Quick Jump: 3rd Quarter 2004: July August September
September 30, 2004 Day +547 Day #245 off treatment
Lunch for Life continues all month!! However, please remember that this is a year round thing and you can donate at anytime. If you need or want to do it at a later date you can.
Oh Taylor, how he loves to keep us on our toes. Taylor woke up this morning with a 101.6 fever. As you all know 101.4 is the magic number, so I had to call the clinic. Since he just had scans and we knew he was fine I had hoped she would just say ride it out, but since he just had his port accessed and that is a risk of infection we had to go to the hospital and have cultures drawn. He had a chest x-ray since he had a nasty cough and his CT showed some blockage last week. All was fine and it is all in his head. It is from allergies or a possible bug, but he had no fever by the time we got there and he had 20,000 WBC, so he is well equipped to fight off anything that may be brewing in there. Logan is hacking too, so they both have whatever it is. Neither boys were put on any meds other than Tylenol for any fever. We ran into a guy that we went to high school with in clinic. It is so odd to see old friends with kids and all, but it is just sad that we have to meet in a pediatric Oncology clinic. Pray that his nephew is feeling better and beats his Leukemia. Pray for all the kids that are fighting this and other life threatening illnesses.
Taylor ate 2, yes you read that right, 2 grilled cheese sandwiches at the hospital. He will never poop again after all the mac and cheese and grilled cheeses that he has had, but he is eating great. Taylor does not seem to feel bad at all, so I am sure it is allergy related. I will be so glad when July gets here, so that we can remove that port and not have to run to the hospital with every fever. That is the only thing keeping us from being away from cancer for good. Oh well, July isn't too far away.
Pray that this is a nothing fever and that we do not spend all winter running back and forth to clinic or the pediatrician. Pray for all the kids fighting cancer. Pray for all the families that are dealing with cancer.
September 29, 2004 Day +546 Day #244 off treatment
I emailed Meredith yesterday and got the remaining results. All marrow biopsies were negative for Neuroblastoma. Praise God! Taylor's HVA was 17.7 normal is 0-22. His VMA was 7.4 normal is 0-11. I am so thankful that he is finally well within the normal limits and not border line like normal. I guess this proves it is his diet causing the numbers to rise because we deprived him of all things vanilla or sweet in general this past week. As for Logan's numbers, his HVA was 19.8 normal for him is 0-32 and his VMA was 12.8 normal being 0-18. Again, all within the normal range. The age difference is the reason for the different normal ranges, it has nothing to do with the disease itself. Both of their ranges will change with age.
We went to Wal-mart with Guh last night and he was so bad. He fell off the buggy while trying to help put stuff on the belt at the check out counter. He was being very ugly. He got a ball from the machine and dropped it in the parking lot. It went rolling away and he took off with Guh's hand adn dove on it and about took Guh down too. He is 150% boy!!!
Today was another school day. Starting November 9th, we will all go 5 days a week. We will have a different set of kids on MWF and T/TH. Taylor and Logan will go all 5 days. I said I would teach, but we may have to combine the classes and if that is the case then I do not think I will or will have to go to another class. I do not want to be his teacher 2 days a week and upset him the days that I am not his teacher. We shall see how it all works out.
Taylor had a great day. He was so good and ran right in his class. I still get a hug and a kiss, but outside the door, he doesn't even let me in the room anymore. He was a good boy and I saw him at snack. I got a hug, but he never got up. He eats great at school, he is even trying new things when the other kids have it. He may not like it, but he tries it. We went to Gam maw's work after school to drop off some Mary Kay and he wanted to stay. He helped Gam maw work for a bit then went to her house to play. He came in my room at about 9 and asked me to turn his movie on. I knew he was ready for bed, but I didn't know how ready. I fixed his tooth brush and went to get him and he was sound asleep.
We start out next round of check ups soon. We are doing all scans in December, but we have a few things to get out of the way now. He will have his hearing checked on Oct. 7th. He will have his vision checked on Nov. 1. That should be fun seeing as it is a 2 hour appointment and he has never done it before. I am not worried about his vision, he scan spot a mustang or doodle bug coming a mile away. We go to the Dental clinic on Dec 1st and that day we will also have a bone scan. We have not had a bone scan in about a year since that is a follow up test to a bad MIBG. The protocol calls for one at this point, I guess just to check old lesions. On Dec. 15th we will have cardiology check his heart, see Dr. Berkow for a check up and lab work, bone marrows, CT, and MIBG injection. On Dec. 16th, Logan's birthday, we will have the MIBG scan.
Please pray that he is NED forever. Pray that both boys have an easy winter with few colds and ear infections. Logan has already made it further with no ear infections than Taylor did, so maybe that is a good sign. Pray for all our friends fighting this battle.
September 28, 2004 Day +545 Day #243 off treatment
Today we went to the Hot and Hot Fish Club on the Southside and did a photo shoot. Taylor was asked by Magic Moments, the organization that granted his wish to go to Disney World, to be in a photo to advertise their next fundraiser. It will be a wine tasting contest. I am not sure of the details, but it will all be told when the story and photo run. It will he in the Over the Mountain Journal next Thursday and the Birmingham News on Sunday or maybe next Sunday. He also said to check on Wednesday. He was not very sure of when it would run, but he was pushing for a Sunday.
Taylor didn't do to hot. He had Bozo in front of his face and even once he moved it and posed he wasn't smiling, he was staring at them with his mouth open. I was not going to press my luck with him though, he was already kinda in a mood. He stood in a chair with 3 chefs behind him and some wine in front of him. He was picking his nose in one photo, lets hope they don't run that one.
We went through the car wash on the way home. Taylor has been begging for a week now, so I finally gave in. He was mad because I went to a different one than he likes and it didn't have the spinning brushes. He got over it though when the soap was colored. On the way home he was making gagging noises, he dose that often so I thought nothing of it and told him to stop. He started telling me that he spit up a little then he said I threw up. I was pulling into our neighborhood, so I stopped and looked and he had. He said he was poking his hand in his throat and made himself sick. He is eating a grilled cheese now and playing, so I am sure that is what he did. He wont do it again, he is so mad that Bozo and night night had to go in the wash. He reminded me that he got sick in NYC. As you all remember he did get sick in March in NYC when he went with Paw Paw and Ca Ca. He had a little bug and it scared the mess out of all of us. He remember is too, but he told me he was really sick there and now his poked his finger in his "goat". He still can't say throat:)
Please pray that he continues to beat his disease and it never comes back. Pray for all of our friends in this fight with us.
September 27, 2004 Day +544 Day #242 off treatment
We have had a nice day. Logan and Taylor were good boys at school. Logan fights sleep so hard at school that he is fussy as all get out, but he sure does sleep good once we get home:) I heard him crying in the gym while my class ate snack. I figured he was fighting sleep then I heard the door rattle. He was furious that the door wouldn't open and he was beating on it. If any of you sale windows and doors we need a mini sample door for him to open and close.
Taylor had a great day. He put his night night, Bozo and pillow in his bag and left it there all day. He could see it in his basket, but didn't take it out. His class went outside and picked up leaves to do leaf rubbings. He told me how he held hands with his friends to walk outside. He showed me the new blue line they stand on to line up. He has been telling me how he lines up then gets his magic soap (purex) and then says the blessing. He sings it and the Pledge for us all the time. He is learning so much. He has a pair of plastic scissors that wont cut anything. He usually just puts it around the paper and rips. He is now actually cutting the proper way. Thanks Christi and Shannan for all you do!
That was Monday, not much going on. Please pray that we continue to live this normal life. Pray that Taylor is NED forever and Logan never faces anything like what Taylor has. Pray for all of out friends that are in this battle too.
September 26, 2004 Day +543 Day #241 off treatment
What a day we had! We spent the morning doing nothing. We played and read the paper and we slowly got ready for the day. We went to the zoo with Camp SAM. It was so fun to see all the familiar faces that we have met and gotten close to during our journey. It is so nice to be with the people that know exactly what it feels like to be a cancer family. It is nice to see them outside of the hospital. There for a while we only knew each other in our pj's, walking hospital halls with IV polls in our hands. Now we go to the zoo and play in the fountains and feed the gators. As always, a HUGE thank you to Camp SAM for all they do for us cancer families. We love Camp Smile a Mile!!! You can go to www.campsam.org and see photos and schedules of the things they provide for us. You can also donate $ or items or even volunteer. Trust me, you will be doing a huge thing for a child with cancer and judging be the number of counselors that were at the Kandles for Kids event tonight, it is just as rewarding for them.
Anyway, we went to the zoo where we were fed a nice lunch. Taylor ate all but a few bites of a cheeseburger. He always eats good at camp functions. We are going to have to move to camp or bring in councilors to eat dinner with us each night. He had so much fun. He rode the carrousel and the train. He liked the monkeys the best. They were playing and chasing each other all over the place and he got a kick out of that. He liked the rhinos and elephants too. The elephant was rubbing against a tree and it was so dirty it was making a cloud of dust. He thought that was funny. We couldn't get him away from the periscope that allowed you to get a view of what the giraffes saw. After we saw all the animals we had to go to the potty and take his undies off so that he could get in the water and play. They have those jumping water things and he was about to bust to get in. He did that for about 30 minutes. He also loved the swinging bridge and slide. He did that for a while too. He would have been happy in that play area all day. We had a change of clothes in the car, but no undies hence the reason for going commando for a while. He never did go to sleep on the way home and I am not sure how, he ran just about the entire day.
After the zoo we came home and relieved Ghen Ghen and got Logan ready and we headed to Liberty Park for the Kandles for Kids. This was our first Kandles for Kids, I think we were in NYC last year. Anyway, it was amazing. We had a great time socializing and eating. We saw tons of people from the hospital from patients, parents, and staff. It was so wonderful to catch up with the friends we made yet sad to see those who came without their little ones. Taylor was asleep when we got there and took a while to warm up, but once he was up he was in rare form. Several people didn't recognize him with hair or because he was so big. The ceremony was at the base of Liberty park statue. He asked if we were in NYC. When I said "no, we are in Alabama still". He asked "if her flew here" meaning the Statue of Liberty. How funny is that? After dinner we all made a circle and heard a story of a survivor and presented an award to Dan and Diedre for their work on the tags. Way to go Dan and Diedre!!! We then lit candles as the names of those children who passed away this year were read. It was so emotional with Angels Among Us playing in the background. Mr. Art got a great photos of Taylor holding his candle. I sobbed like a baby for those who have gone before us and for the fact that I was so blessed to be sitting there with TWO HEALTHY children. Even though Logan had just broken Jim's sunglasses and Taylor was pouting because he wanted to take the hoola hoop home, it didn't matter, they were there and healthy. After the candles were lit we placed them in a sand and let them burn. It was beautiful and touching.
We left after that with 2 very tired and cranky boys. Logan was out like light and hardly missed a beat as I dressed him for bed. Taylor had to have a bath. He had been digging in the gravel and was nasty from head to toe. He is now playing leggos and cars and we are getting ready for the new week.
Please pray tonight for Taylor's continued success against this disease. Thank God for his success. Pray that one day he can read his survivor story. Pray for those who were part of this event and that they too have continued success. Pray for those who were there tonight to remember their child. So many of them we had known personally and it is so sad. Pray that our tag money and other things will go into the needed research and find a cure for childhood cancers.
To my Mary Kay preferred customers, your new brochures should come any day now. I am taking pre-paid orders or you can order online with your credit cards just let me know. Remember all your family, friends, teachers, Dr's etc that will need a gift for Christmas!! Any men out there reading, don't forget all the special ladies in your life. Mom, wife, daughter, secretary etc:)
September 25, 2004 Day +542 Day #240 off treatment
I can't believe it is Saturday already. This was a long yet fast week. I am glad that it is over, I hate scan week. Even though we had absolutely no reason to believe he would get anything but good results, it is a scary time. We know how life can change in an instant and we are always living in fear that the next moment could be the one that changes it all again. Praise God that we did not have that happen. Please pray for those that have had their lives changed this week or any week.
Today we have cleaned up a little and did some laundry. Jim and Taylor grilled and cut grass. Taylor played outside and got very ticked off when both his gator and 4 wheeler batteries died. He started riding his bike and was getting a little too brave for me. He can now get up the driveway that is a fairly steep hill and then will fly down it and never slow up, he whips it around at the retaining wall and heads back up. UUGh, this dare devil child is going to kill me.
If Evil Kenevil doesn't kill me then "trouble" Watts will. Logan is a mess. He has been into everything. I had to move my picture frames and he has been in the plants. We can not get anything done with him around. If you walk away from him he moans "mama, mama, dada, dada, nana, nana" until you come back then he grins at you. He is so opposite of Taylor it is scary.
I went to the mall with Gam maw and Taylor and Paw Paw played outside for 4 hours. He and Macey played pirate and captain. He was the captain. I don't know where they came up with it, but it was funny. They play very well together.
I got the best purse thanks to Gam maw!! It has gold ribbons on it. It was probably made for "support our troops" and I certainly want to support the men and women over seas, but I will use it as my "childhood awareness" purse. As you all know the gold ribbon is the childhood awareness ribbon.
Taylor was so filthy it was scary. I have never seen him that dirty even after a ball game. It was fabulous to see all that dirt on the child that once lived in the sterile stem cell world.
Pray that we live these normal, dirt filled days forever. Pray for all our friends fighting cancer and other illnesses. Pray for our troops. Pray for the state of Florida. I can not imagine being hit by 4 hurricanes in a months time. Pray no more hurrincanes!
September 24, 2004 Day +541 Day #239 off treatment
Meredith called and the MIBG is fine. I knew that it was seeing as the lady who was with me has done all of his scans here in Alabama, I knew she wouldn't tell me it was okay if it wasn't. However, it was still a little tense waiting on that call. We still do not know that biopsy or urine results. Those usually take a week or so, so I will call Wednesday if we haven't heard anything.
We went back to school today. Taylor went right in and had a great day. He had a birthday party in his class and he loved his cup cake. He ate all his lunch and played great. He threw his art away when I went to get him. He said he didn't like it, I have no idea what it was since I never saw anything but a crumpled up mess.
Logan had a fall today. His teacher put him down on his feet after changing him, not thinking about him not being able to walk and he fell over. He could have cared less, he just went on about his business. He is all over the place at home. We have to keep the doors shut because he goes in a room and plays with the doors until he gets it shut then we can't get him out because he wont move back and let us open the door. He finally pulled up all the way and now we can't keep him down. We moved the mattress down last night and took the mobile down. He had been practically hanging from it. He is starting to be fun, but a lot of work too. Taylor was not like that. He used his new found skills to get to his own toys not my mini blinds or the air vents. He also didn't have an older brother to follow around and tick off:)
Once home we played. Taylor is cracking me up. He came down the hall holding his stick horse above his head and yelling "who wants cotton candy"? I asked him how much it was and his answer was "too much". I laughed so hard.
Taylor found cake mix and sprinkle icing in the cabinet, so we baked a cake. He had fun cracking eggs and was rather good at it although he was a little rough. He liked the beater and he worried it would wake Logan. Hmmm, he never worries if his big mouth will wake Logan. He was a little ticked that it took so long to cook, he was just ready to put the sprinkles on.
We have a busy weekend this weekend, so do not expect an update for a while. Please pray tonight that the remaining tests are clear as well and thank God for the miracle he has performed in Taylor's body. Pray for all of our other friends fighting this disease. Sophia has just had another transplant. Please visit her at www.caringbridge.org/ma/sophiamarie and Carl has had some not so good news about his disease. www.caringbridge.mn/carcar
September 23, 2004 Day +540 Day #238 off treatment
Praise God scan time is over. We now have 3 months until we face it again. I feel good about today's test, but a little uneasy too. It was an odd test that was easily explained, but still hard to swallow any spots of uncertainty. You have to have an empty bladder before this test and we have spent many days of pushing on him, pouring water on him only to have to give him a catheter anyway. I thought today was fabulous when I just brought him to the potty and he did his business and we left. Well, that proved to not be so good. He had gotten a little on his undies and it lit up on the scan. The tech pulled his pants down and rescanned and it was fine. His knee did the same thing. She wiped him several times with a wet rag, but it still lit up. She took several side view shots and she promised me that it was definitely on his skin not his bones, but I still worried. I did my best not to look at the computer. I did not want to worry myself over things I had no business trying to read. I saw a few shots and of course now I wonder what it all meant, but I am sure it is all fine. The table was also glowing, so he must have had something on him that was setting things off. He did not get a bath last night since he was so tired and sore, but you can bet that next time around he will get a scrub down.
Logan was bagged before we left home and it leaked, so they didn't get much. I think they got enough though, they only need about 2 tbs. Guh called this morning to remind me of what Logan ate for lunch yesterday. I thought she was crazy, but then I realized where she was going with it. He had vanilla pudding baby food and it will probably mess up his urine test. I do not know if it is as important in his tests as Taylor's, but we cannot worry if he has crazy results. Today was very quick. We were there by 8:30 and ate some breakfast and then checked in at clinic. We went up stairs to the MIBG area at about 10:00 and they were able to take us on back, so we were gone by 11:00 and he wasn't even supposed to be scanned until 12:30. I love Children's Hospital!! Meredith should call today or tomorrow with the results of the MIBG and next week for the urine and biopsies.
After we left we went to Nana's and fed and changed Logan and to call Ca Ca. My cell phone had died and my car charger decided to quit working. Taylor wanted to eat with Guh, so we called her and we ended up going to Guh's work. Taylor ate good, but he was tired and acted rather ugly because he didn't have his scary teeth. He is really into scaring folks with them and he couldn't find them. He wanted to go to Ca Ca's work after Guh's, but he changed his mind and didn't want to go, so I headed home. He soon changed his mind again, but I wasn't going back. He pitched an awful fit and told me "turn this car around" and "go the other way right now" and so on. I just tuned him right out and he fell asleep and is still asleep 3 hours later! I am letting him sleep as long as he will. I will regret it tonight, but he needs to catch up, it has been a busy week and his little body has been through a lot.
I guess that is it for now. Please pray that the tests all come back great and show NED status. Thank you for all the support and prayers that you have given us over the almost 2 years. Please pray for all of our friends in this battle. I found out last night that a high school friend past away this weekend. He had a brother pass away a few years ago. Pray for his family as they grieve for yet another son.
September 22, 2004 Day +539 Day #237 off treatment
Well, the fateful day has come and gone and we made it through. Taylor had his CT and bone marrows today. The CT looked great and the aspirates were clear. We will have to wait a few days for the biopsy results and the urine results. We go back tomorrow for the MIBG. I feel better going into it knowing the others have looked good, but still pray for those results to be clear too.
We have had a long day. We got to the hospital at 8:00. It was well after 9:00 before we were accessed and had labs drawn. We finally went upstairs around 10:30 and had the bone marrows done. He didn't want to go to sleep, but the Profonol won as usual. It was funny to watch him try to fight it. Profonol only takes about 3 seconds to work and only lasts about 6 minutes. He was given a bigger dose since he had to have bilateral biopsies. Not something normally done in Alabama, but a requirement for us to do scans here, so they do it for us. Luckily Richard and Meredith know how to do them. We went back to clinic for a bit to wake him up and give him pain meds. He never even took the pain meds, he was playing with the 4 prizes that he took from the toy chest. He reasoned with them that he had 4 holes, he got 4 toys. No one tried to argue that point! We finally got back to the CT area and he didn't want to drink his contrast. He eventually had about 3/4 of it and I called them to start timing him. After 4o minutes and several fits to eat, I called her and had to get a might testy. They ended up taking him on back and it didn't take 15 minutes to do it. We were finally free to eat. We ran to the cafeteria and he ate all of his grilled cheese. We ate outside and the pigeons were awful, it was like being at St. Catherine's in NYC. Logan loved it, he was quiet as a mouse through lunch.
After lunch we went to clinic to be de accessed and see if Berkow had read the scans. He went up to read them and all was clear. He had a little junk in his right lung, but we knew that. We have our full work up schedule for the next round. I will let you all know about that later. We are getting ready to go back to the hospital for the MIBG, but I wanted you all to know what was going on in Watts world.
September 21, 2004 Day +538 Day #236 off treatment
Today was a nice day. Logan was up early, but in a good mood. I watched him for a long time as he attempted to pull up and couldn't. He was trying so hard, but he never got mad, just kept going. There is one difference between Logan and Taylor. He has eaten all of his bottles today. Yahoo! He actually got mad when I went past him with a drink, you could tell he wanted a drink and he drank a 6 ounce bottle. That is the first full 6 ounces he has had in one sitting in a few days.
Taylor is also in a good mood. We did a load of laundry and piddled around until it warmed up some outside and then we all went out for a while. Logan was in his play pen in the garage and he was mad. He was fine until Taylor would get out of his eye sight. We put him in the stroller while I cleaned out the car and he was happy. I was going to clean out the garage, but I had to keep stopping to get Logan or help Taylor or Taylor to explain why something couldn't be thrown away. I just stopped trying after I realized that was a job that will have to be done when they are not here.
Taylor got his big house taken away when he refused to let Logan play in it. He kept blocking him so that he couldn't get in. I took it away after he stepped on his sleeve so that he couldn't crawl any further. Creative attempt, but he still got in trouble. I got the house back out a little bit later and they played well in it until Taylor scared Logan. Taylor likes to stand up and shake it and Logan didn't like that. Logan loves to open and close the door and I like it since I do not have to worry about him pinching his fingers.
Tomorrow is the big day. We will go to clinic at 8:00 and start the accessing and lab drawing and urine collecting. We have bone marrows scheduled for about 9, but I am sure they will not be at 9:) We have to be ready to drink contrast at 12:30 and after that is all drank he will wait an hour before the CT scan. After the CT we will get the MIBG injection. Logan and Guh are going to keep us company. Logan has an appointment on Thursday to have his urine tested, but maybe they will go ahead and take it tomorrow. It doesn't really matter since we have to go back up there on Thursday for the MIBG scan.
Pray that all scans and tests are clear and show NED status again and forever. Pray for all of the others fighting this and other diseases. Pray for Mark and Sarah as they deal with the news of their unborn child. Pray for our troops.
September 20, 2004 Day +537 Day #235 off treatment
Happy Monday. We had a nice day for a Monday. Logan woke up in a very good mood and played and played. He has again drank better, but not great. We all went to school. This will be another short week for us since we have scans on Wednesday. School flew by for me. I saw Taylor several times and he always did just what he teachers told him and never cried or tried to go with me. I even had to go into his room to get a band aid and he just smiled at me. He played good all the times I peeked in on him. He didn't eat much of his lunch, so we went to Sonic and ate outside after school. He ate okay.
When we got home he did me a favor. He pooped. It has been since Tuesday that he went last, that I know of anyway and I was getting worried. He was so proud of himself!
