a birthday party for some friends at school then Taylor is spending the night with Guh. Sunday Taylor will go to church with Guh then we will go get our family pictures done and Christmas pictures done. Be sure to read about all that excitement and sign the guestbook.
Taylor got a package in the mail today. Shrek toothpaste!!! Thank you Nena Beth and family!!!!
November 11, 2004 Day +589 Day #287 off treatment
I hope you all had a nice day especially all the veterans. It was a rainy, yucky day, but it didn't stop all the people from getting out and filling up the stores. It was like the day after Thanksgiving. We went to the Galleria and it took about 30 minutes to get Taylor a happy meal from McDonald's. The entire time that I did that Jim was circling the food court looking for a table. We finally left and Taylor ate in the car and we got something outside the mall. We went to Toys R Us and it was swamped too. We got a little shopping done. We got Taylor that V-tech video game thing. He played with it a bit while we were there and Jim snuck off to get it. We got the Shrek doll. We had enough to get the Donkey too, but you had to have it rung up separate and we didn't want to go through all that, so we didn't get Donkey.
Logan is not feeling well at all, so we came back home. He has a cold or sinus infection and the poor baby has snot from head to toe and it is even oozing out his eyes. He has eaten fine, but you can tell he is not up to par. He took about a 2 hour nap and he seemed to feel better. He looked much better after a bath:) We have an appointment for him tomorrow with Dr. P.
We will go to see Dr. Petelos tomorrow and get Lo Lo checked out and then get Taylor's second dose of Flu vaccine. I called the office today just to see what dosage of Triaminic Logan could have and they want to see him. They said that the way babies are all put together that if the eyes and nose are runny then the ears are probably infected. I hope not. Last Friday when we were at the hospital with Taylor Dr. H said we all had sinus issues, so I am guessing that is all it is, but he could still have an ear infection too. I don't mind going, Dr. P is great to check out Taylor when we are there and I am always glad to have him given an all clear.
This will only be funny to those of you who know Dr. Berkow, but Taylor cracked us up the other night. We were watching Saturday Night Live and it was an older episode and Paul Simon was on and Taylor said "hey, that's Dr. Berpow". It was so funny and it did look like him. I can't wait to tell him about it. He will get a kick out of that.
We painted Thanksgiving shirts tonight. It was a mess. We made feathers out of Taylor's hands and a Turkey body out of his feet. We used Logan's feet for it all since he kept balling his hands up. They turned out cute even though Logan's looks like nothing.
Thanks to all of you who still follow our story. Please sign the guestbook. Pray that Taylor is NED forever. Pray for all our friends. Pray for Carson. She finally came home, but has only got use of one hand and no use of her legs. She has a tumor sitting where Parkinson's originates and it has her tremoring very bad, so she has a lot of meds helping her stop the tremors so she can sleep, but it has limited her ability to use her arms and legs. Pray she can come out of this and beat this beast. Pray for all our other cancer friends. Pray for Morgan as she and her family gear up to go back to NYC.
November 10, 2004 Day +588 Day #286 off treatment
Taylor got a pleasant surprise last night. Gam maw and Paw Paw called and came and got him to spend the night. He got to play hookie today. I haven't talked to them, but Jim did earlier and he was doing fine and in a good mood. I am happy to say there has been no more tummy aches and several poops. I think that we have jumped another hurdle in this race and cleared it. I hate that we have to live in this constant fear, but at the same time I am so happy that he is okay. I know that I will freak out a million more times, but I truly believe that Taylor has won this battle.
I think that Lo Lo is trying to get sick now. He is not wanting his dinner, but he is drinking plenty of formula. He has played well, but gets mad at doors that wont open or toys that don't do what he wants them to do. He also has decided to crawl on his hands and knees but has his head down and he bumps into things. He hit the wall and the TV hard and got really upset.
Tomorrow Jim is off and we will get out and about with the kids. Taylor is looking forward to it. We need to get Logan some shoes. All of Taylor's old shoes are too big and everyone thought that Logan had big feet, obviously not.
Please pray that Taylor is NED forever. Pray for all of our friends that are battling cancer. Pray for our troops and remember all our veterans.
November 9, 2004 Day +587 Day #285 off treatment
Taylor, Logan and I have had a nice day. We have cleaned up some and done some laundry and played. Taylor is into fixing things right now and we have used his car rug as the interstate with the big hole in it. We go past that hole so often on I-65 that he is really into all the machinery that is out there. He has read a lot today and watched a little TV. Logan has driven us nuts. He is into everything. After dinner we are off to Wal-mart to buy cabinet locks. Most of our cabinets have them, but there are a few that don't. He gets all of Taylor's bowls and spoons out and my pots and pans. It makes me nuts. Otherwise he has been good. Taylor has been good too other than yelling at Logan. He helped clean his room up and did it with less complaining than normal. He has told me I make him sad or he is sick and tired of me on several occasions. My favorite is "that's not fair".
Taylor still has a very snotty nose and a cough, but he seems to be feeling fine. He has been a wild man today, jumping off things and over things. He ate about 6 pecan swirls and most of his noodles at lunch. It was a lot of junk, but more food than he has eaten than last few days. Isn't it funny how one day you are worrying like crazy and the next all is forgotten. I am not complaining that he is feeling so great. However, this beast is so tricky it is scary to not know what is really going on in his little body. I am sure this time it is just a cold like usual and I pray that all the times in the future that is all it is too. I am sure this winter will be full of fever and illness now that we are back in school.
Please pray for all of our friends that are fighting this battle. Pray that those who have reached NED or remission will stay that way and others will reach it soon. Pray for those that can not be cured and their families. Pray for those who have lost their loved ones. Pray for our troops. Pray that Taylor is NED forever and never again has to face cancer. Pray that Logan never faces it either. Pray for our troops and the family left behind as they fight for us and our country. Pray for my fellow Mary Kay consultant who lost her mom last week and another whose house burnt.
November 8, 2004 Day +586 Day #284 off treatment
Taylor had a little trouble at school. Not all of it was his fault okay, yes it was. I don't know if he is afraid to ask for help or to stubborn or what, but he didn't have his pants snapped after he pottied and his pants kept falling down. At one point they were around his knees so he bent over and shook his booty at everyone. He was line leader today, but luckily he had this little issue after he had lead the class everywhere they needed to go or he would have lost his job.
We started 9-1 today rather than 9:30-1:30 and it messed Logan up. He is so tired. He will get used to it though. He took a nap at school, but that was due to the fact that he had been up since 5:00 this morning.
I heard today that a friend from Children's is not doing well. Carson had a liver transplant as a baby and then got cancer this year. Her mom is a nurse there and came to visit us often. Please keep Carson and CJ in your prayers as they fight this fight. Please keep all our cancer kids in your prayers.
Taylor has had a good day. From what I could see of his lunch he ate pretty good and from the antics he pulled in class he must be feeling fine. Please pray that he is fine and that he is NED forever.
November 7, 2004 Day +585 Day #283 off treatment
Logan and I went to church this morning. Taylor and Ca Ca cleaned out the garage. Jim has been parking outside this summer and all of the outside toys were in his spot, but not anymore. I learned today that our pastors son passed away. Please keep the family in your prayers. It was all Saints Sunday. I put the names of all our cancer friends that have gone to Heaven on the Alter. They were all remember by our entire church yesterday.
We came home and got the guys and went to the grocery store. Guh came over to play for a while. Taylor was in a great mood all day. He ate fair with a little coaxing. He played outside all day. He is fearless. Our driveway is a hill and he will go up it on his bike as far as his little legs will allow and then fly down as fast as he can. It makes me nervous, but he does have a bike helmet and platelets:)
Taylor didn't want to come in, but he did and made some cookies and played. He was in a fine mood. We caught him on several occasions poking his belly and smooshing it. We do not know if this is a game or just something he does without knowing it or if it hurts. I told him he would have to go to the Dr. if his tummy hurt to see if he was just playing and now he wont tell me. He will move his hands if I ask if it hurts, so I think I have hindered us more by giving him that info. I thought it would be easier when he was older, but it is harder. We never know if he is for real or just playing or wanting attention. He tends to be "sick" when he is mad, sad, or sleepy. I also do not help with all my over analization of everything. I have to make everything huge and try to come up with a million reasons why or why not something is happening. I hope this is not the life we will live forever.
Okay, enough of my rambling. I ask that you please pray for Rev. Scales and Twink. Please pray that Taylor has no tummy aches and if he does it is not cancer related. Pray that he is NED forever. Pray for all the other kids fighting. Pray that Logan never faces anything like it. Pray for our troops.
November 6, 2004 Day +584 Day #282 off treatment
Taylor woke up GRUMPY! He went outside and rode his bike for a while and seemed okay. He went with me, Ghen Ghen and Gam maw to Christmas Village. He wanted macaroni and we got it, but he didn't eat it. He had about half a bowl of oatmeal for breakfast. He was a good boy today. He got in trouble for dragging his feet and pushing his feet backwards if he wanted to go back and look at something. He didn't realize that other people and tons of them were walking behind us. Otherwise he was good. He ate a few gold fish and a few fries, but that is it.
We were waiting in line to buy some lunch and I saw this cute little baby all decked out Christmas clothes and was so impressed with how darn cute he was. I looked up at his mom and I be darned if it wasn't Miss Rhonda our bestest nurse friend. Taylor was excited to see her. He of course hardly speaks to her when she is there, but once she is gone he goes on and on about her.
