Quick Jump: 1st Quarter 2004: January February March
March 31, 2004 Day +364 Day #62 off treatment
Happy hump day to you all. We are having a good day other than it started to early:) Logan woke up at about 5:30 rather than his normal 6:30 and Taylor got up at about 7:30 rather than his normal 8:30. I was able to hold him off until 8:00, but that was all he was doing. He was itching to get into his prize from Wal-mart last night. He and Jim went to Lowes and 2 Wal-marts to get top soil to plant our new flowers. He started out with a fishing box that was $2. However, as they walked towards the check out lines he spotted an out of place toy that he could not live without. He traded the fishing box for the can crusher arcade game. It is cute though. You shoot ping pong balls at plastic cans and if you hit it, it crushes and falls. It is more like a carnival game than an arcade game. He is not strong enough to pull the trigger and he has no aim, but he has had fun trying.
Taylor fell asleep in the car last night around 8:30 and slept in his clothes all night long. Logan finally fell asleep around 4:30 and about 10 minutes later Taylor woke him up. That was only half his troubles yesterday. Taylor just could not listen. He got night night taken away, his tea too. He had to drink milk and therefore he refused to eat dinner. I suppose he was hungry since he never ate his pizza either. He finally got tea, but he had to choose tea or night night and tea won! Go figure!
Logan has been better today, hut is back to 6 ounces. He is so wishy washy. He is whiney again, but I think he is sleepy and Taylor is just to loud and busy. He laid on his tummy for about 5 minutes, but he just laid his head down and didn't even try to hold it up or roll over. I heard from a lady the other day that has 3 kids one is Logan's age and the others Taylor's age. The older 2 never rolled over in either direction as babies, but crawled, sat and walked early. So, I guess it is okay if he never does it.
Taylor has been cracking me up. We try to count and say our ABC's all the time, but he says "can't" because he doesn't want to. Well, today he was singing and I wasn't really paying any attention to him until I heard him say "ready or not hear I come". I started to listen to see if he was just singing or playing hide and seek by himself. He was just singing, but he was counting 1-10 in the right order all alone. If I ask him to do it he does it all crazy so I don't know if he is being silly or if he didn't even realize he was doing it. He has also been playing ball. He has a little blow up bunny that is about knee high to him. He has been teaching it to play ball. It stands up on its own, so he will stand behind it and help it hold the bat then he will hold its hand and run in circles or bases as he calls it. He is so funny.
Please pray that Taylor can be NED forever. Wouldn't it be cool if one day he was the survivor speaker at a NB conference or better yet, Dr. Taylor Watts, survivor!! Wow!! Pray for Carter who is having a scan to day to see if the mysterious spot that was on his last scan is cancer or something else. Pray it is nothing!! Pray for Morgan and her family as they head to NYC today for her round of scans. Pray they are all clear with no mysterious spots to worry over. Pray for Sophia, Cam, Levi, Chris, Carl, Trey, Lexi, who are all fighting relapse. Pray for Alexis who is on hospice. Pray for Deanna and Austin's families as they near the one year anniversary of their angels going to be the Jesus.
He has eaten almost a whole bag of gold fish and a little noodles. He is too full now for lunch! He has also said that his legs hurt, but every time he says it he points to a different spot and giggles. I think he just knows he will get a rise out of me, so he does it. He is running around like a crazy man. If he does have pain it is probably from one of the many dives onto the couch or sliding like a ball player in the kitchen.
It looks like the Summit is a no go. They have a paying vendor that sales lemonade and we can not take away from his sales. I personally don't see the big deal since it is one Saturday, but I suppose I would see it differently if it were my job not just a one time thing. So, we are back to the drawing board, but the girl I have been dealing with has been great and is helping me contact other places to try and set it up. If you have any ideas or contacts let me know.
I am waiting on the call from the Red Cross. I am meeting with John to set up the final details of April 10ths blood drive. Be sure to be there and pass the word!! I will update tomorrow on the details of it all.
March 30, 2004 Day +363 Day #61 off treatment
Well, Taylor got back home around 2:00 yesterday afternoon. He had worn Paw Paw out. He was good all day until Guh got here and he had a little fit over wearing shoes to go outside and then at bedtime he pitched a fit over the cup his drink was in. He didn't want that one anymore. He slept with no drink. I guess if I wanted that fight every night I could put the tea in the wrong cup and he would not sleep with tea. HMMM....I'm not sure it is worth it.
He shot silly string all over the place. The deck is a rainbow of colors right now. I went to tan last night and brought home Arby's. He ate all his potato cakes and roast beef and left the bread. He wanted more, so we will try going there rather than Don Don's at least he will get something besides chicken nuggets. We also cleaned the play room last night. We will see how long that lasts! We had to send a lot of stuff via email to the marketing manager at the Summit. It is looking pretty good for having the lemonade stand there. Again, we will keep our fingers crossed and see how it works out.
We found out yesterday that we will be traveling to Chicago, IL. in July for the neuroblastoma conference. We will be gone July 22-25. We will hear several doctors, researchers and survivors speak on the topic of neuroblastoma. We will hear about new studies, trials, drugs etc as well as life after cancer and late effects. It should be interesting. We are also going to try and fit in a Cubs game and the Oprah show. We have to wait until we get the itinerary for the conference before we schedule other activities. hopefully we will know within the next few weeks.
Taylor will go to the dentist on Thursday. He is going to the Sparks center which is for special needs children. He falls under that category medically due to transplant. This will allow us to have his teeth capped a little quicker than doing it at children's. He will have an exam just to let the Dr's at that clinic see him and we will fill out paper work and get on the waiting list. It will still probably be July before he gets it done, but it is a little sooner. It is good to get him out of pain, but not good that I need to save a lot of money to get some white caps. He will have another ball practice that day. Hopefully he will participate even though he has had a week off. I hope we don't start from scratch. Maybe not!
I think Logan has hit a growth spurt. He was eating 6 ounces every 3 hours. I started giving him 8 oz. yesterday thinking that would hold him longer. He slept great last night, but today we are back to wanting to eat every 3 hours and eat 8 ounces. PIG!!! Logan is not having a very good day. He has whined all day. I have moved him from spot to spot and nothing makes him happy. He is now in his bed and quiet, but I don't know how long it will last. He just ate 2 hours ago, but that is what he wants, food!
Taylor is being fairly good. He has lapped up an entire travel cup of peanut butter Ritz crackers. He is wild today, very wild. Taylor has been complaining all day. He didn't get to put the top on his cup and got mad. I cooked a pizza for lunch and ordered his cake while we waited. I think he thought I meant I ordered a pizza because when I cut up the pizza and gave him his plate he was mad because it wasn't big pizza. He refuses to eat or drink now that he is mad. Oh well, his tough luck! He will eat it later when he gets over it. He is now in his room destroying, I hear it.
I will go and meet with John from the Red Cross tomorrow. I was supposed to go on Thursday, but he had to change it. It actually works out better that way since Taylor and I both have to go to the dentist and he has ball practice too. I will finalize the time and get posters and stuff to hang up. Taylor and I will hopefully get that done on Thursday in between appointments.
March 29, 2004 Day +362 Day #60 off treatment
Taylor is at Paw Paw's playing outside. Logan is asleep and I am cleaning, again! Nothing new to report here. I am sure there will be lots of funny stories tonight after he has been gone all day and Guh is coming over tonight with all the goodies she got him. He is anxiously waiting to shoot her with silly string. Look out Guh!!!
Please pray that Taylor continues to love life as he is now. Pray he is NED forever. Pray that Logan never endures anything like this. Pray that Carter's MIBG on Wednesday is clean and clear. Pray for Morgan and her family as they head to NYC on Wednesday for scans. Pray they have a safe trip and great results!!!
March 28, 2004 Day +361 Day #59 off treatment
Mama and I were up and dressed by 9:00. We checked out of the hotel and went to eat breakfast. After breakfast we had to kill some time before the stores opened again. We went to Wal-mart and the dollar store. Finally the stores opened and we went back to the outlets. I spent more money the 2nd time around than the first. After all the shopping we headed back to Applebee's for lunch. They had a dilemma there. The waiter told us they have a line that carries liquid sweetener directly to the tea maker. Someone accidentally hooked up the Pepsi line rather than the sweetener line and was mixing Pepsi and tea. Yuck!! Anyway, after lunch we headed towards home, but we did manage to stop a few more places along the way. We got to Guh's house last night around 7:00. I got back to my house about 7:30 and we headed to San Antonio's to eat dinner with Maw Maw and Paw Paw and Ghen Ghen and Bob. We finally got home by 9:00. Logan was sacked out for the night and We all were close behind him.
Taylor again played outside most of the day. He got a rock wall for his swing set. He helped Jim put it up and then had a blast playing on it. He is very good at it to have never even seen one before. He is ALL boy. He loves to climb and be dirty. He was jumping in huge piles of leaves. He has bruises and cuts all up and down his little legs. He looks like your typical 3 year old. Isn't it grand!!!! Ghen Ghen and Bob were here most of yesterday. Bob had to help Jim fix the trailer and Ghen Ghen got to play with Logan while Taylor was busy. He took a short nap and was ready to go again. He played soccer for a while. Looks like that it his game. He is very good and coordinated at kicking the ball from one end of the yard to the other. Molly, his back dog came over Saturday and played for a while. She was going to spend the night, but she howled and had to go back to Paw Paw's. Maybe Molly wont be coming back home. Taylor is funny telling us what she did. He will howl and then say in a whiney voice "Paw Paw come get me". He had fun with her even though she popped his big green ball. She was playing soccer too.
March 27, 2004 Day +360 Day #58 off treatment
Last night we went to Paw paw and Maw Maw's for a birthday dinner. Taylor had a blast digging in a huge dirt pile that is behind their house. A house is being built on the lot behind them and so there is tons of dirt and stuff and he loves it. He ate a real good dinner too and 2 cup cakes. He helped open every ones presents. He even stole one! Uncle Bob got a little alarm clock that resembled a lap top computer. Taylor took it over and carries it all over the place and calls it his camputer or pute pute. We didn't get home until 10:00 and I still had to pack and get ready to go to the beach. I finally got to bed about midnight.
I woke up at 6:15 and all I had to do was dress since I had already had a bath. I was planning on being at mama's at 7. Well, I decided to feed Logan, but got more than I bargained for. He had wet his bed and he was soaked from head to toe. I had to change him, feed him and clean the bed. I still got to mama's by about 7:30 or so. We got to the outlet center in Foley around 11:30. We did a little shopping then met a friend for some lunch at the famous Lambert's home of the throwed rolls. It was sooo good. We went back to the outlets for a few hours after we ate and then headed towards Old Time Pottery. We found some fun stuff in there. By 6:00 we were headed to the hotel. We sat around for a while and then walked to Applebee's and had dessert. By 8:00 we were in PJ's watching TV. I kept mama awake as I felt it was way to early to sleep then ended up falling asleep before her:)
Taylor and Ca Ca went to the dump and to Don Don's. They cleaned up the yard and loaded up all the leaves and tree limbs. Taylor had a blast. Paw Paw and Maw Maw kept the boys some during the day. Taylor was very good, but was a little ticked off at me for leaving him.
March 26, 2004 Day +359 Day #57 off treatment
TGIF! This week did go by fast, but I am so ready to get to the beach it didn't go fast enough! Today is a stay at home and clean up so that the boys can destroy it while I am gone day! Taylor is anxiously waiting for it to warm up so that he can go out on the deck and play. We moved his play house and basketball goal out there so he can go out on the deck by himself. Once I get cleaned up I am going to take Logan and his little tent out there for a while.
Taylor slept until 8:30, the garage door didn't bother him today. Logan was in my bed and fell asleep around 7:45 after his 6:30 feeding. He just looked out the sky light and talked to the flowers on the wall. He is so silly. He is so close to rolling over. He doesn't know how to get his hand under him so he stops himself when he is about to break his arm:) He will get it. He also tries to roll when he is on his back. Watch him do it the hard way first.
Tonight we are going to Maw Maw and Paw Paw's, Taylor has changed their names yet again, to have a birthday party for me, Uncle Dugan and Uncle Bob. He is ready for cake. I have the cake eatinest kid yet he is skin and bones.
Kristin just called from Children's hospital Clinic 5. The boys urine tests are in and both are within normal limits. Taylor's was VMA=7.7 and HVA=17.9. When they were checked in February here in Al they were VMA=9.7 and HVA=13.7 and the HVA was the one that was 26 in NYC in March. I assume it is all food related and that is why it is higher now than in Feb, but it is in normal limits at 17.9 so we are fine with that number. As for Logan his was VMA= 13.4 and HVA=19.5. His are much higher than Taylor's, but he has a different limit. His limits are 0-18 and 0-30, I am not sure why his limits are different if it is because he is so young or healthy and never had chemo or what, but whatever the reason his are within normal limits.