Logan is in a bad mood this afternoon. He woke up from his nap and ate a little then started screaming. I put him in his swing thinking he would only get madder, but he was fast asleep in no time. I think Mr. Nosey needs to start napping at school. Taylor is playing with his new house and watching cartoons. He is in a great mood this afternoon. His eyes look great and he is so full of energy. If he would only eat a little better.
He started his SSKI drops today. As you all probably remember that is the drop that helps to protect his thyroid from the radioactive isotope that they will inject for his MIBG scan. In NYC you take a huge dose each day for 3 days and it is a huge battle because it tastes bad, but it is only a few days. However, we waist a lot of it due to his antics. Here in Alabama, we give him one drop a day for 7 days. I have not decided what is better. He does better and we lose less with the small dose, but by day 4 or so he is fed up and it gets harder and harder to give it to him. When do they hit the age where you can tell them what it is for and they will just do it. He is doing great with his Sungulair. He swallowed down like a pro this morning.
Pray that all tests/scans are clear and NED!!! Pray for all our friends battling this and other diseases. Pray for a dear friend who has found out via ultra sound that her baby has no kidneys. It will not be able to survive outside the womb. We are so very saddened to hear of this news and we are praying for them.
September 19, 2004 Day +536 Day #234 off treatment
Hi all! How was your Sunday? Ours was nice. We slept in as long as the kids would allow then we cleaned up and cut grass. We went to a wedding this afternoon. It was for my friend Nicole that I taught with before I quit work. It was so nice to see everyone again. There were a few kids from our class there as well as a few kids that were in Taylor's class before he was diagnosed. He, of course, didn't remember them, but it was good to see him with the kids that should now be his best friends. It was also nice to see other teacher from work and parents that have been so wonderful to us throughout Taylor's illness. I am happy to see them again in a normal setting.
After the wedding we came home and had company. We celebrated some summer birthdays with a cook out. Taylor had a blast with so many eyes on him. Logan enjoyed the packages. He was a wee bit grumpy because he was sleepy, but he was a good boy. He drank a lot more milk today. He didn't have the amount that the Dr. said he needed per day, but he was much closer than he was yesterday.
Ghen Ghen and Bob gave Taylor a cardboard house that you color. He has had so much fun crawling in and out of it coloring. He likes to stand on his chair to color the roof. We have all had a good time coloring it, but it shows on him. He has marker all over his tummy and face. He didn't eat so well himself today. He hasn't the last few days. He has gone the opposite way this week, he hasn't pooped in a week. The next one should be fun!
Logan is almost pulling up all the way. He was sure to show that skill off in the bed. I see that we will be lowering the mattress tomorrow. I checked on Taylor and he is in his tent sound a sleep with his finger in his nose:) Little boys are too funny!
Pray that Wednesday's scans show NED status and will forever. Pray for all the tests to be clear. Pray for all of our friends fighting cancer.
September 18, 2004 Day +535 Day #233 off treatment
Here we are back to another weekend. Today Jim and Gam maw went to the Auburn game. Taylor, Logan and I are going to Guh's to celebrate Nana's birthday. He is ready to ride his 4 wheeler and play with "Drewblake". He refers to Drew and Blake as one person.
Logan drank his milk last night all by himself. He held that bottle just as big as could be. Of course, he wont do it today! He has not drank much at all the past few days. I hope he picks up soon. We looked to see who was bigger at 9 months and Taylor was. Taylor had started to lose weight at that point and slowly gained and lost from that point until his diagnosis, but he was still bigger. He was a pound heavier and about an inch and a half longer.
Logan has been trying very hard to pull up. He can get up on one knee, but he just sits there. I am sure by the end of the week he will be getting up. Taylor learned all that stuff fast, but Logan is trying so hard to keep up with Taylor that he makes himself do more. It is so funny to watch him try to get to Taylor and Taylor do all he can to keep him away. Although, when we announce that Logan is going to bed, Taylor is the first to kiss and hug him, so he likes him deep down. Logan enjoyed a cinna stick last night. He made a huge mess, but he loved it.
Taylor was so tired last night, but he did not want to go to sleep. He made a pallet and watched his new favorites, Leave it to Beaver and Peter Pan. He eventually fell asleep playing in his room.
As for today, we did a little running around before we headed to Guh's. Taylor dropped Bozo in Publix and I didn't notice. Luckily, a lady brought it back to him. Boy, I do not want to even imagine what would have happened had we not found him. Logan and Taylor were given a cookie to eat. Taylor ate both of them with the exception of a few nibbles that Logan got. Taylor played hard at Guh's. He and Drew and Blake played outside all afternoon and he didn't run in and out asking for us to go with him. He is getting so big. He even went down stairs by himself to ask them if they wanted to eat cake and ice cream. He ate at the kids table in the kitchen without any grown up help. Wow, he is getting so big.
He and Logan both fell asleep in the car. I left Logan in his clothes so that I didn't wake him up. I hope he is comfy and not cold. He will wake up since he didn't eat but 13 ounce of milk all day and the last of that being at about 4:45. He ate plenty of food, but he just has no interest in milk these days. Taylor woke up at about 10:30 and got up, but he went back to bed. He was acting strange. He wanted to be held and was pointing to things rather than speaking, but I think he is just very tired. He played hard today.
Who watched Miss America? I am so proud to say that I know the new Miss America. I don't know how she did it so calmly. I had elephants in my tummy and I was sitting here in my pj's. She did awesome and I am so glad that she now has a year to represent our state and talk about her platform of curing childhood cancer. Way to go Diedre!!!
Pray that Taylor's odd behavior tonight is just from being tired. Pray that all scans are clear and show NED. Pray that all other tests are normal as well. Pray that Logan never faces this type of thing. Pray for all of our friends that battle cancer too.
September 17, 2004 Day +534 Day #232 off treatment
Hi all! I hope everyone woke up with power! We did not have school today since the Jefferson County schools are out, so we are hanging out at home. Taylor actually just left to go off with Paw Paw for a while. They still don't have power. I actually just found out that a friend right down the road does not have power, so I guess we were lucky!
Logan is growing so fast. He sat in his high chair and ate his cheerios all by himself. He usually gets them stuck to his hand and never eats any. I only found 3 out of about 2 handfuls that fell on the floor or in his pants:) He also has been drinking from a cup today. He gets mad when he has to work for it, but he is trying. Hopefully, he will get it. He is doing pretty good, but he wont hold it, so it wont do me much good to teach him to use it! Taylor never wanted to hole it either and one day he did, so it will come.
I wanted to write to remind everyone to watch Miss America tomorrow night and see Miss Alabama, Diedre Downs. As you all know she is the person who started to Curing Childhood Cancer car tags. That is her platform for the pageant. Good Luck Diedre!!! Speaking of the tags, we got the final count. I think that Jim put it up the other day, but just in case someone missed it, the count was 2,059 tags!!! Wow, thanks Alabama!!!
Pray that Taylor is NED forever! Pray that Logan never faces anything like it. Pray for all of our friends that are battling cancer and other illnesses.
September 16, 2004 Day +533 Day #231 off treatment
How did you all fare in the storm. We had no problems. We went downstairs at about 9:30 because it was getting very windy. We have a dead tree on the side of the house that we were worried about, but it is still standing. We never lost power and it never really got all that windy. We hung out downstairs most of the day. Taylor was very occupied, but Logan wasn't too happy. He wanted to get into everything and that made us nervous and Taylor mad. He would climb up in the air bed then roll off. He wouldn't sleep since he was so nosey and had to watch Taylor. He finally gave in and fell asleep fro about 20 minutes until Taylor dropped something and woke him up. We went back up stairs and I did some laundry. Taylor and Jim fell asleep. Taylor slept about 2 hours, so we will probably regret that tonight, but he was tired. He started his Singulair this morning and I am not sure if that made him sleepy or not, he has been sleepy today, but wouldn't get still enough to go to sleep. I don't think he intended to fall asleep when he did.
Speaking of the Singulair, that was a mess. It is a chewable tablet and he didn't like the taste and he didn't remember how to swallow. He kept gagging and spitting it out. If he would drink tea, he just left his mouth opened until it all rolled out, so we literally had a mess all over. It took 2 pills to finally get it in him and it finally just dissolved with all the trying, so I am not sure how much he actually got. I know he can swallow that tiny pill after swallowing Accutane, those were horse pills. Hopefully it will get easier once he gets used to it.
Can you believe all the flooding going on. I hate that for all those people, but I am so thankful that we had no problems. I hope that all of you are doing well. We have many friends that live in the Pensicola, Orange Beach, Fairhope and Mobile. We are praying that they are all safe and didn't have too much damage. You all know one of them. Our dear friend Austin was from Fairhope. You can read his page at www.caringbridge.org/al/austin
Pray that Taylor is NED forever and that his scans and other procedures are all crystal clear. Pray that Logan has normal urines and never deals with any of this. Pray that Taylor never deals with it again either. Pray that everyone is okay that was in Ivan's path. Pray that the local flooding ends soon and that everyone is okay. Pray for all of our friends that are battling life threatening illnesses.
September 15, 2004 Day +532 Day #230 off treatment
We finally made it back to school today. Taylor did great and walked right in and went to playing. Logan was not so mobile last time he was there, so he was cracking everyone up. He feels much better and his booty looks tons better. Taylor is now all snotty and congested again. That is par for the course with him. We went to the Dr. today, so I was able to get all that looked at without having to make Meredith crazy. I feel like I was initiated back into normal life today. We sat in the pediatricians office for 2 1/2 hours. I haven't done that since Taylor was little. We always get ushered in and out so fast due to Logan being so young and Taylor being immune suppressed. Not today, we were just like everybody else! Taylor got looked at first. He weighed 34 1/2 pounds and 37 1/4 inches tall. Dr. P tool him off the Zyrtec and we are going to try Singulair for a while and if that doesn't work we will go to the Claritin OTC. I told him of my concerns over his eyes. He thinks we made to have him tested for allergies, he has edema or blackening of the eyes due to allergies. I certainly hope so! Other than that he checked out fine. He was able to do all the things that 3 year olds should. Dr. P wanted him to get a hearing and vision test, but he wouldn't cooperate. He recommended that we go else where to do it. He feels he didn't cooperate because he couldn't see, but I know better. He had never seen that man before and didn't want to do what he told him. They didn't even attempt the hearing test. The guy didn't try very hard to get him to do it, so I was glad we didn't waist any more time. Next was Logan. He was 18 pounds and 13 ounces and 28 1/4 inches. He had not lost weight, but didn't even gain a pound since his last visit. I was concerned since Taylor started to fall about this age, but he assured me not to worry. He took a blood sample of Logan's. He said that they always do that at a 9 month check up, but I don't remember it. I don't know if he was doing it to check something in particular or if they really do do that at a 9 month check up. He checked out fine and was VERY vocal during the exam. Now is where the confusion came in. The nurse came in with shots for Taylor, but not Logan. She had to go back out and draw Logan's. Once she did that she couldn't figure out why the sheet said Taylor got three shots, but she only had 2. The couldn't decide if he needed a Hib shot or not. The sheet said he did, but if you get it after age 2, you only need 2 doses rather than 3 and he has already had 2. Well, that is protocol for healthy kids. Dr. P decided to go ahead and call Dr. Berkow and see what to do. I just rattled off the number to him to keep him from having to look it up and he and the nurse busted out laughing. Yes, I know every number at the hospital by heart. Dr. Berkow wanted him to have the shot, so then we had to wait for her to go back and draw up another shot. Both boys got 3 shots each. Logan cried that non breathing, silent cry until I picked him up and then he was fine. Taylor cried and he makes his worse by jumping. He is very strong and even though 2 people were holding him down he jumped pretty good. He is actually limping a bit now, but I know that it hurt when he jumped. He keeps telling me "that mean lady did that to me". He is crazy! Logan doesn't seemed to be bothered by his at all.
Nurse Beth from stem cell is doing some clinical stuff at our peds office. It is always nice to see her especially since we never see her at the hospital:) She was super to Taylor and he doesn't remember her, but we have decided that is a good thing. If he doesn't remember her then he probably doesn't remember what he went through.
Are you all ready for the storm? I guess we are as ready as we can be. We have put away everything from outside and rearranged all of Taylor's toys so that Jim could get his car back inside. We have the blow up bed that we use for NYC in the play room downstairs just in case we need it. Taylor is about to bust to sleep down there, but we don't want to unless we have to. I remember the last time we had bad weather and had to sleep downstairs. It was not fun at all. It in November after Taylor's 2nd chemo. He was on a feeding pump that ran out of battery in the middle of the night and we had to turn it off. It was our first night home and first night in charge of the pump and I was freaking out that I had to turn it off. I was sure he would starve before the power was back on. Boy, you come a long way in nearly 2 years. Anyway, we had just moved and the basement was still all open and full of boxes and who knows what else. We put the egg crate mats that we slept on at the hospital in the floor and Taylor's old crib mattress in the floor and slept there. I could see the rain and wind whipping through the garage doors and I didn't sleep much at all. This time we will at least be in the finished room and it will be a little cozier with a mattress and walls rather than the open garage. Hopefully we will not have to go down there.
Pray that Taylor is NED forever. Pray his scans are all perfectly clear and have no spots to question. Pray that Logan never faces anything like this. Pray for all those dealing with cancer. Pray for the people who have already been hit with bad weather and that ours doesn't get too bad.
September 14, 2004 Day +531 Day #229 off treatment
Today we had a rough start to the morning. Taylor fell asleep in our bed last night and we did too before we moved him. He has been asking to not have to sleep in a pull up anymore and we finally gave in and guess what? He wet the bed. He never ever wets his pull up and he slept in underwear in his bed the last few nights and did fine. He did not go to the bathroom but one time yesterday that I know of, so I guess that was the problem. He of course had shifted to the foot of the bed and not only wet the bed, but wet the comforter. The poor thing has been washed so many times due to his puking after chemo or wetting after fluids and so on that it barely fits the bed at all and it doesn't match the pillow shams anymore. Oh well! We doused it with febreeze and turned it the other way and went back to bed. He was all cozy in his dry bed. Once we got that all situated it was time for Logan to get up. He always takes his bottle and then goes back to bed. He took his bottle then screamed for 2 hours until he fell asleep. UUGH!! He is being a turkey this week.
Taylor was not allowed outside today after last nights teeth brushing fit. We left to go to the bank and meet Guh for lunch. Taylor had been begging her to come to his house "right now" so we had lunch with her instead. He was bold enough to tell me "I'm outside"! I wanted to laugh and pop him at the same time.
Logan was good on our trip, but he is cranky now. He has to be thirsty he has only had about 8 ounces of milk today. He will not have it. We cleaned up once we got home and now we are getting ready to go to the grocery store and get a few things incase we need it for the hurricane. It sure looks like it is heading our way. The last time we had one, Opal, I was a senior in high school, we just looked at it as a free day out of school. Today I realize a whole new side of it. Coram, the home health agency that too care of Taylor's pump and broviac care, called to see if we needed any emergency deliveries for the week due to the weather. Wow, it had never crossed my mind to think of that stuff. Luckily, I was able to tell him no and he discharged us from their system since we have been OT for so long.
Pray that Taylor has perfect scans and is NED forever and ever!! Pray that Logan has normal urines and never endures such as Taylor has. Pray that we have minimal damage and flooding as do the other states in Ivan's path. Pray for those in Fl. that are still cleaning up from the other hurricanes. Pray for all of our friends that are battling cancer and other diseases. Pray for those patients who may have needed something from their home health agency.
September 13, 2004 Day +530 Day #228 off treatment
This morning we attempted to go to school. Logan was still pooping, so we got sent back home. I hated that after already being off a week, but I didn't want to spread it around either. Taylor wanted to stay at first, but of course he changed his mind. We came home and did nothing. Logan went to the bathroom a few more times, but it was better each time, so I think we are done with it finally.
Taylor played outside all day. He rode his 4 wheeler and dug in the dirt. He is so dirty! Logan has been a pill!! He has whined all day long and refused to nap. He has eaten well, but not drank much milk. He has a little of the pedialyte to help him from getting dehydrated. He is making Taylor crazy and in turn Taylor is making me crazy. He wants to play with Taylor and his toys, but Taylor doesn't want any part of it.
I had my Mary Kay meeting tonight, so I met Jim to swap cars. Both boys fell asleep on the way. Taylor's eyes look awful. His right one is black and just looks plum nasty. I hope and pray it is his cold, yes, he has yet another one!
Pray that Taylor is NED forever and that all these little nit picky things are just my imagination running away since it is scan time. Pray that all scans and tests are fine and that Logan's urine is okay too. Pray for all of our friends that are battling cancer and other illnesses.
September 12, 2004 Day +529 Day #227 off treatment
Today we hung out. I looked at the laundry, but did nothing with it. Logan is still pooping. I am going to go in to work and see what they want me to do. I hate to miss a day after being off all week, but I don't want to spread whatever the boys have or Logan has rather.
We did go to the Galleria. Taylor has been begging and so we finally went. He rode the carousel 3 times. He made Jim get off, he wanted to do it by himself. I remember the first time he rode. We brought the camera and made a big tado about it and now he is shoving us off to do it alone. We saw one of his old 4-tower nurses. It is always great to see one of the great gals that helped to save him. Logan liked watching Taylor ride the carousel. He thought it was funny.
We bought Taylor some new shoes since his Spider man ones seem to hurt his feet. I have made those play shoes only, so maybe they will not be worn too much. You will never guess what he picked. Out of all the shoes that Stride Rite had, he chose the same pair he got last summer. Blue light up shoes. However, he got blue leather this time and they velcro rather than tie. I must say, I am glad they are leather cause I can ripe them clean. I don't really care for the velcro either, but it is nice to just tell him to put his shoes on and him do it without my help. He wore them with pride just like he did with the first pair. Every step he watched it light up. He did get a tad worried when the saleswomen told him to wear his new shoes home and she would put the spider man ones in a bag. He didn't want to try on shoes because he thought she was keeping Spider man. As soon as we got back home he put on his Spider man and went outside, so I think he gets it now.
Logan is still pooping, but not Taylor. His poor bottom can't take much more if this. He is rotten now more than before I left. Guh rocks him to sleep and I don't. I had to put him in his swing to get him to sleep. Taylor ate good today, finally. He ate oatmeal for breakfast. I had to beg him, but he ate the whole bowl. We went to the Olive Garden and he ate a ton of no calorie lettuce. He did ask for chicken nuggets later and ate all 4 of them. He has eaten enough candy corn to make up for the lack of calories in his lettuce. He has a method for that as well. He is so strange! He gets a bowl of candy corn and a napkin. He bites off the white tip and leaves the rest on the napkin to throw away. Looks like I will get to eat a lot of half eaten candy corn this year.
Pray that Taylor and Logan have a bug and nothing more. Pray that Taylor never again faces cancer and is NED forever. Pray for my sanity as we head into scan week next week. Pray that Logan never faces cancer. Pray that all the scans are clear and they both have normal urine markers.
September 11, 2004 Day +528 Day #226 off treatment
Can you believe three years has passed since the terrorist attacks. This is definitely the best 9/11 I have had in a while. Last year we were in NYC. Not a fun place to be on that date. This year I was in the air! Also not a fun place to be on that date. It was fine, but the thought was in your mind especially since it was all over the news in the 2 hours we sat at the airport. It was a teeny plane and the roughest flight I have ever been on, but it was not too bad. When we landed and got off the plane I saw the sweetest site in town, Taylor. He was wearing camo pants, a Halloween shirt with the sleeves rolled up, green baseball socks and Spider Man shoes and the biggest grin I've seen in a while. It was the best welcome home we could have had. I had bought an awesomely smooshy pillow at the airport and he instantly stole it for his own. We went home and played a while and then had to go buy diapers and wipes and food for Lo Lo.
I will not win the mother of the year award for this comment, but I was thrilled to learn that Logan had diarrhea too. I hate that he is sick and his bottom is soooo raw it is about to bleed, but it makes me feel better to know he got it from Taylor meaning it is a bug. Taylor had a few more episodes on Friday, but no more. It is a little hard to swallow even knowing it is most likely a bug. This is how it all started with Taylor. In fact we have photos of Taylor with the butt cut out of his diapers like chaps. It was so funny to see. He was only a little over a year, so we will never know if he had a bug then or if he truly had cancer then. Who knows, but it has always been in our minds since his diagnosis. I know what questions to ask now, so we will always be on top of things with Logan. However, Taylor had these boughts for months at a time and hopefully Logan will never do that.
Taylor put himself to bed. He was not ready, so he stayed up. I told him 5 minutes and then he had to go to bed. I am not sure how long he played, but he didn't for long and I saw the light go off and heard him climb into bed. He has been cracking me up. He got some fake teeth at Wal-mart in the Halloween stuff. He is so funny with those things in his mouth, they are way to big. Logan laughs at him too. He picked out his costume too. He will be Sully this year. They only had one in his size, so we went ahead and got it. Who knows, it may go back like last years did, he found another one at the last minute.
September 10, 2004 Day +527 Day #225 off treatment
Another day at sea, but a rough one. We were not sick, but you could feel a few rocks now and then. It was very windy. It was very difficult to stand outside and the waves were like 8 feet out in the middle of the ocean. It felt so good to be outside though. I sat by myself for a long time just getting blown around. I tried to read, but the pages were flapping all over. We watched a Disney Dreams show in the Walt Disney theater. It was good. Again, Taylor would have loved it. That was about it for the day. We had slept late, napped, lunch, napped, show, napped. We did a lot of nothing today. We finally watched all the movies all the way through. They ran the same few movies over and over and we kept just getting parts of them, but we fixed that today.
Dinner tonight was the best so far food wise. We had a parade of countries with the servers. It was fun to see who could be the loudest when your server went by. Our server, Sachin, was a hoot. We had a lot of fun with him. He is from India and he has 35 days till he goes home. They work 6 months on and 2 months off, so he is ready. He said his parents live by the beach and when he goes home and drives he looks the other way:) He was so funny. He also brought us a little of everything on the menu. We were a little picky with the odd things to eat. Most of it was good and we did do good and just try it. Jim even let him pick for him one night. Dinner is always fun on a cruise. You are with new people and you are treated like royalty. We were very lucky and had 2 great couples with us. We all swapped emails and websites. Maybe we will end up on a cruise together again sometime.
This was the last night of the cruise so there was a farewell party. All the characters came out and sang the Mickey Mouse song. It was a crowded lobby as you can imagine. I heard there were 1000 kids on board, so you know there at least 2000 parents on board, wow! We packed up, but we didn't leave our bags outside the door for the room host to get. We took care of it ourselves since the last time they handled it, it was lost.