Taylor fell asleep on the way home. He slept about 2 hours and got up around 7:00. He was even grumpier than this morning. I was feeding Logan his bottle when Taylor woke up and he lost all interest in it so I put him in his bed. He cried and cried and by the time I got Taylor settled Logan had gone to sleep. I tried to give him his milk anyway, but he wouldn't take it. I guess that means we will be up at 3:00 again:) Taylor continued to be grumpy, but eventually came out of it. He ate a few pieces of ham and cheese and about half a chocolate chip cookie after much coaxing and game playing. He did play a lot and rough. He painted with water colors for about an hour. He seems to feel fine. He told us his tummy hurt, but that was during the grumpy state. I want to believe that it is all in his head and just a ploy when he is ticked off, but it is hard to shrug things off once you have been through all that we have. Maybe one day we will be able to do that, but I doubt it.
Taylor got a tackle box today and he has played with that a good bit. We had to make paper fish to put on the stringer that came with it. He put all his chairs in a circle and put the big boxing gloves in the middle and made a camp fire. What an imagination! Logan got a camo chair made out of PVC pipe. I thought Taylor would try to take it, but luckily for me it was uncomfortable and he didn't want it. Yeah, Logan finally gets something of course that chair did make it into the campfire.
We have all had a good day. Ca Ca and Lo Lo had some bonding time. Logan is so silly. He has been into everything as usual. Once we got home Taylor ate a little after he woke up and then played some. He has off and on said he had a tummy ache. I am beginning to wonder if it isn't an attention thing. He usually says it when he is sad or mad. I know it hurt at 3:30 in the morning, but does it really hurt every time he says it does. This is such a hard age to try and figure out and add cancer to it and it just plain stinks!
November 5, 2004 Day +583 Day #281 off treatment
Taylor thought it was time to add some excitement into our lives. He woke up at about 3:15 this morning and wanted his night night. I gave it to him and got back in bed. A few minutes later I heard him moaning. I went to his room to see what was wrong and he was balled up saying his tummy hurt and he was cold. I could hear his teeth chattering. I brought him into our bed and he sat in my lap curled up for a long time. He was shivering and we could see and feel him contract his tummy when it hurt. I was absolutely petrified!!! I called the on call nurse. That is always fun, the operator always asks "is your child a cancer patient"? No, I just thought it would be fun to call at 3AM. I guess someone would think it was funny. Anyway, Bethany was on call. We now know all the nurses and practitioners, but we are closer to some than others and Bethany is one of our favorites, so I was so glad to get her. Sorry I woke you up, Bethany!! Anyway, we were concerned so we decided to go to the ER. Well, after talking about it we changed our minds. We didn't want to sit there for hours and see people that would have to call the on call people to see what to do, so we just waited until clinic opened and went to see the people we know. Of course by the time we got there his fever was down to 96.3 and he was running like a wild Indian. We saw Dr. Howard. He is one of my all time favorites. He is super at explaining things. He wasn't concerned, he thinks it is viral and it is just draining into his tummy. I must say I was not too happy with that answer. He was in severe pain and I don't think it is from some drainage, but I am not the Dr. We did a chest x-ray that was clear and labs were slightly elevated, so that indicates viral. I point blank told him I was looney and wanted to know how to feel his belly and what to feel for. He taught me. Doesn't make me feel any better now that I am home and rubbing on a belly that he still says hurts, but At least I know. He also brought me back to the X-ray room and explained the x-ray rather than just saying it was okay. I liked that or course that will probably come back to haunt me when I try to play amateur radiologist and try to read the next x-ray he has:) By the time we left he had colored and glued with the volunteers and gave the picture to the nurse staff. He had eaten Logan's snacks and gotten a camo teddy bear named Hero from the toy chest.
We went to eat with Guh who had gone with us to watch Logan. Taylor ate fair, but not as good as the day before and not good for someone who had only had a few animal crackers all day long. He had lost some weight too, he was 35 last month and 33.2 this month. I don't know how. The Hershey kisses alone should have pushed him up a few pounds. I probably gained them for him. We went back to Guh's house and played for a while. We had to leave at 3:00 so that we were home by the time Ghen Ghen came to get him to go see "The Incredibles". We met up with them after the movie to take him home while they went to fix Uncle Bob's flat tire. Taylor was tired, but seemed to be feeling fine. He ate all his nuggets and fries and tons of pop corn. He got some fight things that he had been wanting. To the rest of us that don't speak Taylor language that is blow up boxing gloves. He is so funny with them.
Please pray that he is okay. Pray that whatever has his belly hurting him is not cancer related. Pray that we (ME) can deal with this knew issue and remain sane and Faithful to the ultimate healer. Often times it is hard not to let human nature take over and try to fix it or find the answer ourselves. Pray for all of our friends that are fighting cancer and all our troops.
November 4, 2004 Day +582 Day #280 off treatment
Last night we had a blast. We left as soon as Jim got home with intentions of eating out, well we did eat out just in the car:) We were not even thinking about UAB having a game as well as the big hole in the interstate. We got there in plenty of time, but I don't think we would have had we eaten inside somewhere. We were right on the ice, but we were dressed for it this year. Taylor loved it. He was a little older so he wasn't scared of some of the smoke and fire effects like last year. He also enjoyed the different stories. This year Mickey and Minnie are on vacation in London and Hawaii and we saw Peter Pan, 101 Dalmations, Lilo and Stitch and Little Mermaid. Taylor didn't know Little Mermaid, but he liked it. He didn't 101 Dalmations either, but the costumes were made to look like a ton of dogs and it was funny, so he still enjoyed it. He fell asleep on the way there and didn't eat his dinner so he ate a whole tub of pop corn, but still ate his food that was left in the car once we were heading home. PIG!
He bought a Peter Pan sword. Those marketing folks are smart. The Peter Pan sword doesn't do anything and was smaller and a dollar more than the big strobe light sword. However, there was no convincing him that the big one was cooler, so we have a more expensive, do nothing sword. He has played with it all day though, so I guess it is okay. He danced and sang and really had a good time. He was really excited when 3 friends from school were in line in front of us going in. He thought it was cool to see someone he knew outside of school or the hospital for that matter.
He has cracked us up on several occasions this week. I was singing along last night right in his ear. I was being silly and he told me to "close my mouth up". He also decided not to take Bozo or night night to school yesterday. When I asked him he said "nope, I made up my mind to leave it here". I don't know where he comes up with this stuff.
As for Mr. Logan, he is full of energy for getting in trouble:) They get along for the most part, but Taylor still just can not share and gets in trouble for yelling at Logan or pushing him.
As for today, we met Guh for lunch just like every Thursday. It was just us since Nay Nay is in NYC. We tried to tell her not to go:) Kidding all you NYC folks. We really did enjoy the city just not the reason behind the visits. I know she is having fun. Speaking of it is time for Morgan and Carter to start getting ready to head back, so pray that they have a safe trip. Pray that Morgan has a good 2 weeks of 3F8 and that Carter has great scan results and 3F8 goes smooth. Pray that they all have an enjoyable Thanksgiving in NYC.
We went shopping for a little bit after we ate. All we got was a little cat that Taylor picked out. No, not a real one. Just a little figurine. I have no idea why he wanted that, but that is what he got. He also got a little sun catcher to paint. We spent a whopping $2. Not to shabby for a few hours of shopping with 2 kids and 2 crazy balloons. That is a whole other story that we will save for another day. Lets just say it ain't easy to drive with 2 huge blue balloons flying all over the place.
November 3, 2004 Day +581 Day #279 off treatment
Today we were back to school. It was a good day inside too bad it was so ugly outside. Taylor did great as did Logan. He is now napping, that is the good thing about Monday, Wednesday and Friday for me. He is too nosy to sleep at school so he naps good those days.
We are going to Disney on Ice tonight. Taylor is excited to see Mickey, but I am afraid he may think we are going to Disney World rather than the BJCC! That could spell trouble. No, I don't think so. I think he remembers going last year and kind of knows what to expect. He is sitting in the floor eating Hershey kisses and watching Blues Clues. I think he is going to turn into a Hershey Kiss. That is his knew favorite. That is the bad part about having the "just eat and gain your weight back" policy. He is eating all that candy and when dinner rolls around he will be full. However, he is getting some calories.
Please pray that he is NED forever. Pray for all his cancer friends. Pray for his teacher who has to have a mass checked out. Pray she is fine and it is nothing to worry about. Pray for our troops over seas and their families that are left without them.
November 2, 2004 Day +580 Day #278 off treatment
Today we have had some excitement. Well, I guess you could call it that. Taylor was not blessed with the ability to share. It is something that has come back to bite him in the butt today. He keeps his bedroom door closed so that Logan will stay out. I only allow this because there is so much that Logan doesn't need or could get hurt on in there. Taylor has a bad habit of yelling very loud when Logan gets within 2 feet of him or looks like he is thinking about coming his way. He gets in trouble often for this. He also has a bad habit of locking his bedroom door, he gets in trouble for this as well. Well, today it caught up with him. He locked his door while he was inside, I didn't know this at the time, but didn't shut the door all the way. When he was ready to come out he just opened it without thinking that he locked it and then shut it behind him and this time he shut it all the way. He got in trouble a little while later for not allowing Logan to play with a toy that is Taylor's but is also a baby toy that should be Logan's anyway, so I sent him to his room. He came back crying that he couldn't open the door. I got on to him for locking the door, but he punished himself because not only could he not get to his toys but Bozo, Night Night and his pillow were on his bed. He cried and cried. I didn't let him know that we could get in until he had had some time to think about it. I had to call Jim to find out where the key to the door was and we got the door opened, but I think he got the message.
We didn't do anything today other than play around the house. Taylor was a little upset about the weather. He didn't get to go outside yesterday since his eyes were dilated. We spent all day hearing "are my eyes still big"? I told him we would go to the park today to make up for having to stay inside and now it is raining. I felt awful. He didn't really mention not going to the park, but his first question once he woke up was "are my eyes big"? Poor guy! I guess when it stops raining it will be too cold to go out. Maybe not.