We went out to eat with Paw Paw and Maw Maw last night. Taylor didn't eat much, but he had been a pig yesterday. He had 5 can biscuits for breakfast, 6 chicken nuggets for lunch and some fries, a tortilla shell for snack and who knows how many rice krispy treats. He did not have ball practice yesterday since it is spring break. He played outside for a long time yesterday. He had so much fun. We played ball, he blew leaves, he raked, he cut grass, road his gator, got some tools out and fixed a tree trunk and broke a light:) He is so dirty. It cracks me up to see those dirty finger nails and the stinky feet, wow wee they stink!!
That is all I know to tell you. Boring I know, but isn't that the best kind of update! Please pray that we get the results to the urine test today and that it is normal for both boys. Pray that Taylor is NED forever. Pray for Morgan and Carter as they scan next week. Pray for all the kids still fighting the fight.
March 25, 2004 Day +358 Day #56 off treatment
This week was a busy one last year. On Sunday the 23rd, we had an Easter celebration at our house. We knew that Taylor would be in the SCU and would not be able to have an Easter, so as crazy as our neighbors probably thought we were, we had an egg hunt. On Monday the 24th, we went to UAB to get a special kidney function test done to be sure his kidneys could flush out the chemo at a fast enough rate to not harm him. It was a scary time due to the fact that if it was not a good outcome he would not get the full amount of chemo and it would not be as affective. Oh how I hated those days. However, it was today, March 25, that was so scary. One year ago today we were admitted to room 659 at the Lowder stem cell unit. It was the worst admission ever. Not because of the new location or new faces, but because we were about to jump into a world of unknowns again and this time they came with a much higher price. It is very hard to believe it has been a year. It seemed to drag on forever while there yet it seems like only yesterday. I can vividly remember certain thoughts, exact conversations, games we played and all the impatient and scared thoughts I had. It is kind of odd how much I remember, you would think I would block it all out. I don't remember that much of their births!
What a difference a year makes. Today we went shopping and out to eat and played in the warm spring sunshine. Taylor is in shorts and a baseball shirt, he has on no mask or passy. He is a totally different child than the one that entered the hospital that day. The only reminder of his ordeal is his port, that no one but us knows is there and that NY Yankees hat he wears and again, no one knows why he was in NYC and got that hat. To the outside world he is a normal 3 year old boy who never had a care in the world. If only that were true. It is very odd how many good things have come from this. I mean it was horrific to live and I pray or beg that it never comes back. However, if we had not gone through this would we appreciate life as we do, would we cherish each minute with our kids as we do? Would we take them places like we do or let them sleep with us? Would Taylor still be off the passy or potty trained or have rotten teeth? Would we have met all of you? Would we be in the middle of helping to get a wonderful tag passed or holding the 2nd annual Taylor Watts blood drive? No! Though I wish it had all come about without the harm of my child's life, I am so glad we have all of these things and all of you in our lives now.
Now on to the present day at hand. We had a slow start. Just like clock work about 1 minute after Jim's garage door shut Taylor's bedroom door opened. Jim took Logan to Nana's and I cleaned up some and painted my toe nails. Taylor said "your big toe is cute mama". He is so silly. He was watching Clifford last night in bed and we just heard cackles coming from his room. He laughed so hard it had us laughing hard. We went to Guh's for lunch and he rode his vroom vroom for a minute then we went shopping. However, we ended up going to get Ca Ca and sitting with him at Sonic while he ate. Taylor was playing in some rocks and fell and screamed like he was being beat. The waitress had a band aid and all was better then. We dropped Ca Ca back off at work and went to the party store. We got all our plates and what not for the party. This is going to be a boring all white affair, but that is okay. We do have a pretty table cloth and we will have balloons. I bought a sign for everyone to sign and leave a message. You all that are here remind me or it wont get done, I never remember to tell people to sign it. We had one for Logan's birth and never even hung it up. I'm bad, I know!! Taylor was pretty beat after that and I didn't need anything else and there is nothing else I can do for the party until closer to the date, so we just came home. I didn't get Logan because he wanted to play outside. I looked at him in the rear view mirror as I pulled onto our street and he was awake. I opened his door in the garage and he was sound asleep. I figured he would wake up since he was not asleep but a split second, but he is still out like a light on the couch. I hope he wakes up in time to go out for a while.
We didn't do much today, but it is always fun to have my Taylor time. We love to have Logan with us, but I think he is still so new that it is easy for us to fall into our old routines. We snuggled in my bed this morning, something that is usually interrupted by an early morning bottle. We took out time getting ready and took our time in the stores. It was fun.
Please pray that Taylor is NED forever. Pray that both boys urine levels are normal. Pray that Taylor's elevation was food and stress related. Pray that Morgan has good scans next week. Pray that Carters next MIBG is clean and that whatever showed up a few weeks ago is gone. Pray for all our friends that are battling relapse or other cancers. Pray for those who are just starting out on this journey. Be sure to thank God for getting us as far as we have come. We certainly are!!
March 24, 2004 Day +357 Day #55 off treatment
Today has been long. We were all up by 7:30. I have figured out that the garage door is waking Taylor up. There is nothing I can do about that, so I guess we will be up when Jim leaves everyday. Taylor had a bath to combat his hat hair. We got to the studio a little early, but it didn't work to our favor this time. There were only 2 people working and one of them was the Easter Bunny. She couldn't help ring people up or anything like that due to the costume and couldn't take her face off if the kid was old enough to understand about the Easter Bunny. The poor guy was running around like a mad man, photographing, ringing up, showing photos and looking for the Easter Bunny. While he was ringing up someone she would walk through the registers talking to the kids. It was finally our turn and we would have been quick if both my kids could cooperate at the same time. If Logan looked the right way and smiled then Taylor was holding his hands up, blinking or his mouth was wide open. If Taylor was doing right then Logan was looking off or fussing. It was a mess. He finally got 4 good shots and I picked the first one, figures huh!! Taylor had taken a major Augmentin poop and was stinckin it up. Good thing the bunny was covered or she couldn't have sat through all that. She was about to die, she finally got a tiny baby and was able to change and come out and ring us up. She was dripping wet with sweat. The photographer kept singing "the Easter Bunny is roasting" while we did the pictures. Logan flipped out on me in the car. I had to buckle him in and then change Taylor and he did not appreciate that. He finally quieted down and we met Ca Ca for lunch. Taylor had his flip out on the way back home. He dropped his tea and still does not understand that I can not put the car on auto pilot and get up and do for him and he was mad that Ca Ca was going back to work. They are both asleep now and I hope they both get a good nap.
Taylor let me clean his ear real good after his drops today. I got a lot of gunk out, so maybe these drops are doing the trick and we will soon put this ear infection behind us. Other than that they are both doing great. Taylor has been a lot better the last week than he has been lately. I don't know if he is just getting out of the cranky stage or what, but I am glad. Logan is still not rolling over, but he is happy to lay in the floor and look around and he likes the bouncy/walker type thing as well. He has now earned the right to sleep with no blanket. He is always so still that his blankets never even got wrinkled, but this morning I had to keep getting it off of his face. He now likes to grab it and hold it. He was pulling it up. So, no more blankets for Lo Lo.
That is all the excitement we know for now. Please pass on the word about the blood drive. We need a good turn out. We hear that Saturdays are not good days for blood drives, lets prove them wrong!!! Keep passing the word on the car tags as well.
Pray that Taylor is NED forever. Pray for those fighting relapse. Pray for those about to scan and those awaiting second scans to rule out things. Pray for those to soon be diagnosed. Pray that a cure is found soon.
March 23, 2004 Day +356 Day #54 off treatment
Whew, what a long day! We left home this morning at 9:20 and got to clinic at 10:00. We signed in as usual, but it took forever since Logan was being seen. I had to feel out all the paperwork for him. All that for a bag of urine. I got Taylor to go in the cup at home. He tends to hold it at clinic, so it is easier to get him to do it at home. It also allowed him to have his beloved morning rice krispy treat before we left home. I turned his urine in and they bagged Logan. He never made a peep. When I took his diaper off the nurse said " oh, he is a big boy" for those of you who do not know Logan, he is very well endowed in that area. We all got a good laugh. He took his sweet time going today. He finally went and it leaked out down my leg. Luckily, enough was caught to be tested and we didn't have to start again. Taylor weighed in at 29.7 pounds and 36.5 inches. Logan didn't have to do all the vitals. Taylor and I went to the lab while Guh and Logan stayed in clinic 5's waiting room. Taylor didn't care that she drew blood, he never does. It didn't take to long and we were back in clinic. It seemed to take forever to get the labs back. We usually go at 8:00 and today we went at 10:00. It was nice not to have to go that early, but it was so much more crowded. It worked best with Logan though, I barely made it out the door with enough time to get there. It was a lot of hassle getting both of them ready. You can tell I don't work and they never get our of PJ's most days! We finally got in a room around 12:00, but it was more like 1:00 before Dr. Berpo (Berkow, but Taylor can't say it) came in. All looked fine. He had great counts WBC 8.7 and PLT 229,000. He had a little nose congestion, but it is allergies and his ear is still infected. It is not enough to do another 10 day round of antibiotics, so he gave us a script for ear drops. This is the one that ended up making his ear worse last year. I hope that was just due to low counts and no immune system. We shall see! Dr. Berkow said that if scans are clear in May/June, he will schedule a date for the port to be removed. After that he will use an IV for scans and he gets blood drawn from his arm anyway unless he is being accessed, so it wont really matter. Dr. Sande, the transplant Dr., is sending down the immunization catch up schedule and Dr. Petelos, the regular ped. will give him his shots. Since he had a normal immune function test in NYC in December, he does not need another one and can begin the catch up process immediately. He can not have live viruses for 2 years, but that only rules out the MMR due to the measles shot being live. It will not affect Logan's schedule at all.
Taylor has been complaining of his teeth hurting "real bad", so we were worked into the dental clinic. It didn't take long at all, surprisingly. We saw a different Dr. this time and I liked him a lot. He was really good with Taylor. He asked why I marked No on the question that asked would this be a cooperative dental patient? I didn't think he would be, he never has before. He got an x-ray. He about threw up on him when he put the stick that held the film in his mouth. He had to reposition it a few times and he gagged every time. The tooth is not infected, so they can not tell which tooth actually hurts. All of them need work and have cavities, so it would be a guessing game if they tried to fix it. He will have to wait until they fix them all. He did put us on a list at the Sparks Center which is another location of the dental clinic, but it is for special needs children and Taylor is considered special needs due to his transplant status. He will now be on a 3-6 month list rather than the 6-8 month list. It will more than likely be June or July when he gets his caps. This dentist recommended doing the top, front 4 teeth only in white. He said the bottom didn't usually show that much. I don't know, I would rather have the bottom too, but we will have to wait and see. He said the white caps will range from 100-150 dollars a piece and we have to tell them ahead of time how many we want so that they have them in stock.
Before we went to the dental clinic we went to eat some lunch. I got Taylor a hot dog and no fries that is what he always eats there. Not today, he wanted fries only, so he ate mine and we chunked the hot dog. Meredith was in line a few people behind us and he just ran to her and let her hold him for the longest. He says he is going to her house to play ball. He will too, she better look out. All the clinic nurses heard that she got major lovin' and got jealous, he did yell "I luj ju" as he ran out. We went to visit his RO RO (Rhonda) after we were all done. Everyone had to ooh and aah over Logan. We had to wait a little longer to leave since we found out that the Auburn Baseball team was coming to the 4th floor. He got a bat and got one guy to sign it. They were not very in to the job. He was staring at them with puppy dog eyes holding the bat out and they just looked at him like they didn't know what to do. I had to ask the guy that did sing it myself. By this time Logan had had more than enough and there was no making him happy, so we left. Taylor cried for a long time that more "guys" didn't sign it and I did feel bad, but I had to get Logan out of there. He had not napped, it was to noisy and busy for him to settle down and he was hungry again. Both of them were asleep by the time we got on the interstate.
We will go back on May 6th for another long day. He will have a CT scan, hearing test, Echocardiogram, and clinic visit. Logan will have to miss that one!! Logan goes to the Dr. on April 21st, so we will discuss Taylor's shots and have his ear looked at again then by Dr. Petelos. We did go to Wal-mart last night to look for the fire truck. They didn't have it so he picked a kid sized cleaning set. That's my boy! He has swept and mopped his little heart out. He cracks me up telling me not to go in the kitchen cause the floor is wet. He even puts out his little yellow caution sign that says the floor is wet. We live in a safe house. Jim was able to find the fire truck at Toys R Us, so he got that too. He deserved it for his dental visit anyway. He is outside playing now, so he hasn't played with it yet, but his little eyes lit up when he saw it.