September 9, 2004 Day +526 Day #224 off treatment
We had a character breakfast this morning, but we skipped it so that we would have time to go shopping in Cozumel before our shore excursion. I bought a silver ring and we got the boys t-shirts that are black and white and change to color in the sun. They give you the price in dollars, but charge your card in pesos, so those t-shirts were 450.00. That is an expensive shirt. I certainly hope that Amex knows the difference in dollars and pesos! We were back on the boat in an hour. We thought we would be out a lot longer. We met in the lobby at 12:45 and walked to meet the Catamaran that took us out to sea and Jim snorkeled. I stayed put on the boat. I was a chicken and I had no desire to put that snorkel, that is shared by everyone that has ever done this excursion, in my mouth! After the snorkeling they took us to a private beach to spend an hour. I swam there in the crystal blue water. It was sticky even after I showered off I was sticky. We got back to the ship around 5:00 and got ready for dinner. We were ready way early since we ate at the late seating. We were just hanging out watching movies when the phone rang. Whoever called hung up. We had left the number with Gam maw and Guh for emergencies and since we left Taylor not feeling well, we immediately had our hearts in our throats. I was crying, Jim was pacing. We bit the bullet and paid the $6.95 a minute to call home only to see no one was home. I called Guh's cell phone and it had no signal, so we have now decided they are at the hospital where cell phones don't work. It is funny what your mind can do in a moment of fear. I finally called guest services and she assured me that no over seas calls had come in, so we felt a little better but not much. We called the house back a little later and they were home. They had gone to eat. We joked about it later and then bought more prizes for them:) We felt bad later because once we knew all was fine we just hung up on the call before it cost $40. We emailed later to tell them the story so they knew we were okay. I didn't have my journal or this web site to be my outlet, so when I ran into one of our dinner partners, I just let it all out to her. She was a doll and made me feel better. Both the families we ate with were so nice. We enjoyed their company very much and wish they were not all the way in Texas.
There was a party at dinner. It was Pirates of the Caribbean night. We did the limbo and danced around. It was fun, but again we thought of Taylor and Logan doing it with us. There was a deck party after dinner, but after our little heart stopping episode before dinner, we just hung out in the room.
September 8, 2004 Day +525 Day #223 off treatment
We woke up to nothing by sea water. We can feel the boat move more than the first cruise, but not enough to get sick. You just kind of fall over every now and then. We had massages this morning. It was good, but they do not have room so it wasn't as good as the Green House Spa at home. After that we went to the pool and hot tub then just sat outside and let the breeze blow on us. That breeze soon turned into a thunderstorm, so we left. I had to go wash my hair anyway. I had a scalp massage and she had oil on her hands and my hair was so nasty!! We went to the cabin and watched a movie and took a nap. We woke up just in time to go to the Castaway Cay member party. It is for people that have been on a cruise before. We ate some food and got free drinks and met the captain. Woo hoo! He was nice, but after the mess we had going on with everyone on board mad about something, we didn't care to hear his spill. Drinks were good though:)
We had dinner at the Animator's Palate. This place is all black and white when you get there and gradually turns colors as you eat. It is hard to go on a Disney vacation without your kids. All we could talk about was how Taylor would love this or that. There was a huge picture of Lady and the Tramp and I almost cried:)
After dinner we went up to the top deck and watched as we came into port Langusta in Cozumel, Mexico. It is amazing that something that huge can park like it was a go cart. You were able to get off the ship around midnight, but all that was open was bars, so we just went to bed.
September 7, 2004 Day +524 Day #222 off treatment
This morning we were up with the sun. We were at the All Star Music and we knew that a bus that went to the boat would not come there, so we had to find a way to get to the Animal Kingdom Lodge to meet the bus. We ate breakfast and mailed a few post cards and then headed out to find a ride. We were hoping not to have to take park transportations all over the place until it went to Animal Kingdom Lodge and we didn't have to. The luggage guy drove us over in a van. He didn't want to, but he did it. He went on and on about how Disney didn't get much damage because everything is built above code and it is all specially designed. It is not what you think you see. I didn't really care to begin with, but when we pulled up at the Animal Kingdom Lodge and it had a straw roof and he asked us if we thought that was really a straw roof, I thought I would die. I don't know what podunk town he thought we were from to think they actually used a straw roof, but it cracked me up.
We went in and they were expecting us. Finally, the cruise line had done what they said and notified them. We were there by 8:00 and the bus was to leave at 9:45. Ha, we finally left at about 12:00 after a bunch of irate folks pitched fits. They gave us snacks on the bus. It couldn't hold everyone, so they gave lunch vouchers to those who stayed and waited for the 1:00 bus. We almost did, but we had already been there so long we left. Thank goodness since they didn't leave until 4:00. We had to leave out of Ft. Lauderdale rather than port Canaveral and that was a 4 hour drive rather than 45 minutes. We hade a great driver, but a crappy bus. We had no air and it could go barely over 50. It was loads of fun! We finally got to the boat about 4:00 and got to go in our room. It wasn't as nice as entering at Port Canaveral. There you got through the main atrium and they announce you. Here we went through a warehouse and into the bottom of the boat. It was no big thing since we had seen it all before, but for the first timers it must have looked boring. We did not get our anniversary stuff, we should get refunded, but who knows when. We had dinner in the fancy place, but we were not dressed up since we did not have luggage. It was well after 10 once we were done and we still had no luggage. They assured us that it was there and by then I had had a had enough and I pitched a fit. She finally found it on the 6th floor in another Kim Watts' room. Thankfully ours was there, but many people didn't get theirs at all and Disney was gracious enough to give them underwear and 2 t-shits and not Disney shirts, to last them the week. Nice huh!
September 6, 2004 Day +523 Day #221 off treatment
What a day!! We woke up and thought we had another day to pack and get ready. Wrong. Jim got on the phone with Delta first thing and I was feeding Logan and just doing a lot of nothing. I had packed everything except my clothes. They were draped all over the ironing board waiting to be ironed and packed. Jim finally got through to Delta at about 9:00 AM and they informed us that they had already changed our flight for us with no warning. It was changed to 10:45. We had not had showers and my stuff wasn't packed. I jumped in the shower and threw on the first clothes I came to. I literally threw my clothes in the bag and we took off. Pam watched the kids while Eddie drove us to the airport. We actually had plenty of time, but it was stressful all the same. Well, this brought on a new problem. We had no where to stay and the boat didn't leave until 8:00 the next night. Disney refused to pay for a room all though we found out from many that they paid for theirs. We got a room at the cheapest Disney hotel and boy did they look at us crazy for checking in a Disney resort for one night:) We went to Down Town Disney and ate and looked around for a while. I then spent the rest of my night in Disney World ironing clothes.
The other fun for the day was that Taylor woke up and immediately ran to the potty and had pure water poop. As you all remember that is what started this journey 2 years ago along with the limping. This did not settle well with me after his limping last week and me leaving for a week. He had 2 episodes before we bolted. That was another issue. I felt horrible for leaving him like that. We did hug and kiss them and tell them we would be gone a few days, but we bolted out the door as soon as Paw Paw drove up. He didn't cry and when we talked to him later he didn't seem to care, but I felt awful about it.
Please pray that he is just experiencing a run of the mill childhood illness. I really think cancer families should skip such illnesses, but that is just my opinion:) Pray that both boys are good boys this week and that we have a safe and good trip.
September 5, 2004 Day +522 Day #220 off treatment
What a night. Today was spent cleaning and packing only to find out at about 8:00 that the flight had been cancelled. We are not sure why. They say because the airport will not open in Orlando until noon, but we were not scheduled to land until 1:30. Who knows. Obviously this was a problem for a lot of people since they moved the departure date for the cruise to Tuesday. We can not get through to Delta to change the tickets, so who knows if we will get to go or not. It is disappointing, but oh well.
Taylor went to church with Gam maw and Paw Paw this morning and had a blast playing in the gym after they ate a huge lunch. He came home and got to help Ca Ca work on the swing set some more. It is put back together, so he can swing again, but the pea gravel and timbers are not done yet. He was excited to get to play on it again. Although he was filthy after playing in that dirt. He soaked himself, but it was not his fault. He can't open the screen door and he was knocking and I didn't hear him. He was so upset. That is the first accident he has had in months. We assured him it was okay. We went to Wal-mart to buy a few last minutes items for the cruise that may or may not be! Taylor slept all through the outing.
He played great by himself while we made a million phone calls to Disney and I held for 2 hours with Delta and finally gave up. He did make a huge mess and when given the option to clean up or go to bed, he went to bed. He fell asleep pretty quick, so I guess he was ready for bed anyway. He has had so much fun this weekend.
Please pray that the scans are clean and clear. Pray that Taylor is NED forever. Pray for all of our friends that are fighting relapse. Pray for Morgan who is back in NYC for more 3F8.
September 4, 2004 Day +521 Day #219 off treatment
I guess I will have time to update after all. Today we went to Auburn for the game. Taylor rode in Paw Paw's truck and got there much earlier than we did. He immediately made friends with Will, the little boy that was tailgating next to us. They played very well together and had so much fun. They played football, soccer, and pulled the tape that marked off spots until it stretched to the point of breaking. We finally got there around 10:00 and we took a walk to Haley Center. Taylor was very tired by then and had a melt down over washing his hands. That is when we made him go take a nap. He napped maybe 30 minutes and he was good to go. When he woke up we went to the stadium. We had tickets in a different spot than Gam maw's, so we kept moving around and sitting together until we got kicked out. Finally everyone got seated and we were able to stay together. By the middle of the 1st quarter Taylor was hot and out of tea. He wanted to go sit in the tunnel. I took him to sit up there and he was happy. We were there about 15 minutes when we went back to our seats. He immediately got whiney, so we left. He was happy at the tent. He ran and ran until he couldn't go anymore or so we thought! We got some chicken and ate it and he had some mac and cheese. He rolled down the hill and threw the football on top of the tent. We waited for about 2 hours after the game to go. We didn't run into any problems on the road. Taylor stayed awake for 45 minutes in the car the "pretended" to take a nap. It didn't take much pretending until he was really asleep.
His eyes still look yucky to me, but I feel that it is my paranoia about scans. He spent the night with Paw Paw again since he fell asleep and we still had to stop and get Logan.
Pray that all scans are clear and he is NED forever. Pray for all the kids in this battle.
September 3, 2004 Day +520 Day #218 off treatment
Well, this is probably the last update for about a week. Our cruise is a go. However, they did change our departure day, we are now leaving Monday instead of Sunday. Last year I wrote about the differences between Labor Day 2002 and 2003. In 2002, we had a ill little boy, but we didn't know what it was. We were just starting the journey. In 2003, we had a healthy 2 year old who had faced the devil and won! Here it is 2004 and it has been a fabulous year. We have had a year of NED status, a year of fun, memory making. We have had many trips to NYC, Chicago, added Logan to the family, Taylor has started school, I started work. It seems so unreal to think back now on what we have been through. When you go through it, you go day by day and do what has to be done. Looking back I wonder how we did it. I have already gone back to thinking "how could I deal with it". I know we could make it again if we had to, but I pray that we never do!!
September 7th 2003 we headed to NYC for the 3rd time. It was a long 2 weeks full of ups and downs. We did maintain power, so that is always a plus:) I do believe we will all agree that this September 7th will be much better. We will be on a boat in the Bahamas or what is left of them! Taylor and Logan will be back here with their grandparents getting spoiled, just like little boys should be. I also wrote last year that 2003 was a better year than 2002 just because we knew what was wrong with Taylor and for the moment it had been fixed. Well, here we are again and 2004 was even better. I can not wait until 2005 to write how much better it was! Let us all pray together that there are many years filled with positive updates.
I went to school today as did Logan, but Taylor stayed home and played with Ca Ca. He has borrowed a tractor to finish up the swing set area and Taylor thought that was cool beans. Logan is all snotty again, but he didn't act like he felt bad. He has not eaten his bottle real well, but food is a sure bet! We went to Golden Rule with Gam maw and Paw Paw and Taylor ate his lunchable. Logan ate a piece of bread and a cookie. He about ripped Gam maw's plate off the table on several occasions. He wanted that Bar BQ sandwich bad. Taylor spent the night with them and will head to Auburn early in the morning. We will follow a little later after we leave Logan at Nana's.
Please pray that Taylor is NED forever. His eyes don't look right to me. I guess I am being paranoid now after the scare last week and scans looming over our heads. He is eating great and playing hard, so he is probably just tired. He has had some "gunk" in his right eye the last few mornings, so maybe his cold has gone to his eyes. Please pray that it is nothing. Pray that Logan never has to endure any of this and that Taylor never has to again. Pray for all of our friends that are in this fight as well. Pray for the people of Florida that are about to get hit by another hurricane. Pray that we have a safe and uneventful trip and that we get to fly to Orlando. That is looking iffy!
September 2, 2004 Day +519 Day #217 off treatment
Today Logan went to Nana's for a while. We went to the dentist to have my teeth cleaned. I have one cavity guess where it is? In my wisdom tooth. I could care less. I have had 2 c-sections, but I am too chicken to get my wisdom teeth out. Guh came to get Taylor from the dentist and he went to her house to play. After I was done I had to go get Jim and take him back to his car where he had locked the keys in the car! I got Logan and then we went back to Guh's. Logan stayed there again tonight while we went to our 2nd Baron's game. Taylor got his popcorn this time and ate every bite of the huge bucket. He begged for cotton candy and we told him no a million times. He finally flagged the guy down himself and so we gave in if he wanted it that bad. He took one bite and said gross just as we thought he would.
We were not there very long and we went and got Logan and went home. Didn't see anyone we knew this time.
September 1, 2004 Day +518 Day #216 off treatment
Lunch for Life has started!!! Please read the poster that is on the front page of this site and visit the Lunch For Life web site listed there or below and donate your money. September is also Childhood Cancer Awareness Month. Please go to the sites listed below to read about kids with many different types of disease.
I can not believe that it is September already. September brings a bag full of emotions. We are coming up on the 2 year anniversary of Taylor's diagnosis. We are coming up on the 3rd anniversary of the 9/11 attacks on NYC. It is just an odd time. I remember telling Nicole, my co-teacher at the time, that I was afraid I wouldn't see Taylor grow up. He was only 8 months old when the attacks happened. How was I to know that a 13 months later that I would utter those same words to her and it be because he had cancer. How many of you thought that cancer was an "old person" disease. I know I did. Sure, I had seen the St. Jude shows about the kids, but I thought that was an odd circumstance. I never could have imagined how many kids were affect by cancer. You can go to http://www.lunchforlife.orgor to www.sharethelove.org or yet another http://www.warriors.beebo.info/ to visit the sites of many kids with cancer of all types. Neuroblastoma is one of the most deadly types due to the fact that so little is known. Researchers have made huge strides on this disease, but there is still very little known. Every little bit helps. Please donate to this cause for the many (too many) kids that are listed in the sites above.
Today was again, a good day. Taylor is no longer limping. In fact, he told me this morning, "look mama, I can put my toes down". Of course that came with "can I wear my Spider Man shoes"? I told him no since they hurt his feet. Well, he very quickly replied, "the wip up (zip up) ones hurt my peet (feet) not the welcro (velcro)". Well, pardon me!! I allowed him to wear them and he said that the bump hurt. The bump being where the cheaply made shoes are already coming apart on the inside and rubbing his foot. It was right where he had had one of the spots on his foot. Anyway, I guess we have survived yet another scare. I talked to Meredith again just to be sure that I shouldn't come in. We did not go in since he had no other symptoms and he is walking fine. It is so unfair that nothing will ever be normal again. There will never be a normal tummy ache or bug or normal bumps and bruises, not even for Logan. I read about another family tonight that had 2 kids with NB. Bother were DX within a few days of each other, but one was 10 and one was 3. Wow, what a load to carry. You can read about them on the Lunch for Life page.
Taylor did great at school. He let me drop him off and he went on to play. We ended up going into the gym before his class left. He gave me a hug and lined up and went to his class. He is doing so good. I knew he would eventually, but I honestly thought it would take longer. I am very glad that it didn't. We came home and played and made a few phone calls. One being to the Disney people who still say we will sail on Sunday. I don't think they are watching the same weather we are. I think Nassau will be wiped off the map, but I am no weather man. I must say I am glued to the weather channel!
Taylor was reading in his tent when he fell asleep, so he is gone for the night. I feel bad I didn't get to tell him goodnight, but at the same time glad he is a sleep. He has had some rough points that last few days. I have had to pull over in the car and calm him down and Jim had to pull over twice on the way to the game last night. It is always over something stupid. I do worry that he is so irritable, but at the same time, I have taught 3's for a while and know quite a few little ones who could be happy go lucky one minute and fighting mad the next. Other than a few melt downs here and there he has been a very good boy.
Logan is doing great. He is eating us out of house and home. He loves anything you give him. That is one way the differ at the 8 month point. Taylor wouldn't have anything. I guess we will never know if it was disease related or not. Logan is starting to use his knees to crawl rather than scooting or rolling. However, he still doesn't lift his head. He slides his face across the carpet, so he has nice carpet burns all over him. I have crazy kids, what can I say.
I guess I have rambled on long enough. I will close with a huge thanks to all of you who have been by us for nearly 2 years!! Please pray that Taylor is NED forever!! Pray for all the kids listed in the sites above that fight cancer and other diseases. Pray for my friend and new boss, Joy, and her father who has CML a type of Leukemia. Say a prayer of thanks for Taylor's success and that of his friends. Pray for Todd who has moved on campus of Samford after only a year post transplant. Many of you may not know how huge of a deal that is, but it is HUGE!!! Way to go Todd!!
Be sure to watch the Miss America Pageant on Sept. 18th. Miss Alabama, is Pelham native, Deidre Downs also known as the one who started the car tag effort. Miss Kansas is a fellow Mary Kay beauty consultant.
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August 31, 2004 Day +517 Day #215 off treatment
We had a nice day today. We hung around the house until about 12:30. Taylor slept until 9:30. It has been a while since he slept late. Logan was up early as usual. I am not sure how Taylor sleeps through loud mouth yelling and squealing!
Taylor played football in the living room with a normal walking foot. However, he soon started to limp again. I think it was a sore that hurt and now he does it out of habit. He will walk normally until he sees us looking at him, or he thinks about it and he will pop that heel up. He did fine with his shoe on. By mid afternoon he was saying that his foot hurt, but I think his shoe was too tight, he did have sock imprints on his foot. He cannot stand for his shoes to be tied tight.
He has eaten like a total hog!! He ate a lunchable before we left home. He is on a new kick, it grosses us out, but if he is eating, so be it. He dips all his ham, cheese and crackers from the lunchable in apple sauce. Yuck!! We met Jim at Guthries and he ate chicken fingers and fries. We spent about half an hour hanging posters around town and then went to Nana's. He ate cheese puffs and graham crackers at her house.
We left Nana's when Logan got cranky and he didn't have his passy and wouldn't go to sleep. He was gone before we got off of Nana's street. We went to Guh's to wait on daddy. She kept Logan while we went to the Baron's game. Taylor had fun. He saw Dora the Explorer and Boots. She never came off the field, so we didn't get to see her up close. She went to the fun park, but we didn't want to get stuck over there, so we didn't even tell him she was there or that the park was there. He was mad that he didn't get popcorn. People were waiting in line for like 40 minutes and I wasn't doing that for popcorn. We are going back on Thursday and we promised to buy popcorn as soon as we get there.
We ran into Michael, the man who put Taylor to sleep when he was getting radiation. We got to meet his wife and son. It was so great to see him and to meet his family. He and the other anesthesiologist were the only 2 people in the whole radiation process that I liked. That was not a good process for me, it was too mixed up and un organized. I was thrilled to see it come to an end. It is always hard to say goodbye to those that you did connect with, but at the same time it ended another chapter of treatment. It is always bitter sweet. Taylor was surprised when he knew his name. He of course does not remember him. Even if he remembers the radiation center, he only saw Michael in a drunken state:)
Ca Ca gave me a big surprise today. We are not going to Gatlinburg this weekend. Instead, the kids are staying here and we are going on a Disney Cruise. However, hurricane Frances seems to be trying to keep us home. As of right now the Disney people tell us that it is going to sail, but we will not know for sure until Friday morning when they call us. I hope we get to go. Add that to your prayer list as well. Also, the state of Florida does not need to be hit again. They have already suffered due to Charley.
Pray that Taylor is NED forever. Pray that he is just trying to make me crazy! He is doing a good job if that is the case. Pray for all of our friends that are battling cancer as well.
August 30, 2004 Day +516 Day #214 off treatment
Well, the limping continued this morning when he woke up. I called Meredith and we decided that we think it is a blister or a raw spot, but if he is still limping on Wednesday when Dr. Berkow comes back from rounds, then I will bring him in to see him. I felt better after talking to her, but I am still a nervous wreck. I wouldn't let him wear his spider man shoes. I put on his old blue shoes and he said they hurt, so we got out his New Balance and he said they were fine. He limped a little, but seemed to walk okay after a while. I told his teachers to keep an eye on it. He didn't limp at all at school. He pushed his scooter with that left foot and he ran and all. As soon as we walked in the house and he took his shoes off, he started limping. I am not sure if it really hurts with that shoe off or if it is for my benefit. He knows that I will ask him if it hurts and that I am watching him to see if he is walking on it or not. He hasn't put his toes down yet, but he is still running and playing. He still has several red spots on the ball of his foot and the middle toe looks like Rudolph's nose, so I am fairly sure that we are looking at a sore of some sort. However, that doesn't ease the worry any. So, again, we ask for prayers that we are not facing anything more than a blister.
He did great at school and walked right in. I saw him line up and leave snack and he walked in line and did great. He left night night in the lunch room and I picked it up. He didn't even miss it for abut 30 minutes. He pitched an AWFUL fit leaving school. He wanted his tea cup, but it had already been washed. I told him we could go buy tea or make some at home, but none of those options would do. He screamed and hollered until I had to pull over and get out and calm him down enough so that I could drive. I told him NO TEA the rest of the day. He drank a good bit of milk until he found his tea from this morning. He guzzled it down and hasn't touched his milk yet. We do not have any tea made and I refuse to make any until tomorrow when he can have it. He will rope us into it if we have it. He will drink milk or water or go thirsty. Maybe we can get him hooked on one of those and we will not have to worry with tea all the time.
Please pray that his foot is fine. Pray that he is NED and has perfect scans/tests in a few weeks. Pray for all of our friends. Pray for the Bonner family, today marks one year of Meagan's passing. www.caringbridge.org/meagan
August 29, 2004 Day +515 Day #213 off treatment
We missed church today. Jim went to help Paw Paw lay some brick. Logan and I stayed here. We met Guh and Taylor at Cracker Barrel for lunch. Taylor ate great!!! He ate all his grilled cheese and most of his green beans. We went shopping for a little bit then came home. Taylor didn't want to let Logan sit in the stroller and Logan gets heavy after a while, so we didn't get much done. We came on home and Guh went back to her house against Taylor's wishes.