I went to Gam maw's sorority meeting with her and got a Christmas purse. If you know me at all, you know I am a purse nut. It was late when we got home, but the Taylor was still awake although he was in bed. I got lunches and clothes laid out then went to bed.
November 1, 2004 Day +579 Day #277 off treatment
Today is November 1st. Can you believe it? What a fast year this has been. I can't believe that it is already almost Christmas, Logan's first birthday, Taylor's 4th birthday, the 1 year mark of Taylor finishing 3F8. Wow! I know that all of you have a lot of things that have happened too.
As you all know, I love to look back and see what was going on in our lives a year ago. I just did that and it was similar. We had gone out with Chris, Temp and Christian which we did the other night. We were gearing up for Disney on Ice which we are going to again this Wednesday. A few differences were trying to get Taylor a dentist appointment for his rotten teeth and getting out baby clothes and preparing for the arrival of our unborn baby boy. In fact we named him this week a year ago because Temp and I went to Christmas Village and I wanted to be able to personalize things. Who am I going to go with this year since she left me and went back to work? Anyway, there is a huge difference from 2 years ago, thank God. This time 2 years ago we were inpatient with Neutrapenia after the first round of chemo. Taylor was sick and so was I. I had orders to stay away for 4 days so that I didn't give him what I had. I was miserable from missing him and worrying about him. He also lost all his hair while I was away. That was the worst part of the treatment for me, it made it all real and final. Anyway, just thought I would share how far we have come. I know you all know that, but I like to look back and praise the Lord for the wonderful differences in the years.
Today we went to see Dr. Elsas to have Taylor's eyes checked out. Ca Ca had to go with us since I knew that I couldn't handle Logan and convince Taylor to cooperate. He did very good though. He was seen first by a nurse who examined him and got him as seeing 20/30 with the left eye a little worse than the right. He injured his left eye before he was sick and that eye had more cancer around it, but we don't know if either has anything to do with his vision. He was pumped about looking at the photos of cakes and tractors. She put some drops to dilate his eyes and he didn't care for that very much, but he did okay. We played a little while and then the Dr. came in. He checked a few things then did the same test that she did with the slides. He was tired and aggravated by then and we really feel that he just didn't cooperate to the fullest extent. The Dr. had him at 20/60, but he doesn't think it is accurate. He did say that bone marrow transplants will cause dry eyes and could cause him problems later on and when you add the 6 rounds of Accutane to that he will probably really have dry eye issues. He is a little far sided, but most kids are and he is not any more so than other kids. He should grow out of that. He may have eye issues later, but Jim wears contacts and it could stem from that or chemo or no problems at all. We will go back in 6 months just to be sure that he was not cooperating and that his eyes are okay, but he is not concerned with it at all. He did put some glowing drops in to be sure that he didn't have any dryness or tears or scratches from being dry, but he was fine. He was really ticked off about the thick yellow goop, and his whole face was yellow all day, but he cooperated. He had had that in his eyes before. When he was about 18 months old he hurt his left eye in a fall and we had to go to the hospital and they put those drops in his eye to be sure it wasn't cut or anything. We took him to Chuck E. Cheese that night and they stamp you when you go in and you have to go out under a black light to be sure everyone in the family has the same number. Well his eye lit up and all the spots it had dripped. No one said anything, but they looked at out "super natural" baby with funny looks. I did talk to Dr. Elsas about his eyes getting black all the time. I have guessed it was allergies, but still worry about it. I feel better knowing it has a medical term but is referred to as "allergy shiners". He said it was very common in allergy prone people and especially kids since the skin under their eyes is so thin.
Please pray that Taylor continues to beat this disease and that he is NED forever. Thank God for getting him through this with so few side effects. I hate that he has silver teeth, but that will all be over with in a few years. He could have had permanent hearing or vision loss or much worse side effects. Praise God he was spared those things. Pray for all our other friends battling cancer. Pray that Logan never faces anything like it. Pray for our troops.
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October 31, 2004 Day +578 Day #276 off treatment
Happy Halloween! We hung out at home today with exception to a trip to the pharmacy for Taylor's Singulair. Guh came over for a visit to see the boys before they went to the church carnival. We left around 5:00 and this time we left with Blue and Tony Stewart, it is just too hot for the Tigger outfit. Taylor had a blast at the carnival. He jumped right in the moonwalk full of kids he didn't know. He is coming out of his shell. He liked digging for treasure and go fish. He liked tossing ping pong balls into cups to win a gold fish, he was pretty good at it too. He won several fish, but he didn't know that so we left them behind. Logan was about to die to get into the moonwalk, so Paw paw got in and blocked him a little corner and he was happy as could be for well over 30 minutes when we finally drug him out. He was bouncing and pushing up on the mesh, it was funny. We won a cake at the cake walk and Ca Ca and Gam maw bid on Paw Paw in the pie throwing thing. It cost a lot, but Ca Ca got to hit Paw Paw in the face with a pie. Taylor had so much fun. He was so tired when we got home, but he was too wired to sleep. He finally fell asleep in our bed and I think he was in the middle of talking.
He has enjoyed this Halloween. I don't think Logan knew what was going on, but he had fun getting out. I am sure he would have liked it better minus the dog ears, but he had fun. I hope that all of you had a great Halloween and have plenty of your favorite candy. I know we have plenty of everyone's favorite!
October 30, 2004 Day +577 Day #275 off treatment
Today we played all day. Taylor has decided that he does not like his Sully outfit. He refuses to wear it, so we dug threw his old stuff. He put on the football outfit he wore 2 years ago. It didn't fit well enough to wear tonight, but I let him wear it to play in all day. He was walking out the door to go outside to play and stopped and looked at a framed photo of him wearing it. He is in a hospital bed and it was when we went back in for fever after his first round of chemo, he was a very sick little boy. He looked at me and said "I wore this when I was sick". I have no idea if he remembers or just knew from the photo, but it got to me none the less. He shouldn't have memories of the hospital.
WE played out side with Guh for a long time. Logan was in his walker going backwards all over the place. They took turns riding with Guh down the hill while sitting on a skate board. It was funny. Logan is so funny, he just laid back and got comfy for the ride. After all the fun we went in to decide on a costume. He finally settled on his Tigger outfit, but we modified it. We put his Auburn jersey over it and made him Aubie. He thought he was hot stuff. He was hot stuff before long and changed into his Tony Stewart race outfit. They shouldn't even sale those big fuzzy things here in Alabama, they know it will still be 80 degrees in October. He was cute though. There wasn't much going on. We went to a few houses and he gave out candy to a few kids, but that was it. I guess a lot of people will go tomorrow night. We are going to the carnival at Gam maw and Paw Paw's church tomorrow.
Logan went at Blue and looked like Taylor did at that age when he wore it only Taylor had a lot of hair hanging out and Logan didn't. Isn't is ironic that the baby that had had 10 haircuts before he even turned 1 was bald for the better part of a year. It was also ironic to tell someone the other day how he desperately needed a hair cut. Logan had fun, but got mad that he was in his stroller and didn't get to go to the door.
We stayed at Gam maw's house and watched football and gave out candy for a while. She had bought a little tunnel for Logan and they had a blast playing in it. Logan was still full speed at 8:30. He finally gave in on the way home. Taylor is still full blast at nearly 11:00. I guess sugar really does get you going. He has been non stop all day and I know he is tired. I tucked him in bed and turned on his Lemonade stand movie, of course, we had to come watch Aubie after dressing as him. However, I still hear him in there playing. Oh well, he is very good about getting back in bed when he is ready.
My little guy is getting so smart. He has number 7 on the jersey he had on earlier today. Tonight he found a bendable toy that was all shaped and ran to get his shirt. we had no idea what he was doing until he out them together and we saw that he was showing us the toy was bent into a 7. Neither of us it did it, it just happened, but he realized it. It was funny. As cute as that was I was a little saddened by this next one. All of you know "Frog". If not I will tell you. Taylor had a friend in day care before he got sick that carried a purple frog. Taylor always took it and played with it, so we had to get him one. He carried that thing every where. When he got sick we were on a mad dash to get more because we were so afraid he would puke on it and then freak out when we washed it or that it would tear up in the wash. They had stopped making them, so we put the word out and soon they were mailed to us from all over and we even got one from a felloe cancer patient and frog collector. We have tons of them and he played with them all. He always had to fall asleep with "his frog" or number one as we called him, but if he was on chemo we would swap them out once he was asleep just in case. People would recognize us or remember us because of that purple frog. Well, it has been a while since he played with it or carried it. The other night he was getting all his babies into bed and I handed him purple frog who is still bandaged up and everything. You see frog did everything Taylor did from getting a broviac line to blood draws. Taylor looked at him and said, "me not like him, he old". I told him that that had been his best friend for so long and he showed me a photo of himself holding the frog at about 16 months old and again told me "he's old". He doesn't need him anymore. Again, we wonder, does he associate it with the hospital or is he just growing up? Either way I was a little sad. I will keep that frog forever. He truly was a best friend to Taylor and got him through some rough times. Thank you to all of those Earth angels who sent us a frog.
October 29, 2004 Day +576 Day #274 off treatment
We went to school today. I have been a nervous wreck, watching Taylor like a hawk. I am a nervous betty anyway, but after reading all about Sydney I worry more. I know he is fine, but I always over analyze in these times. Anyway, we all had a good day at school. I think a mixture of too much candy and a full moon has gotten the better of the kids. It was a wild day. After school we went to Ca Ca's work to trick or treat. We did this last year and Taylor had the time of his life. This year he didn't really care, he just wasn't into it. He gat a few pieces of candy, but all he wanted to do was sit at Ca Ca's desk. We had to leave when Logan started squealing and no one could talk on the phone. We went to hang out with Nana until Ca Ca got off work and then we went to the grocery store and to dinner.