Please pray that both boys urine levels are normal. Pray that the next round of scans are NED and stay that way forever!! Pray for Levi, Chris, Sophia, Alexis, Trey, cam and Marca who are fighting relapse. Pray that the "over stimulated" Logan soon calms down and falls asleep:) Pray that the echo and hearing test are normal as well.
March 22, 2004 Day +355 Day #53 off treatment
As of the end of January, 143 curing childhood cancer car tags have been purchased. We did the TV spot in February, so maybe a lot were bought after that. Keep passing the word, we only have until July 31 to get the other 857!!
Good morning. We are all good other than we were up too early! I do not know why both of them want to be up by 7:00 now, but that ain't cool! Both boys have been good as gold. Taylor took his last dose of Augmentin with no trouble. I hope that we do not need more, but my opinion is he will probably get more tomorrow because it still looks infected to me.
Dr. Modak emailed with the foods that Taylor did not need to eat prior to his urine test. They included: vanilla pudding, rice krispy treats, tootsie rolls, chocolate popsicles, frosted flakes, cheese, and the big kicker, sweet tea!!! He will have no urine to give without the sweet tea! He also said not to eat these things for 48-72 hours before the test. Well, it is 23 and a half hours before and he has had about 4 rice krispy treats and he had vanilla pudding last night. He of course has had tea. I don't know what to make of it. I know the tea probable isn't going to hurt since we all know he has had tea before each test in the past. However, I have no idea what kind of foods he ate before them. He is mad as a hornet now because I put all his food up high. It is normally on the bottom shelf where he can get to it. Everything he asks for I say no. I feel so bad. I wish our appointment was earlier than 10:00 in the morning, but we will make it. Pray that I have not ruined his urine tests. I pray that if it is elevated it will be justified by the foods, but I do not want a false since of security either. UUUGH!! This just sucks and that is all I can say about it.
We have no plans for the day other than to clean up the mess Taylor has managed to make in 3 hours. He is going to make me crazy. He wants to eat every second just because he can't. This should be fun. I will update again later if anything good happens otherwise we will see you tomorrow!
Pray that his test is normal. Pray that Logan's is normal. Pray that all our friends going in for scans are fine and those fighting relapse beat it again. Pray Taylor is NED forever.
March 21, 2004 Day +354 Day #52 off treatment
Good Sunday evening to you all. We have had a nice day and hope that you all have too. Taylor and Logan were up early again despite the late night. UURGH! Jim and Taylor spent most of the day down stairs in the playroom while Logan and I stayed up stairs. I cleaned up and Logan played in the floor and in his bouncy seat. We all went to Applebee's to eat around 1:30. Taylor did not eat more than a few fries, but he did eat 2 rice krispy treats while we waited on a table. I know he should not have been eating then, but it had 2 purposes. He was quiet and when you have gone through all he has including many boughts of NO eating at all, you feed him what he wants, when he wants to he will not eat.
When we got done the boys all went back home and I took off alone. I had my tanning session then ventured off to Amanda's house then to good ole Wal-mart. I got caught at a 10 minute train and was getting very ill:) It has been a while since I got caught at the rail road tracks and I have not missed it. I found Taylor a camo short outfit. He has a sweat suite that he wears all the time. He wore it Thursday and it got hot in here and he refuses to take it off. He was sweating so bad at nap that my bed was soaking wet as was he. Yuck! Now maybe we can skip the sweat suite and wear the shorts instead.
We got our Magic Moments paper work this weekend. We just have a few copies to send in and to sign it and we will begin the major planning for his wish trip to Disney World. He is excited, but I think Jim and I are even more excited than him. We do not know when we will go, we will be turning in in 3 options and we will see which we get. Our choices ranged from April to September. They need at least 6 weeks to plan it, so there is no telling when we will get to go, but we don't really care when. The weather is pretty nice year round, so we are not going to be picky.
Taylor has been doing some painting in a paint by number book. He is being Pop. Pop came by the other day in his paint clothes as he was heading over to the church to paint. Taylor dug through his closet to find himself some paint clothes. He is so silly. He has been very goo. He is wild and running and yelling, but he is being good. He only has one more dose of Augmentin left. He has achieved the Woody fire truck. I have no idea where to even get the thing, but that is what we will be doing tomorrow night. He never had diarrhea either. He did have a few loose stools here and there, but not like I expected with that med. I am not complaining mind you, just stating.
This week will be busier than normal. Tuesday both boys will go to Clinic 5. Taylor will have his labs drawn, a urine test done and a check up with Dr. Berkow including looking at his ear. Logan will be bagged (not looking forward to that) and have urine collected to test him for any tumor markers. It is just an easy, non evasive test that will keep our minds at ease. He will be checked every 6 months. Monday we have nothing to do, but it will be long as Taylor will not be able to eat freely due to the urine test on Tuesday. Wednesday we will be going to Target to get Easter Bunny photos done. I know Logan wont care and I don't think Taylor will be. He was not afraid of Santa, but he has not seen an Easter Bunny since he was 15 months old. We never made it last year to see the bunny. We shall see how it goes. I may have to buy another bribe toy:) Friday we will have a 3 way birthday party at Gam-maws. Saturday Guh and I will be heading to Gulf Shores for the weekend. Taylor does not have a ball game this weekend due to spring break, so don't go to the ballpark!
Please pray that Taylor is NED forever. Pray his HVA levels are normal this week. Pray that Logan's urine is fine now and always. Pray he never has to endure anything like Taylor has. Pray Taylor never again endures it. Pray for Levi, Chris, Sophia, Carl and Trey who are fighting relapse. Pray for Morgan as she prepares to head to NYC for scans. Pray for Carter as he and his family wait for another MIBG and pray it is clean.
March 20, 2004 Day +353 Day #51 off treatment
Taylor and Logan both had a good Friday. Logan finally laid on his tummy and held his head up. He did it about 5 minutes then all of a sudden got this look like hey I am supposed to be mad. He just fell face first into the blanket and started to scream. Oh well! Taylor watched Dora and Blue. He impressed me playing along with Blue. They needed a key to unlock a door and it was hidden under a cup. They showed you the key then moved the 3 cups around and mixed it all up and then asked where the key was. Guess who knew? Taylor! Way to go Taylor!! I caught him several times, again today, playing with Logan. He rubs him and gives him toys. He read him a book. It is so sweet. I would love to get it on video, but if I move or he notices that I am watching he will stop.
Taylor did GREAT at his ballgame. I was going to Drew and Blake's after the game and told him if he did good he could go with me. I don't know if that is really why he did so well or not, but we may be headed to Mary's every Saturday. He practiced before the game and batted when it was is turn. He Hit the ball off the tee and then kinds ran in slow motion to first base. He didn't slide into home like the other boys, but he hopped on the plate and then didn't want to leave. He played right field rather then left hoping to get a little more action, but no such luck. He did actually pay attention the first inning. The second inning, both teams were tired and bored, it was also very hot. They did good though. It was amazing how much better they did this week than last. They really are learning. Logan enjoyed this game a little more himself. He had on shorts and a hat so he was out of the sun. We were on the home team side and didn't have the sun in our faces like last week. He didn't cry at all, but his "Auntie Cathy" did get him to sleep again.
After the game Taylor and I went to Mary's and I had my air conditioner looked at in my car and Taylor played. He had a blast. The have a big ditch in the back yard that is full of dirt and cars and he played in there for a long time. He played in the playroom and played baseball. He did not want to leave, but we had to. We were meeting Jim, Logan, Papa, Gam maw and Auntie Cathy and Uncle Steve at Red Lobster for some dinner. It was sooo good. After dinner the girls went to do some shopping. We got home around 9 and Taylor was still going strong. I am not sure how he was holding his head up since he got up at 7:20. We tucked him in at about 10:00, but the thunder scared him and he came back to the living room. At 11:00 we all got in bed, but soon Taylor was up, playing in your room. I don't know when he finally went to bed, but when I got up with Logan at 5:30, I checked on Taylor and he was in his bed and all covered up.
Please pray that the pains he has complained of today are cramps from his busy day. He even said "my leg huts, its been a long, long day". Pray that his urine comes back clear this time. Pray for Morgan who is fixing to have scans. Pray for Carter who has to have another MIBG due to a mysterious spot that showed up. Pray for Sophia, Carl, Chris, and Trey who are fighting relapsed NB. Pray for our friend Alexis who has relapsed with Medulloblastoma.
He had a bath and had Gam maw and Papa tuck him in.
Please pray for Carter. All his scans looked good, but a spot showed up on his MIBG. He is being scheduled for another one, so lets pray that it is all clear and it is not cancer. www.caringbridge.org/pa/carterfinger
March 19, 2004 Day +352 Day #50 off treatment
Happy Friday. We had a nice Thursday and I had a nice birthday. I had to be up at the crack of dawn to get Logan dropped off at Nana's and to Children's hospital by 9:00. I met with the councilor there and it was good to just lay it all out on the table and have someone tell me I am not crazy. She determined that I am not in need of regular visits with her or anti depressants. I knew that, I am only crazy during scan time. She just gave me some exercises to do to relax and a few ideas to calm myself down and ways to focus my attentions anywhere but on scans and calling Meredith. I can go back to her if I want to during scans to talk about. I feel that I wont need to, but that is easy to say only 2 weeks after good scans. We shall see when we get closer to the June scans.
After I left the hospital, I picked up Taylor and we went and bought him Easter shoes and Logan an Easter outfit. We went to the new Wal-mart, but Taylor was asleep and grumpy as ever, so we left without getting what we needed. We never made it to the grocery store or Old Time Pottery. We went by Guh's for a little bit and he all of a sudden felt well enough to ride his vroom vroom and play in the play house.
We left Guh's and headed straight for ball practice. He started out ready to go. He had his helmet on and was walking towards the tee when he did something, we are not sure what, and busted his lip with the bat. That was the end of his cooperation. I walked him all the way back to the car and got a wet wipe and cleaned him up and we acted really silly while we did it and got his mind off being mad. When we got back to practice he put his glove on and went to his spot in left field. He was doing great. Once Coach Curt saw that he was ready to play, he let him bat. He did great. He got to hit several times then the last hit he ran to first base. Yes, he actually ran! After his turn he returned to left field. By then he started to lose interest and was asking to play in the sand or me to hold his glove. I think an hour is just to long for him not to mention that not much action is happening in left field. The other kids get to swap up positions and get to be on first and in the pitchers circle where the action is, but due to his port we have requested he not do that. I think he would cooperate a little more if he had the action, but no action is better than that port getting hit. There are a few older kids that could wack it that far. I will be talking to Dr. Berkow about removing it soon, so maybe he will finish out the season without it. We will see!
Papa and Gam Maw kept the boys while Jim and I went out for my birthday. We were not gone long. We got back and Taylor wanted a bubble bath, so he got one and then he was ready for bed. He had been up since 6:45 and was very tired.
He and Logan both got up about 7:30 this morning. I was none to thrilled with that since I was up all night with an annoying, dry, non productive cough that is making me crazy. They are both being good boys today. Logan sat in the walker for a long time and looked out the window. Taylor helped pick up all his toys and helped me vacuum. He is now reading books sitting in his Easter bunny chair we found at Guh's house. He is still taking that medicine without complaint. Looks like we will be going on Monday night to by a Woody Fire truck . I talked to the ENT nurse today. She said that the blood is probably due to the tubes coming out since the right one is 1 yr old and the left is 2, it never fell out. She said that I can put vinegar in it, but it may burn him. There is a cut somewhere if there is blood. She said to keep giving him a bath and let it work its way out. There is so much blood there I can not tell if it is still really infected or not. Berkow will see it Tuesday. His wife is an ENT nurse, so he is usually very helpful in the ear department as well. That is a good combo we get from him, huh?
Tomorrow is game day at 11:30. They are off next Saturday due to spring break. Mama and I are going to the beach next weekend and I am glad we will not miss a game.
Please pray that his ears are fine and that they clear up soon with no hearing damaged. Pray that he is NED forever. Please pray the Sims family as today would have been Janie's 7th birthday. www.caringbridge.org/al/janiesims Happy Birthday Angel Janie!
March 18, 2004 Day +351 Day #49 off treatment
Happy Birthday Kim!!
Yesterday was a day of many firsts. Logan spent his first night in his own bed in his own room. He was too big for his small crib that was in our room. He could stick his arms out both sides. Taylor moved to his own bed long before 3 months, but he also slept through the night at 6 weeks and required a lot less of my time at night. Logan is now sleeping through the night regularly, so we made the switch. Logan also took his first tub bath. He just assume keep the stump as he didn't see what all the fuss was about. He hated it. I don't remember Taylor screaming, but I don't remember him particularly enjoying it either.