Now that we are home, the fear has set in. Two years ago we were in the beginning of this battle. Taylor had a persistent limp, unexplained fevers and a lack of appetite. Today Taylor is limping. He was running, literally running around racks in Cato, but once home he is limping. He is walking on his heel and complaining of pain in the ball of his foot by his big toe. He does it with his shoe on or off. It is red, so maybe it is the beginning of a blister that hurts. He is also saying that my finger nail is digging him, but I am not touching his with my nail, so maybe there something in it. I don't know, I just know that I am now a nervous wreck. It was a very sudden thing when it all started. He has not had fever and he is certainly not lacking in the appetite department, but still, I worry. You all know me, if he is still limping tomorrow, we will be taking a visit to the Dr. It is 20 plus days until scans and I will make myself crazy if I see him limp for long. He is playing fine, he just runs on his heel and gets mad if we touch him. Every time I see him hobble by, fear grips me and I can't stop it. Please pray that he has a blister or something and nothing more. Pray that he wakes up and forgets about it. Pray that he is NED forever!!!!!
August 28, 2004 Day +514 Day #212 off treatment
We will call this day "Light bulb Saturday". I think Jim changed at least 2 bulbs in every room. We have been in the dark! We did the Wal-mart and Lowe's thing today. Taylor went off with Pippy and Pop. We rode by there to give him his bag to go to Guh's. She was going to come there to get him. Well, he was tired by then and fell apart, he wanted to go home. I finally left him screaming. He eventually got Guh to come and get him, but once she got there he was calmed down and didn't want to go home anymore. They stayed there a while and then went to Guh's house. He ate like a pig at Guh's house and they just hung out and played all night.
I called to be sure he was being good and she said he had been an angel and Pippy said he was good at his house too.
Logan called for him all night. He missed him when he is gone. He played so good today. He has been in the best mood. He has been all over the place. The more mobile he gets the harder it is to let him down. Taylor never touched a thing and this one is into everything.
There is not too much to tell since we didn't have Taylor today. Hope you are all having a great weekend!
August 27, 2004 Day +513 Day #211 off treatment
We had a great day today. We got to school early and Taylor got to play in the gym for a while and help me set up my baskets and stuff. When it was time to go to his room, he just got off his bike and walked across the hall and went in. He made me walk him to the table while pulling my shirt (I HATE that). He sat right down and hung night night over his chair and started to play play dough. I hugged him and walked out. Not one tear was shed or even tried to come out. He came to the gym after most of the kids were gone and played a little while longer. After school we went home and hung out until it was time to go to the football game. He and Logan both took a long nap, so they were ready to go.
Taylor loved it. He went out on the field with Ca Ca and he liked being next to
the band. They had 3 parachutes come down and land on the field. One brought the
game ball and one the flag. He loved that. The school presented the team with
watches that say 1995 5A state champions. It was a pleasant surprise. Another
surprise was the announcement that they will play a game on April 9th to mark
the 1oth year anniversary. That should be fun. I wonder how many of them can
still run to first base? It was great to see everyone again. It was a little odd
that most everyone had kids, some had several and some had 7 and 8 year olds.
The last time we were all on a ball field together, we were still in High
school, so it was different, but fun. It was nice to catch up and see what
everyone is doing now and who is married to the person they were dating in
school. Hands down, we won the contest of who has experienced the most over 10
years. Some of them knew about Taylor and others didn't. Many had been praying
for him and didn't know he was our son. Again, another strange experience.
Instead of worrying over who had gained weight or had already been divorced we
were discussing our sons battle with cancer.
After the ceremony, which was before the game started, we left and went to get some dinner. Logan was hot and getting fussy. Taylor rode with Gam maw and Paw Paw to visit Steve and sign his cast. He thought that was cool, to write on someone's foot.
August 26, 2004 Day +512 Day #210 off treatment
Welcome to Wattsville. Someone put that on the guestbook and I liked it. Anyway, today has been great. I didn't get much done, but the boys have been cracking me up.
Taylor has been singing his ABC's and when he gets to LMNOP he just clucks his tongue because he can't say it. He also read "10 Little Monkeys Jumping on the Bed" to himself. It was funny to hear how he copied the voices I make if I read it and the faces and stuff. I wish I had video of that, but he always stops if he catches you watching him.
Logan has been cracking us up all week. He has quite the personality on him. He is definitely going to be his own person. I don't always tell a lot about Logan, but I think you with kids especially boys, will appreciate these little tales. He has found his "man hood" and if he doesn't watch it he will rip it off. Lets just say he doesn't need bath tub toys. He is impossible to change. If he is on the changing table he tears the stuff on the wall down. If he is in the floor he is rolling all over and you can never get the diaper on right. He gets MAD if you hold him down to change him. He is louder than loud and is going to be trouble. I never had to child proof anything when Taylor was crawling and walking as a baby. He didn't mess with things. I do not think that will be the case with Logan. He is into anything and everything. He is crawling though not in the traditional since. Taylor never crawled on his knees either. His teachers used to call him Soldier boy because he slithered on his belly and used his elbows to push around. Logan does his own version of that. He goes on his belly, but uses his toes to push up then fall into place. He rolls a lot too to get to where he wants to go. He always gets there and most times he doesn't belong there! I can not leave the room for a split second or he goes bananas. I am sure it will be fun to have 2 boys help me potty and wash clothes and do everything else we do in a day. Taylor is already under foot 24/7 and Logan is close behind. Well since he has found his man hood, I guess he finds it necessary to act like a man. Today he topped it all. I sat in the floor and laughed at him until I cried. He was laughing too, but I am not sure he knew why. He was in his room playing while I hung up clothes. He was in a diaper and a t-shirt that had gotten all twisted and was showing his belly. He had on a pair of sandals that I found while cleaning out the closet and I just slipped them on to see if they fit. He was happy playing with them, so I left them. He was sitting all slumped over. He started to pass gas, not baby poots, but huge, loud, manly ones. He had this look of relief and satisfaction after he had released all he needed to. He just looked at me like "what"? Maybe you had to be there, but it was so funny.
Taylor fell today when he slipped in some gravel in the drive way. He never cried, but he was mad. He has a huge bruise on his arm that I watched him get when he fell and hit the door frame a week ago. I found a huge one on his leg today, but I do not know where it came from. He said he hit a tree, who knows. I know kids get bruises, but you never know if he has low platelets or not. I am sure he doesn't since he was fine after hitting the concrete floor at the toy store last week, but still, we always worry. He has been great today. He cleaned up everything he pulled out (with a little reminder each time). He has played with Lo Lo and helped me clean. He has watched TV too. He was laughing. I think that is so cute when they "get it". When they are little they just watch to watch, but he is now understanding it and laughing at appropriate times and answering questions and stuff that are being asked. He is growing up! He looks about as cute as he can in his "manly" clothes today. He has on boxer briefs and a short t-shirt. I am not sure who he thinks he is prancing around here like that, but it is funny.
Well, that is about it. As you can see we continue to enjoy the simple things in life. As for this weekend it is pretty busy, so don't expect an update to appear until at least Sunday night. Tomorrow night we are going to the McAdory HS football game. Jim was on the championship baseball team in 1995 and they are going to recognize them and give them a plaque at the game. Taylor is all excited. He wants to go to "his ballpark" as you recall he practiced at the football field when he played ball. He is also excited to see Ca Ca's friends. He looks at the baseball photos all the time. We are looking forward to catching up with people that we haven't seen since high school too. Saturday Taylor is going to go off with Pippy and Saturday night he is going to Guh's house. He is just a man about town these days.
Pray that we continue to have these normal days and that Taylor is NED forever. Pray for all of our friends that are fighting cancer.
August 25, 2004 Day +511 Day #209 off treatment
We do apologize for the lack of updates. We are all doing great and staying busy. We went to school again today and it was awesome. Taylor did cry, but he let miss Lana hold him and tell him a secret and she slowly walked away from me and soon she had him in his room and he never even missed me. I watched him play again today. He was running around with his night night draped over him. He id doing better every day.
I rushed home today to get ready for an event at Children's Hospital. We were invited to attend a ceremony for the people that were involved in getting the Childhood Cancer car tag passed. It was great to catch up with so many people we haven't seen in a while. It was nice to see all our Dr's and nurses that we do not see very much anymore. I miss them in a strange since, but hope to never need them again. Taylor got a tent to sleep in. He always sleeps in the floor. He never wants to sleep on the bed, so he got a small, child's tent to sit in his room and sleep in. In fact, he is sound asleep in it right now. He played in it in the living room for a long time. Christian came over to play tonight. Taylor is still not a very good sharer. They did enjoy some animal crackers at the "fickanicka" table. Logan had a blast watching 2 big boys run around. They are so funny, they are both back in school now and learning new things, not necessarily good things and then they copy each other's every move. We were cracking up at them. It is going to be a lot of "fun" when we have Logan added to the mix. I can't wait!
I found out today that our friend Madison has relapsed with NB only 6 months post transplant. Please pray for her and her family as they begin more chemo and try other treatments. www.caringbridge.org/la/madison
Pray that Taylor is NED forever. Pray for all of the people that are in the Cancer Club and pray that we are all soon looking at the cure and no one else joins the club.
August 24, 2004 Day +510 Day #208 off treatment
We had yet another normal, stay at home Tuesday. We cleaned up and washed clothes and did the normal things. Taylor and I laid in bed and watched the Price is Right while Logan napped. We were going to go outside after he woke up and Taylor got in trouble and couldn't go. Soon he had proven he was ready to behave and go out and he didn't want to go out. He finally got outside at about 4:00 and it started to rain soon after.
Nana sent him a pick nick table or a fickanicka table as he calls it. That could sound ugly if you don't watch it. He has played on it all night. He loves it. It is for the deck, but right now it is in the living room and somehow I think it will end up staying there. Guh came over and she made pancakes. Taylor ate a little over a whole one with green syrup. Yummy!
Amanda and Mackenzie dropped by tonight. Taylor and Kenni played in Taylor's room for the longest. No tattling, yelling or crying. We have got to do better at getting our kids together. Taylor had a great time playing. They even cleaned up the toys when it was time for her to go.
August 23, 2004 Day +509 Day #207 off treatment
We had a normal Monday today. Taylor did pretty good with me dropping him off. He cried a lot and I had to literally run out, but as soon as I was out of site he was fine. Miss Lana gave him a shiny quarter to keep in his pocket. He later put it in his gum ball machine bank. I peaked in the gym to find Taylor actually playing and not hanging around the teachers. His class lined up and I watched him get in line and then growl and claw at people. My little angel:) After school we made a mad dash to Wal-mart and then headed for home so that I could get ready for my Mary Kay meeting. Guh and Temperance went with me and we played Bingo. They both won prizes and I didn't, hmff. Just kidding. Temperance and I went out to eat and had a nice time. Taylor was still up when I got home and still full of energy. However, about 2 seconds after I tucked him in he was asleep.
Logan woke up all snotty. His eye was even caked up and stuck together. I guess he will be blessed with my allergy and sinus troubles too. Sorry Lo Lo!!
Please pray that Taylor is NED forever. Pray that Logan feels better. Pray for all of our friends that are fighting this and other diseases. Pray for Meagan Bonner's family as they approach the one year anniversary of her passing. You can visit them at www.caringbridge.org/al/meagan
August 22, 2004 Day +508 Day #206 off treatment
We went to church this morning. Taylor earned himself Children's Church no matter how bad he cries. He was so loud and ugly today. He was dropping things and growling when we got on to him. He was shaking keys and tearing paper. Jim finally had to leave early and get him out of there. Children's church is for 3-11 and it is too big of an age gap for him to be comfortable, but he will have to get comfy with it because he is not coming back to big church. He did like that daddy had our pew for the offering plate and he got to give his money to daddy. He was mad that he had to put the money in the plate. He wanted to give it to Griffin. They always write each other letters in the offering envelopes and that is what he had in mind for that one too.
After church we met Gam maw and Paw Paw and went shopping and to lunch. Taylor ate great since we were at his favorite, the Olive Garden. He got a new vroom vroom from Paw Paw and Gam maw. Can you say rotten!! He wanted it so bad. He has talked about it ever since he saw it yesterday and when he saw it he just dropped whatever he was holding and ran to it. He was so excited. He was worried about it and has asked a million times "what if somebody got that". He helped put it together and rode it a little before parking it to charge. He said Logan could have his gator. The vroom vroom has a trailer on it and it has a seat, so Logan will have a place to ride when he is bigger.
We are now back in the house and gearing down from the day and getting ready for school and work tomorrow.
Please pray that Taylor is NED forever. Pray for all of our friends. Thank God for our dear friend Carter's latest scans that show him to be NED again. Way to go Carter!!!! Pray for Carl who has had some progression and Sophie who is gearing up for another transplant.
August 21, 2004 Day +507 Day #205 off treatment
Last night we met Taylor, Gam maw and Paw paw at the Cracker Barrel and had dinner. Taylor went back to Paw paw's house and we went home. As usual, we went home and I cleaned up some and watched more Olympics. Taylor ate great. He of course ate Gam maw's food and not his own, but at least he ate. He was able to buy some silly putty for eating so well.
Today we went to get him from Paw Paw's and go to Macey's party. Taylor didn't participate too much in the party doings, but he really loved her play set in the garage and he played on that very well with the other kids. He ate fair, but wouldn't sit at the tables with the kids. Elvis was great. He entertained the young and old. It was a lot of fun. We had to leave a little bit early and go get a hair cut. Taylor got a buzz cut and was a good boy, so he got to go to the toy store afterwards. That took forever!
Once we got back home Ca Ca took the boys outside and I went to the grocery store all by myself. It was so nice. Once I got back Taylor went back outside and me and Lo Lo stayed in.
Not too much to talk about today. Just a normal day filled with normal family things.
August 20, 2004 Day +506 Day #204 off treatment
It is Friday already, I can't believe it. This week flew by. Today was a great day. Taylor played in the gym this morning and then went right over to his class. He wanted to go right in and help pick out the toys to get out, but at the same time he wanted me to stay. He had a bag packed to go to Paw Paw's after school and Night Night was in that, so I was able to leave to go get that. When I came back in he was already playing and went I left it in his basket. He had it at 1:30 when Paw Paw came to get him. He was playing legos and didn't even know we had come into the room until Shannan said something. He had his new race suite in his bag and was itching to get into it. He wanted to wear it to school, but it is one piece and I knew that would be an issue. I normally have to fight him to get him dressed and this morning when I walked in the room he was naked waiting to get into his suite.
He got that race outfit last night at Watermark Place. He thought it was just a race car helmet, but it came with a Home Depot suite as well. He had to have it on before he could even get in the car. It is very cute. I hope he will wear it for Halloween and we wont have to buy another one, but it will probably be old news by then. He took a spin in his go kart last night with it on and thought he was cool stuff. We got that surprise in stead of the skate board he wanted. He was trying to sit on it and push himself around the store and he fell and hit his head on the concrete floor. He screamed bloody murder and had a nice spot on his head. It seems to have disappeared this morning. Ahh, the joy of having platelets!!
He had another little melt down yesterday. It was almost funny, but sad too. He has a pepsi truck or pep pep truck as he calls it and he likes to take the black pieces off the wheels. He was lining them up on his air vent and one fell in and went too far to be able to get it. He was so sad that he had lost it. I have told him a million times not to take them off, but he keeps on, so I told him that is what happens when you do not listen. Well, he turned the tables on me. He put them all on except the one that was in the vent and told me that he wouldn't do it anymore. Of course, I couldn't get it out to make him feel better. I felt awful because he thought I was just not giving it back to him. That also added to our problem of him closing the air vents. Now he wants it closed so his stuff doesn't fall down it, but it gets hot in his room. I do not know why he insists on playing on the vents anyway. Oh well!!
That is about it on the home front. We are going to Macey's birthday party tomorrow. Jim is going to be working on the swing set and getting that all put back together. Other than that we do not have any plans.
Please pray for our friends that are battling diseases. Pray that Taylor is NED forever.
August 19, 2004 Day +505 Day #203 off treatment
Thursday already, wow. We have spent another day at home. It has been interesting. We cleaned up. That is a never ending battle. I spend all day cleaning the same rooms over and over. Those would be the living room and Taylor's room. He has cracked me up all day. He got mad at his tow truck and told me through gritted teeth "I am so ang". I do believe that he meant he was angry. It was hard not to laugh at him. We tried on all his pants to see how many he had that still fit. Today is the last day of a great sale on fall things at Carter's, so we needed to know what to get. Anyway, that was fun. He was tired of trying on clothes and was being uncooperative. I was getting cracked up at the pairs that were way to short. It was funny. He didn't know what to think of me giving all the too little stuff to Logan. He wanted to keep on a pair of orange and blue pants that are still way too big and he has had them since he was one.
Logan has been good and has eaten fairly well. He is so funny. He has gotten to be a bit of a copy cat. If you cough he will cough and he will copy you several times then laugh. I remember Taylor doing that too, but I think he was older than 8 months. Can you believe that Logan is 8 months old? Can you believe that in 4 months we will be having a 1st birthday? Can you believe that in 4 months it will be Christmas? Holy Cow!!! Where does the time go?
I have a challenge for you. My Mary Kay director has given me the challenge of 30 faces in 30 days. That means that I need to do facials on 30 women. I can do it individually or in groups. If you are interested in helping me meet this challenge and to be treated to a great facial and a great time, please email me. We can set up an appointment to do an individual facial or we can plan a show with several ladies. Hostess gets free product, $75 worth for $25 to be exact!! email@example.com
Word on the street is that our dear friend Alex is in People magazine. If you are out take a peak in a copy and check out her story. We have ordered Lunch for Life posters. Do you all remember that fund raiser from last year. Well, we are involved again this year and we will be putting up the links and posters and all very soon! Please pass the word and help us out in this effort to raise awareness of NB. You can donate any time and there is a link on the front page of our site if you are interested in doing so now. However, the big campaign will begin September 1 and run through the end of the month. It is going to coincide with Childhood Cancer Awareness Month which is September. You can get gold ribbons at www.goldribbons.com You can wear a gold ribbon pin to show your support of the cause as well as to show tribute to our special cancer kids.
Please pray that Taylor remains healthy forever. Pray that Logan never endures what Taylor has. Pray for all of our friends battling this and other diseases. Pray for our troops that continue to fight for us over seas. Pray for the families that are left alone when their troops leave. Pray for my friend Eliska whose husband just left to go over seas.
August 18, 2004 Day +504 Day #202 off treatment
Today was a good day. We went to school. Taylor started off in the gym with me and then ASKED to go to his room when he saw his teachers come in. I took him in and he walked right in and I was almost out the door when he turned around and realized that I was leaving. He started to cry, but he went with Christy and I never heard him really cry. I guess it is getting easier already. I peaked in on him again and he was in the police car, but he was right by Christy and Shannan. He just isn't sure how to interact yet. I know he will get better at that too.
I was by myself again, but the kids did great. We had fun making medals to wear. After school we went to pick up all our pottery from the party I had a few months ago. I will be delivering that tonight and tomorrow, so if you ordered some it is coming! Guh is coming for a visit later today.
That is it from our neck of the woods. We are all great. Logan ate very good today and is happy. He is napping right now. He has been taking great afternoon naps. Taylor is playing legos in his room. I guess I will go start yet another load of laundry and go play some legos.
Please pray that Taylor's body has been freed of cancer forever. Pray for all our friends battling cancer with us.
August 17, 2004 Day +503 Day #201 off treatment
Today we stayed home all day long. It has been a long time since we did that. Taylor never even got out of his PJ's. We did a few loads of laundry, but otherwise we just played and lounged around. Taylor can make a mess. He had a total disaster in the living room, but he did a great job of getting it all cleaned up. We watched more Olympics tonight. He is still loving the gymnastics. He likes China. He was concerned about the girl who hit her foot and fell. He was wild as a buck tonight. He was running in circles all over the place. He didn't eat his dinner well at all, but he ate everything else in site.
Both boys still have awful noses and a slight cough. Logan ate fair today. He would take one bottle and not the next. I don't know what is going on with him. We got a lot of Dr. appointments lined up today. Sept. 15 both boys will go see Dr. Petelos. Logan for a 9 month check up and Taylor for the next round of shots. Sept. 22 Taylor will have a CT, Urine, BM's, check up and MIBG injection. Sept. 23, Taylor will have his MIBG scan and Logan will have his urine checked again. Dec. 1 Taylor will have his 6 month dental check up. He is still pitching a fit when we brush his teeth, but they are getting brushed, so hopefully we will only get good news on that visit. I will be discussing port removal and hearing tests with Dr. Berkow when we go in September. If we can get that port out we will not have to go to Children's every time he has a fever. That is just precautionary since he has a foreign object in him. He will have to get IV's for scans, but otherwise he will be no different. They draw labs from his arm anyway unless it is to check the port for infection or to flush it.
Please pray that we never need that port again. Pray that he is NED forever. Pray for all the kids battling this and other diseases.
August 16, 2004 Day +502 Day #200 off treatment
Good bye to the weekend. They fly by don't they. Today was pretty typical. We went to PDO, Taylor cried and pitched an awful fit and then had a great day. He played in the gym with me for a while and was fine. As soon as I called his name to go to his room he started to cry. Christy had to literally peel him away and I just left. I took Logan to his room and came back and he was at the table playing play dough and was fine. Snot!!! He was riding a car in the gym when I peeked in on him. He does ride it right by the teachers, but he is playing. He always did that with me, but I figured he was just guarding me. I don't peek too much as I do not want to be caught, but he always talks about Melissa and CJ, so I know he is having fun.
My class had fun learning about the Olympics and talking about what they watched. They were so funny trying to act things out in the gym. Once home, we hung out and watched more Olympics. Taylor liked the diving. He said he couldn't do that cause it was too high and he was scared. We went down stairs to play for a while. Logan likes it down there. He was going crazy and squealing.
Pray that Taylor is healthy forever. Pray that Logan feels better soon. Pray for all of our friends battling this and other diseases.
August 15, 2004 Day +501 Day #199 off treatment
Happy Sunday. We had another good day. We went to Church and then to eat lunch. Taylor went to Church with Paw Paw and Gam maw. They brought him home at about 2:00. They say he was good, but he is a healthy 3 year old boy and wore them out. We went to Wal mart with Guh. He was fairly good, but wild as a buck. He saw Miss Shannan, his new teacher, in Wal-mart and he was so excited. He talked about it and told Daddy, but I bet he will cry tomorrow. After we got back home he and Guh played outside for a while then she left. He pitched a fit, but got over it quickly. We spent the rest of the night watching the Olympics. Taylor loves the gymnastics. He was so excited. He didn't try any strange moves off the bed or anything, but he would turn our faces to be sure we were watching. He was so funny.
Pray that Logan , who is not eating again, is feeling better soon. They both have been blessed with my allergies and sinus troubles and have loves green, snotty noses today. Pray that Taylor is NED forever.