Taylor played with puzzles and cars while we were there. We also went through several pair of undies. He told me in the car that he pooped in the potty at school, but didn't tell his teacher and he did, so he had messed up pants. I forgot his bag today and had nothing to put him in. Nana doesn't have any boys in her center right now, well, not potty trained ones anyway. So, all she had were panties. We gave him a white pair and he never knew the difference. It wasn't 5 minutes later that he needed to poop and he went to the potty, but then missed the potty and wet the panties/underwear. We knew he was not going to wear the flowery pair she had so he had to wear a pull up the rest of the day. I worried about all these accidents, but Nana assures me that this is normal and he just gets busy. UURGH!!!
We met Jim at Wal-mart and was going to shop then go home and eat, but Taylor wanted to eat at "Lo Lo's Place" or Logan's Roadhouse. We thought it was cute that he called it that and off we went. Taylor ate good too, so it was worth it. Logan dug into a sweet potato and loved it. Both boys fell asleep on the way home and were out for the night.
October 28, 2004 Day +575 Day #273 off treatment
Today we went to Jim and Nicks with Guh and her "work fwend". Taylor was at the hunting club, so Logan got all the attention this time. He was a little ham too. He made faces and talked to us. He ate like a pig too, but there is nothing new there. We came straight home so that I could use this time to get some stuff cleaned with only one child to look after. Well, Logan had other plans. He will not sleep for anything. I have put him everywhere to sleep and given him milk and still no sleep. I let him up for an hour even though he was so tired and we tried again and still no sleep, so needless to say I got less done today than on a normal day. I did get some stuff down stairs however, it is just thrown down there, now I will get to spend tomorrow trying to clean up down there.
Taylor got home around 4:00. He was very tired, he had played hard. He rode his go kart and 4-wheeler. He was a little upset that the 4-wheeler didn't work very good, it kept getting stuck. He asked Paw Paw to let him take a nap. I wont say it didn't upset me to think he wanted to take a nap, but I know how hard he played. He took a nap on the way home and he was up late, he didn't want to go to bed. He drug out tons of puzzles and stuff. When I put him in his bed (he fell asleep in my bed, finally) I just put him on top of it all. He woke up with puzzle piece shapes dug into him. He thought it was funny.
I found out that Sydney, the daughter of the man who started Lunch For Life, has relapsed. It is a heartbreaking blow to hear that news. Please keep them in your prayers. www.sydneydungan.com. You can go to "Daddy's diary" and read her updates. Remember that Lunch For Life is a year round thing that you can donate to and help fund specific research for Neuroblastoma. www.lunchforlife.org
Please pray that Taylor continues to have great success against this NB beast. Pray for Sydney, Carter, Levi, Harrison, Carl, Sophia, Chris, Trey and Madison as they fight relapse. Pray for Bailey, as he prepares for tumor resection. Pray for Taylor, Morgan. Jaydon. and Sarah and that they are NED forever. Pray for all our other cancer friends. Pray for our troops.
October 27, 2004 Day +574 Day #272 off treatment
Today was the Halloween party at school. Taylor had so much fun. He ate his lunch then all his goodies for the party. He was upset that he didn't have a ball (jaw breaker) like Andrew had. We got him one and then he was mad because his was green and Andrew's was white. I had to convince him that Andrew had already licked the color off of it. He liked it off, but didn't like it, once it was white he put it in his pocket. That reminds me that it is still there and I better do a pocket check before I wash. I watched him and CJ have a conversation. CJ wanted something from Taylor's lunch and Taylor was offering it to him. They played and were silly. I love to watch him interact. I got a cute picture of them together. His first best friend, how sweet. After lunch they put on their costumes and went around to the church library and office as well as the other classrooms to trick or treat. He participated and even said trick or treat. It was so fun to watch them. He got gobs of candy and has already been in it. Logan's class went too, I didn't bring his outfit since it is a pain to get on and off for diaper changes. We decided he could just go as a pain in the butt:) Just kidding Lo Lo!! He got lots of candy too that Bubba is eating. He also got some gold fish and fruit loops, stuff that he can eat. He got real mad tonight when he was holding the fruit loops and couldn't get in them, he started banging them and then threw them across the room. Temper !Temper! After all the trick or treating we went to the gym and did an interactive story. Every time I would turn on the video camera to record Taylor doing it, he would stop.
After school we came home and Logan napped for a long time. He had too much fun at school today and he was exhausted. When Logan woke up we went outside and painted out pumpkins that we got at the pumpkin patch. Taylor painted his abstract:) I painted one with silver teeth and we named it Taylor. We painted one with big blue eyes and red lips and named her hot lips hula Han. Taylor rode his bike and skate board for a long time. Logan sat in his stroller and ate on his goodies from school. Soon it was time for Paw paw and Gam maw to come. They took Taylor for the night and Taylor and Paw Paw are going to the hunting club tomorrow. Taylor is so excited. He brought his 4-wheeler and his go kart. He wanted his gator too, but there was no more room on the trailer.
I will update again in a few days. I hope that you all have a safe and Happy Halloween! We will be sure to add new photos soon. Thank you all for checking in on us and praying. Please keep praying that Taylor is NED forever. Morgan had great results on all her scans, praise God. Way to go Morgan! I am about to check on all our other friends too. Let us pray that they are all doing well tonight.
October 26, 2004 Day +573 Day #271 off treatment
Today we went to the Galleria and got Christmas outfits for the boys. We will have pictures November 14th. I made a huge mistake on that one!! I originally scheduled it for Nov. 20th, Alabama vs. Auburn game day. Yeah right, like I would ever have gotten Jim dressed up and into Target that day. I quickly changed it and he wrote on the top of his appointment book that it was game day so that he could remind other women who called:)
We did a little window shopping then headed home. Taylor got in trouble for running out of the entrance to the carrousel and leaving me. I had to get home and get some dinner in me so that I could go to the Red Cross and give blood. I didn't think I was ever going to get home with all the detours due to the interstate over pass being demolished, but I made it. I had no problems giving blood and it was quick. I hope that all of you are going to give this holiday season. It is a very busy travel time and it is going to cause accidents that will require transfusions not to mention little kids and adults too with cancer and blood disorders that will need your blood. Please call your local donor center and make an appointment or call 1-800- give-life and set up one or see about a drive near you. It is a very simple way to help others.
Paw Paw came over for a little bit. Logan took a bath, but Taylor wouldn't, he was afraid Paw Paw would leave while he was in the tub. Logan will fly to the bathroom if he hears water. He loves a bath. He hates water in his face, but he loves to splash around and he likes it better if Taylor is with him.
I miss not doing this everyday, but as you can see the updates are fairly mundane these days, so we will keep doing it every few days or so unless something important comes up. Thank you to all of you who keep up with us. We appreciate it. Thank you for your support and don't forget to sign the guest book.
October 25, 2004 Day +572 Day #270 off treatment
We all had a great first day back at school. It was very smooth considering that everyone got a week at home. My class room had new bulletin boards and looks great. We finally got to start decorating our new room. After school we went home and I was in a rush to get a million things done before I left for my Mary Kay meeting.
I got a ribbon tonight for a $500 week. Yeah me and thanks to all who helped get me that ribbon. It is always fun to get that recognition on Monday nights. I learned tonight that a fellow consultant is having to deal with turning life support off for her mother. Please keep Vicki and her family in your prayers as they deal with this decision and the loss of a family member. Also last night we had a guest that is a fellow cancer club member. Her son is a cancer patient at Children's. Please keep this young man in your prayers and pray he continues to have success in his battle with leukemia.
Taylor pooped in his pants today right at 4:30 when we were walking out the door. He said it was because he was playing, but I am not sure why he did it. He did it again while I was gone. He gets all silly if we try to ask why he did it, but I assume he was just busy. It was all normal and no reason to think he was sick or anything. We just had a 5 year old have an accident today at school, so I am going on the old saying, "accidents happen".
Pray for all our friends in the battle for life. Pray for our troops and their families as the holidays come upon us. Pray that Taylor is NED forever.
October 24, 2004 Day +571 Day #269 off treatment
Today was my open house. I had a lot of fun and made some money too. Thank you to all of you who came out and supported me. I hope you all loved your products. Be sure to be thinking of your Christmas list and let me help you do some shopping.
Jim and Taylor went to Lowe's this morning and a fireman asked how old Taylor was and they got to talking and found out that he was a distant relative to Bailey our NB friend. He let Taylor climb in the fire truck and play and look around. I wish Jim had had a camera. It was very thoughtful of him to let Taylor do that and he loved it. He got an honorary badge that he wore all day even on his PJ's. They stopped at Sonic on the way home and we learned that Taylor pays attention more than we think. He came in singing and I had no idea what he was saying. He was singing "Can I get a witness". He was also in the Lifestyle section of today's Birmingham news for the Magic Moments wine auction coming up in November. The piece also ran in the Over the Mountain Journal on Thursday. You can only see half his face since Bozo is covering it, but that it Taylor for ya!
Taylor, Logan and Ca Ca went to Paw Paw's house and played while we were doing the open house. Guh and Mary came to help me. After the party we met Chris and Temperance for dinner. The kids were so funny. Logan ate like a cow from any plate that would offer it and that was after his entire Lil Entree meal. Christian and Taylor played with their food, but ate it too. Taylor fed Christian some macaroni, it was cute. It was fun, it is fun to get them out now that they are all at a fun age. However, they are all also at that fit pitching age, so we saw a lot of that from the 3 of them.