Taylor was pretty good yesterday. He got upset that I was cleaning, but I was on a rampage. I moved Logan's little crib out of our room, I packed up the pack and play, I packed up Logan's too little clothes. (crazy huh, 3 months old and we get to throw out clothes.) I got a bunch of stuff moved to go into the attic. I made a bigger mess in the hall and living room with all the piles of stuff to be put in the attic or sent back to whomever I borrowed it from. I have piles of yard sale stuff and pile of baby/maternity clothes to give away. It is a mess, but I feel better having it taken care of at least that much!
Taylor asked me what "those are" pointing to the nails on the mantel. I said it is a nail and he said "to hang Ho Ho's shoes on". He has been really attentive of Logan today. Logan got very fussy at his noon feeding and was just not happy not matter what. I just laid him down and went to get a bottle and when I came back Taylor was holding his hand and talking to him. I caught him several times during the day holding the swing or patting him on the tummy. He gave him his night night to hold while he swung. He was so sweet. He had to help Guh go potty to ensure that she didn't slip out. On the way out of the bathroom she turned the light off and he said "no Guh, leave it on so I can go potty". Yeah right! He did, however, potty after he took a bath. He chose a sticker of a bear using the potty just like the book said to, so he has been paying attention to the potty training book. Maybe we are soon going to get somewhere. We have not even been working on it, I gave up. He will be ready when he is ready.
Taylor went to Sante Fe with Pippy and Pam. He ate great and came home armed with a lot of peanuts. He shelled them all then threw them away. He doesn't like them. Whatever keeps him happy! While he was gone we watched American Idol. For all you 4-tower folks, don't you think George Huff looks like Wayne? Wayne can you sing like that?
No more blood came from Taylor's ear. I will be sure to check it again in the morning when he gets up. He has not complained at all, so I guess he is fine. Tomorrow the kids will go to Nana's early and I will go see the Councilor at the hospital. Taylor and I will then go to run all our errands which will include a stop at the new Wal-mart and Old Time Pottery. I think I will also look for Logan an Easter outfit. I had all intentions to let him wear what Taylor did, but it is too small. Taylor will be able to attend church then. He can go, now we are just letting all the colds and what not get out of the air. Plus he will soon start the re-immunization process.
I looked back to see what we were doing on this day last year. I like to do that from time to time. Last March 17th we arrived in B'ham from Orlando and went straight to Children's hospital to start his 24 hour urine collection, EKG, hearing and dental consult before transplant and to see about getting a new tube put in. It is so funny how it was no big deal to us to have to go directly from the airport to the hospital. That was home for so long that it didn't phase any of us. I honestly don't think I could do it now. You get in a routine and you just do it. I guess that is God's way of getting us through things we never knew we could get through. If you had told me on Oct. 10, 2002 that I would be sitting here on March 18, 2004 writing about my healthy child and his little brother, I would have called you nuts. You know what though, I am so glad to know all you nuts because you all and the Man upstairs got me to this March 18th. Thank you! What more could I want for my 26th birthday?
Please pray that Taylor's ear is fine and will heal very soon. Pray that no more infections occur and no more tubes are needed. Pray that his echo and hearing test are normal. Pray that he is NED forever and that the cancer never invades his little body again. Pray that Logan never endures anything like this. Pray for all our friends that are battling this and other cancers or diseases. Pray for Carter who just got back from NYC and had a scary airplane takeoff. www.caringbridge.org/pa/carterfinger Pray for Morgan who will soon travel to NYC for her scans. www.caringbridge.org/nc/morganbarnes
March 17, 2004 Day +350 Day #48 off treatment
Happy St. Patrick's Day!! I hope you are all wearing green or you'll get pinched.
Have you been watching how close we are to April 2nd??? Only 16 more days and we are at the big 1 year post transplant, YAHOO!!!
Taylor ended up having a very good day yesterday. Besides this new clingy stage he is in, he was good. If I get up from where I am sitting and he notices, he is immediately at my side going where ever I am going. I said I was going to take a bath and he told me he would help me take my clothes off. Ummm...How do you handle that one? He is this way rather Jim is home or not. It is very annoying to say the least. I think he really wants that Woody fire truck because he took his medicine tonight with no problem at all. He let me put drops in both ears and held his head to the side so it didn't all run back out. The right ear is now full of black gunk, so I put drops in there too in hopes that it will drain on out and not get infected. I hope that this is not a sign of what is to come with him being outdoors. Poor guy has been through enough to have to start this ear thing again. It should be a rule that cancer kids get to skip the normal childhood ailments, it is only fair:)
Logan has been a lot of fun. We got out the walker/bouncy seat yesterday. He is a little too small, but with a blanket around him he did fine and seemed to like it a lot. Taylor was a little confused. It makes a train track when taken apart and all the toys hook together to make a train. I am sure he does not remember it being a seat just the train, so he was a little upset when I put it together the "wrong" way. He had fun playing with the gadgets that Logan couldn't reach. It is funny though, there is a little lamb that squeaks and Taylor was so afraid of it as a baby. He jumped and cried every time it squeaked even if he did it. Logan loves it and it is a good thing since Taylor is no longer afraid of it and has squeaked it all day long! No, he still has not had a real bath. I have been waiting for Jim to get home so he can video tape the monumental event, but he is always asleep when he gets home and usually sleeps to at least 10:00 if not 4 or 5. So, he may get a real bath this weekend. He has waited this long he can wait another few days. I forgot to tell him happy 3 months yesterday. Oh well, he can't count so I will tell him today.
Taylor was quite pleased with himself last night when he hung his "own coat" in the closet by himself. He had to show me and I was very proud, but had to hide the grin. It was hung on a pants hanger with the 2 little clips and it was hung by the bottom so it was upside down with the arms and hood hanging down. He had pushed all the clothes to the side so it was just hanging there all by itself. Too funny! He has eaten rice krispy treats like they are going out of style. He had 2 bowls of oatmeal and that was it for real food. Oh well, he is eating, that is my motto. He is really into things being his own lately. He has to have his own chair or hat or spoon etc. He also has been telling us all day a lot. He will find something he hasn't seen in a while and he will say "I have been looking for that all day" or at bed time he will say "I am see see (sleepy) I can't sleep all day". It is so funny how his vocabulary just all of a sudden sprung to life and he has new sentences everyday and things you never think he would come up with. It was amazing and funny to work with kids and hear the things they would say, but to hear your own do it is so much better.
I got my packet today on planning the lemonade stand. It has a lot of great ideas. If you are interested in participating in our stand please let me know. Also, if you or a company you know:) would like to donate things such as lemonade, sugar, cups, napkins, serving pitchers, spoons etc. let me know or just a monetary donation would be appreciated. The stand will be Saturday, June 12th, but I am still working on a location. Any ideas?
Logan woke up this morning in a great mood. He lay there talking and squealing. I got out the video camera and he just stared at me, figures. Taylor woke up with blood all over his ear. I of course called good ole Meredith who said he probably just ruptured the membrane and it was fine. She said to call the Dr. who saw him Friday. I did and the nurse said that blood from the ear of a kid on drops was normal. Taylor was practically born with an ear infection and he has kept the Floxin company in business, but we have never seen any blood from his ears. She said to watch it for 48 hours and make sure he had no fever. I cleaned him up and he says it doesn't hurt, so I guess we will play the wait and see game on this one. He is eating and playing fine and he sleeps fine. I guess after spending all that time in a hospital bed that was elevated he needs to sleep high. He is practically sitting up when he sleeps, so I guess that is why he has been able to sleep so well. He has a huge king size pillow that is wedged into his little bed that is sitting at an angle then he leans his little pillow onto that and sleeps like that. Who knows! I know that just after those 4 nights in the hospital after having Taylor I could no longer sleep flat, I had to have a thick pillow, so I can imagine how it must be for him who slept for the better part of a year like that.
We are just hanging out today. I took the pack and play down since Logan wants nothing to do with it, so we have a little of our living room back, but we still have the walker, bounce seat, swing, pop up tent play gym and Taylor's mess in there, so we didn't get much back:)
March 16, 2004 Day +349 Day #47 off treatment
Today we are fighting the terrible threes on terrible Tuesday! Taylor is so grumpy and bossy. He is playing fine and if something doesn't go his way he goes bonkers. He has thrown things, hit things, banged his head, stomped his feet, he has slammed doors, swatted at me, pointed his crooked index finger at me, given me the "watts glare" and on and on and on. Guess what? He has been good today:< He did take his medicine without a fight. What a difference it has made. He has only been off meds for 3 months and already we are back at square one with bartering and bribing to get a dose in him. I need an NG tube:) We have until the 22nd to take it, UUGH! He has his eye on the new Woody fire truck that has been advertised on TV, so we have agreed that on the 22nd if all doses have been taken without problem we will go get us one. I am guessing I get to keep my money in this deal. As for his ear. It looks awful. It can not drain out that infection due to all that wax build up. The nurse said not to put peroxide or it will bubble out the tube. It is not in place and hasn't been for a while, but you know me, she said no and I wont do it. She did call in some Floxin drops to see if that will help it to drain out better. I am by no means a Dr, but I have looked at his ear everyday and it is not looking any better. I am glad that he goes to see Dr. Berkow on the 23rd after we finish the Augmentin and we can get a good look at how it worked. I am really eager for a hearing test. As of his last test in June he had no loss at all. He has been asking for the TV to be up much louder than normal and says huh to everything. I am not sure if he is playing or can't hear as well. I know if fluid is on the ear it will interfere with hearing, but I also know that he needs to be on top of these infections so that we do not damage his hearing. I hope he still has not lost any. It will be April before we do another test.
Logan is a little mad today. I have a little C shaped pillow that I am putting around the back of his neck to keep his head from touching the swing or floor where ever he is. He is getting flat from laying on his head and since he hates tummy time this is what he gets. He is asleep now practically sitting straight up, but doesn't seem to mind. He fell asleep last night before I got back from the tanning bed and then Taylor and I went to the grocery store and to pick up some dinner. He slept until 4 this morning, so he still hasn't had a bath.
Speaking of mine and Taylor's outing. What a journey. We went by the grocery store to get cash back. I was going to buy him some oatmeal creme pies. He thought he had one at Nana's, but it had peanut butter and jelly in it. We looked high and low and finally found them. I was going to swing thru the McDonald's drive thru to get him chicken nuggets. He started screaming "No I want that Don Don's" he was pointing to Burger King. I told him it was different, but he insisted. I went to Burger King and ordered chicken tenders. He was all excited and took the bag. He realized that they were shaped different and flipped out. I tried to tell him that they just use a different cookie cutter to cut out their nuggets, but he didn't fall for it. He ate all the fries, but never even took a bite out of the chicken. So, never again do we go to Burger King. He begged for me to stop at Don Don's but I refused. Jim and I had Captain D's. I gave Taylor my fries since that was all he was eating. Guess what? They were too big. He is going to be one of those people who thinks their jeans are too blue. Picky, picky, picky!!!
Thanks Ellaine, Peter, Charles, and MaryAynne for the birthday card. I miss you guys!!
Please pray that Taylor's ear infection clears up with these drops and no more tubes are needed. Pray that his next urine test is in the normal range and that the last one was due to his diet. Pray that Logan starts to like tummy time and rolls over soon. He is so stubborn! Pray for the Sims family as they go through March 19th. That day would have been Janie's 7th birthday. Happy birthday Janie!
March 15, 2004 Day +348 Day #46 off treatment
The other night as I was saying my prayers before bed, I thanked God for the good day we had had. I then realized that most people and even me 17 months ago, would not have considered a last minute trip to the Dr. with both kids, a good day. Morgan, or North Carolina NB friend, and Taylor often do things around the same time. She recently had an ear infection and now he does. He was vomiting and what now last week and not she is. Allison, her mom and I often end up writing similar journal entries about our fears and emotions at the time. I was just reading her latest entry (you can read it at www.caringbridge.org/nc/morganbarnes) and realized that we were once again feeling the same emotions. She wrote about watching her kids play on the playground and skipping house work to take them to the park and how she would not have done that before Morgan's illness. That is exactly how I am feeling. I would never have considered it a good thing to have him have an ear infection, I still don't consider it good, but after all he has gone through this is a walk in the park. It is a totally different world after cancer. We look at things so differently, the small things are now so important. I almost teared up at his first bat the other day just knowing how special it really was for him to be healthy enough to be there. I came home from tanning today and he met me in the garage with a big hug and said "I cried about you when you were gone" those are special words to any parent, but it really was special for me.