August 14, 2004 Day +500 Day #198 off treatment
Can you believe we are 500 days post transplant. Wow!! One year ago today we were sitting in the dark in NYC. Oh, how glad I was to be in Alabama today. Even though today made for a strange day. I will take my troubles in Alabama over NYC any day. We all slept late, well late if you call 8:00 late. Actually, Taylor slept later than any of us. He and Ca Ca went outside to rotate the tires on the car and clean the basement. I stayed inside and cleaned the house. I went through both boys closets and bagged up Taylor's too little stuff for Logan and Logan's too little for the yard sale. It took forever, but I am so glad it is done. I got out all of the next size for Logan. He seems to be feeling much better. He ate like a hog today including 2 jars of food at both lunch and dinner. Around 2:00 we were ready to bust out. I knew we couldn't stay home all weekend:) Jim and Taylor left ahead of me and Lo Lo to head to Midas to get brakes on his car. I was going to meet them their and go to the toy store. That is because Taylor told me the other day that he needed a hair cut. I said no that he didn't, but he said "uh huh, I need a hair cut then go to the toy store". He knows that Toys R Us is next door to Angel Hair. Anyway, I got to Midas and they were not there and I thought maybe I went a different way and beat them, so we waited. Logan was finally asleep after screaming all the way up there, so I didn't want to get him out. Finally, I thought something is wrong and I got him out anyway and went to ask to use the phone, Jim had the cell phone. When I went in the man said that he had called and was broke down. I knew it!! The same belt came off again and they were at Morgan Rd. He had seen me get off the interstate, but couldn't get me, so i got to drive all the way to Wildwood for no reason. I went back home and Dugan and Jim fixed the car. I stayed at Midas lone enough to get his expert opinion on the situation and called them back to tell them. Sure enough it was the roter, so maybe it is fixed now. Taylor is pretty siked about getting to ride in Anna's squito bug car:) She took him back to Gam maw's house so that they could work on the car. They finally got it all fixed and Ca Ca was home. We hung out and played for a while then we met Gam maw and Paw Paw for dinner. Taylor ate pretty good. Later Gam maw and Paw Paw came to get Taylor to spend the night with them. Dugan and Anna came over for a while too. Dugan and Taylor put together puzzles Taylor was so funny trying to help him when he would pretend to not know how it went. We kept telling him to not help and he would quietly shake his head when he went to the wrong spot. He was very proud when he thought he could do something the big guys couldn't.
Please pray that we continue to have the normal days. Pray that both boys get rid of their colds soon. Logan is eating better, but still acts as if he isn't his best. Pray he is just getting over this cold or bug he has.
August 13, 2004 Day +499 Day #197 off treatment
Happy Friday the 13th! It was not a bad luck day for us. We went to school and that turned out fine even though it started rocky. Taylor started to cry as soon as I woke him up. He cried all the way to school and the entire time we waited for his teacher to get there. He was ripping my clothes off trying to hold on to me, but I finally got out of the room. I had to give Logan to miss Joan so that I would have 2 hands to deal with him. I didn't even take Logan to his class and he never cried. I tried to explain that to Taylor, but he didn't care. I left my car keys with his book bag so that he could see that I wasn't leaving, but again, he didn't care. I left him screaming and about 2 minutes later Christi came out and said he was playing play-dough and was fine. I peaked in on him at his gym time and play time in the room and he was playing with CJ and doing fine. He played ball and rode the trike in the gym. He is back to wanting to carry night night around, but we will deal with that once he gets over this fear of me leaving him. His teachers have been awesome. I know he will fall in love with them soon.
Logan ate an entire 8 ounce bottle for Lana. I tried her suggestion of making it as hot as he could handle it and he has drank all day. I guess he is picky. We saw Dr. Petelos and he does not have an ear infection. I am glad, but upset too. It is just as hard to not worry about every little thing with Logan as it is with Taylor. This is the age when Taylor's weight dropped off and he stopped eating as good as he had been, runny diapers and the such were all symptoms for him. I know it is a huge long shot that it could happen again, but it is always a scary worry. Anyway, Dr. P thinks we are on the tail end of a tummy virus. He gave me some lactose free formula to try for a week and see if that helps with the runny poops. He said that often times after a bought with a bug the babies will get a temporary lactose intolerance and the formula will aggravate their tummies more. We shall see if that helps. He only drank 2 ounces at bed time, but he did polish off a jar of carrots so maybe he was just full. Logan weighed in at 18 lb and 9 oz up from 17 lb and 2 oz in July.
We have no plans for the weekend. I am sure we will end up doing something, we always do, but we really are planning to just hang out at home.
Pray that both boys are happy and healthy and disease free forever. Pray for all of our friends battling this and other diseases.
August 12, 2004 Day +498 Day #196 off treatment
Hi all and welcome to the land of the sick people. Taylor, Logan and I are all feeling poorly. I guess Taylor really isn't since he is used to having a cough and snotty nose. Logan had a horrible night last night. He was up every hour. He is refusing to eat, so I do not know if he is hungry or hurting due to teething or an ear infection. We have a 3:15 appointment for him to see Dr. Petelos tomorrow afternoon. I hope his ear is not infected, but I hope to get an answer to his behavior. It is hard not to worry about him just as much as we do about Taylor. I mean, I know kids get sick and have runny diapers and loss of appetite, but it is hard to take those symptoms lightly when for one of your kids it led to the DX of cancer. As for me, I have a sinus infection and I truly think that my head is going to explode. In fact, I wish it would. It hurts so bad that my teeth hurt. I have awful sinuses and I live for my Cortisone shots, boy those are great.
Today we took Lo Lo to Nana's and then Taylor and I went to the church to work on my room. We cleaned up and organized a few things and made a lesson plan for this month. We are all set. We were only there a little over an hour and we left and met Daddy at the Galleria for lunch and some shopping. We were really there to pick up our photos from the banquet the other night, but since we had an hour to kill we shopped:) We picked up Logan after that, but we stayed to play a while. The last few times we went to Nana's, Taylor has played right at my feet by himself. Today he played with Peyton and pretended and actually talked to her. School is doing wonders for him. Speaking of school, he has said that he will not cry tomorrow. We will see.
He has been so funny today. We have had to play every kids favorite car game, finding beetle bugs. However, in the land of Taylor we find "squito bugs" since he can't get beetle out right. How funny. I crack up every time I hear him scream "squito bug".
Taylor went to Bessemer Academy's ball field to help Paw Paw lay brick. He was a little miffed that it wasn't "his" ballpark, but he still had fun. He is home now and still full of energy. I have taken some sinus meds and I can hardly hold my head up, so I am leaving bath duty to daddy and I am hitting the sack. Happy Friday to you all.
Pray that Logan and Taylor both get over their funk. Pray that Logan only has an ear infection or a simple cold. Pray that neither of them ever faces this beast again. Pray for all the kids in this fight.
August 11, 2004 Day +497 Day #195 off treatment
Happy hump day! Today we went to school. Guh brought Taylor and he cried and cried. It was another hard day, but not near as hard as Monday. I think Guh had a harder time than Taylor. He finally calmed down with the help of his totally awesome teachers, Miss Shannan and Miss Christi. Our class and his class usually have snack and lunch together. Since he had calmed down and was happy they decided that they would have snack after us and lunch before us and he did great not seeing me. I hated that we had to rearrange everyone schedules for Taylor, but I was so grateful to them for being willing to do it and understanding. He will do great with them once he gets over this. This is what I expected when we first started school, but he did fine, so I am sure he will get over it. When is the question!! Joy has assured me that it has happened many times before. I even had a child in my class when I taught before Taylor was sick that cried everyday when she saw her mom, so I know it happens. It is still very heartbreaking to walk away from him and let him cry.
When I picked him up he was playing with the football magnet that he got out of the treasure box and he was fine. His friend CJ was a great friend today. He helped Taylor feel better by bringing him things and talking to him. He loves CJ, so I was so glad to hear that CJ was able to help him out. He was excited to see me and I was just excited to see him playing and not crying. We went to Children's to drop off some Mary Kay and the minute I got Logan buckled in his seat Taylor tells me he needs to potty. UURGH, these are the times I miss diapers. We had to go across the street to Burger King because I was not going to carry fatso Lo Lo up those stairs to the Harbor again. He pottied and he couldn't get his belt back on. (He had to wear the clothes he wore last night to school) I had Logan, so I just fastened it the best I could. When we crossed the street to go back to the car the lady that stopped to let us go by was laughing. I thought she was just talking, but when I went to help Taylor into the car I saw why. His pants were barely on his butt and his big ole Spider Man booty was hanging out. I laughed at him and he got a big kick out of it too. I told him we could go to Sonic for black ice cream aka a chocolate shake, but he fell asleep on the way home. We went for dinner instead. He ate great, he ate all of his kids meal and his shake. He had to potty again and they keep the doors locked. After we waited for the key and get in there he sees the potty is covered with cigarette ashes and tells me he didn't have to go. It suited me just fine that he not use that nasty potty, but I wasn't sure he could hold it. He asked a few more times to go, but always changed his mind when reminded of the mess.
Ca Ca and Taylor are now outside playing. He is feeling great, but still has that stinkin' runny nose and cough. I guess we will just live with it. Logan is still not eating a lot and has his runny nose too. I also have a runny nose and cough and have sneezed a million times today.
Pray that Taylor is NED forever. Pray that he never has to endure any of this again. Pray that he and Logan are feeling better soon. Pray that Taylor gets back into his school routine and does okay. Pray for all of our friends.
August 10, 2004 Day +496 Day #194 off treatment
What a day and night we have had on this day. We started the day with a trip to Wal-mart and we bought Taylor a dress shirt to wear tonight. All of his church clothes as he calls them are getting to short and not staying tucked in his pants. After that stop we met Miss Rhonda and Landon at Applebee's for lunch. It was so nice to catch up with her. She probably isn't too excited about going back to work, but we are glad that she will be there next time we go to the hospital. After our visit we headed home to start getting ready for our evening out. Mary and the boys got there at 4:00, but Ca Ca was no where in sight. I finally found him at Paw Paw's where he had gone after nearly killing himself on I-65. He had a belt break on the car and his power steering went out. I had to rush and dress Taylor in his new shirt that also wont stay tucked in, so much for trying to fix that issue. We still got to The Club on time for the 5:30 start. We got to mingle with the other recipients and American Cancer Society staff. It was a lot of fun, not so much for Taylor, but for us. Taylor was impressed with cheese they had out of course he passed on the wine for his tea:) He loved being outside on the beautiful balcony overlooking Birmingham. He had a big time walking the flour bed walls and splashing in puddles. Yes, he we pretty wet before the dinner and awards ceremony even started. It was finally time to go inside and start dinner, but not before visiting with Janice Rogers from Fox 6. She and Taylor played a little game along with Binnie, a DJ from a local gospel radio station. Taylor ate pretty good considering it was a formal dinner with several courses. He ate salad and rice. He didn't care for the gravy, so we all had to give up any rice that didn't have gravy. He even ate some cheese cake after he smooshed it all up. He was starting to get a little antsy and loud. He was rolling his chair all over and laughing. Not being bad, but being a bored 3 year old. You could tell some people wondered why a child had been allowed in, but obviously that question was answered when he was called up to get his award. Janice Rogers was the MC for the night and she read his letter that was turned in as his nomination as photos were shown. It was powerful as were all of the stories. We went with him to get his framed feather that his name on it. He was in the company of some fabulous people that have done some wonderful things for the cancer community. Pat Sullivan was one of them. That was exciting to a table full of Auburn fans. It was funny in another way as well. Five years ago Jim and I and Pat Sullivan's daughter and new husband were on their honeymoon too. We both got married on August 7th and flew to and from Orlando together and went on the cruise together. We told them last night and the husband felt bad for not remembering us. I told him that I had not told him that Pat Sullivan was my dad, if I had he would remember me:) It was nice to see them and to meet the family. Taylor told Pat that he knew Big Al:) Hubert Green, a pro golfer healing from throat cancer was the key note speaker. We got photos with him and he and Pat both were so inspired by Taylor. It was amazing to be in the company of the "famous" people who have done so much and there they stood telling us how proud they were of us and how good we had done. One lady asked Taylor for his autograph. He signed 2 programs for her with his signature "T". He was so proud of himself. We took pictures and we will post them soon.
Taylor begged to spend the night with Guh, so he did:) Jim and I stopped to get the part for his car and then I got caught in traffic and had to get off the interstate and drive back roads home. It was a fun trip! Taylor and Guh had to stop to get Milo's tea from Wal-mart. I say "had to" in the literal since. Taylor said "Guh, I drink Milo's sweet tea. You got some"? She said no and said she would get some. She pulled into Milo's to buy a cup since it was already 10:00. Nope, that wouldn't work, so she agreed to stop at Food world. Nope, that wouldn't work either. He said, "Me like Milo's sweet tea from Wal-mart. I don't keep saying Milo's sweet tea as a plug for Milo's that is really what he calls it. Anyway, they stopped and got Milo's sweet tea, a lunchable and pajamas since he had no clothes. He didn't want a small tea either, he needed a gallon. You might call him picky or maybe even spoiled:)
Please pray for all the people that were at the banquet tonight. Pray for their continued success against the diseases that once ravaged their bodies. Pray for their families that have been through so much with them. Pray for the American Cancer Society and all the people involved in last night. Pray that Taylor can be NED forever. Pray for all the kids battling this and other diseases.
August 9, 2004 Day +495 Day #193 off treatment
Happy B'day Temp. I got you a card, but didn't get to the mailbox with it!
I know you all are about ready to ring my neck, but we have been so busy being normal that I haven't had time to update. We are all home safe and sound and doing great.
We got home around 9:30 last night and went right to bed, we were all exhausted. We had school today and it was not so good not for Taylor anyway. I started my new, full time position as one of the 4 year old teachers. I had a great time with the kids and my new friend, Julie. It is nice to be in a room that is mine and I will have a certain routine that will not change. Taylor did not take so well to the idea. We talked on the way to school that I wouldn't be his teacher and that after I dropped him in his room I would go to my room and I would see him at snack and lunch and in the gym. When I brought him in the room he was doing fine and ran to show everyone his shoes that they have already seen 100 times:) Once he realized that I was leaving he flipped out. I didn't hear him screaming when I went back by, but I didn't want to chance him seeing me so I didn't peak in on him. I saw him again at snack and he was sitting at the table crying and not eating. He finally at a little after I talked to him. He did better after snack, but still cried. He ate a great lunch even through his tears. He cried again when I left the room to help a child in the bathroom and he didn't want to line up with his class to go to the gym. My class was going too, but we were not done eating yet and he didn't understand. I know it will get better and he wasn't the only child that had a hard day, but it was so heartbreaking to watch. I wanted to cry too. I think it made it harder for him to get to see me, but I know he will get used to and be fine. He did so good in the beginning of summer. I loved teaching him, but I think I ruined him. When we left and were heading home I asked him if he had fun at school and he said no. I asked what he did and he didn't know. I guess he didn't do much other than cry. Miss Christi, Shannan's helper, was great with him and loved on him, so hopefully he will fall in love with her and do okay. Anyway, he also said on the way home "Mama, I was worried about you". How sweet.
Once we were home he was his old self again and played fine. He got a sing along book and CD from Ghen Ghen and he loves it, he listens to it all the time. He loves the song Deep and Wide. Logan seems to feel a little better, but he still doesn't want to eat a lot. I was going to take him to the Dr, but I talked to Nana and a virus is going around, so we think on top of teething, he has a sore throat and a little bug. We are going to hold off before going to the Dr. We are going to have lunch with Mrs. Rhonda and Landon tomorrow. I am excited to see her and her big man who we haven't seen since he was born.
Tomorrow night we have our banquet for Taylor's Life inspiration award. I can't wait to see him accept an award. That is pretty cool huh!!!
Okay, I will go and send this to the web for you all who have waited so patiently for this update. Please sing our guestbook so that we know you stopped by.
Pray that Taylor is NED forever and that his NED friends are too. Pray for those who are still fighting this and other diseases.
August 8, 2004 Day +494 Day #192 off treatment
Sorry for the delay in updates. We have been busy and I was updating when Jim called and we decided to meet and I never put it on the web.
Today we packed up and started home. We went a different way and went through Dawsonville and stopped at the outlets. We ate at Ruby Tuesdays and Taylor ate like a cow. In fact, after he ate I told him he ate like a cow and he mooed at me:) Gam maw and Paw Paw stayed another night and so Logan and Paw Paw went to the hotel while we shopped. It was a huge outlet. We got a few things and then we went back to the hotel. Taylor couldn't stand it, he had to get in the indoor pool. There was a little girl named Taylor in the pool and they got to showing out for one another. It was cute. We had to drag him out, but he did okay. He went ahead and took a bath and then we left. We are now on our way home as I type. We ate at McDonalds and Taylor played outside while I attempted to feed Logan. He was again not interested in the bottle. Taylor jumped right in the play area even though his playmate was a might bossy. She told him "don't you dare come in here with your shoes on". He started to take them off, but I do not insist on that since he does not have the best immune system in town. Anyway, he played fine even when some bigger boys came out. He didn't want to leave, but again he did without too much fight.
We have just crossed over the Alabama state line and he has busted out into Alabama football song. That is actually the Auburn fight song, but that is what he calls it. We are now singing all the songs we know and Logan is squealing right along. We will update again tomorrow. Have a happy Monday!
Pray that we and you have a great and safe weekend. Pray that Taylor is NED forever. Pray that he gets over this runny nose SOON!! Pray that Logan's ailments are teething related and nothing more. Pray that all of our friends are feeling well and doing well and will reach NED or stay NED.
August 7, 2004 Day +493 Day #191 off treatment
Happy Anniversary Kim and Jim. 5 years!!
Ahh, the luxury of sleeping late! We got Lo Lo up to feed him and Paw paw was already up and he fed him and we went back to bed. We were still up by 8:30. We all got ready and headed into town. We ate lunch and then walked around Helen. We got a few goodies and then had old time photos done. Taylor and Logan set in a bath tub with cowboy hats on and guns. It was so cute. I will have to get Jim to post one. After that we headed back to the cabin which was super nice. It had a balcony upstairs that looked over into the kitchen and living room. Taylor stayed up there playing. He loved it. Anyway, we went back to change clothes and get ready for the real adventure of the day. We went tubing on the Hooch! It was a 2 hour tubing adventure down the Chattahoochee River. It sucked! No, it was hard for Jim and I because we had Logan. I was holding him trying to be sure that he didn't get wet or fall into the very shallow and rocky water. Jim was having to walk or swim to get me over the rocks and keep us from being knocked over by others. After about a 20 minute struggle to go about 100 yards we climbed the bank of the river and quit! We went back to the cabin and waited for their 2 hours to be up and Jim went to pick them up. Taylor loved it and giggled and never got wet. He got scared when Gam maw got bumped and fell in. Paw Paw tore his water shoes having to keep up with Taylor's tube and keep him safe and dry. Uncle Dugan hit his chin when he went to help her and tumped his tube over and lost Anna's clothes that were in it. I am so glad that I missed all the excitement. I think it would have been fun if I hadn't had Logan, I was so stressed trying to keep him safe that I couldn't enjoy it. After they all got back and got cleaned up we went to dinner. After dinner the boys went back to the cabin with Gam maw and Paw paw and we went shopping again. It is cold up here too and we about froze our butts off in shorts. We were back in an hour or so and we watched some TV and played with Taylor's maze book. I laid Taylor on the couch to watch TV and he was asleep in about 2 minutes. We put pillows all around him and let him sleep there all night.
Logan has had some yucky diapers and no real interest in eating. I hope it is due to teething and not ears!! He slept okay, but he was also in his pack and play that is hard as a rock and probably not very comfy. He has not napped since he is so nosy!! He likes poker chips, he got ticked off when the guys were playing and he couldn't have the chips. Taylor made me separate all the legos by size and color then he didn't even build with them. Silly goose! Taylor has been rather grumpy and whiney, but I think he is tired. He gets upset when we go in separate cars, he wants to be with Gam maw and Paw Paw, but wants to be sure that we do not leave him. It stresses him out!
Pray that he is NED forever. Pray that Logan doesn't have anything going on other than teething. Pray for those that have to fight this battle.
August 6, 2004 Day +492 Day #190 off treatment
Today was a good day. I took Taylor and Logan to Paw Paw's and saw them off. I picked up Macey. Wow, what a difference between girls and boys. Taylor is like a bullet, as soon as my car is in park he is unbuckled and in the front seat to get out my door. Macey sat there just as still as could be until I came and un-did her belt and got her out. It was a different day to be at school without my kids. We had a pizza party and it was fun. The routine of the day was off, so the kids were a little crazy, but it was still a good day. It flew by. Once it was 1:30 I took Macey home and I headed for home. I got a lot done being there a lone with no one to yell they needed this or that. A friend of Paw Paw's came and used his bobcat to dig out the area we are going to put landscape timbers and pea gravel into and make Taylor's play area nice. Taylor's swing set has been taken a part for a month or so, he is ready to use it again. I talked to Jim at about 4:30 and we decided to go ahead and meet at my mom's instead of him backtracking all the way home. It took me an hour to get to her house in Friday afternoon, last weekend of summer, traffic. I was going nuts. Thank goodness the boys were already in Helen and we didn't have to worry with them getting antsy. We had a nice drive, the traffic wasn't bad at all. We stopped for gas and snacks then dinner later. It took us about 4 hours. We finally got to the cabin at about 10:30. Both boys were already asleep. Taylor had tried to wait up for us, but didn't make it. He wanted to be woken up when we got there, but we didn't.
We went to bed not too long after we got there. Logan was asleep in his pack and play in our room. I guess we woke him up coming in and getting ready for bed. He got in our bed for a while and he was happy to see us. It was pitch black and all I could hear was him smacking Jim in the head and giggling. He eventually went back to sleep and I moved him back to his pack and play and he slept all night.
August 5, 2004 Day +491 Day #189 off treatment
Today was a normal day for us. We hung out at home and cleaned some. Then we decided that we had had enough of that and we went to eat lunch with Guh. We of course went to the Olive Garden. Taylor ate great and Logan was a good boy, a loud boy, but good. He is a squealer and he was so loud. After lunch we went to the Dollar store and he again was squealing to the point of people coming over to look at him. It was funny. We went straight home after that because both boys needed a nap. We met Paw Paw and Gam maw at Cracker Barrel. Taylor and Logan went to Macey's to play and I went to the grocery store. I came home and cleaned up. We had a little sock troubles. Taylor has to dress himself these days and it doesn't always work out. Today he had crazy sock issues. His socks were not even touching his legs. He had been pulling them half way up his legs and stretching them, so I didn't think to much of it. Later on I was looking at them and realized he was wearing my socks. I do not know how he got them, but it was funny. He got them nice and dirty for me too!