It was hard to go home and get ready for school, but we did. Taylor was ready to go, he has been talking about Shannan and Christy all day. He misses them. He missed his friends too. Logan is so different just in a weeks time. He is still temper mental, but he can get around better. I am not sure if that is good or bad:)
October 23, 2004 Day +570 Day #268 off treatment
Today we went to the Pumpkin Patch with Guh. We left home around 10:00 and ate at Sonic then headed towards Harpersville to the Old Baker Farm. Taylor loved the hay maze. We had to beg him to move on to something new. He went through the barn and looked at the animals and he was ready to go. We had to beg for pictures too, but we got a few. Logan fell asleep, so I sat out the hay ride to the pumpkin patch. Taylor had fun and didn't get as muddy as some of the people were when they came out. He picked 3 pumpkins. He had a half green half orange one, but decided it was broke and put it back. We have to circle ones and an oval. He was sure to point that out. We are going to paint them rather than carve them.
After the pumpkin patch we went to Guh's where daddy kept the boys while Guh and I went to a Princess house party. Jim had steam cleaned out carpets and it was still wet that is why they hung out at Guh's. I won 2 prizes at the party, go me! After that party we went to Mary and Andy's to work on Ca Ca's car. When we left Guh's house to head to Mary's we were behind the ice cream man. I wasn't going to try and get him to pull over and no kids were out, so we didn't get any ice cream. Taylor was upset with me about that. While we were at Mary's the ice cream man came by and we were able to stop him. He got a Power Ranger bomb pop, took a few licks and was done. He was stained red for a few days too.
We came on home and got Lo Lo in bed and started putting all the furniture back and setting up for my open house. Logan and Taylor loved the furniture all pushed up in the middle of the room, they had lots of running room. I remember when we first moved in, we lived here about 2 weeks with no living room furniture and Taylor loved it. I think he would be happy in a house with no furniture and a tent to sleep in.
October 22, 2004 Day +569 Day #267 off treatment
Can you believe it is Friday? Why did my off week fly by? Oh well, we had a good week. Today we met Jim at Jim N Nicks where Logan made a pig of himself. Taylor didn't eat at all, he was pouting over who knows what. We went to Big Lots after lunch and looked around. Taylor was really into the Christmas stuff, but mad that we didn't buy any. We went on the toy aisle he saw a bunch of toys that Nana has at her house and he had to go to her house and play. We went by her house for a while and Taylor played and Logan napped. The kids Taylor's age had already left, so he played alone, but he was very good. He likes to dig thru her toy box. We left Nana's and stopped by Gam maw and Paw Paw's until Paw Paw had to go to work. I took Logan home and Gam maw brought Taylor later. He ate a good dinner of chicken nuggets. Logan ate the fries for him. Again, we played bed time war, but he finally went. Logan was zonked in no time after a hard day of playing. He crawled around at Nana's and played too.
October 21, 2004 Day +568 Day #266 off treatment
Today we went to IHOP with Guh and Nancy. Taylor didn't eat as well as he did the last time, but he did fair. After lunch we went to the Paper store and looked around and did some other shopping on 280. We didn't get anything, but we had fun. We didn't shop long since Logan gets board and Taylor gets tired of walking. We came home and Taylor played outside for a while and Logan napped. We all 3 went around the block and hung more invitations. Taylor did very good for the very long and up hill walk. He picked up acorns, but ran a lot and lost them. He didn't realize he had lost them until we were home and was very upset. He wanted to go back and get more, but I said no. I knew he couldn't walk it again. He had bad leg cramps later on tonight. He went to sleep in a matter of minutes after being tucked in. He was very tired.
Logan can walk the length of the hall with his push toy. He really runs more than walks. Taylor knew how to walk at 10 months, so it is funny to watch him waddles around. It is good though, he will be in so much trouble when he learns to walk. He is crawling on his knees now rather than his army crawl. Taylor never did crawl on his knees. I can not believe he is already 10 months. I can not believe that Taylor is almost 4. Where does the time go? I guess the old saying is true, "Time flies when you are having fun".
October 20, 2004 Day +567 Day #265 off treatment
Well today started off different. Logan was up early as usual, but Taylor slept until 10:00. I am not sure why, but he was in a great mood all day. We left home around 1:00 and went to do a few things. We didn't get all we needed to get done, done since Logan went ape in the car. We just headed home, I didn't want to hear him scream all afternoon. We got home to see that Ca Ca was home. Taylor saw the mustang was here, but didn't put twp and two together and was shocked to see Jim home. He was not feeling very well and slept all afternoon. I did some laundry and watched cartoons with Taylor. After dinner, Taylor and I made his goodie bags for his Halloween party at school. I made some for my class too. He thought that was fun. He has only had one party at school and he was only 9 months old, so he didn't get much out of it. I know he will have fun this year.
We all went to bed about 10:30 last night. Taylor didn't want to go. I have cut his cough med dose in half, so he isn't sleeping the day away anymore. I guess he isn't getting the full effect of the med either, but I don't want him asleep all day. Oh well!! It doesn't even bother Logan, he still only sleeps about 30-45 minutes.
October 19, 2004 Day +566 Day #264 off treatment
We spent all day at home, it was such a nasty day outside. We never had anything more than rain here, but all the same it was nasty. At one point it was raining on the left side of the house, but not the right. It was very interesting. I know it has to stop and start somewhere, but you don't usually see it.
I had two balls of energy on my hands today. They were so loud and wild. I think the weather brought out the animal in them. Both boys are eating good again. I am glad about that. I made several phone calls that got Taylor in trouble due to his loud behavior while I tried to talk. Boys will be boys!
I got a lot of my stuff done for my open house this weekend. Don't forget Sunday 2-5 at my house!!! If I don't have what you are looking for, I will order it and get it in in a few days. Easy Christmas shopping!
October 18, 2004 Day +565 Day #263 off treatment
Today we ran a few errands and then we hung out at Nana's until it was time to meet Jim and swap cars. Taylor played great with the kids and had some snack. On the way to my Mary Kay meeting the mustang was getting way to close to hot in that stop and go traffic. I left it with Andy and I rode with Mary to the meeting. Jim gets to put a cooling fan on it this weekend. I got home around 9:30 and Taylor was asleep in the living room floor. He had jumped off the couch and hurt his nose and cried it out in the floor. Logan was asleep in his room. Taylor ate great today, but Logan is still lagging in that department. We went to the Olive Garden at Taylor's request and he ate great. That will always fix him right up.
October 17, 2004 Day +564 Day #262 off treatment
Yesterday Taylor ended up sleeping several hours. After he woke up he was still puney and went back to sleep. I admit I was nervous that is not like him to sleep the day away. He finally got up at about 4:00, but came to the living room and laid down. He would go back and forth between the living room and his room, but he would just sit and do nothing. I kept asking if he was okay or if he hurt and he said no. He had heard Temperance and I planning to do something, so he knew that Christian might be coming over and he wanted Guh. We had them all over and he did finally perk up.
Guh was able to leave with no hassle after Christian came to his room to play. We wondered how that would work out. Taylor is not very good at sharing or allowing others in his room. They played so good. It looked like a tornado hit the room, they were tripping over stuff and falling, but they were great. No one tattled or cried, no one hurt anyone and so on. They would come back and forth and show us stuff. I didn't care about the mess or the fact that Logan was not going to sleep, I was just glad that Taylor was sharing and that they were having fun together. Temp and I cleaned up the mess in a few minutes and they were on there way. Everyone was very tired. We had watched the movie "The Day After Tomorrow" it was very good.
After they left Jim fell asleep on the couch and Taylor and I read some books and did some laundry. Taylor would get still and be about to fall asleep then he would pop up and be very silly. He finally went to his room and slept in the floor. I don't know why he does that, but whatever makes him happy. It was nearly midnight before he fell asleep, but I guess that was to be expected after such a long nap.
He slept until about 9:00 this morning and is in a fine mood. He has no desire to eat or drink. Logan didn't want food, but he has already had a ton of milk. I have a bit of a sore throat myself, so maybe this is what is going around. Dr. Anderson said they probably picked it up when we came in for the Flu shot. I have been going to that Dr's office since I was little, so I don't even read the signs anymore. I noticed when they called us that day that they had swapped the waiting rooms and what used to be the well is now the sick, so we had just sat for 10 minutes in the sick waiting room, so they probably did get it from there. Oh well!
I went to Mary's to help her with her Mary Kay open house. We had so much fun. Don't forget that mine is this Sunday, the 24th from 2-5. I got home and Logan was in a bad mood and Taylor was wired after sleeping 4 hours.
October 16, 2004 Day +563 Day #261 off treatment
What a night. Not enough people showed up to play Bunko, so we played poker instead. I have no clue as to how to play poker, so I was the banker and I just looked at magazines and ate way to much food while I watched. We didn't get home until about 11:00 and we came home to find Logan running a 101.5 fever. I have no idea what it is like to have a healthy "sick" kid, I don't remember those days. I called the after hours number to the pediatricians office. I had to look it up, it has been a while since I had to look up a number for a Dr. Anyway, they made us an appointment for 8:30 this morning to see the Dr. and have him checked out. He slept okay. I had to feed him 4 ounces to get him to go back to bed after talking to the Dr. and giving him Tylenol. He slept until about 2:30. He finally put himself back to sleep without me having to feed him again. He slept until about 7:45. He refused all food this morning and slowly drank 6 ounces of formula. What a way to spend your 10 month birthday. Can you believe that in 2 months Logan will be 1 year old. I can't!!! The 9 months I was pregnant certainly didn't go by that fast!
Taylor woke up as I was getting ready to go. I went to talk to him a minute and found that he felt hot. 101.5 hot!! That is the magic number as you all know. However, seeing as it is Saturday and clinic is not open that would mean a trip to ER. I said no way!!! I took him to the pediatrician and told them unless they thought he needed ER then we were skipping it. They agreed there was no need to go and risk getting God knows what from the people there when they can check him out. They couldn't draw port cultures, so if he is still running fever Monday we will have to go to clinic, but that is better than ER. By the time we got to the doctor this morning Taylor's temp was down to 99 and Logan's was up to 102.3.