As for the rest of our day, both kids were up by 7:30. Yuck, Logan fell asleep at 9:00 and I was going to go get my shower while he slept, but that didn't work out since I fell asleep waiting on him to fall asleep. He only slept until 9:30. I separated laundry, but never washed it. I didn't do much else and what little I did do was counteracted by Taylor's dragging out. Since I was feeling my special feelings today, I just let it all slide. Jim called us to see if we wanted to meet him for lunch, so we did. Logan was ready to eat and Nana lives a lot closer to the Olive Garden than I do, so we swung by her house to feed him. Taylor played with her kids and did well. I guess since there are only 2 kids his age he can handle it a little better. He did freak out when I left the room or got out of his eye sight. I am leaving him and Logan both this Thursday and I am sure he will be a pain in the butt since he will be freaking out over me leaving him. It will only be for about 2 hours. I have my first appointment with the councilor at Children's Hospital. I feel like I don't need it now that the "scan week" is over, but I know that I do since I get all crazy at every scan session. We also found out today that his bone marrow biopsy was clean, but his urine levels were elevated. His HVA which I thought was less than 19, but Dr. Modak said less than 22 was at 26. He was not worried since he knew we postponed the collection a day due to the doughnuts and bananas, but I can't help but worry. We have never had to restrict his diet before and they have been fine. Well, I really can't say that. We have never know numbers until last month, so maybe they were just coming down, but not normal and it was due to food, who knows. Dr. Modak requested we test it again and we already are scheduled to check it on the 23rd. He said that was fine just to be sure that Dr. Berkow was aware of the elevated levels of this test and that the results were sent to NYC. He said to avoid vanilla, juice, cheese, bananas and the like 24 hours before his urine collection next time. I am going to email him for a complete list of foods to avoid as I want this one to be as accurate as possible. Taylor will be starving since all he eats is rice krispy treats and cheese. Anyway, the point is pray that this is a fluke from the cake he ate that day and that it is not really elevated.
Thursday is mommies birthday!! After my counseling session is over Taylor and I are going to go to buy Easter shoes and go to the park. He will have practice again that day and I hope that he cooperates this time. We are in the planning process of his 1 year post transplant celebration. Can you believe it has been a year!! I can't, but I am so glad that it has been. That does not get us out of the woods, but it is such a milestone for a transplant recipient and NB patient.
Please continue to pray for Taylor's health and NED status. Pray that this elevated urine level is food related and not tumor related. All scans were clean so we are relatively sure it is fine. Pray that he is cancer free forever. Pray for Morgan who is preparing for her scans in the next few weeks.
March 14, 2004 Day +347 Day #45 off treatment
Another long day at the Watts house. I woke up at 8:00 to Jim right outside our bedroom cutting down bushes and digging them up. He is going to put flowers out there instead of the junipers that were there. Anyway, I got up and changed Logan and tried to get him situated so that I could start ironing and getting everything ready for our family pictures we had made today. I ended up having to call Jim inside since Logan was not ready to cooperate. Taylor was up by now, but was in a good mood.
I ironed everyone a pastel colored shirt and khaki pants. I showered and got partially ready before starting on the kids. Logan first, believe it or not, he stays cleaner, even with spit up, than Taylor. I undressed him and was ready to give him his sponge bath. I grabbed his stump to pull it up and look at it and see if it looked like it was any closer to falling off. Guess what?? It didn't fall off. Ha, just kidding, it did fall off, finally!! He is 2 days shy of being 3 months old, but he finally lost it. Yahoo. We are getting a real bath tomorrow night and you better believe that we will get this long awaited bath on tape. Anyway, Logan was cute as pie in a blue polo shirt and khaki pants.
Taylor next. He wore a yellow polo shirt and khaki pants. He was very ticked off that I would not let him wear a hat until after his picture. He likes hat hair. He was also ticked that I put a bib on him to keep him dry! He dealt with it fairly well though, no fits were pitched. Jim and I were sporting a pink and green shirt. We were the picture of Easter:) We headed for the portrait studio and got there before they opened. Luckily, the guy that opened was prepared and he came right in and started.
We did family first. Logan did great, he smiled and held his head up. After the family shots we did the boys together. Logan was starting to get antsy and the fact that he was having to lay on his tummy, which he hates, was not helping matters. Taylor was doing fantastic, unlike baseball photos. He was looking at the bunny frame around the camera and helping the man blow out the light on his nose. He had a hard time keeping his tongue in his mouth, so we had to keep retaking the same pose which was hard as Logan was getting more ill by the minute. We finally got a few good shots and moved on to just Logan. He was very grumpy by now so we settled for him just looking in the right direction more so than a big smile. Lastly, we did Taylor by himself. He did good with exception of sticking his tongue out. He kept getting out of the pose the guy put him in, but he would pose himself and the guy usually let it slide. He had a goofy grin today and not his usual big smile, so they are not as good as his Christmas photos, but still good.
We finally finished up and I ordered what all we wanted and didn't spend near the money I thought I would come out of there spending, but that is a good thing. After that we had to pick up a few things since we were in Target and of course Taylor needed some more beans, his newest favorite thing to play with. Logan got some arm rattles that do not impress him in the least. After Target we swung through a drive through and fed Taylor so that he would be cooperative at the pottery party I went to.
We dropped daddy off at home and then headed to the pottery party. I bumped Logan's head sooo hard getting him out of the car. I felt horrible, but he immediately quite crying, so he is fine:) I had flowers made out of the boys hands and feet for my pottery purchase. I will get the finished product back in a few weeks and I can not wait to see it. All of the stuff that Lyn had in her house from previous parties was so cute. Taylor had a blast in her son's playroom. He went outside for a minute, but came back in crying after he realized their were older kids out there. He settled for the playroom. He watched as Logan had his feet painted and put on the plate. He did not like it, his big ole feet are ticklish. We had to wipe one plate clean and start again because he kept bending his toes and not letting her print them right. She used his big toe to make ladybugs around the edges. Taylor did the same thing, but he used his hand and thumb. He liked it. We have made a lot of gifts for grandparents and shirts and stuff for him by painting his hands, so he new the routine. After I finished I had to go out and move my car so that the person in front of me could get out. Taylor thought I was leaving him and freaked out. Thankfully, Lyn was able to calm him and then he didn't want to go. He finally left to go see Guh. We called Guh on the way home and she left to head our way. She stopped to get him so Krispy Kreme because he had asked for some last night, but he ended up eating one and me, her and Jim ate the rest. I told her no more dough nut runs.
It is now a whopping 7:20 and no one in this house can keep their eyes open. The house is a disaster though I am not sure how since it was clean Friday night and we were gone all day Saturday and Sunday. Oh well, we will conquer that this week, but not tonight. Taylor is playing with Dora the explorer candy. We are about to wind down for the night, so we will update again tomorrow.
Pray that Taylor's ear is clearing up. Pray that he will not need another set of tubes. Pray that he is NED forever. Pray that Logan never faces anything like Taylor has and Taylor never faces it again. Thank God tonight for letting that silly stump fall off!!
March 13, 2004 Day +346 Day #44 off treatment
Wow, what a long day. We started our day at 7:00. We had to get Taylor up early enough to not be so grumpy when got to the ballpark. We got ready and headed to McDonald's where he told us he wanted to eat inside not go in the circle (drive thru). We went in and ordered food and got about 2 bites into it and he decided that he wanted to eat it at the ballpark. We had liked that idea better anyway since McDonald's was covered up. We headed over to the ballpark and bought our program and Taylor's armband for unlimited access to the moonwalks and lunch. Guess what, he would not get in the moonwalk because of the other kids. He got in one for a split second and climbed right back out. Oh well! We spent big bucks getting his batting helmet painted. He has flames with his name on it. He loves it!! He soon found the old elementary school playground and started having a blast. He was filthy and we still had an hour before picture time. We went to watch the other pee-wee teams play their game for a while then headed up to take pictures. He was running around, showing out and having a good ole time until his name was called to take his picture and he fell apart. He cried and cried!! We had to skip him and come back to him at the end. He finally stood there after the photographer gave him a dollar, but there was no smile. He did not cry during the group photo, but he didn't look at the camera or smile. Oh well!! I did that my first year of dance, but the trip to K-mart I was bribed with made me smile, that didn't work for us! After pictures it was time to head to the field and warm up, but Taylor headed towards the playground again. He soon came to the field where he cried and begged to go home. He finally went out to his spot in left field after Jim told him he could play in the dirt. He did not know there was a game going on, he was all about the dirt. He did finally look up and go after one ball and did a pretty good job of throwing it to first base. After his big performance he went back to his dirt. When it was his turn to bat he came up on deck and then chickened out. The coach just went around him and as the teams were leaving the field to change innings, here comes Taylor wanting to bat. Coach Kurt let him bat, but the other team did not come back out. He hit the ball then hit the dirt next to home plate crying. I don't know if he was mad that the team wasn't there to chase the ball or what. Who knows. It did not take any coaxing to get him back in the outfield. He took off and enjoyed his time in the dirt. He did bat the next time around, but only because his batting helmet was finished and he got to wear it. He hit and ran the bases. He even did a slide into home plate. He had fun once he got out there, I just hope that we do not have to go through that every time we play a game. Luckily, all our games are at 11:30 with the exception of one 10:00 game. That is much better than the 9:00 we were originally told. After the game we went back to the playground where he had a blast. Soon we headed to San Antonio grill to eat some lunch. Taylor looked like he had done more than cry out on the field. He was FILTHY from head to toe. He had dirt from head to toe, his nose was running red dirt. We had to scrub those clothes and wash them twice. Tootsie roll is the only stain I have ever had to worry about, so this is an interesting new concept for us. We are used to just worn clothes not actual dirty clothes. After lunch he went home with Papa, Jim and Logan went home and me, Ghen-Ghen, and Gam-maw went to the Galleria. I got Taylor some pants and that was the end of my shopping spree. We headed towards home. I went to Papa's to get Taylor, but he was at Macey's and he did not want to leave. Finally after a lot of prodding on our part and that of Macey's parents, he came to the car. He was excited that I was going to drive Papa's truck home. I had just ridden with Gam-maw and did not have a car and since I had to bring Taylor home and we were going back to their house to play Bunko, I just drove the BIG truck. We had to turn around and go back to get Night Night, at least he remembered it then and not when we got home.
He has been singing the little song that they sing in their huddle, all weekend. We do not know the words, but I am going to have to ask Kurt. Taylor only knows to say pork chop, pork chop, over and over again then he screams "go A's". I know he is enjoying some aspects of ball, but not all of it. Guh came over to keep the boys so that Jim and I could go to Gam-maw and Papa's to play Bunko. We did not win anything, but had a good time. After Bunko the guys started playing poker and I had to stop Jim at 11:25 because it was weigh past Guh's bedtime and she still had to drive home.
Taylor and Logan were both asleep when we got home, in the living room. I moved them both to their beds and by midnight we were all asleep, it had been a very long day.
Please pray that Taylor's ear infection is clearing up and will not last for months like they have in the past. Pray that he works through his anxieties and enjoys the rest of his ball season. Pray that both boys hold on to their good health forever.
March 12, 2004 Day +345 Day #43 off treatment
I know that it is midnight and you are just now getting this update, but I have good reason.
Taylor and Logan were both up before 8:00, but lucky for me they both went back to sleep. We were all up by 9:00. Taylor was busy playing and I fed Logan 4 ounces then he proceeded to throw it all up, all over me, him, the chair and the floor. He was all smiles once he did though, so I just let him play and thought nothing more of it. Taylor and I played cars and read books then I cleaned up some. By 12:30 Logan was fussy again, so I made him another bottle. He ate 1 ounce of it and pushed it away. Before I even got the nipple out he puked all he had eaten back up. I called Nana to see if he had puked yesterday and he had not, we wondered if he was getting whatever I had the other night. He was fussy and rubbing his eyes, so I put him in his swing and he was fast asleep in a matter of minutes. By then Taylor was getting tired and asking to nap, not like him at all. He was picking at his ear and I decided to take a look. He had a huge blob of wax, so I got it out and I could still see more. I got his little mini flashlight and did some exploring and diagnosing. I could clearly see it was infected. That is one thing I can diagnose every time, he has had plenty of those for me to diagnose:) I called clinic and guess what, since he was not running fever we got to go to the regular pediatrician! Yes, I had mixed emotions of that. It was a huge step to be released back into the "normal" doctor, but at the same time, it is outside my comfort zone of Children's hospital's clinic 5. It was of course lunch time for Greenvale, so we went ahead and bathed Taylor and got us all dressed and ready and I called them at 2:00 when they opened. Dr. Petelos was off, so we had to see Dr. Stone, who was not there before Taylor got sick, so we did not know him. He was fabulous!!! I really liked him. I will never leave Petelos as he was one of the main ones to get the ball moving on getting us some serious testing done back in 2002, but if I ever need to see someone else, Dr. Stone gets my vote. Anyway, he looked at Logan first. He has no reason as to why he is spitting up all his food. He is using the same formula, nipples, burping etc. as always, so he said just watch it. He weighed in at 13 pounds and 1.5 ounces. Logan was sitting up with his fat tummy rolling over when the Dr. came in. I laid him down so that he could examine him and he immediately looked at his stump and then to the chart to see his age. He put more silver nitrate on it and guess what? It is my fault the thing is still there. I kept it so clean that there was no bacteria to eat away that dead tissue. He said no more alcohol and let it get a little bacteria on it and it should fall off. We shall see:) He said that if it was still there at the 4 month check up he wants to see it:) Taylor was next. He weighed in at 30 pounds on the nose, as usual. They did not do heights since it was not a well baby visit. He looked in both ears and Taylor has a raging ear infection in his left ear. He gave us Augmenten for 10 days. He made me call and run it by clinic 5 before giving it. They thought I was crazy and probably thought I was just being difficult, but he really did make me call. I guess since he was an oncology patient, it was his first regular peds visit and he was not the primary Dr, he didn't want to make that call. He laughed when he asked how I knew it was infected with no drainage. I said I used a mini flashlight to look in it and he cracked up. The right ear's tube is just about out. I assume the tube in the left ear is probably stuck in all that wax. I hope we do not have to get more. This is the first infection he has had since the one he got in January 2003 that lasted until June 2003! However, the first time he got outdoors for a good while and boom, he has an ear infection. I hope that is not a sign of the trend to come. I feel bad about it. He had a huge wax ball a month ago at clinic and Dr. Berkow said to put vinegar/water mix in it. I did it for several days and looked in it and saw white, but assumed it was the vinegar bubbling like peroxide. I never thought of infection. I have been upset that he has had an ear infection all this time, but Jim said he had them look in his ears in NYC and they said it was fine, so I guess he hasn't had one long. I guess or HOPE that this is the reason for the horrible grumpiness we have experienced lately. Again, we shall see.