Once we got back home we packed everything we needed and got ready to head to the mountains. Pray that we have a safe trip and a fun trip. Pray that Taylor is NED forever. Pray for all of our friends that fight the cancer battle. Pray for all of those that have lost a loved one.
August 4, 2004 Day +490 Day #188 off treatment
Happy Birthday Jim!! Today we are going to school and then back home. That is the plan for now anyway. We will update later, I just wanted you all to know it was Ca Ca's birthday. Taylor bought him a Clifford card and colored all over it. He picked out his presents from him and Lo Lo. He bought him 2 sets of pens. One set says Jim and the other says Dad. I thought it was a cute idea and he did it on his own. He is so sweet. They didn't have any with Taylor or Logan's name. Taylor wasn't happy, but he didn't get too mad.
Taylor didn't act like he felt up to par today. He had a major melt down when I left the room today. Oh, how I dread Monday with him getting a new teacher. Better yet, she better dread it. The boys went to Guh's and we went to dinner for Ca Ca's birthday. Both boys were fast asleep when we got home.
August 3, 2004 Day +489 Day #187 off treatment
Another day in the life of the Watts family. We hung out at home until about 3:00. I needed to go to the bank and run a few errands. Well, today Logan chose to actually take a good nap rather than his 30 minuters he usually has. We finally got out of the house and went to do our business.
Taylor had a little melt down, well, several melt downs while we were out. He got his foot stuck in between groceries in the cart and started stomping and smooshed the cookies and put them back. He was not happy with that. He got mad in the car because I wouldn't let him eat a reece cup in the car. Logan has been a piss ant all day. He is fine as long as you are in the room and he goes crazy if anyone leaves the room even if the rest of us are in the room still. He has been awful. He went to bed at about 7:00. I just don't know rather or not to take him to the Dr. or not. He is sleeping and he took all his milk today, but refused it yesterday. Who knows. He did eat some cheerios, veggie puffs and wagon wheels. He loves those new teeth!
Once home, we just sat around. Taylor went outside until he fell and got his face dirty. He was mad then and came in to take a bath. He asked to go back out later, but I was like no way, not after a bath. He has been good today other than a few "normal" 3 year old fits.
Please pray for his continued success against this beast. Pray for all the other kids in the battle against cancer.
August 2, 2004 Day +488 Day #186 off treatment
Finally, we are back to normal. We all went to school and work in our own, working cars. We had a good day at school. This is my last week with Taylor and then I go up to the 4 year old class. I will have that class permanently. Taylor is going to go crazy on Monday when I have to leave him and I am afraid that he will continue to go crazy after snack when we see each other, but then must go back to our class rooms. After lunch both classes will go to the gym together where, I am sure he will be very clingy. Anyway, we had to combine classes when on of the other teachers got a phone call about her granddaughter having a seizure. Pray that she is fine and they can find a reason for the seizure.
After school we came home and got mommy ready for her Mary Kay meeting. I have planned a party for the new fall/holiday line. I will be having it in September and you will get a bag to fill up and get a % off of your bag full of goodies. I will have tons of gift ideas and sets for the holidays. If you are interested in attending please send me your name and address. If you would like to be on the mailing list and receive catalogs and samples send me you name and address.
We had a nice normal day. Taylor and Logan are both still snotty. I guess we will just deal with it. Logan is teething, I do believe. He is snotty and pooping like a mad man. He wants food and not milk, pig. He is refusing his milk and juice these days. He has 2 teeth and he thinks he is the man.
Please give blood and platelets and save a life. Bailey is still in need of both. If you are b+ and CMV- then call the Red Cross and direct donate for him.
Please pray for Taylor's continues success against this disease. Please pray for all of our friends in this battle. Pray for the Scott family and all the other fanilies that have lost a loved one.
August 1, 2004 Day +487 Day #185 off treatment
Alex Scott passed away peacefully yesterday around 4:00. For those of you who do not know, Alex is the little girl who started the lemonade stand and has raised nearly a million dollars for cancer research. She fought her battle for 8 years. She was an inspiration to all who knew her and she will be greatly missed. Stop by her page at www.caringbridge.com/page/alexscott to leave kind words for her family.
We have unofficially reached our goal of 1000 pre purchased car tags. We have actually surpassed that goal by several hundred. We should have an official count from the state soon. Pretty soon we will have this cute little tag that means so much on our cars and we will be rolling commercials for research and awareness of childhood cancer. Thank you to all of you who purchased one, donated money, or let us have your VIN number. Thank you Deidre for starting this and pushing for it. Thank you Dan for all you did and the countless hours and dollars you put into this. Thank you Alabama for supporting kids like Taylor and Janie.
Can you believe it is August again. Where does the time go. Today we went to church and then out to eat with Guh. Taylor went back to Guh's house for a while to play. The rest of us went home to hang out. We went to get Taylor at about 5:00. He was mad and didn't want us to come, but he got over it. On the way home Gam maw and Paw paw called to see if we wanted to meet for dinner, so we did. Taylor ate great and that was good, but he ate Gam maw's food and his. Pig. Logan wasn't doing too bad either at putting away the food. After we left the restaurant, we came home and got everyone bathed and ready for bed. Taylor tucked himself in again and has been cracking us up all day with his little remarks and antics. He is quite the character. I think we have found a new movie to be stuck on. Stuart Little. Taylor watched it last night twice. He likes that he rides in the little car. He also has a new toy, a travel light bright. I do not remember what he did, but he had done something and got a prize and that is what he picked. He wanted a big one and I told him he could talk to Santa about that. Well, I am making this note to Santa right now. I have made the executive decision that no light bright will enter this house. I am so tired of picking up those little pegs and keeping them away from Logan, that I could scream. The sad part is that the travel one doesn't have but about 40 of them and they are everywhere, can you imagine the real deal with 100's of them.
Today was communion at church. Taylor went up there with us, but didn't take any. He went back up with the kids and he took the bread, but he said no thanks on the juice. It was cute. He could barely see over the railing of the kneeling bench.
Pray that Taylor never has to face the beast again. Pray he is NED forever. Pray for Alex's family and all those who have lost a child. Pray for all those in the battle.
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July 31, 2004 Day +486 Day #184 off treatment
Happy Saturday to you all. We had a nice, normal, no excitement day. We slept as late as Logan would allow and then cleaned up and did a few things around the house. We headed to Babies R Us to get a bath ring for Logan. Taylor never had one, but he also wasn't as wild as Logan is. That is a scary thought seeing as Taylor even calls himself "wild guy". I have been looking all over for one and they sale them, but they only have this huge, elaborate thing that fits over the side of the tub. I just wanted the simple little ring that will be easy to move when Taylor is ready to take a bath. As we were driving down the street we saw a yard sale at the neighbors and it had a ton of baby stuff. We pulled in just to see and there it was, a simple bath ring. He used it tonight, after a good scrubbing of course, and he had a blast. He is so wild he kept sliding around and spinning. He liked splashing. He and Taylor actually bathed together. Taylor likes to do that, but the baby tub always took up so much room that he didn't have anywhere to play, but now they both fit fine.
We went to Tannehill to visit with pippy. Taylor loved riding his gator around. He thought he was cool on the roads and going through the trees. It had rained, so it was muddy and that is always his favorite. We left early due to a grumpy Logan. He was a piss ant for most of the day today. I think he is just teething and being a baby because he is sleeping and eating fine. We bought him a bug net to go over his stroller so the bugs didn't get him while we were out and he loved it. He was being very good playing with the net until he got sleepy and fussy.
We came home and played a while. Logan finally cried himself to sleep. It was one of those days where he cried no matter what, so we just let him cry himself to sleep. Taylor played in his room by himself for a long time before coming to read in our bed. He decided he was ready for bed and he just hopped down and went to bed. He left the light on, but oh well.
Please pray that this viral infection goes away soon. Pray that he is NED forever. Pray that he never has to face cancer again. Pray for all of our friends out there that are fighting this and other diseases. Pray for Alex Scott who is not doing well. Pray for Shelby who has stopped treatment. Pray for Morgan and praise God, she has had great results on scans so far.
July 30, 2004 Day +485 Day #183 off treatment
BANG!!! That is to officially state that we ended this week with a bang. We were all up early today so that we could get ready and take Ca Ca to work then go to school. I went to wake Taylor up and he had a 101.1 fever. That is the magic number, so where did we go? You guessed it, Children's Hospital. I hated to have to call in to PDO at the last minute, but it couldn't be helped. We dropped Jim off at work and then went to Nana's. I forgot to get the stroller and there was no way I was going to take Logan to clinic and have to hold him all day. Thank goodness we didn't take him because it ended up being a long trip. We ran into a hospital employee that came to see us the day he was diagnosed. It was nice to fun to run into a new face that had known about him from the beginning. It was nice to see you Heather. I forgot to get Emla for his port, so once we got there we had to get some from the nurses and then wait and hour for it to work. Taylor loves to play at clinic and it is always nice to talk to the parents, so the wait wasn't bad. We got called back to a room, but then waited forever, it is worse to wait back there because you are bored. Well, there was a bit of an emergency going on, a blood bag had sprung a leak and they had to take care of that and somehow in the midst of it everyone assumed that someone else had drawn Taylor's labs, but they hadn't. We had seen the doctor and was just waiting on labs to be released yet there were no labs. Finally they accessed him and drew his labs and cultures. They had to draw more cultures because they drew the culture for a kid on antibiotics and he doesn't take any. He got a travel connect 4 out of the treasure chest after he was accessed, so we had a new toy to play with while we were waiting on the labs. They came back fairly normal. He had a slightly elevated WBC that means he has a viral infection and there is nothing they can do for it. He will have to wait it out. He never took Tylenol, but he is fever free. He is actually a little less snotty since he snorted so much out while he pitched his fir over her accessing him. I know that is gross, but he needed to do it. Jim and I said that we were going to pretend to access him when he needs to get it all out:) We were finally free to go at 12:15. We went to get Logan and then headed to get Ca Ca for lunch. By that time it was too late to go all the way home just to come back and get Jim, so we went to Big Lots then to Guh's to kill time. It was finally 5:00 and we got Ca Ca. We made it home rather quickly, so we decided to go on to Tuscaloosa and see about getting the car that they have now decided needs another part, but we are not going to let them put on. We figured if we got there in time we would get it and if not we would go to the mall or something and that way it wasn't a wasted trip. We were able to get it. We stopped for some dinner since it was now pushing 7:00 and Logan was ready for bed. He ate his peas then sucked on vanilla wafers while we ate. He thinks he is big stuff with those 2 teeth. We brought the car to Pippy's house then we headed on home. Tomorrow we will clean up and then go to Tannehill with Pippy to cook out and ride bikes. I am now ready for bed, it has been a long couple of days.
Please pray for Alex of Alex's Lemonade stand fame. She is not feeling very well now and she and her family could use your prayers. www.caringbridge.com/page/alexscott Pray that the viral infection goes away soon and stays away this time. Pray he is NED forever. Pray for all our friends.
I have a Mary Kay website now, you can go there and order if that is an easier way for you. www.marykay.com/kwatts20
If you would like to be included on a mailing list, and receive an email every time Taylor's Page is updated, please click here.
July 29, 2004 Day +484 Day #182 off treatment
What a day!! We got up and got ready just like any other day. I had a few errands to run and then we were off to Tuscaloosa to a birthday party. I had Jim's car since it was Thursday and he took Lo Lo to Nana's. We went to CVS first to pick up Taylor's Zyrtec. They labeled it differently than Children's RX had, so I stopped in the parking lot to call and see if it was the same. While I sat there the air started blowing hot air. It has a small leak in it and we know that, so I assumed that the coolant had run out. As soon as I stated driving again, it got cool again. We went to Wal-mart and though we didn't find what we were looking for we did find the Spiderman shoes that Taylor has been wanting. (thank goodness) We left there and headed to T-town. We had no troubles getting there and we had a blast. It was at the Children's Hands on Museum. They had different set ups to go play in. Taylor's favorite was the mock DCH medical center. He climbed on a stool behind the nurses desk that had phones and call buttons and paper work and said "Me Wayne". I laughed. I need to call Wayne, he would get a kick out of that. After the party we headed out in a hurry because I had to go home and get ready for my Mary Kay party. Taylor was going nuts for some tea, so we stopped at McDonald's before we hit the interstate. It was taking forever and I had just told Taylor that I thought we were going to have to skip the tea when I saw smoke coming from under the hood. I pulled out of line and parked and the fun began. It was now minutes away from 5:00, so everyone was leaving work, so I couldn't get anyone. I finally got Jim and mama and they both headed for us. I went in McDonald's and got him some tea and we sat at a table and low and behold right across the street was a Goodyear. We walked over and they sent a man over to look at it. Well, this is where the story gets better. In all the hustle to get someone on the phone and get tea, I locked the keys in the car. I had to wait for mama to get there to even let the guy look at the car. She pulled up at about 10 till 6 and they closed at 6, so he ran over and checked it out and decided it needed at thermostat. We left it over night and headed for home. Luckily I was able to get Jim and he took all my Mary Kay to Sharon's for me and I had mama drop me off there. After all the excitement I looked awful. I had no makeup, no Mary Kay outfit, horrible hair and I was nice and sweaty. I was a good example of what you look like without Mary Kay:) Regardless of the start of the party, we had a blast. I am so glad the ladies decided to do that and I appreciate them so much. We didn't get home until after 10:00, but Taylor was still in a good mood and Logan was sleeping and slept through being changed and put to bed. There are so many funny little tidbits to this story, but I don't care to type that long:) It was an interesting day that is for sure.
July 28, 2004 Day +483 Day #181 off treatment
Today has been CRAZY!! We started out at school where they are laying tile and we could not be in our room. It was hectic bringing the kids up and down the stairs and keeping them all together, they are not used to that long walk. They were great in the classroom though since it was all new. After school we headed to get Taylor's medicine that Meredith called in last week before we went to Chicago. Well, it wasn't ready and they claimed it had not been called in. She finally found the script and there had been a problem, but instead of calling me they just threw it to the side and let me come all the way there to find out it wasn't ready. He is completely out and he needs it. Anyway, thankfully we have good ole Meredith and she fixed it ASAP and a few hours later the pharmacist called back and it was filled. We left there and Taylor had a full fledged, people were staring, fit. He did that all the way to 280!! We picked up the boys pictures and they are so cute. We were finally done and we headed for home. Temperance came over for a few minutes and Taylor couldn't understand why she came without Chris and Christian. How dare she!
Not much to report, but that was our day. Taylor and I went to the grocery store and I tell you what, the next time I go to the grocery store it will be with one less little person. He is so annoying to go to the grocery store. I now know why my mom never wanted me to go:)
Please continue to pray for Taylor and his continued success against this beast. Pray for Bailey, our newest NB friend who is not doing very well right now. Pray for Morgan who is in NYC scanning this week. Pray for all our friends in this battle.
July 27, 2004 Day +482 Day #180 off treatment
Today has been spent getting ready for my Mary Kay show tonight. A show is always fun and exciting, but I am looking forward to tonight. I am going to Children's hospital for mom's night out. I will be part of a group that will pamper these mom's that have been at the hospital for a long time. I know first hand what it is like to live at the hospital and how draining and depressing that can be. I am ecstatic to be able to help out the ones who doing it now. I hope they leave there tonight with their spirits a little higher.
I have boxes of stuff all over the house that I have to bring with me. I am ready though. Logan is a little grumpy today. I can not decide what to do about taking him to the Dr. He is sleeping all night and eating fine, but he is tugging at his ear. I guess I will hold off and see how he acts. I swear I need a live in doctor. Taylor is still at Paw Paw's. I am going to have to take him back to the Dr. too. He is still coughing and still snotty. He just can not get over it. He is out of meds too, so I guess we will be going to see good ole Dr. P this week and he is awesome about looking at Logan too.
Well, that is all there is to tell on this cloudy Tuesday. Tomorrow I am sure will be exciting after my show tonight.
Please pray that both boys are okay and do not need meds for ear infections. Pray that Taylor is NED forever. Pray for Morgan who is scanning today and tomorrow in NYC. Pray for all the families fighting cancer and other diseases.
July 26, 2004 Day +481 Day #179 off treatment
Today was an average day. We all went to PDO. It was a little hectic since the church was having tile put down and we had to go the long way every where we went, but it was a good day. After school we all came home and Logan and Taylor played while I got ready. Paw Paw and Gam maw kept the boys while we went to husband appreciation night at my Mary Kay meeting. Jim won a car wash. We had a nice time and we got to meet all the ladies husbands. Taylor had a fit when it was time for Gam maw and Paw Paw to go, so he ended up spending the night with them.
Pray that we continue to have "normal" days like these. Pray that Taylor is NED forever. Pray for Morgan as she gets her scans this week in NYC. Pray she too is NED forever as well as all our NED friends. Pray for those who are still battling and that they can reach NED. Pray that a cure is found soon!
July 25, 2004 Day +480 Day #178 off treatment
Hi all from good ole McCalla, Alabama. We had a very nice trip, we enjoyed every minute of it, but it is always good to be home. We checked out of our hotel at about 6:00 this morning and walked the few blocks to the blue line train station. We had to wait about 15 minutes for a train to get there and then it took about 40 minutes to get to O'Hare airport. It was under construction and it was rather confusing, but we found our way. We grabbed some breakfast then headed to our gate. We took off on time and had a nice flight. It was bout 2 hours. We met the nicest lady and we all had a nice talk with her. We had a little bit of a layover in Atlanta, so we grabbed some lunch. I don't think either of us was hungry, just killing time. Again, we took off on time and it took 26 minutes to get to Birmingham. It was rather bumpy coming in due to the storm that was brewing. We got home before the storm hit. We have unpacked and put away everything. We ordered pizza and just sat around.
Logan is sitting up really good now and has started cutting his top teeth. He has been a little fussy, but I think it is the teeth more than anything else. Taylor is still snotty and coughing, so I guess we will be back to the doctor again this week. He feels fine, so I am not worried, just tired of wiping his nose.
Tomorrow starts another busy week. I have 3 Mary Kay events this week. Yahoo!! Let me know if you want your own facial or one on one appointment. We have school too, I am teaching this week and next and then we will see if there is a spot for me or if I will sub. I am afraid I have ruined Taylor. He is already, after 3 days in his class, asking every day if I am staying with him. Come August 9th, it will be like starting over. He will have a lot of class mates move up to the next class too and he will stay behind, so that will be hard too. I dread that. However, he surprised us the first day he went, so maybe he will again.
Pray that Taylor is NED forever. Pray for all the families we met this weekend. Pray for all of our friends that are battling the hard fight.
July 24, 2004 Day +479 Day #177 off treatment
We got an email today and it looks like we are going to make our 1000 goal. We do not have final numbers though, so please continue to pass the word and get as many purchased as possible in the next 7 days!!!
Today was the last day of our conference. We skipped a good portion of today. We did not need to go to the palliative care, hospice and angel parents stuff. I hear it was a very good talk and very emotional. We also skipped the emotional effects talk, since we know it is emotional and I didn't want to be reminded of it. We snuck in after the break to hear the talk on late effects of treatment. Most of it we already knew such as hearing loss, hyperthyroidism, vision loss, and dental issues. We were reassured that his hearing should not change since he is off the drug that caused that. We found out that his heart could be effected as late as 20 years after treatment, but he did not get radiation to the chest area, so he is at a lower risk for that. He is more than likely sterile. He had very high doses of Melphalan and other chemos as well as radiation that cause sterility. Young girls often are not effected as bad and often times it will reverse itself over time, but that is not the case for boys. I am not bothered by that too much, we can find ways around that. I am sure that 20 years from now when he is dealing with the issue first hand, I will be worried about it, but I look back to this day and be glad that he is still here in 20 years and get over it real fast!
Next was Rich Noose, the 40 year survivor. He did not have a stage of NB because he was DX before there was a staging system. He also did not have bone marrow involvement however, the treatment options available to him in 1963 and the fact that he is living is a miracle. He had a tumor on his spine and he had surgery and chemo. He was left paralyzed and had to eventually have rods put in his back from scoliosis and bone softness. He learned to do things on his own with his crutches and even became the 8th ranked pommel horse champ in the state of Illinois. He went into kidney failure as a result of his treatment in 1987 and in 1990 had a successful kidney transplant and has been doing great since then. He was truly an inspiration and a wonderful man to meet. His mom was here too and she was a wonderful support to all of us here. We had a nice talk with him about radiation therapy. The difference between what he got and what Taylor got is crazy. Rich was thrown on the table and left there to get radiation until he "glowed," so to speak. Taylor spent nearly 2 weeks getting marked and scanned to be sure that the radiation beam didn't hit anything but its specific target. That is a prime example of how far medical care has come.
Now it was time for lunch. This is where we made our exit and did some site seeing. We went to the John Hancock Building and up to the 94th floor to the observatory. It was an amazing view of Chicago. It took a while to get through, so we grabbed a cab and went back to the hotel. We snuck back into the conference room and listened to the last speakers. We heard Mark Dungan, a fellow NB parent, who started the Lunch For Life campaign that you all read about on our page last year. When we are home I will be posting all that again. It is a year long program that you can donate to anytime. They will run their big campaign again in September and it will coincide with Childhood Cancer Awareness month. After Mark was Pat Tallungan, the founder of the Children's NB cancer Foundation (CNCF). She lost her son, Nicky 5 years ago to NB and she and her husband started this organization to help others. She and her husband put together this conference and it was wonderful. She got emotional as she closed the ceremony as did most of us. She is truly wonderful. She has worked so hard to bring us all together with these Dr's that are helping us. This is the 3rd annual NB conference and it has been funded by the Kemper foundation. They will not be funding it next year, so she will need a lot of help to make this conference possible. I promise you that it was so informative and us parents need this. Again, when we get home I will post all the info needed to allow you to donate to the CNCF and help us be able to have this conference again next year and the years to come.
After the conference we went to the Rain Forrest Cafe and had dinner. We then went to the Sears Tower and to the 103rd floor skydeck. It took over an hour to get up there and we were there 10 minutes and we were on our way back down:). It was another awesome view of Chicago, IL. and 3 other states, Michigan, Wisconsin and Indiana.
We are now back in our room and packing up to head for home early tomorrow morning. I talked to Guh and Taylor has had a blast today playing in the sprinkler and mud and with her neighbors granddaughters. Jim talked to Gam maw and Logan was a bit fussy and Taylor has been kinds grumpy this morning. We can't wait to see them.
This trip has been great. Thank you to the Tallungan family and the CNCF for bringing us to Chicago and for giving us the opportunity to get this info and to put faces to all the internet friends we have made. Pray that Taylor is NED forever and that his late effects are few and non severe. Pray that all the families here are granted their miracle and that the CNCF will be an instrumental part of finding a cure for NB.