We saw Dr. Anderson, the Dr. that assured us Taylor didn't have cancer. I do not dislike the guy, Taylor had a very hard to diagnose disease, but it is hard to be 100% trusting. Anyway, both boys got a finger stick CBC. Taylor's counts are perfect, his WBC is 11,000 and he was not anemic. Logan's was 5,000 which wasn't enough to need a antibiotic, but enough to show he had some viral crud. No chest x-rays were done, it is all in their heads. He gave us Accuhist cough meds and Tylenol. He said that normally he would give Taylor a antibiotic anyway just to be safe, but since he couldn't draw port cultures he didn't. If he gives a med that partially treats any infection then his fever continues on Monday and they draw cultures they will be false results. He didn't feel like it was anything like that, just whatever crud Logan had. He feels that Logan was the sicker of the two.
Neither one has eaten well. Taylor ate a hash brown and one pancake. Logan had a few bites of egg, neutragrain bar, and marshmallows and that is it for food. The cough medicine made them sleepy. Logan took a longer than normal nap and Taylor climbed in bed and went to sleep at about 2:00. I have mixed feelings on this one. I feel better that they both have it that lessons the fear of it being cancer related. However, you always have the "what ifs" in your mind. I don't like the not eating and Taylor telling me his tummy hurts. I wanted him to be 3 or 4 so bad when this all began. I thought he could tell me what was wrong if he was older. Wrong, now I wonder is he telling the truth or wanting attention. This morning he told us several times that his leg hurt in the back of the bend of his knee. However, once he was up and moving he was fine. I guess this is just what we will live with from now on with every illness that comes through this house. I am sure it is nothing more than crud, Taylor is notorious for that.
Please pray that both boys have some crud that will go away very soon. Pray that it is in no way cancer related. Pray that he has no more fevers and that he doesn't need to go to clinic. Pray that Taylor is NED forever. Pray for all our friends!
October 15, 2004 Day +562 Day #260 off treatment
Well picture day turned out okay, I guess. It was the same lady that took them at Morningstar, the last time she saw him was the day before his MRI and he had no intentions of cooperating. He started out with no intentions of cooperating today, but I told him I was taking the skate board away if he didn't so he changed his tune. We did Logan first on one scene then added Taylor. We did a few of Taylor alone. I honestly can't remember if Taylor moved to the other scene or not. I know Logan did and kept putting his fingers in his mouth and when she went to move his hand he lost his balance. He fell off the stool and she caught him by his foot and I caught him by his arm before he went off the table. We were both less than a foot away from him, but it all happened to quick. Well after that he was afraid and upset and he wasn't going to cooperate, so we didn't get much of him. Oh well!! We will try again next month. It made for a long day keeping everyone clean before they had their turn. My class didn't get their morning gym time and they were restless without it. That was okay though since we are out all next week for fall break.
Logan didn't get his nap before school and therefore was very cranky today. He didn't eat very well and was fast asleep before we got home. He took a very good nap and woke up happy as could be and ate some veggies.
Guh is coming to keep the boys tonight while Jim and I go to play Bunko down the road. Taylor is excited to show Guh his new skate board. I don't think Logan is going to be pleasant, he is rather crabby.
October 14, 2004 Day +561 Day #259 off treatment
We had an unusual start this morning. Taylor woke up at about 8:45 which is much later than normal. He cried out a little so I went to his room. He was in a ball crying. He said his tummy hurt real bad. We all know the million and one thoughts that whirled through my mind, but I quickly pushed them away and asked if he was hungry or needed to poop. He said he needed to poop. I took him to the potty and he just clung to me and cried. He wouldn't sit up straight and kept grabbing his tummy. I assumed it was gas when he wouldn't sit up and couldn't poop. That made the tears come harder. He was so mad that he couldn't poop. He asked me to put him back in the bed. I did and then I went to call Guh to tell her we probably wouldn't be coming to lunch with her. I went back to his room and he was sitting in bed playing and drinking tea. He was laughing too. I asked why he was laughing and with a 100% all boy smile he said "I pooted". He continued to do so all morning. We ended up meeting Guh and her work friend at Chili's for lunch. He was adamant that he have a corn dog. I knew he was not going to eat it, but when we ordered mac and cheese he was mad. He got the corn dog and ate most of the breading off of it and a few fries. That is all he has had today and not much dinner last night.
Speaking of dinner. We grilled burgers and he was trying to eat at his picnic table, but Logan pulls up and bothers him and Logan had sat in his high chair as long as we could make him. I asked Taylor if he wanted to sit in the high chair so that Logan couldn't reach him. He agreed and thought it was funny that he now had a chance to use something of Logan's, he thought Logan would be mad. It was funny enough to see his long lanky self in the high chair. He feet early touched the ground. Logan bugged him anyway. He was like a dog, sitting under the high chair eating whatever Taylor dropped or playing with his feet. Taylor will never get in the high chair again. When he decided he was done after a few fries we refused to let him down. He was stuck until we approved of what he ate. He was furious, but he did eat the 5 bites of hamburger I made him eat and more fries. It was funny and worked like a charm, but it will never work again.
I have a favor to ask of you all. If anyone comes across some Shrek toothpaste in swamp green apple flavor please get all there is and I will come and get it or pay to mail it. That is the only toothpaste that Taylor likes and we are about out. I found one tube of Shrek toothpaste at Wal-mart but it was chocolate flavored. We have about 5 tubes and the green apple is the only one he likes. Thanks in advance!
Tomorrow is picture day at school. They will get individual and pictures together. We will still do Christmas photos next month. Two years ago tomorrow we were sitting in the waiting room while Taylor was having a tennis ball sized tumor removed from his tiny body. What a joy it is to now be getting pictures made. I know he could care less, but he is not aware of the importance of it.
Pray for our new friend Davis as he begins chemo. Pray for Bailey who is preparing for tumor removal, they are expecting to get about98% of the tumor out. Way to go Bailey, you keep on kicking NB butt! Pray that Taylor is NED forever. Pray for all our cancer friends.
October 13, 2004 Day +560 Day #258 off treatment
Another school day. Taylor and Logan both had good days. They looked so cute in their matching pumpkin shirts. I handed out invitations to my Mary Kay open house. If you are reading this and live close enough to come by all means come! If you don't live close enough or can't get here, you can call me or order on line and we will get you your goodies too. It will be at my house from 2-5pm on Sunday, October 24th. Call me or email me if you need directions. If you pre-order for Christmas that day it will be here in plenty of time for Christmas.
They had a birthday party in Taylor's class and he was given a juice box, he just stared at it until someone gave him tea. He is so goofy. I had apple juice the other day and he thought it was tea and took a drink and spit it out. That is about it for today. Nothing too exciting going on.
I did talk to Meredith and it has to be 4-6 weeks after the last shot before you draw the titers. That will fall about a week before we go in for his bone scan, so we will draw them when we go in on Dec. 1st. It will take a week or so before we know how much of the immunity has built up in his body. We will deiced after the titers are back if he can get his MMR, a live vaccine. If not we will test titers again in a few months.
Please pray for a newly diagnosed NB patient. Davis is 4 years old and has high risk, stage 4. We have not met him yet, but gotten several emails from people. We hope to get in contact with them soon. We would love to help them out. Please pray that as he starts his treatment, he is feeling good and not scared. We all know that they will come to love the staff, but the first visit is very hard. Pray that he responds well to all his treatments. His plan looks very similar to Taylor's. Pray for Bailey as well who is responding to his treatment. Pray for all our other friends here in Alabama and all over that are battling cancer.
October 12, 2004 Day +559 Day #257 off treatment
I Happy Tuesday all! The boys are being good, but Logan is into everything as usual and I can't get anything done. If I am not moving him away from trouble I am getting Taylor away from Logan or Logan's fingers out of the door Taylor is about to slam. Logan isn't eating real hot today. Bread is all I can get him to eat. He didn't want his breakfast and he is just smooshing the peas on his tray. I gave him some real milk in a cup and he didn't like it. He will drink from the cup, but I have to put his formula in it since he doesn't like anything else. I see he is following in Taylor's foot steps. Taylor is eating the fettuccini noodles he used to eat all the time. I think they are both feeling a little blah after that flu shot.
I contacted Meredith today to see who gets to test the Polio and Hep b titers next month. I don't remember if we did that at Greenvale or Children's. It doesn't matter one way or the other to me, but I wanted to be sure it got taken care of, so that we can finish up these immunizations. After these titers are checked he will either get the MMR or wait a few months and try again, but other than that he is done and is free from shots until his 5th birthday when we will pick up the normal schedule of immunizations. Wow, we are soon going to be following a "normal" schedule.
Taylor went to the movies with Ghen Ghen and Bob. He saw Shark Tales and really had a good time. He has told me about it the movie and pop corn and the stuff he got at Wal-mart. No date is complete without a trip to Wal-mart. He picked out Logan a baby radio that sings several songs. Logan loved it even though I think Taylor just wanted it for himself. He went and got the Blue's Clue's radio he loved so much when he was little and played with it.
Logan and I met Ca Ca at the grocery store and did some shopping while Taylor was out. Then we came home and hung out until Taylor got back. Logan was already in bed by the time he got home and he slept through all of Taylor's excitement. Taylor begged not to go to bed, but we made him and he was asleep in 5 minutes.