Both boys fell asleep on the way home. Gram maw kept them so Jim and I went out and about for a while. Logan had another very hard poop, he has had them for the past few days even with Karo in his bottles. Gam maw had a good point, he is probably so constipated that he can not hold anymore and is throwing up. Makes since to me. He is happy, so I am not worried about it. I did ask the Dr. about that lumpy head of his. Guess what, I am not crazy. He is lumpier than normal and is it due to a big word that I don't remember, but it boils down to the left ear is closer to his face than the right one and he is essentially crooked:) It will straighten itself out as he learns to sit up and stuff.
I got home and had a message on the answering machine from the people who are organizing Taylor's wish trip. His trip to Disney World has been granted. I have to call Monday and get with them on dates and then they will start to finalize all the details. Taylor was asleep when I got the message and I never thought about it again, so he does not even know yet. He will be so excited, but he will also drive us nuts asking is it time to go yet.
Tomorrow is the first ball game. I hope he acts right. I also hope he cooperates for the pictures. I have been practicing with him today letting him hold a bat and pose. He is a briber, he said he would do it good if he could go see coach Paughn (coach Vaughn) at the big cage (batting cage). I agreed, so we will see if it works. I hate he has to have an ear infection on his big day, but he will be fine.
Please pray that this ear infection goes away with this antibiotic and we do not hang on to it for 6 months like the last one. Pray that we do not need more tubes and that the outside play does not keep him infected all summer. Pray that the NB is in NED status forever. Pray for all our friends that are battling this disease.
March 11, 2004 Day +344 Day #42 off treatment
Mommy is feeling better. I slept it off most of the day yesterday. Taylor got to go outside for a while and enjoyed it very much, too much. He is getting out of control with it. He cries if it is too dark or too cold to go outside. He cries if it is time to go in and on and on. I know he has not been able to go out in so long due to transplant and winter, but it is getting old. I don't know how I will control him this summer. Logan does not enjoy it quite as much as he does. Hopefully, as he gets older he will and we can bring his little gym mat out and he will play on that. Taylor is going to want to be outside from sun up to sun down. At least Thursdays when Logan is at Nana's we can go to the park and do outdoor things. I plan on doing a trip to the zoo and Tannehill and stuff like that once it is warmer. I know he will love it!
He is still keeping us on our toes. He was grumpy as usual the other night and was whining because his cup was on the table across the room from him and he didn't want to get up and get it. I told him he had 2 feet use them. His reply, "I only have one peet" as he sat on one to hide it. Too smart!! It is so hard not to laugh at him when he does those things. He also got up at about midnight to go to the fridge to get his milk out. He brought it to me to tell me that "mulk makes him sick and tea makes him all better". Boy, he will do anything to get out of drinking that milk!
As for today, UUGH!!! Grumpy is still on the loose. Jim took Logan to Nana's and Taylor and I took our time getting up, ready and out the door. We went to Wal-mart first then headed to McDonald's to eat. We ate in the play area and he was eating so slow that I did what no other parent has done!! I told him to go play and we will take your chicken with us. He jumped up and got about half way up the stairs and saw there were other kids in there and came running back to me and told me to put his shoes on, he didn't want to play. I felt bad that he was not going to play just because there were other kids playing, but what could I do? I can't force him in it. He left with no complaints and we went to a few other places. He got grumpy and I had forgotten the stroller, so he kept wanting to be held. He was fine though in any store that had sporting items or toys. He said he was ready to nap, but he wanted to sleep in the car. I gladly drove around town while he slept. I am out of gas, but he got the nap he needed. I came home with about an hour and a half until practice. He played in the yard and I cleaned out the car. After the car was cleaned out we headed to the swing set. He likes to tell me about helping Ca Ca get the washer to fix the steering wheel on the swing set, it came from the "Home Tepot". He cracks me up!
Taylor is very snotty again, I am still assuming allergies or sinus infection. He does not act sick. He did wake up about 3 this morning and was very upset that his eyes were all matted up. I had to clean his eyes up and then he went right back to sleep. I guess since he was scared that his eyes wouldn't open, he forgot what he really wanted. He has gone to bed in trouble or mad the past few nights and hasn't had a drink, so maybe we can kick that bad habit soon.
We left for ball practice at about 4:30. He played with a few of the other boys while we waited on the coach to get there. He did fine with waiting his turn to have the ball thrown to him and then threw it to the next person. As soon as actual practice started he came running to me and started being whiney and refused to go out on the field. I tried everything and he refused. Finally after about 20 minutes he went out and hit off the tee. He had fun doing that and agreed to go to the outfield. He enjoyed that as well, however, he was not playing baseball, he was in a sand pile. He stood and stared while the others ran bases until I agreed to run bases too. I must say I needed the exercise, but did not enjoy it:) I deserved the after practice snack today! He was all whiney until Coach Curt called them to the center of the field to talk, he made a bee line for his lap. Daddy and Logan showed up about that time and we all headed to the high school field to see if the guys were there, but there was a game going on, so we left.
Guh was here when we got home. I left to go spend me 20 minutes of heaven in the tanning bed and left them all. I returned to Taylor in the bed and in trouble. He has made himself miserable. He just lays in the floor whining because we wont go turn his light on (he has a stool and will freak out if we ever do give in and turn it on) or because his cup is not where he wants it to be. He just finds anything to whine about and drags it out until we put him to bed. He will not even go play, he is right under foot whining. I guess it is a phase, but err, he needs to grow out of it fast.
It is now 9:30 and he and Ca Ca are watching a movie in my bed and hopefully he will be asleep soon. Logan is asleep in his swing and I hope about ready to eat, so I can go to bed too. My mama is somewhere laughing at that last statement! I can't help it my kids wear me out:) As rough as it is to deal with his little outbursts, I am soooo glad he is hear and healthy so he can pitch a fit. Could someone remind me of that next time you see him pitching a big one:)
Please pray that we hear from NYC soon on the last 2 test results. Pray for all those scanning now or about to. Pray for those still on treatment and that they too are soon NED and off treatment. Pray for those who are newly diagnosed and are learning the rules of the "cancer Sucks" club. Pray for those who have lost a dear one to this disease. Pray that a cure is right around the corner!! Go buy that car tag!!!
March 10, 2004 Day +343 Day #41 off treatment
Yesterday was not a fun day for Mr. Taylor. He has a bad attitude and it is going to stop, so he spent the majority of the day in his room in trouble. He got up at 7:45 and was a sweet boy until about 12:30 when he got tired. He then decided he would refuse to do everything he was asked to do then slam doors and throw stuff if I did it for him. He refused to get his diaper changed, he pitched a fit because I opened his pudding for him. He was just being a turkey. I put him to bed at 1:00. He fell asleep really quickly, but something woke him up. I laid with him for an hour and he still was not going to go to sleep. He finally fell asleep around 4:00. He stayed in the bed the entire time. I hate that he had to stay in bed, but he has got to learn that just because he is tired or didn't get his way that he can not pitch a fit and act ugly. That is very hard. I always feel bad when I get on to him because he has been through so much and I don't want those to be the times I remember if anything were to ever happen to him, but at the same time I want him to be a well behaved child. So, we may have some hard days ahead until he learns to listen. He will be limited on the fun things if he can behave once it is over. He has already had Friday nights restricted from spending the night away from home. He is just to grumpy at those 9AM games and practices, so he will have to stay home on Friday nights until his ball season is over.
He was very good in the morning. He glued his shapes onto paper and made houses and stuff like they do on his Blue's Clues movie. He is cracking e up as usual. I was online trying to see if Clifford or Dora Live were coming to B'ham or near by. I was typing and clicking away then writing it all down. He likes to type his name on the keyboard, so I moved the keyboard so he could reach it and set it up so he could type. He ran off and said he would be right back. He came back with a paper and pen and started imitating me. He would type a minute then doodle on the paper. He is so funny and doesn't miss a thing.
The middle of the night proved to be not so fun for mommy. I have either eaten something bad or have gotten that stomach bug that Taylor had. I was in the bathroom all night long. Ca Ca had to stay home and keep the boys, I was afraid to get near them. Logan has puked up more formula than normal, I hope he just didn't burp good and he is not getting sick too. It was an odd feeling. I didn't feel bad, no tummy aches or anything, but I just had the need to throw up. I feel okay now, but I am scared to eat anything since I never felt bad to begin with. I don't know, it was odd, I have never been sick and not felt sick and I hope I never do again.
Taylor woke up feeling rather puney himself. Papa came over and got him to go to Wal-mart, but as soon as they got there he wanted to come home and not go in. He wouldn't eat anything this morning. However, by noon he had polished off a bowl of noodles. He found some dental floss and was showing me how to do it. We just laughed as he said "you gotta keep your teeth clean". Yeah right, like dental floss is going to help him at this point.
Please pray for our friend Levi, he is a NB patient here in Alabama and is about to start going to NYC. I had a nice talk with his mom today and I hope I was able to help her out. We know how scary it is to start that journey. Pray that they get it all worked out. Pray that the chemo he will start tomorrow will get the last little bit of cancer and that they can soon head to NYC for 3F8. Pray that I only ate something bad and that the kids or Jim will not get sick. Pray that we get the rest of the results soon and they are clean. Pray for all our other cancer friends as they continue to fight this monster.
March 9, 2004 Day +342 Day #40 off treatment
Seeds of discouragement will not grow in a thankful heart. -Anonymous
Taylor got home around 4:00 yesterday. He would have been home earlier, but he turned on the charm. He told Papa, in his best whiney voice, "I want to go to Gam-maw's work so she will hug me". Guess where they went! He also went to McDonald's and Papa had to play in the play equipment because Taylor wouldn't climb in it alone. He has told me all about putting is shoes in the holes, he likes that. He ate great at McDonald's and still had a decent dinner at 6:00. He had 3 pieces of ham and green beans.
He played in his room most of the evening. He is on a lego kick tonight. He did not want to go to bed, so I told him he could play if he promised to turn his light off and get in bed when he was done. It got very quiet so I went to check on him. He was in the bed, but the light was still on. I asked him if he wanted it off and he jumped out of bed and started to play again. It was not long before he came to me to tuck him in, but he still did not want the light off. I managed to turn the big light off, but had to turn the light in the fish tank on. I think he is just getting to that "I'm scared" phase. He finally let me leave the room after starting an Arthur movie and letting him have a bed full of books.
Logan slept most of the day away yesterday. He ate good, but at his 4:30 bottle he only ate 5 ounces then fell asleep. I woke him up at 9:30 to eat again and play a little so he wouldn't want to stay up all night. He was still back asleep by 10:00. I had to clean up Taylor's mess. It does not take him long to drag out a huge mess. He had a bath last night, but it was not a fun one. He was in trouble for spitting after he was repeatedly told not to. His punishment was no bubbles, color fizzers or toys in the tub. He had to bathe, brush his teeth and get out. To some that may seem like a dumb punishment, but not for Taylor. I don't know if he is just a water lover or the fact that he did not get to take a bath in more than an inch of water for over a year of his life, but he loves a bath. He will beg for one and then we have to beg to get him out. I hope he loves the pool that much. He was not able to swim last year due to the Hickman line and transplant. He can swim this year even if he still has his port. He was not to fond of the pool before he was sick, but he was also only 16 months old the last time he got in a pool. We shall see.