July 23, 2004 Day +478 Day #176 off treatment
Wow, what a day of learning. We started out with Dr. Evans from Children's Hospital of Philadelphia (CHOP). She talked about the history of NB. She has pioneered a lot of the treatment options out there now. She came up with the staging system by making index cards of 102 patients and categorizing it all one night on her hotel bed. She founded the first Ronald McDonald House. I could go on and on. She was a very sweet and funny lady and boy did she know her stuff. Next we heard from Dr. Reynolds from Children's LA. He talked about treatments for NB. There is a lot of new stuff coming that is very promising. We also talked to him about our idea to try and harvest more cells and he did not think it was a good idea. If he were to relapse it would be easier and more feasible to do it then. It is very expensive for us and the hospital to do that, so we are leaning towards not doing it. After his speech we took a break. This is when I got to meet some more internet pals that we keep up with and look at photos of the kids. We then went back to the conference room and heard Dr. Hircshfeld from the FDA. He told us about how the meds and studies get approved for use. That is a long process. Dr. Seeger also from LA told us about immunotherapy which is where you train your immune system to fight the cancer. The 3F8 antibody therapy that Taylor got is an example of this. The 3F8 was a vaccine so to speak to teach the body to fight the cancer off. An interesting note was that we all might have cancer in us and we constantly fight it off and sometimes the cancer out smarts the immune system and we get cancer. Crazy huh!
It was now time for lunch. They have provided us with some serious food. It has been so nice. We just took a short break then back to learning. We heard from Dr. Jenson from City of Hope and he also talked about immunology and T-Cell therapy. This talk was over my head. He talked about how they can take out the patients T- Cell which is an infection fighting cell and engineer it to see NB cells and then inject it back into the patient and it will bump up against the NB cells and kill it in a matter of minutes and hours. It was amazing. Next was Dr. Russell from Texas Children's Hospital. She talked more about the T-cell therapy, but Texas and City of Hope do it differently, so she talked about the differenced. It again, was way over my head.
We snuck out after Dr. Russell. The next talk was on OMS which is an eye disorder that some NB kids get. It didn't really apply to us, so we left. We took a walk to Michigan Avenue and shopped. It was nice. It was not crowded like Times Square was. We forgot the camera, so we came on back and didn't do much more site seeing. We were going to go on a river cruise, but it is cold. The high today was only 72 and it is down right cold when that wind whips between the buildings.
We had dinner, but we didn't stay for the dance. We are not big dancers. I wish that Taylor were here now that we are watching the kids dance all though I know that he wouldn't have participated. I was glad thought that he wasn't here when we were in the conferences. Kids kept coming out of the kids room upset and I wouldn't have been able to listen for wondering what he was doing.
Tomorrow we will here some more speakers. We will not be real busy tomorrow. A lot of tomorrow is about sibling care and angel parents and grief. There is one on the emotional aspects, but I don't want to hear that. I know it is emotional. Today was emotional enough. It was reassuring to hear most of it and then unsettling to hear others. Plus, we are not doctors, so we do not understand all they are saying and we may take things wrong and it leaves too many what ifs in your head. For example, Taylor was DX at 20 months, but sometimes they consider the time of symptoms presenting as a dx date which was 18 months. An 18 month old with favorable histology and no NMYC amplification has a good chance of survival and that is what he had, but he was 20 months, so that changes his survival rates. UURGH!! it is so confusing.
We had some more excitement after we updated last night. Jim was watching TV and I was in the bathroom getting ready for bed. I heard an awful racket for about 10 minutes. I thought that the people next door were in the closet doing something. I was starting to wonder if they were ever going to get done hanging up clothes. I finally started to get aggravated and came out of the bathroom to say a smart comment to Jim and I realized that it was outside the door. I looked out the peep hole and there was a man kneeling in the floor doing something to our door. I just figured it was a hotel worker and he was working on something. I went on about my business, but I happened to look at the clock and saw it was nearly midnight and knew that he was not a worker. I told Jim and he poked his head out the door and asked if he could help him. He was drunker than Kooter Brown and was kneeling trying to get his key to unlock the door. He told Jim that he was with the fire dept. Jim told him he had the wrong room and he wanted to know if we were sure. I think we would know if the room was on fire and probably would have opened the door for you:) He went on and told the guy he was with that it was the wrong room. I guess he finally got where he was going, he didn't come back here. It was funny.
Pray that Taylor is NED forever. Pray that we have a safe trip home. Pray that Logan never has to endure anything like this. Pray for all the families here and those who couldn't attend or with other cancers or illnesses. Pray for our friend from NYC, Tyler, that relapsed.
July 22, 2004 Day +477 Day #175 off treatment
Hi all, how are you all doing? We are great, but tired. We were at the airport at 4:30 this morning. We had a short, 28 minute flight to Atlanta then a short 30 minute wait until our flight to Chicago. It was a smooth flight and it has been a long time since we flew on a normal sized plane, we are used to those tiny planes. We slept most of the way. We went back to the Central time zone and landed at about 9:30. We took the blue line train which is the subway system, as far as we could. We had to get off and walk the rest of the way. It was about 10 blocks to the hotel. We had a little trouble when we got here. Our room was to be paid for by the NB conference, but they did not have it listed that way. She was going to charge us 100/night. We were not prepared to pay that. We told her about the issue and she had someone research it. We knew that we were registered back in February, so we didn't know why they did not have us listed. She left us a message while we were out and said it was all figured out and paid for. Thank goodness, we didn't have $300 dollars to pay her.
We took a walk around the city and had some lunch. We had Subway and that was the first food we have had all day. Chicago is a mix of NYC and B'ham. It is a lot of tall buildings and traffic, but things move at a slower pace. The traffic flows without all the weaving and horn honking. The cars actually let pedestrians cross the street. It is much cleaner, there are flowers and grass too. Our hotel is on the river. We are on the 25th floor of the 34 floor hotel. Wow! It is very nice, there is so much to do right here in the hotel. They don't call this place the windy city for nothing. It sounds like a huge storm going on outside when the wind whips around the buildings. The weather is nice and is supposed to be all weekend. We came back to the room and got a much needed nap. Ah, it was nice. No kids to wake us up or messes to worry about. We got up and went to a pizza party for the NB parents. Yum, Chicago style pizza, Taylor would love it. We met some new people and saw some familiar faces. We were talking to man at our table. We had been talking for a while and then we asked about his child. Turns out he is the survivor speaker. That is the one speaker I was looking forward to the most. I am not going to tell you about him until after we hear his entire story, but I will tell you that he was dx at 6 months and was finally in remission at 5 yrs and that was 40 years ago!!! We met Dr. Reynolds who purged Taylor's stem cells of any cancer cells. We also met Dr. Audrey Evans. She has been working with neuroblastoma for over 40 years! It was fun. We snuck out and went to the river walk. We went to Navy Pier and rode the 150 foot ferris wheel and the swings. It has been a long time since I rode an old fashioned amusement park ride. Look for us on TV. The Travel Channel was there filming and they filmed us leaving the ride. We headed back to the hotel then and stopped at the store for some snacks and drinks. They have grocery stores like NYC, but it is much more reasonably priced. We are now back in our room and just hanging out. There is free internet in the room, so I will be able to update every night.
Now for a little story that you will all love, but I was none to pleased with. I threw the sheets that we took to camp in the washer yesterday before going to the church. I came home and was going to dry them, but washed them again since Taylor had decided to pull his pants up without letting me help him wipe:) I just threw his undies in and washed it all again. I threw it all in the dryer later on. I went to get it out last night and stuck my hand in a wet spot. I figured that it had been in a bunch and just didn't dry. The dryer had been making a horrible thumping noise and I assumed that was the problem. Well I was wrong. The further I pulled out the sheet the wetter and nastier it was. When I pulled them out of the suitcase, I also pulled a pull up and it had been washed twice and exploded and was all over the sheets and dryer. I had to wash the sheets for the 3rd time and clean out all that gunk from the dryer. Gross!!
Logan and Taylor were good today. Taylor fell asleep early last night and we didn't get to tell him bye. Guh said that he woke up in a good mood. I hope he stays that way. Logan was very fussy. I am afraid that ear is trying to get infected. Hopefully he will not have to go to the Dr. while we are gone. He did get that other tooth in, so maybe that is all it is.
Pray that one day Taylor will be a NB survivor that speaks here. Pray that he is NED forever. Pray for our safe return. Pray for all the families here and those who couldn't make it. Pray that Logan doesn't get an ear infection.
July 21, 2004 Day +476 Day #174 off treatment
Wednesday already! I can't believe it. Today we went to PDO. All the kids had way to much energy. It was a challenging day, but knowing that I get to go on a mini vacation tomorrow made it go faster. We had fun doing a good and messy art project, but it was fun. Now that we are home, we are just hanging out. Taylor has had an awful day. I am not sure what the problem is. He has had an awful attitude, hitting and just being ugly. UURGH!!
Logan is being good, but not wanting to eat his bottles very well. I hope he is just too busy and it isn't that ear trying to get infected. He is still sleeping and playing fine. He loves school. He likes going to the gym to watch the big kids play.
We are leaving tomorrow morning, bright and early. We will update while there if possible, if not when we get back on Sunday. Please pray that we have a safe trip. Pray that Taylor is NED forever. Pray for all of our friends.
July 20, 2004 Day +475 Day #173 off treatment
You know that you are going back to "normal" when you take the basket that used to house tons of cancer related meds and put it in the closet and in its place you put a handy little rotating caddy that holds baby food. That is what I did yesterday. I cleaned up the kitchen area that used to be the "med corner" and made it the "baby corner. I think it looks much better that way. There is one bottle of medicine on my counter and that is the trusty Zyrtec that is for allergies. It was nice to roll into camp this weekend and have no meds to give to the health hut. We have come so far in the last 21 months.
Yesterday also consisted of finally unpacking most of the camp stuff and digging out a smaller suitcase to repack for Chicago. We are excited. There will be a lot to learn and it is yet another place we have never been. That is one thing I can say that cancer has brought us, travel. Before this I think I had only been to Georgia, Tennessee and Florida. Now look, we have marked Vegas, California, New York and now Chicago off the list of places to go. Anyway, we are also excited to finally get to meat some of the people that we have become very close to via the internet. There of a lot of people from all over the world with kids in all different phases of treatment for NB that will be there. Not to mention all the Doctors and researchers that will be there.
Taylor was at Paw Paw's all day and Lo Lo and I ran some errands and had lunch with daddy. He finally decided that enough was enough and he started pitching one huge fit. Roberta, that is why I never made it to your house. I called, but you were not home, so I will call you again!! I took him home and he went to sleep. I picked up where I left off at cleaning house more. Taylor came home and was sleepy ad grumpy, but still managed to have a blast with Ca Ca. They went outside and brought some cars to roll in the dirt. Typical boy stuff!
July 19, 2004 Day +474 Day #172 off treatment
Happy Monday. It was hard to get up this morning. I could have slept all day. I had to teach though, so that was not an option. The kids were good and the day seemed to fly by. Paw Paw picked Taylor up from school he went to spend the night. Logan and I went home and cleaned up. I skipped my meeting tonight. I needed to take advantage of being shy one kid to get some stuff done. We leave and I mean leave in the plane not leave home, at 5:30 Thursday morning to go to Chicago, so I have lots of laundry and packing to do. I am tired of packing and unpacking. I am at the point of just buying new when we get there and throwing it away. I wish I could, but I guess I will stick to the packing routine a little longer. I of course didn't get as much done as I should have, but I did get some stuff done. Tomorrow will be a busy day and so will Wednesday afternoon. I will be snoozing on the plane.
I guess that is all there is to tell. We will update the next few days then you will have to check back after we return from Chicago. We will more than likely not have a place or the time to update there.
Continue to pray for Taylor and his success. Pray for all his friends. Pray for Temp's mom who has been in the hospital a few weeks. Pray for Ben who was recently diagnosed with cancer. Pray for Leslie and her new baby who was born a little over 3 pounds. Pray for Bailey and that the radiation will shrink his tumor. Pray for all the others that are fighting a hard fight.
July 18, 2004 Day +473 Day #171 off treatment
Today was the last day of camp, but there was still fun to be had. We had breakfast and played on the swings some more. We went to do a group photo and then family photos. We got to make a hand painted tile to remember the day and it was with the same lady that did my party a few weeks ago. It was nice to see another familiar face out there. Taylor and Meme painted the tile with trees and monkeys so that we will always remember this trip. As you recall, last year we had to borrow John Riley's hand since Taylor wouldn't cooperate. At least this year we have his actual hand. After that we headed down to do the closing ceremony. I was able to present Camp SAM with a $700 check. This was from our lemonade stand and it felt wonderful to be able to give them a little something after all they have done for us. We also sent a check to Magic Moments. We have not been able to go meet them all personally yet, but we are working on that. I did mail some photos and I hope you get them soon. We love both of those organizations so much and are so grateful for all they have done for us!
It was time to head for home. It was loads of fun, but we were all so tired. We grabbed some lunch and ate in the car. We picked up Lo Lo who was a good boy and looked fat as a pig. We went home and did nothing. Taylor went out to help Ca Ca cut grass after it cooled down a little. We all went to bed early.
Pray that Taylor can be NED forever. Pray for all the people at camp that stayed for the week long teen camp. Pray that all those kids there have the time of their life. Pray that one day Taylor is a counselor there with an awesome story to tell. Pray for all our friends in this battle.
July 17, 2004 Day +472 Day #170 off treatment
Today we went to Camp SAM. We left early and dropped Lo Lo off at Nana's. Taylor was in an awful mood due to the fact that at 1:15 this morning he was still playing legos. We got to camp and met with his counselor. Her name was Memo and he called her Nemo all weekend. Memo was a nickname given by a little brother that stuck. I guess Lo Lo better look out! He called her "That" when he couldn't think of her name. She was very nice and we all enjoyed her company as well as that of the other counselors. After dropping out things off at our cabin, we went back to jump in the moonwalk and ride bikes and more. We also got to meet up with some Hand In Paw volunteers. Miss Nena and Ellie were there as well as Miss Stacie and Sadie. We met them last year while doing radiation at the UAB Cancer Center. Taylor didn't seem to remember them, but I was sure glad to see them. It was great to see you both!!! After a few hours of playing we headed for lunch in the gally. It was yummy as usual and full of fun and talking with all our new and old camp buddies.
After lunch it was time for the kids to go with their counselor and the parents to go off. Well, Jim got stuck with Taylor. I am not sure if it was becasue he didn't get a counselor he knew like last year or just the age difference, but he wasn't going to be left alone. Jim didn't miss much though. I really enjoyed my fellowship with friends and I am not shy or afraid to look silly, but the Yoga class was not for me. I did have fun being silly, but Yoga is meant to be serious and I had a hard time trying to be serious as I tried to put my body in these crazy positions. I had fun playing silly games with the other parents and getting to know the other parents. Jim and Taylor swam while I did that. Taylor went down the big curly slide into the pool. He was so tired that he eventually skipped out on the fun and went to nap. Jim had to wake him up at about 4:00. He went back to the moonwalk and bikes. He didn't want to go on the boat this year. I think he was really still half asleep more so than he didn't want to do it. He liked having the one on one attention of the counselors that stayed behind. I think he gets intimidated by all the people and that is part of the reason he is so shy.
Soon it was dinner time. We had spaghetti and Taylor and his counselor friend, Brett, had a great time being nasty together. I normally would not allow this sort of table manners, but seeing as he almost cleaned his plate, we just sat back and let him go. Now the fun part. We went to a camp fire to sing and make smores. Taylor made one, but wouldn't eat it. He was very tired at this point, but still managed to dig. I on the other hand, had a blast singing silly camp songs. For all of the hospital staff reading this, wait until you see the video of Richard:) Sorry Richard, but I gotta share this one! We had so much fun. We ended it on our rousing rendition of the Auburn fight song and a big War Eagle. Now it was bed time. This is where it got hectic. We were not in the big cabin like last year. We were in a big one with boys on one side and girls on the other. We were not prepared for this. We didn't have enough sheets and no blankets. We made due, but it was cold. Taylor and Jim had to share a bunk. I see bunk beds in our future, Taylor loved them, and of course he slept up top. It was a little crazy to share the showers with so many girls, but we still had a lot of fun.
I am so thankful for Camp SAM. It allows those kids to be normal for a weekend and do fun things. It allows them to be with kids like them, that understand what they are going through. It allows the parents to do that as well. We can do that at group meetings at the hospital, but we don't get to let loose and be as silly as we do at camp. It also allows us that don't go to the hospital anymore, no, I am not complaining, to see each other again. Thank you to Lynn and Jennifer and all the others behind camp that make it so awesome. Thank you to all the volunteers that come out and cook, plan and watch out kids. Ya'll are the best!!!
July 16, 2004 Day +471 Day #169 off treatment
I have 3 words to describe last night. Wow, loud, and sexy! We had so much fun. We started at the WZZK Pooka party. We were there several hours and had some food and drinks and listened to the local band, Naked Rodeo. People won prizes and tickets and back stage passes. We didn't win anything. We were all decked out for our pooka party too. We had leis, pooka beads, flip flop necklaces, the whole nine yards. Finally, it was time to go in. I was under the impression that our seats were the first row on the section behind the floor seats. Wrong!! We were the first section next to the floor. We were only about 10 rows from the stage. I could see just fine. It was awesome. Uncle Kracker played first. He played some old stuff then his song and left, he wasn't on stage long at all. There was a short intermission while they set up for Rascal Flats. Rascal Flats is not my most favorite group, but they do have some good songs and had a good show. I enjoyed it. Another intermission and then it was time for you know who. They put a huge curtain down, so we couldn't see anything. Finally lights came on back behind the curtain and you heard Kenny's voice and saw the silhouette of a man. Everyone, okay, the ladies were screaming, we just knew Kenny Chesney was right behind that thin little curtain. Well, it was actually his guitar player. Kenny came in on a moving platform from the ceiling. He was scheduled to play an hour and a half, but played a lot longer. He was so good and good lookin'. I had a blast and I think Jim did too. We got pictures and video and they turned out fair. The stage lights were messing with our camera flash. Thanks Jeanna and Bob!!! I think I have been singing Kenny stuff all day. I did make it to the stage, but he was already past me signing autographs, so I didn't get one. Oh well, I was close.
Was Taylor on the news last night? Chris Pollone from NBC called us at the concert wanting to do a story, but obviously we couldn't. I am working with him to get a story on the car tags next week. I'll keep you posted.
More good news. Taylor won a Life Inspiration award from the American Cancer Society. He will be presented an award at a ceremony of August 10th. I will give you more details on that later. That is pretty cool that my 3 year old son has such an award.
As for today, we did not want to get up. We didn't get home until about midnight. I started as Taylor's teacher today. I had fun, but I was so tired. They were a little rowdy today, but still a good bunch. I can't wait to start planning and all that again. I didn't realize I missed it until I started thumbing through the planning books. Taylor had a Dr. appointment after school. He had to miss a pool party with his classmates today. I hate that, but we had to get shots and check on this cold. He was able to get his shots. He got 3, I thought it was 5, but I was wrong. He still wasn't too happy about it. He did good though. He did not have fluid on his ears, so we do not have to go to the ENT. Yeah!! I was not looking forward to another set of tubes. He said he has a sinus drainage issue and allergies, no contagious things. He said stick with the nebs and Zyrtec. He looked at Logan's ears too. He has fluid on his left ear, but no infection. He said to watch him and if he gets real fussy, not eating and sleeping to bring him back because it is probably infected, but maybe it wont get that far. He said his runny nose was teething. He still hasn't cut the other tooth yet. I wish it would come on. He is soooo drooly. He and Taylor are running a close race.
We go to Camp SAM tomorrow. We are looking forward to some fun in the sun and to visit with all our clinic buds that we don't see anymore. We are happy to not have to be at the hospital, but we do miss our friends. We will do another update Sunday night when we get back. Please pray that Taylor feels okay and that the Zyrtec kicks in. Pray that he is NED forever. Pray for all our friends!!
July 15, 2004 Day +470 Day #168 off treatment
Hi! Today is the big day. We are going to see Kenny Chesney tonight. As for the day. We are cleaning. Taylor and I are stuck here since Jim used my car today. That is a good thing, I can't talk myself into going to Wal-mart and I am forced to stay here and clean up.
Logan is at Nana's. He was still congested this morning, but was smiling and laughing so maybe he is feeling a little better. He did sleep all night. Taylor had a fever this morning. I have him a dose of Tylenol and so far he is fever free. He does have a lot of thick green snot, so here we go again. He goes to the Dr. for shots tomorrow and I am going to have him looked at and hopefully get him some meds and maybe another one of those Rocephin shots. That thing did wonders last time he was sick.
I will update again later or tomorrow and tell you all about the rest of the day. Please pray that this cold is gone soon and we do not have the issues that we have last time. Pray that he is NED forever. Pray for all of those fighting cancer and other diseases.
July 14, 2004 Day +469 Day #167 off treatment
Today I kept the infant class. It was fun to play with the babies and they were all good, no one cried, but it was a long day. The time goes by much faster when I am busy with the older kids. I will start with that class on Friday. Taylor went in with no problems, I figured that there would be a fight since he didn't want to go to VBS. He did fine though.
Logan has a cold too. He does not feel well and is being a pill. He is eating good and playing, but he is stuffy and his teeth hurt. I hope this passes soon.
I went to a skin care class with my Mary Kay director to do some training. I had fun and learned a lot. It was a late night, but Taylor was still up and going strong. I finally got him tucked in and still and he went to sleep. He is still not feeling well. He is back on the Zyrtec, so hopefully he will be better soon. He did not want to go to VBS again. I think he is used to a smaller group and he is so shy. I think they don't see him and he gets left out and is too shy to speak up. I am not sure what happened to make him not want to go. I wish he would go, but I am not going to force him. He will have plenty of summers of VBS when he is older. He has only been back in a daycare setting a month, so he is doing good. I think he is also intimidated by the real big kids that are there. They are not bothering him, I think he just isn't used to that.
He has been so funny. I can not even remember all the things that he has done to keep me laughing. He is silly and smart. He can catch you off guard. He loves to sing. We sing all the time. I must say a HUGE thank you to Nancy for buying him the Shrek cup dispenser and cups. He begs to brush his teeth to get a cup of water. We used to fight 2 times a day to barely get his teeth brushed, now he begs and we get a good brushing several times a day.
Please pray for our friends. Pray that Leslie has a healthy delivery, pray that Ben can be treated, he just learned of his cancer. Pray that Taylor can be NED forever.