October 11, 2004 Day +558 Day #256 off treatment
I am going to change the way I update. I am going to write everyday, but we will only post once a week. If you do not get the email we send out when we update, be sure to check back every once in a while. I just wanted you to know so no one worried that when there was no update. We will update everyday if there is a need to. Be sure to go back and read what has been going on since our last post. Taylor's 2nd anniversary of his diagnosis has come and gone. We had a special weekend for him to celebrate the miracle that God has performed in his body.
We went to school today, well, Logan and I did. Taylor and Jim stayed home. They went to the mall for a little while and had some guy time. After school I took both boys to have a flu shot. When you get a flu shot, a certain age group gets a second dose the first time they get it. Both boys are in that age group to get the second dose, but due to the shortage only Taylor will get it. He has to due to his illness and Logan is healthy enough even as an infant to skip the booster dose. They are having to bookmark a box of the flu vaccine just for those kids that must get the second dose. We will go back in 30 days to get the 2nd dose. I certainly hope they do not forget to mark it and run out. I was able to talk the nurse into going ahead and giving Taylor the Hepb shot that he was due to get next Monday. That finished out his 7 month long re-immunization chart. Next month he will have his titers re-tested and depending on those numbers he will get an MMR shot and possibly another Hib or Hepb, I can't remember, in about 6 months.
Logan was having a grand time turning the lights on and off in the office. He jumped a little and whimpered at the shot, but never got too upset. Taylor was screaming like a wild man when she pulled his pants down. He never shed tear one, just screaming like some nut case. He upset Logan with all his screaming, so now we have Logan crying too. As soon as Taylor saw the basket of stickers he was fine. He played with the water fountain while I paid and got the appointments taken care of.
Logan is eating table food like nobodies business. He loves it. Taylor hated all table food until he was well over a year. Boy, they are as different as night and day. He is pulling up on everything. He is pushing the walking toy, but not the right way. He pushes it as far as he can with his arms then falls, he never moves his feet. Oh well, he will get it. His hair is getting long. He has more curl than Taylor did and he has one curl in the back that is a mile long. He is getting brave, he tried to climb out of his bath ring the other night and got mad that it was too slippery to get up. He is going to kill us. You can not get anything done for pulling him out of something rather it be Taylor's food, the pot and pan cabinet, the bathroom etc. He is into everything!!! We are all geared up to have only the top portion of the Christmas tree decorated and the tree tied to the wall:)
Please pray that Taylor has beaten the cancer and is NED forever. Pray that this winter is easy on both boys as far as illness goes. Pray for all of our friends in the the cancer club. Pray for our troops and the family members left behind as they go over seas. Be sure to read the last few days of updates, especially the weekend updates, Taylor had a busy weekend!
October 10, 2004 Day +557 Day #255 off treatment
Two years ago today we were given the worst news a parent could here about their child. Two years ago today, 20 month old Taylor was diagnosed with stage 4 Neuroblastoma. Wow, what a punch in the face to have this strange Dr. come in and tell you those words. I remember thinking how heartless he seemed to come in and so coolly tell you something like that. Of course, 2 years later I am very aware that that was just a defense mechanism for him to get through that. Dr. Berkow is indeed one of the most easy going, care free and caring men. We have all grown to love him so very much. He has played an enormous roll in healing Taylor as have the staff of nurses, other Dr's and nurse practitioners that help him. We have made so many friends with hospital staff, friends that we still talk to outside the hospital or make a special point to visit on clinic days.
I was going to put last years post on here again, but I wont. You can go to the archive of old entries and read it if you wish. I still remember the day just as vividly as last year. I remember the clothes we were wearing, conversations that were had, phone calls made etc. The difference this year is that we are so Faithful, hopeful, prayerful almost sure that he is cured of the beast that once ravaged his body. Yes, there is still fear of relapse. I guess there always will be, but he has come so far and beaten so many odds that we are confident he is cured. He is now 2 years post diagnosis, 18 months post transplant and 8 months off treatment. Those are all huge milestones that unfortunately many NB kids never reach. I am so very thankful for those milestones. I could go on forever, but I get so jumbled and my mind runs away when I think of that day, so I will stop and tell you about today. Again, you can read last years post or even the history that lead us to that fateful day in 2002 in the archive pages if you want to.
Today we went to IHOP and ate lunch. Taylor didn't eat as good as he did the other day, but he did fair. Logan acted like we starved him, he screamed every time there wasn't food in his mouth. PIG! After lunch we went to the Children's Hands on Museum in Tuscaloosa. Taylor didn't have a playmate this time seeing as it was dead around there, but it did allow him to play more. He is better by himself, he gets shy with other kids, so with the few amount of kids there he went crazy. He was running and jumping and being wild. He didn't stay in any one area for longer than about 5 minutes. He loved it. We will have to go again. He didn't want to leave, but Lo Lo was fussy and we had seen everything. Maybe we will bring a friend next time. Logan liked it, but every time we let him down he would find the one piece of trash and go for it, so he had to stay in his stroller. He got in a little ball pit for a minute, but he was eating them. He puts everything in his mouth. We are now home on this rainy afternoon and we are just hanging out. Taylor is staying home with Ca Ca tomorrow and then both boys are getting Flu shots tomorrow afternoon. Should be fun.
We thank you all who have stood with us through this and prayed with us and for us. You have all donated your time, money, food and so much more and words can not express the gratitude we feel towards you all. We could never have made it through all of this with out all your support and help. We appreciate all your help with all our fundraising efforts, tags, lemonade, blood drives etc. That support was also greatly appreciated.
I love this web site as it is an outlet for me to get out fears and thank yous all at the same time. I don't know how long we will keep it going. I guess as long as people read it. I do like to go back and see what we were doing at certain points, so I will probable keep going for my own sake. Please continue to pray with us and for us. Pray that Taylor has beaten the beast and will never again face cancer. Pray that we continue to have this normal lifestyle that we have eased back into. Pray for all the people we have met along the way rather it be here, NYC or via the internet. We are part of a huge family of cancer patients and although it is a club no one wants to join, you will never come across a more supportive and loving group. Pray for all of them. Pray for those who have lost a child or their child is nearing the end of their battle. Pray for those that are in remission to stay that way. Pray that those that are still on treatment can achieve remission. Pray that the fundraising money will find a cure for cancer and that soon no one will have to have a day, a moment like we did on October 10, 2002.
October 9, 2004 Day +556 Day #254 off treatment
Two years ago today we went to see Dr. Petelos and found out that Taylor was anemic. I thought that meant we were at the bottom of the problem and he would take some iron meds and we would go on with life. Wrong! Dr. Petelos had gotten to the bottom, he knew he had cancer, but he had to get us to Children's to find out. Here we are 2 years later and Taylor is at the Auburn game having a grand time. He is happy and healthy and doing what a 3 year old should be doing. He is even driving them crazy running his mouth 90 to nothing. Isn't it wonderful!
Logan and I hung out at home and took a trip to good ole Wal-mart. He has been good, but into everything. He took the tape that holds the glass doors on the entertainment center off and ate it, he has pulled the pots and pans out 100 times. He got stuck in my room, he closed the bedroom door and opened the closet door and got the door knobs caught and I couldn't get him out. He was ticked off, but I had to just push him back and get the doors undone.
Not much going on around here. We managed to get our shopping done before it poured down rain. It was a good day to stay at home.
Please pray that Taylor has many more days of normal. Pray he is NED forever. Pray for all his friends that are fighting cancer or some illness.
October 8, 2004 Day +555 Day #253 off treatment
Today Taylor brought ghost cookies to share with his class. He shared them to mark the 2nd anniversary of his diagnosis. Sunday the 10th is the official day. We were not celebrating the day he was diagnosed, but that he was alive and well after 2 years. I wont say that I thought he was given a death sentence that day, but I can't say that I really thought he would be here or doing great 2 years later. However, now I am Faithful that he will be bringing cookies for many years!
Logan is still showing his tell at school. He is so whiney and temper mental. He is that way at home too, but I hate for him to be the kid that everyone hates to see coming. Maybe he will grow out of it. Both boys went home with Gam maw and Paw Paw after school. I hope they are being good.
Taylor is going to Auburn tomorrow with Ca Ca and Gam maw and Ghen Ghen. Logan and I were going to go, but I opted not to since he hates his play pen so much and it will be hot. I think we will all be better off if Logan stays here. I am getting a lot of cleaning done this afternoon without the boys here, so maybe Logan and I can have a Saturday of nothing to do, that would be nice.
October 7, 2004 Day +554 Day #252 off treatment
Today we went to Children's Hospital for Taylor's routine hearing test. He had his last one in May. Today's test was slightly improved over the last one, but that it is only because he had a flat tempanic something or another in May aka fluid on the ear drum. Today he was normal in both ears. He still has a significant amount of loss in the high pitch area, but nothing to be concerned about. He will be checked again on April 7th. If that test is the same he will do it yearly to monitor it. He has not had an ear infection since February (knock on wood) and that is all that could hurt his hearing further at this point unless he took more chemo or Accutane and we are not going to do that! He cooperated very well! He was very against the idea of me watching through the window and the man was none to happy with me being in the booth, but as I am sure he learned today, you pick your battles with Taylor. The only way he was going to cooperate was if it was all under his terms. He won! He cracked me up because he would hold the toy up to his ear like the guy told him until he heard the noise. The funny part was he held it to his left ear, the ear the guy used to show him, rather he had the toy in his right or left hand. He was supposed to put it to the ear that was hearing. It didn't matter, but it was funny to watch him put to the ear that matched the hand then jerk it real quick back to the other ear. He was following directions!