We are staying home today. I wonder if Taylor is glad or bored. Today is the first day he has stayed home since returning from NYC. He has asked to go outside, but it is too cool out. I think he just has horrible allergies. He was fine, no runny nose or cough until this weekend and he was outside all day everyday. He said this morning that his neck hurt, that means his throat hurts. He is not going to be getting out this week until ball practice, so if it is allergies we will know. I am sure it is, that is why he could not go outside after transplant. He got a cold and ran fever and got admitted back to the stem cell unit and after all the tests were run it was determined that is was allergies and Dr. Sande quickly said not to go out often. He hated it, but he was never sick. I assume it is okay now, but we will discuss it with Dr. Berkow. He may just need some allergy meds. He did take Zertec last spring.
Our visit to clinic next week is just routine, labs, urine, and physical. The biggie that day will be trying to collect urine from both boys. Logan will just be unhappy to be there and Taylor and I will make 900 trips to the bathroom to try and go in the cup. Guh is going to go with us. I wonder which boy I will give her? I guess Taylor since he will be begging for Guh. After that visit we are free from the Dr. until Logan goes for a 4 month check up on April 21. He is 12 weeks old today and yes, the darn stump is holding tight. I wonder if Dr. Petelos will have to do more silver nitrate at the 4 month visit? I asked Taylor this morning if he wanted to put on underwear or stay in a diaper. He chose a diaper. I told him that all his baseball friends wore underwear and told their mommies that they had to potty. He said, "not me, I wear diapers". I have decided that if he wants to wear diapers then he will wear diapers. I can not make him understand and it is just frustrating us all, so until he says he is ready we will do the diaper thing. I just hope he is ready soon. I would hate to send him to kindergarten with a diaper and Logan to preschool with a stump!
Please pray that we will hear the results of the pending tests very soon and that they too are negative for NB. Pray for all our friends fighting cancer and other illnesses. Pray for those fixing to scan, Hannah, Morgan, Cam and I am sure there are others. Pray for Trey, Sophia, and Alexis who have relapsed and pray for all the families that are facing a first without their children.
March 8, 2004 Day +341 Day #39 off treatment
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Good morning. It is Monday again and I just heard from Dr. Modak from MSKCC. He said that Taylor's final MIBG report was negative for any cancer as was his bone marrow biopsy. His urine test and bone marrow aspirates are not back yet. Hopefully he will email us very soon with those results, but if not I will email him again next Monday. I do know that they were very backed up after Christmas with the bm's and it has not been long enough for the urine. It takes a week here in Alabama and I am sure that they have a lot more to test in NYC. We are overjoyed with these results and it is even better after having such a scare last week with his illness. It must have been just a bug. He has not been sick again at all. He has eaten like a pig some days and not so much others, but I think that is just a 3 year old.
This time last year we were scheduling dental consults and surgery times for another tube in his stubborn right ear. He was on the borderline for his HCT and PLT counts and just barely escaped transfusion. We were doing all this in a mad dash to get to Orlando, FL. before he was admitted to the stem cell unit for his transplant. As for this year, I do wish that I was heading to Orlando next week, but other than that I am glad we have left the other things in the past. Instead we are gearing up for baseball games and getting the back yard ready for a summer full of out door fun. I would much rather do those things! It is amazing how different this year has been for us. This time last year I did not even believe that this normalcy would ever be part of our lives again. With God and you all behind us, it is again part of our lives and I pray that it continues to be our lives forever.
Taylor is still at Papa's house and I wouldn't be surprised if he was still asleep after all he has done this weekend. Logan is asleep now after being awake most of the morning and playing. He is still sporting his stump and still hates to be on his tummy. He can hold his head up if you are holding him, but if you lay him on his tummy he just lays face down and screams. He has made no attempt to roll over, but I guess he will in his own time frame not Taylor's which I tend to rate him on. He is eating 8 ounces a couple of times a day and the rest 6, he has been acting a little different than normal, I assume we are hitting that 3 month growth spurt. He weighed in at 13.5 pounds last Wednesday when Guh and I weighed him here at the house. I wont tell you what Guh weighed:)
As for me, I am doing nothing. We have not been home enough to mess up the house and there is not enough laundry to wash, so I am just hanging out. I wish it was warmer, but it wont be long until it is so hot that I am wishing it were cooler. I have spoken with the Red Cross and we are in the planning stages for the 2nd Annual Taylor Watts blood drive. I am so excited to make this a yearly event. Taylor would not be here now if it were not all the transfusions that he received of both blood and platelets. Even though he is now holding his own and not needing transfusions there are many people who do for various reasons, so we are more than willing to make this one of our causes to support. I will add more details on this and the McAdory High School baseball game as we get them.
I will update you all again tomorrow on how Taylor's day went. Please pray that we get the pending results soon and they are negative as well. Pray for all our friends that continue to battle this disease. Pray that the NED status that Taylor has reached is able to be held onto forever.
March 7, 2004 Day +340 Day #38 off treatment
Today was another busy day and Taylor is again worn out. He got up at 8:00 after a pretty good nights sleep. He fell asleep in the car around 7:45 and slept until about 12:30 when he wanted his TV on. Soon after he wet out of his diaper onto his clothes and bed. He got in our bed and slept the rest of the night. His fire truck bed is a pain in the neck to change sheets and I was not doing it at 1:00 in the morning.
He got up at 8:00 and had a rice krispie treat and tea. He wanted to go outside, so by 9:00 he was dressed and outside. He got a steering wheel for his tree house on the swing set. He also got 2 new swings, the old ones were so dirty and sticky with tree sap that you couldn't sit on them. He played on his swing set and gator, he played some golf and basketball. He used his tools to help Ca Ca who was putting together patio furniture. I had made biscuits and sent one outside with him. He would come to the door when he wanted more. I finally got him in long enough to bathe him and then he was right back outside. We left around 12:30 to go to Guh's house for our March birthday dinner. Taylor played on his vroom vroom, swing, play house, golf and baseball there with Drewblake and that guy. He thinks Drew and Blake is one word and that they always come together, so when he wants to see them he says Drewblake. He calls Justin that guy, I am not sure why, he knows his name, but he prefers that guy and Justin answers, so why not. He ate a lot of green beans and a little chicken and a little bit of rolls. After lunch the kids went back outside, but Taylor returned for 2 pieces of cake.
We got home around 4:30 or so, but we were only able to talk him into leaving Guh's if Papa would come over and see his new swing. He and Gam maw got here shortly after we got home. Taylor had fallen asleep and was grumpy when he woke up. He pitched a few fits and was being a total turkey. Papa is off tomorrow and Taylor wanted to go to his house, so we shipped his attitude outa here:) No, he was just very sleepy and rightfully so after such a busy weekend. That was a lot for any 3 year old, but especially one who has rarely seen the outdoors in 16 months. He has loved every minute of it and though his attitude when he is tired is hellacious, I would rather see that than his sick again. He will probably be asleep early tonight and sleep late tomorrow. He will get time to catch up on his sleep this week and then we are set for another busy weekend next weekend. Taylor's first game is Saturday at 11:30 if any of you want to come.
Taylor has been cracking us up the last few days. He told Guh "you wear me out" and "I know Guh, I crack you up". He is really big into imitating people. He has pretended to be Ghen Gehn and Bob and he says "Ding Dong" once he is in your pretend house he will say "I got you sumpin' in da car, right back". Ghen Ghen and Bob never come empty handed and he knows it:) He also pretended to be Pop today. This is the one that had me rolling. He sat down on the boards around the flower bed and had his arm propped on his knees and had a white golf tee in between his fingers like a cigarette. He said, "me Pop". He is so funny and he does not miss a thing. I guess we better start minding our P's and Q's because you never know when he is watching and what that little brain is soaking up.
As for the rest of us. Ca Ca spent the better part of the day putting together the new swing set toys and the patio furniture. I got to start back my favorite thing that I haven't done in almost 2 years. The tanning bed!! Ah, it was heaven. That is the best 20 minute nap in the world. Tomorrow starts another week, but we have no plans until Thursday. Thursday Logan will go to Nana's and Taylor and I have a few errands to run and I have to go back to the dentist for those darn fillings. We will also have ball practice. Hopefully, Taylor will be more willing to participate at 4:45 than he was at 9:00AM.
Please pray that we receive the all clear on all his tests early this week. Pray for Morgan as she gets ready to scan again. Pray for Carter as he heads back to NYC. Pray for Sophia as she starts chemo again. Pray for all the other cancer patients out there no matter where they are in the fight.
March 6, 2004 Day +339 Day #37 off treatment
What a day!! Taylor spent the night with Guh last night and she brought him to the ball park this morning and Ca CA met her there for practice. Guh came to sit with me and Logan while the microwave man put in the new microwave. I was scared of him since I had to get UGLY to get the situation taken care of. Anyway, Taylor is NOT a morning person and he did not cooperate today because practice was at 9:00 and he had been woke up. He finally woke up and played towards the end. I think the real treat for him was going to the high school field and watching the big guys play. Jim played baseball for McAdory and a few of his friends coach now as do the same coaches he had, so he was down there talking and Taylor had a blast. He got in the batting cage and hit balls that Danny pitched to him. He was also invited to throw the first pitch at a high school game in April. I will give more details on that as we get it. He came home and played with his new toys that Amanda brought him. He loved the Wiggle microphone, he has just been singing away.
Taylor and Logan went to Gam-maw and Papa's while Jim and I went and ran our errands. Taylor is slap worn out. He played with Macy for hours. They played on the swings, the slide, hide and go seek and everything in between. He went to Pippy's and played on his swing and boat and helped wash the cars. He went to see Gary and Sherrie and showed out for them. Logan even went out for a while. He liked looking around. I hope the pretty weather is here to stay. Both boys were zonked out in the backseat before we even got home. I don't expect a repeat of a few weeks ago when Taylor fell asleep early. He has truly played himself out today. He is so dirty, isn't it great!! He gets to get dirty and not worry about broviac lines and infections. He just got to be a happy, healthy, "normal" 3 year old boy. Praise God!!
It was a busy day and we did get pictures. I will get Jim on that. We also got a whole roll of film developed of Logan, so you can see how he is growing. Please pray for Taylor's continued health. Pray we get great results from the bone marrows this week. Pray that Morgan and Carter get great results. Pray that Sophia, Carl, Jay, Chris, Christi and all our other friends who are still battling are doing well and are heading towards NED.
March 5, 2004 Day +338 Day #36 off treatment
I have just learned that one of our fellow NB friends has relapsed. Please pray for sweet Sophia from Massachusetts. We met her and her mom in NYC, she and Taylor had breakfast together every morning before 3F8. We love you Sophia and family and we are praying!! Stop by and visit her at www.caringbridge.org/ma/sophiamarie
Practice was a hoot! The kids were so cute. They would hit the ball then run after it if they didn't head to third base. Taylor walks to the bases. He did finally start running towards the end. They tried to have infield practice, but everyone wanted to bat, so the coach ended up letting them all line up and take turns batting then we tried the infield thing again. Taylor played short stop, I mean he stood at short stop. He and his new friend Alex watched a few roll by. He did get one and threw it to first base. It was so funny. His first time up to bat he hit the tee so he tried again. He hits better left handed, but the coach kept turning him right handed. He missed the ball completely, but when he swung the bat around he ended up hitting it from behind and he did take off towards first. He jumps on the bases when he gets to them and he wont take hi foot off until someone tells him too. He listened very well though. I was proud of him. He did everything he was told. At the end they huddled and learned to put their hands in the circle and say "Go A's" then raise their hands up. When they first got in the huddle Taylor was running in circles trying to find a spot to get in. When they all moved we saw Taylor had indeed gotten in, in the coaches lap. Leave it to Taylor to befriend the adults, but if that is all you have ever known like he has then that is to be expected. They all got to go pick a snack. He picked gold fish and red juice, but was quick to hand me the juice. He was a little leery of the kids sharing his bat, but he got used to it. They did an activity where they stood in a line and held up the ball then they all threw it at the same time. Taylor held hid up, but didn't throw it, he was scared he wouldn't get it back. Finally, he started throwing it once he saw they all got their ball back. He looked as cute as could be wearing his ball pants and cleats. We were right, once he got the cleats on they didn't come off. If you are in the room with him you better watch your toes because they hurt!
Taylor went to Papa and Gam maw's and Logan went for a little while. Jim and I went to buy him gray pants for game days and his own batting helmet. They provide them, but the chin strap was in his mouth and we decided that he probably needed his own. I don't want him getting sick from whatever may be on the strap. I don't think any parents will be mad when we do not allow that to be shared, but if they are they need to grow up! He has a very good reason for needing his own. We also requested that he stay in the outfield. He does not need to have that port hit and there are a few kids that played last year that can really hit and throw that ball. The coach has been very understandable about it all. Papa bought Taylor a tee and bases, so he should really know what is going on by the next practice which is at 9:00 Saturday morning.