July 13, 2004 Day +468 Day #166 off treatment
Clinic day. Wow, it seems like forever since we have been to clinic. It was a relatively short visit, but that could have just been an illusion due to all the trips to the trips to the cafeteria. Taylor left his cereal at home and we bought some before we even went to clinic. Well, he dumped that all over the lab when he pitched his fit over the blood work. I know it doesn't hurt or not bad anyway since he slept through it once before. After we turned it his urine and weighed we had to go buy another box. Well, you guessed it, he spilt that one all over clinic 5's waiting room. Anyway, all was fine. He was 32 pounds and 37 1/4 inches tall. He had all normal counts and a runny nose. He has missed that last few days of his Zyrtec and he immediately got a runny nose, so at least we know it is working. He checked out fine. He will not go back until September 22nd. That is a long time:) What will we do with ourselves without any Children's Hospital time for that long?? That one day will make up for all the lost time though! He will arrive at 8:30 and get accessed and have labs drawn. He will go back to clinic and see Dr. Berkow for his check up then go back upstairs to do his CT at 12:00 and his MIBG at 12:30. I know that all that will get turned around, but who cares when it is in the good ole, Southern state of Alabama and we are going home to our beds. He will be NPO all day, so that will not be fun, but again, it will all be okay since we are coming home once it is over. Plus, I would rather starve him one day that 3 in a row. We already have our SSKI drops that protect his thyroid from the radioactive dye they inject for the MIBG scan. I am not sure when we will go in for the MIBG injection, I will have to get Meredith to look into that.
We went up to visit our new friend Bailey after clinic. He has just been diagnosed with Neuroblastoma. He was not feeling real good, but he did talk enough to tell us bye. I was glad to be able to help and stop by and talk. Call us anytime guys!! Pray that Bailey's tumor starts to respond to the chemo and radiation and shrink!! We were going to go by Magic Moments and meet all our new friends there, but both boys dozed in the car, so we went on our way. We had lunch with daddy and then went to non other than "malmart" as Taylor calls it.
We are now home and preparing to go to VBS. The kids will give a program at 8:00 Thursday night. If you want to see Taylor in that please go to the Pleasant Hill UMC sanctuary at 8PM on 7/15. Jim and I will miss it due to our concert. I think I will get over when I see Kenny Chesney! Friday Taylor goes for his 3rd month (out of 7) of immunizations. He will get 5 again this time, so again, he will come out of there ticked off.
Our friend Leslie, who is due with baby number 1 in September, went into the hospital last night. She has had some troubles and they are trying to hold off labor. Pray that they are able to safely stop the labor and if she has to deliver, that the baby is healthy. We are praying for you Leslie and family.
Late addition: Taylor decided he didn't want to stay at VBS. I have no idea what upset him, but he fell apart. I took him on with me, I am not going to force him. He said he wanted to "go the next day". We will try again tomorrow. I have other news. I have been asked to teach the 3 year old class until August when the full time teacher comes back. I hope that will lead to a full time position for me. If not, I will keep subbing. I will be in the infant room tomorrow. That will be tough for me. I will be with Logan and I will have to let him cry to tend to others. I can listen to him cry, but I know it will be hard when I am sitting there with another kid in my lap and him staring at me. I used to give lunch breaks in the infant room when Taylor was there and I always hated to see him get jealous of others. Oh well, it will be fun.
Please continue to pray for Taylor and his continued success against this disease. Pray that all of our friends are able to beat their diseases too. Pray for all of those who lost a loved one to this or other things. Pray for those who will soon be diagnosed and start walking this path.
July 12, 2004 Day +467 Day #165 off treatment
Today we spent the day at Guh's. Taylor ended up taking a very good nap. It was good that he did since he had stayed up late and was going to Bible School. I had my Mary Kay meeting, so Jim had to get Taylor to and from VBS. He seemed to have enjoyed himself. He was still up when I got home and was being silly. He has way too much energy. Taylor had fun at Guh's. He planted flowers, played in the sprinkler, he played in the sand box and much more. Logan enjoyed his rolling all over the den.
It was a fast day that didn't consist of much. That's nice huh? My MK meeting turned out to be an emotional night. It was nice to be sitting with 4 other ladies that were supporting me as I stepped back into the land of the living. I just got all choked up when I realized that almost 2 years ago, I had no idea that I would be here, that Taylor would be here. God is so good. I feel so blessed to have witnessed, first hand, a true miracle.
Pray that Taylor will be in remission forever. Pray for all our friends that are battling this disease.
July 11, 2004 Day +466 Day #164 off treatment
We went to church this morning. Taylor loves school and has no trouble being dropped off, but something about children's church throws him. He wont go alone, so he stayed in church with us. He does good and is quiet, so we will just work on it. He was so funny today, he and his school friend, Griffin, were passing notes. We hung out around the house today until time to go to Bible School. I told him he was going to school and he was mad that he didn't have his lunchbox. Too smart. He had no trouble being left tonight. In fact he was telling me to go. I went back to get him and he was doing the motions to a dance, but was sitting down. He finally got up and joined in. He looked all sad when I went to get him, but he said he had fun and I think he had been holding "it" since he told me he had to potty and took off running. He refused to go to the women's bathroom to let me help him. I waited forever for him, I was about to go in the men's room after him when a little boy went in and smashed right into Taylor who was waddling out with his pants around his ankles. He is trying so hard to be big. He wanted to cry, but he didn't. He said he was going back tomorrow.
Guh was waiting in the parking lot for him. He went to spend the night with her. We told him it was his decision to go to school or stay at Guh's tomorrow. I bet he stays at Guh's. Ca Ca will take him to VBS tomorrow while I go to my MK meeting. Be sure to let me know if I can help you with some skin care or color.
We have had a nice weekend. This was the last one that will be slow paced for a while. Thursday night is the Kenny Chesney concert, Saturday we go to Camp SAM for the day and night. The following Thursday Jim and I fly out to Chicago for 4 days. The next weekend we are going to the mountains. We are busy little bees for the next month or so. It will all be fun though and make for some juicy updates:)
Please pray that Taylor can be NED forever. Pray that all our travels will be safe. Pray for all of our friends who battle cancer everyday. Pray that those who are NED will stay that way and those that are not can get there soon.
July 10, 2004 Day +465 Day #163 off treatment
The weekend is here. Are you enjoying yours? We certainly are. We went back to the Galleria last night. We hob-knobbed with the Red Cross personnel:) We met Devon Walsh who took over for Andrea Lindenburg. We are going to help her get in touch with a kid in treatment and do a story on the car tags. We are so close to the 1000 mark yet so close to the deadline. We need about 200 more tags to be purchased. PLEASE!!!!! contact me and let me know if you are interested in purchasing one or giving us your VIN number and we can buy one for you with some of the donations we have gotten. Check out the above website for all the info you need to purchase one via Dan or your local tag office. If you go to the tag office, DO NOT let them tell you that you can not buy it or that it is over. Make them get you a commitment to purchase form and tell them you want the curing childhood cancer tag.
We had a great time visiting with all our friends last night. They were close to 400 pints when we left, so maybe they reached their goal. I saw several familiar faces coming out of the donation room. Thank you to all of you who gave blood!!!
Today we went to get the boys pictures made. Boy, it is tough with two. If one was smiling the other wasn't or was looking the wrong way. It was awful. Taylor kept doing this huge fake smile, but they are still cute. We had a nice lunch and then went to Gam maw and Paw Paw's to swim.
Please pray that Taylor can be NED forever. Pray that all our friends can be NED too. Pray for Morgan and her family as they had a not so fun trip home. Give them some kind words at www.caringbridge.org/nc/morganbarnes
July 9, 2004 Day +464 Day #162 off treatment
Happy Birthday Pippy!
Good Friday afternoon to you all. We are having a great day. We started it with an early morning trip to the Galleria to do the Tuttle and Kline radio show. It was fun. I love to do TV interviews and radio was fun because you get to wear headphones and talk into the microphone. It was fun and Kelly and Kevin were both very nice. The blood drive is from 8-8, so you all still have plenty of time to get the Wynfrey and donate. You can also sign up for a car tag while you are there. Dan and Diedre will be there. If you are interested in a tag, but can not afford one right now, please contact us and I will help you get in touch with the Dan to get one with the funds donated to the tag effort. We have to have a vin number for every $50, so we can purchase a limited number if you will sign up!!!
I subbed in Taylor's class today. It has been 2 years since I taught, but it was fun and not bad at all. The ice cream man came and they did great. No one made a huge mess. I had so much fun watching Taylor. He didn't pay any attention to me, he just went on about his business. He has another girlfriend. He constantly was holing Kami's hand or putting his arm around her. It was so cute. I had a lot of fun. Logan did too. He went to the nursery. They said he was very content all day which is normal for him. She did come ask me if it was normal to shovel the food in him and yes, that is normal too. He loves to eat!
Taylor ate a nice lunch at school and then ate an ENTIRE, every bite, of a Happy meal once we got home. We are going back to the Galleria tonight. Jim is going to give, I have not had 56 days since my last donation. Taylor was very upset this morning when no stores were open and the carrousel wasn't running, so we are going to go back and take care of all that.
As for the weekend. We are going to have the boys pictures taken on Saturday. We will go to church Sunday and Bible School starts next week. I hope Taylor will go and participate.
Pray that Taylor continues to be in remission forever. Pray for all of our friends that are still fighting to reach remission and pray that the ones that have NED status can keep it. Pray for all those who are newly diagnosed or will be diagnosed soon. Pray for the families dealing with the loss of a child or other family member.
July 8, 2004 Day +463 Day #161 off treatment
There is a blood drive at Children's Hospital in the Harbor Center. It is all day today. You may enter the Harbor Center from 6th Ave. or go into the hospital and go across the 2nd floor cross walk to enter the area where the blood drive will be. Also, there is a blood drive at the Wynfrey Hotel tomorrow from 8-8. Tuttle and Kline and Fox 6 will be there. We will be on Tuttle and Kline which is 107.7 the X between 8 and 8:45. Please listen to us and PLEASE give blood.
Today we are going to lunch with Guh and her Work girl friend as Taylor calls her. He should be here soon. He went to Paw Paw and Gam maw's last night. I missed him once he was gone, but he was getting on my nerves before he left. He was being so annoying and bad. I see that school is rubbing off on him. Speaking of subbing, I will be subbing for Taylor's class tomorrow. That should be fun. I am actually excited, not just to make some money, but to see what he really does at school and how he interacts with the other kids. I hope he doesn't act different or try to cling to me.
Please pray for all our friends. Pray that Taylor is NED forever.
July 7, 2004 Day +462 Day #160 off treatment
Please remember to go buy your curing childhood cancer car tag or go online to fill out the power of attorney form and mail it in after you get it notarized of course! We only have 24 more days to get to the 1000 mark. This is a very easy way for you to help in finding a cure for childhood cancer and helping kids like Taylor and his friends Morgan, Alex, Janie, and Austin. It is very important to families like ours that this tag pass. It will ensure that there is a constant flow of money going into Children's for research. Please, do this for the kids!!!
Remember the blood drive Friday, July 9th, at the Wynfrey Hotel. I do believe it is on the first floor from 8-8. Taylor I will be there at 8:00AM to do a radio broadcast. We will be on Tuttle and Kline. I will admit that I have no idea who that is or what station, but I will try to find out. I will let you know if things change as long I as I know about them ahead of time. We were just told to be there at 8 and they will put us on where they can. There will be several radio and TV stations there, so you never know where we might pop up at. Please go out and give blood. This too is an easy way for you to help others. Not all of us are doctors, nurses and surgeons that play an active role in helping to cure people, but giving blood is an easy way for you to play a role in that too. Many times Taylor lay weak and helpless due to low blood counts and platelets. Had he not had those transfusions he would not be here now. Someone took time out of their day to donate blood products and they saved my babies life. Wont you do that too? It is a wonderful feeling! If you do not live in this area you can call 1-800-GIVE-LIFE and find a Red Cross or a blood drive location near you.
It is early and I have no idea what is going on today. We have no plans, so we will see what happens. Taylor is at school. I dropped him off and he immediately grabbed a chair and added it to the bus that the kids were making. He had no trouble jumping right in. All the kids yelled "hey Taylor" when we walked in. I am so glad he likes school. He talks about the kids all the time and we do the pledge all the time now, so he is listening and learning.
I am sure that the rest of today will consist of a wild child and a one tooth grinning baby playing in the floor and a mommy cleaning dirty undaroos, but hey it's all in a days work. As frustrating as it all is, I am so very thankful to have a happy healthy 3 year old that gives me troubles and messy pants. Ain't life grand!
Pray that Taylor is in remission forever. Pray that we never again have to fight this beast. Pray that the car tag passes and that it helps in finding a cure. Pray that there is a cure very soon. Pray that all our friends fighting win the battle soon. Pray that all those families who have lost a child or other loves ones are comforted today. Pray for all the hospital staffs around the world helping to win the battle.
July 6, 2004 Day +461 Day #159 off treatment
Hi all! Today was an interesting day. No it wasn't it was a crappy day, literally. Taylor pooped in his pants 3 times. He kept doing it and I finally told him next time he was cleaning the underwear out. Well, a little bit later he started screaming and I went running. He was on the potty, pooping! We danced and hollered and acted the fool for about 10 minutes. I thought how great, he finally gets it. I was also relieved that he had pooped a ton and surely he was done for the day. Wrong! I went to the bathroom myself and when I came out not 5 minutes after he pooped in the potty, he was in the living room crying. I asked what was wrong and he had pooped another ton in his pants. I don't even know where he had it all stored. Anyway, that's what we did yesterday.
We finally got all cleaned up and left to go to Guh's to eat with her and go to Target. Taylor had not eaten very good all day, so I told him if he ate really good he could redeem himself and get a prize at Target. Eat good he did! He ate all but a few bites of mac and cheese, a piece of bread, a few fries, and salad. Pig! He was awful all through dinner and Target. He was so wild and defiant, I was ready to kill him. I didn't though, I just put him to bed as soon as we got home. He was tired though because he was gone in no time.
Again, nit much to tell you about. Please continue to pray for all of us and for Taylor's continued success against the beast that once lived in his body. Pray that he is NED forever. Pray for all our friends still fighting the battle and those families who lost a loved one to this and other diseases.
July 5, 2004 Day +460 Day #158 off treatment
I know that the last few days have had boring updates, but guess what? Today's will too. It is so nice to not have anything to report to you. That means we are normal and that there is no medical things to tell about or explain.
Today we went to Guh's house to celebrate the 4th again. We had hamburgers and
hotdogs this time. Taylor ate okay again, but had eaten a lot this morning. He
had a blast riding his bike and vroom vroom with Drew and Blake who had their
bikes. We just sat around and talked then we all had some homemade ice cream
with fruit on top. I bet you will never guess what Taylor had? Cool whip in a
cone. He had several helpings too.
Logan has been sitting up very well the last few days. In fact yesterday he sat up about 20 minutes. He does topple over when he gets excited, but he is doing well. I think he has another ear infection, but I am holding off to see how he sleeps tonight. He is eating fine, but he didn't sleep well last night and he has been pulling at his ear. I am not sure if he was just overly tired from yesterday or if he had an ear ache. He hasn't really pulled at his ear today like he did yesterday. He watched the fireworks. He never really cried, but he did blink with every boom.
We are home now and cleaning up and cutting grass. Logan is fussy and Taylor is in desperate need for a nap. We have no more plans for this week. Next week will start our busy July schedule, so we will enjoy this slow week.
Pray that Taylor remains in remission forever. Pray for all of our friends!
July 4, 2004 Day +459 Day #157 off treatment
Today we went to Gam maw and Paw Paw's. We ate a huge Bar BQ lunch. Taylor ate fair at the table, but he picked all day, so he did okay. He was eager to get in the pool. We all got in today. We had fun, but Daddy, Charlie and Uncle Dugan got a little too rough and Taylor was mad. He is like his mama, he just wants to float around and not rough house. He still had fun. The girls got bored and headed to Wal-mart. Taylor went too, but fell asleep and slept in the buggy while we shopped. We got home just in time to eat again and play a little bit and then head out to watch the fireworks or so we thought. We headed to the Watermark parking lot to watch the Visionland fireworks. The paper said it started at 8:00, but once we and half the city got there we discovered that it started at 9:30. We just hung out and waited. Taylor had a blast and Logan ate a bottle and fell asleep. We left shortly after it started, crazy I know, but Taylor had chosen that moment to poop in his pants. Logan stayed asleep and even slept through getting his PJ's on and getting put to bed. Taylor on the other hand still had energy. He did get in the bed or the floor. He has not slept in his bed in a month. He has to sleep in his "huntin' club". He didn't make a mess, so it must not have taken too long to fall asleep.
July 3, 2004 Day +458 Day #156 off treatment
Good Saturday to you all. Today was not special, but we did get out. We went to Pop's where there was a yard sale going on. Taylor stayed with Pippy and Pop while Jim and I went to the grocery store. He had a great time riding his gator and go kart over there. He was ready to go though once we got back. He was very tired. He wanted to go to Paw Paw's so we went over there for a while and swam. Taylor had a lot of fun swimming with Uncle Dugan and Ca Ca. Gam maw and mama watched Lifetime movies instead.
It was late when we got home, but Taylor still had no desire to sleep. He finally let me tuck him in. I have no idea if he went right to sleep or not because I did!
Sorry this is a boring update, but we are just normal folks doing normal things!! Please pray that it stays that way!
July 2, 2004 Day +457 Day #155 off treatment
Hi all. Today is Friday and this week has flown by. We have the results to Taylor's bone marrow tests that were run on Monday. I will give the NYC Doc's a pat on the back for promptness. If you email them or call them you get an answer fast. Our Docs here are very prompt as well, but that's all I can say nice about NYC, so I am giving them that one. All tests are CLEAR!!! Praise God!
Speaking of prompt. I talked to Cindy the nurse practitioner on the stem cell unit today. We were supposed to start G shots on the 4th and try to pherise Taylor's stem cells this upcoming week, but surgery couldn't fit him in to place a line. Plus we decided that we want to try and get his port taken out at the same time. It is beginning to look like he is getting sedated every time we turn around. Plus every time he has surgery we have to do APASS and I hate APASS! She rescheduled it for the following week, but we have so much going on that week and camp SAM that weekend and they couldn't get his port surgery scheduled that quick, so we opted to do it later. It may be August with all the running around that we have to do this month. Kathy will get back to us soon.
Taylor went to school very upset for the first time today. However, it was not me. He discovered that a frog had been run over in our driveway and he fell apart. He was upset that the frog needed his mama and ca ca. How sweet and sad. He cried and cried. He finally let me go when I said that I would come back and eat lunch with him. They had the parents come back for a hot dog lunch for the 4th. I didn't bring a camera since I just thought it was lunch. I wish I had. They sang for us and said the Pledge of Allegiance. Taylor was holding his hand over his heart and moving his mouth, but I don't know if he was saying it or not. He said the blessing too. It was so cute. We were done eating by 12, so we stayed and played. He was so funny to watch. He interacted just fine and did everything the other kids did. He is the loudest, well the highest pitched anyway. They were running and screaming and you could detect his voice over everyone's. Logan was good as gold. He was entertained by it all. He screamed right a long with them and his little head went back and forth as he watched them run. I finally was able to drag him out when he went to the potty. He got distracted and forgot what was going on in the other room, so we left.
We hope you all have a wonderful and safe 4th of July. We certainly will. Even if we sit home and do nothing all day we will beat last years events. Last year we were inpatient in NYC. 'nuff said! Pray that Taylor can be NED forever. Pray for all our friends in the fight with us.
July 1, 2004 Day +456 Day #154 off treatment
I can not believe it is July already. Where is this year going? Sorry for the lack of updates, but it has been busy. We are home and up at this early hour getting ready to go to the funeral. We have tried to explain it to Taylor. It was really to get him bed, but also we are going to see her today and we wanted him to know what was going on. Anyway,
Yesterday we slept late, real late, like until about 10:30. We knew Taylor was NPO and so that was easier than occupying him with no food all day. He got up and went to the playroom with Jim. I packed and washed the linens and cleaned the room. I was not done when it was time to go, so they went on ahead and I got us checked out and walked to the hospital just in time to wheel him up. It was the first scan that I have been able to sit in on in a while and I hated every minute of it. It is so hard to sit and watch something you can't read and make guesses at what it all is. A huge spot showed up on his back and I just sat in disbelief that it was cancer seeing as he has complained of back pain lately. Well, it is obvious that I need to quit trying to play doctor as the scan was read and is CRYSTAL CLEAR!!!!! Praise be to God. I guess we just say his port from the back side. Who knows, who cares, it is clear. We will get the results from the marrows and urine next week. I met Dr. Kushner in the hall and asked him to go read them. I was playing, but he really did it. We had results about an hour after the scan. He also gave us permission to scan here at home. No more NYC!!!! We did not come off study and we can go back if we ever need or want to. We will do CT's every 6 months and marrows and MIBG's every 3 for another year and then we will do CT's every year and the other tests every 6 months.
We had a smooth flight and a quick one too, our pilot boogied! Taylor stayed awake the entire time. He was good though. He ate a little of this and a little of that. He talked to me about everything. He thought the clouds were smoke. He thought he could take his seat belt off because the picture of a seat belt is just showing an arrow to buckle it and he knew it wasn't buckled, he tried to convince me to take it off. Smarty!! He was silly. He wet his pants on the MIBG table. We forgot to put a diaper on him. We had to rush back and wash them since they were radioactive from the dye in him. Guess what? Those pants are still in the dryer at the RMH. We forgot all about them. Oh well, I will trade those pants and undies for those great scans any day!!! I think Taylor may have been on TV today. CBS contacted us to do a blood shortage story and we couldn't do it since we were not here and they asked if they could do it with old footage. I have heard from a few people that it was on, but we missed it.
There is a huge blood shortage. I can not even stress enough the importance of giving blood. It has saved Taylor's life on many occasions as well as countless other kids. It saves the life of kids and adults everyday. You never know when you may need it. Please call 1-800-GIVELIFE to make an appointment. There will be a blood drive on July 9 at the Galleria. They also need platelets. That is a longer process, but that also means that there are fewer donors and fewer in supply. Please donate blood or platelets!!!
We had the service for Peg today. It was very nice. She will be missed very much. We had a nice visit with family afterwards. Taylor pooped in the potty and pottied several times. He soon got caught up in the action and had an accident. Oh well, he has done so good. He swam for a long time. Both boys are sound asleep and I bet we don't here a peep out of either of them until morning. Taylor is ready for school tomorrow. I had dinner with a bunch of friends from when I worked and Temperance went with me. We had so much fun. Thanks guys!!
Please send up many prayers of Thanks for Taylor's scans. Please pray that he is NED forever. Pray for all of our friends that are still in treatment. Pray that those in remission are healed forever.
Pray that the marrows are clean as well. Pray he is NED forever. Thank God for these wonderful results. Pray for our family as we go to the funeral and the days ahead. Pray for all those battling cancer.
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