After the Dr. We went to Mary's to drop off some stuff and she went to lunch with us. We met Guh and Guh's work fwend at IHOP. Taylor asked for pancakes this morning and that suited us all fine. It was so good, good enough that Taylor ate about 3 silver dollar pancakes and his eggs. He thought it was cool beans to ride in Mary's van. He was watching TV, but we couldn't figure out how to make the sound work, so he couldn't hear it. He didn't care, he just thought it was cool that there was a TV in the van and that the door opened and closed by itself. He is easily amused:)
October 6, 2004 Day +553 Day #251 off treatment
Guess what? We all overslept today. Logan slept until about 7:30 and no one got up because we rely on him to get us up. We got to school on time even though we had a late start. A fireman came to show his truck and talk to the kids about fire safety. They all loved it, but we all know Taylor loves fire trucks and he had a blast. He got his picture mad with the fireman and with his class by the truck. He even got to wear the fireman's hat. We almost didn't get to see the fireman. About the time we got the kids lined up and ready to go he got an emergency call and since he was from the volunteer FD he couldn't get a hold of anyone to make the run for him. He got it all worked out though and was able to stay. Taylor wore his fireman shirt and boots, but he ended up putting his tennis shoes back on. He couldn't get around very good in the boots. They are rain boots and they go up his leg, but they are a bit too big and he has to shuffle in them.
Today was special for Taylor not only because of the fireman, but he was the line leader. He was very proud of his job. He fell and ran into things a bunch, but that is normal, he never looks where he is going. He runs into the door frame of his room all the time and he has the door the end of the hall, it is a straight shot. He is just goofy!
Now that we are back home, he is eating, AGAIN!! He ate his lunch, but still wanted chicken nuggets. He is watching Mr. Rogers. Logan is asleep. He had a good day. I peeped in on him and he was in the play house, but the door is torn off, so he had no door. He loved eating his real food and feeding himself at lunch. He downed a bottle once home and is sound asleep.
Please pray that we continue to have these normal days. Pray that Taylor is NED forever and that Logan never faces anything close to what Taylor has. Pray for our friends, Sophia, Morgan, Jaydon, Chris, Cam, Sarah, Harrison, Madison, Jay, Christy, Shelby, Sidney, Ally, Todd, Tyler, Sophie, Levi and many more. Pray for Anna, Uncle Dugan's girlfriend, as she faces some health issues.
October 5, 2004 Day +552 Day #250 off treatment
Tuesday is a day of rest around here, yeah right. Logan was up at 6:00 ready for the day. Taylor may have gotten up at 5:00, but he ate and went back to bed, not Logan. He just doesn't sleep as good as Taylor did. He even went to bed about an hour later than normal last night and still was up early. Taylor went to bed at 7:00, he fell asleep in the car. He never moved a muscle until about 7:30 this morning.
Logan got some outside time in last night. Jim laid him in the grass and he raised his feet and arms like he was sky diving. He didn't care for the grass. He finally got over it and crawled around, but every once in a while he would make an awful face and look at his hands. He sat on Taylor's 4 wheeler and the stinker somehow pushed the pedal and took off, backwards. Luckily, I was still holding on to him and I was able to walk with it. Taylor got on and held him and took him for a spin. He liked it, but Taylor holds on to his neck rather than his waste and he didn't care for that. Taylor was real good about letting him sit on it and taking him for rides.
Logan was also a pig at dinner. He ate all his real green beans and sweet potatoes. He didn't care for the turkey cubes. He then ate some tortilla and about 1/4 a cup of mac and cheese that was left on Taylor's plate. He polished that off with a few bites of a dough nut. PIG!! Taylor was well over a year before he would have eaten like that. He didn't like anything lumpy, he was a stage 2 baby food guy. He is still picky. Not Logan. He will eat anything. I have to vacuum all the time. Logan eats everything off the floor. Taylor never did that either. He also had that plug in his mouth all the time. We were looking at photos the other day to see how much they resemble at this age, not much by the way. Anyway, Taylor even had his passy in his mouth in the bath tub. Every picture he had it in his mouth. I guess we don't know if the resemble or not. We need to start plugging up Logan and seeing if they look a like then:) Logan could care less about his passy. He will take it if he is going to sleep and that is it. He wont even take it in the middle of the night. That suites me just fine that just means I don't have to take it away later.
Taylor cracked me up, as usual. When he gets up in the mornings or comes home from being gone all day, I always say "Hay good lookin'". We were in Wal-mart in the shoe department and he went past a mirror and stopped and said "Hey good lookin'". He has a new favorite toy. He carries around a pair of play pliers and a rubber lizard and he is Pippy while he is fishing. It took me a while to figure out what he was doing, but I get it now. He is baiting hooks and un hooking fish. He pays attention to everything. It is amazing the stuff he comes up with that we never thought he was hearing or seeing. Gotta be careful what you say!
October 4, 2004 Day +551 Day #249 off treatment
Today is Monday again. Why is it that the 48 hours in Saturday and Sunday whiz by and the other 5 days are in slow motion? Anyway, we had a good day. Taylor's room had some work going on, so they played in the gym extra and did some work in the lunch room. He had brought some community helper books to share with the class, so they read them then. He did very well with sharing his books. It is just Logan he will not share with. He was upset after lunch when he didn't go to the gym. He didn't understand that he had already gotten his 30 minutes in there earlier. He got over it though when they got in the room and started playing. He was not ready to go when it was time. I am so glad that he loves it and is comfortable with everyone.
Logan was in a much better mood today. He did not eat his food. He wanted to feed himself, so I will have to send his finger foods even though it will take him forever to eat it. He didn't drink much again, but he drank a 6 ounce bottle before and after school, so I think it was more being nosey than not wanting it. He has a need to be nosey rather than do what he needs to do like eat, drink or sit still on the changing table.
Another normal day in the books for the Watts family. Please pray that the rest of our book is filled with normal. Pray that Taylor is NED forever and that he is never faced with cancer again. Pray that Logan is never faced with it. Pray for all our friends that are fighting this or some other battle.
October 3, 2004 Day +550 Day #248 off treatment
Today we missed church. Logan fell asleep at about 10:00 and Taylor wanted to go to Paw Paw's and cut grass. We had a lazy day. Ca Ca and Taylor did go to Paw Paw's and Taylor played on his swing. It is just a rope swing with a loop in it that he swings in. He flies like a plane on his tummy or sits in the loop and swings. It was so funny to watch. Guh came over for a while and played with Logan until Taylor got home. You don't get much Logan time when Taylor is around. He will monopolize all the time. He did keep Guh here another hour or so after he got back home. We went to eat and then back to Paw Paw's, I don't think Taylor had gotten enough swinging in for the day. We had to make yet another Wal-mart run. Taylor wanted a Policeman book to take to school, but we couldn't find one.
Logan ate a Lil' entree for lunch. It is like a baby TV dinner. It had chicken cubes, carrots and pasta. He lapped it up. He ate almost all of it, but it took nearly an hour, so I guess I will hold off on sending that to school just yet. He loved it. He is going to be just like Taylor, he loved the pasta best. He also had some sweet peas the other night. He was stuffing them in as fast as he could. He drank from his cup today. He did it like a pro. I am not sure if that was his reason for not drinking well or not, but he didn't have enough milk today. He was hardly wet the few times he was actually wet. He did finally drink a good bottle before bed. I guess he was just too busy to stop and drink.
Taylor fell asleep watching cartoons in my room. He fell asleep fast again. After brushing his teeth, I put him in bed then went to clean up the tooth brush mess and he was gone by the time I came out, a whole minute later. He has played so hard the last few days. He is even starting to play more at school and not stick to the teacher. He does get night night and Bozo and go sit down if he gets tired. Vincristine makes you tired and weak. I have no idea how long that lasts or if that is even the reason.
I got a little good news on our newest NB friend, Bailey. His tumor has shrunk to about half its original size and the spots on his spine and head have disappeared. He is gearing up to harvest stem cells. Way to go Bailey foe kicking NB butt!! You can do it little guy!! Please pray for him to continue beating his disease. Pray for Sophia who is healing from her transplant. www.caringbridge.org/ma/sophiamarie Pray for our other friends. Pray that Taylor never again has cancer in his body.
October 2, 2004 Day +549 Day #247 off treatment
Today we stayed home most of the day. We did have lunch with Paw Paw and Gam maw. Taylor went home with them. I cleaned house and rearranged Logan's room. I had to cover the phone jack to keep him away from it. It gave him a little more floor room too. Taylor came back home and we played in his room while daddy watched the Auburn game. Logan was in bed, so he had to be quiet. I don't know who that was harder for, Taylor or daddy!
Logan slept much better than he has been. He is not coughing as bad as he was. He took a 2 hour nap for Jim while I was at Wal mart. How come he doesn't sleep like that for me?
Again, not much to tell you. We are just busy being normal and we love it.
October 1, 2004 Day +548 Day #246 off treatment
Things always happen in 3's. When I was in high school we lost 3 friends to car accidents. In the past few days I have asked for prayers of families of several local people who have lost loved ones. Well, today I ask you again for the 3rd time. Another head on collision has claimed the life of a young man. We did not know him personally, but knew family members and friends, please pray for them as they cope with this tragedy.
Taylor had a great day at school. Logan showed his temper, but he wasn't feeling real great. He had been up a good part of the night with a cough and stuffy nose. He seems to be feeling better, but still has a cough. We went to Toy's R Us and got Logan a door. It is a play thing with a door and several other play area, but he only cares about the door. We have already gotten out monies worth, he loves it and so does Taylor. We went to Costa's and Taylor ate like pig. He didn't touch his food, but he ate a ton of my pasta. That is just par for the course, he never eats his own food. He also ate all of his lunch at school. I sent some chicken nuggets and I made sure to send other stuff that he would eat for sure just in case he didn't like the chicken and he ate every bite of it. I am telling you, school and camp SAM make him eat.
Once we got home we put together the new toy and both boys played them self silly. Please pray for Taylor's continued success against the beast that was once inside him. Pray for all of those who are fighting this disease and others.
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