Taylor is going to be in a book. Alex, our friend in Pennsylvania who is also the famous Alex of Alex's lemonade stand, is writing a book about how the lemonade stand came about. The illustrator wants to use pictures of other cancer kids and she found a photo of Taylor and did a cartoonish sketch and they asked if it could go in their book and of course we said yes. Speaking of Lemonade stands. It will be held June 12th. If any one knows of a great location or has any pull at a place that would let us hold one, let me know. Also, anyone that would like to help me at our stand or hold their own stand that day, let me know. The more the merrier!!
Taylor might be going off with Pippy tonight. I am not sure yet. Logan slept all night again last night and has been eating 8 ounces at his feedings. He has been very playful the past few days. Still no interest in rolling over or that cord stump falling off, but oh well. Hope you all have a great weekend. We plan to have a fun one spent outside.
Taylor is no longer sticky!! After bone marrow biopsies they put primapor patches over the 4 spots. This is the same patch that was put over his broviac lines (noodles) before he had them taken out. It is very sticky and painful to take off. The nurse had to take the actual patch off on Wednesday so that they did not interfere with the MIBG scan, but she left all the sticky therefore his diaper and any dirt stuck to it and it hurt him very badly to take off his diaper and pants. He pitched an out and out fit Wednesday night when I tried to change him. I completely understand now after having Logan. I had 3 pieces of the strangest tape in the world over my incision. I had to take it off the day after he was born. I did it in the shower while it was wet, but it still hurt and I cried and cried, partly because it hurt, but more because I then knew what torture it was for Taylor to have that thing removed every other night and every night on the stem cell unit. Anyway, I will never forget the expression on my nurses face when I got out of the shower and asked if she could get me some wisk (adhesive remover) since I still had sticky all over me. They did not have any, so my skin looked like Taylor's did yesterday. Black with lint and anything else that stuck to it and if your clothes stuck it killed to pull it off. Anyway, the point is, he is no longer sticky. After an agonizing hour and about 40 wisk and alcohol pads we got all the sticky off. He was still skittish the first few diaper changes after we got off, but then he started clapping, knowing it wasn't going to hurt.
Please pray that the bone marrow results are clean and clear of any cancer cells. Pray for Morgan and Carter who are about to return to NYC for scans as well. Pray for all our friends that battle this everyday.
March 4, 2004 Day +337 Day #35 off treatment
Welcome home Taylor. Ca Ca, and Papa. Jim called us last night to say that the flight had been delayed 30 minutes and that Taylor was bouncing off the walls. Gam maw and I left home around 9:45 or so and headed to the airport, but the guys had sat on the runway fro nearly an hour, so they were a little later than expected. That was okay! Taylor was sound asleep when they landed and did not wake up until we put him in the car. He probably would have conked right back out, but I had to talk to him and I got him wide awake. He talked a blue streak and told us all kinds of things. He told us about playing poker. This was funny because they could not get him to understand that his hand was his cards. Every time they asked him what he had in his hand he would put the cards down and look at his hands and say nothing. He told us how he and Ca Ca were cool dudes because they both had NY hats on. He showed me what he bought and Gam maw and I both got a new purse. I am a purseaholic. Thanks Ca Ca. Once we got home he wanted to play just like we knew he would. I finally put his pj's on and let him play in his room while we went to bed. It was only about 10 minutes until I heard him climb in bed. He did manage to make a nice sized mess:) You know what though, who cares, he is home and healthy! We do still have to wait on the official report, but I have never known it to be any different. We also have to wait on the bone marrow's. I do not know the chances of this coming back positive with everything else negative, but we will not stress over that too much.
Jim got up this morning at about 6:30 and guess what? I realized that I had not fed Logan in the middle of the night. I jumped up to check on him and he was laying there looking around. He had gone from 8:45 until 7:00 without eating. Yahoo, he did it!!! What a day of celebration in the Watts house!! Of course he is now pitching a fit to eat after only 3 hours, but you can't win them all:) Taylor is playing with the new golf balls he bought in NYC and eating noodles. He never did get sick again yesterday and he did eat noodles, 2 bags of pretzels, and a rice krispie treat. He does have that nasty cough again. He just stopped the Triaminic Friday before they left, so I guess I will call and see if it is time to try something different.
We went to Olive Garden and got more noodles though he did not eat many. We also went to Academy Sports and got him some cleats, pants and a tee ball set. He wore his cleats out. That was a hard thing to buy. He was not as impressed as we thought he would be. He wanted to wear his tennis shoes and I had to show him that the cleats were bumpy and would make a cool design in the dirt. Now he is wearing them, but is wanting to play football rather than baseball. I am sure he will be pumped once we get there. I told him he couldn't go if he didn't take a nap. He got all mad and said he didn't want to go. I hate when he does that!!
He is going to Papa's tonight to spend the night and play with black dog. I am going to unpack and re-clean the house and Ca Ca is going to play with Logan. I will update you again tomorrow and let you know how practice went. Thank you all for praying with us and for us. God is listening.
Pray that the official MIBG report is clean and the bone marrow's are too. Pray for this "bug" to be gone and his cough to clear up too. Pray for all our cancer friends fighting with us.
March 3, 2004 Day +336 Day #34 off treatment
Check out the above website to learn more about the curing childhood cancer car tag and how to get yours!!
SCAN RESULTS ARE IN!!! Dr. Modak called me around 4:30. When New York popped up on the caller ID I was scared to death. He had said he would email us when he read the scans and to call I thought it must be bad and he couldn't email. He said he had not seen the official report, but it looked fine. Praise God, I certainly talked his ear off last night. We also had some confusion today when Cat, the 3F8 nurse told us that he was scheduled to start 3F8 in the next few weeks. uh, we thought that was over with. Dr. Modak said that he was indeed done and it must have been on the list due to the fact that they tested a vile of blood that was taken on Monday for HAMA and it was negative. She probably did not look at the chart to see what was going on. It does say in his chart that he is officially off 3F8. I feel so much better. I dropped off some supplies at the hospital and got to talk to Meredith. She gave my name to the councilor. I did well while we were inpatient and had a group meeting every Thursday night, so I do think it would help me to meet with her. I just get to worked up over the little things and I can not stop the worry and anxiety no matter how hard I try.
They are at the airport. They will be leaving in about an hour. Jim said that Taylor was saying he was sick again. Papa no longer feels bad, so we do not know what this is all about. I am going to give him a few days and see how he is feeling and then I will take him in to the clinic if it doesn't stop. I do not know what else to do. He has had a full battery of scans and all was clear, so I guess I can not worry anymore about it and let it run its course. I will update again tomorrow and let you know how messy my house is:)
UPDATE.....Taylor is finished with the scan and we are back at the RMH awaiting our cab to LGA. Please pray the scan results will come back clean. Just looking at the scans while they were in progress, the usual things lit up (bladder, shoulders and cheeks). The only thing I saw was a bright spot close to wear his port is. I pray it's just from where he received the MIBG injection yesterday and some contrast was still in the line. The technician seemed to think so, but NOT before calling the doctor to ask if that spot needed to be rescanned. It gave us a scare until she got off and said she thought it was his port also. Hopefully the rest of his body will be clear also. Taylor is sleeping off the drugs in his stroller. Our cab should be here at 5:45 EST. We should be back in sweet home alabama by 10:30 CST tonight. Taylor can't wait. He is so ready for ball practice tomorrow. Hopefully he will not have to go to Children's tomorrow for more tests. Kim will update more when she knows more, the doctors are suppose to email us as soon as he reviews the results, which should be sometime within the next 3 hours or so. Until then.... Jim Taylor and Eddo.
Logan and I went to Gam-maw's house to eat spaghetti. There were plenty of ladies there to entertain us both. We did get a call from Jim while there. Taylor had said he was hungry even after all the food he ate at Olive Garden. They ate pretty late too. Anyway, they took a cab to Sassy Sliders, a NYC favorite of ours. They thought they would have hotdogs, no more dirty dogs for Taylor! They didn't have any, but he ate a few fries and said he was full. That was understandable! They got in a cab to go back to the RMH and Taylor started to say he was sick and needed to throw up. They finally told the cab driver to let them out a block away just in case he did throw up. Don't want him puking in the cab!! He never did throw up and he was jumping on the bed when he called me. Who knows if he is sick or not. He knows he is going to get attention, but is it really that or is he sick. Like I said the other day. I often make him eat when his tummy hurt, so maybe that is why he said he was hungry, hr had a tummy ache. I did not talk to them again and they said they would call if he did get sick, so I am assuming he did not. I hope not. I had started to feel better about it all, but now I have jumped back into the fear zone.
11:20pm Tuesday-Jim just called and Taylor has vomited again. He has no fever. He has also started the "my butt hurts" again. Needless to say my fear and stress levels have sky rocketed. I have looked on the internet (a bad thing to do) and have only seen one place say that vomiting was a symptom, but it was followed by a parents comments that that was what their child had going on before diagnosis. It is all just so odd. He has not eaten enough to vomit the past few days and then he eats today and pukes, so does he have a bug and just didn't have anything to be sick or what. I know you all do not know either, but it is just all I know to do is come here and write whatever comes out. It is midnight and I am alone and Logan doesn't talk back. I am so scared!!! I emailed Meredith, of course, and asked her to make us an appointment for Thursday to have him looked at. Hopefully I will be able to have Dr. Kushner or Modak read the MIBG and let us know how it turned out. That will be a big tell tell sign in it all. PRAY like you never have before that it is clean. I honestly do not know if I can handle this again. I know in reality I will, but I can not even imagine. I try so hard not to think about the "what ifs" of this, but it is so hard especially when something like this is going on and we do not have the answers.
WEDNESDAY-Jim called me around 7:00 this morning. Guess what? Papa woke up sick. I am sorry that Papa is feeling poorly, but very glad to know that maybe this really is some sort of bug. Taylor's immune system is functioning normally they say, but with all it has been through it would make perfect since for him to not be able to recover from a bug as quickly as we might could. He is NPO after 7:00EST and he woke up at 5:00 wanting night night that had been puked on last night. They went ahead and got up and went to the 3 Star for breakfast. He ate a few bites of a waffle. Jim stopped at a Dejuan Reed drug store to get some Lysol and febreeze since Taylor had christened most of the room and his clothes. While there he stumbled across the beloved Betty Crocker noodles that we can not find here. He bought 9 boxes:) Taylor ate half a box before his NPO time hit. He did however drink all his tea last night. He will probably be real crabby after he wakes up and can have it and there is none not to mention the wait in the airport without it. Hopefully he will sleep on the plane tonight since it will be so late and he will have been sedated anyway. I have not talked to them again and it is about 9:45 in NYC and he has not thrown up yet which it took a while yesterday after all he had eaten. I do feel a little better about it, but still can not wait to hear the results of the scan this afternoon. Meredith did call and we are going to wait and see the results and see how he is acting/feeling tomorrow and go from there. She said there is a nasty GI bug going around and she doesn't want to expose him to anything there unnecessarily. Again, check back often as I will continue to update as I hear from them and most certainly if I am able to get the results of the MIBG. PRAY!!!
As for the 11 week and 1 day old Logan Riley and his ever present umbilical cord stump, he is doing just fine. As far as his sleeping this week it has been great. Of course Sunday morning at 3Am when he woke up and I was beating Jim's side of the bed and there was no one there, I was a little ill that I had to get up. Jim gets that 3:00 feeding because I am not good in the middle of the night. He is groggy too, but better him than me:) He has cooed and gooed at me all week. He is starting to nap in much shorter intervals which made getting all I wanted to get done impossible. I did not dust and mop and those simple things, but did get closets cleaned out and too little clothes packed up and either put to the yard sale pile or the "Logan will wear it one day" pile. I got the big things that I can not do with Taylor around, done. I am so glad that it is going to be 78 tomorrow and Taylor and I can get outside. After we buy his cleats I am heading to the park!!
I will update again when I hear from them again. Please pray that this is all just some sort of bug turned attention getter and not cancer returning. I hate to think that way, but it is so very hard when we are in the unknown. Pray that the scans are on time and CLEAR of any cancer!!! Pray that Monday's bone marrow biopsy and aspirate was also clear of cancer cells. Pray that the upcoming urine is also in the normal range and that no food has falsely elevated it. Pray they get out on time and are home safely tomorrow night.
I just found out that one of our friends from Children's has relapsed. Please pray for Alexis and her family as they again start the battle to beat her cancer, Medulloblastoma. www.caringbridge.org/al/alexislindsey
March 2, 2004 Day +335 Day #33 off treatment
Check out the above website to learn more about the curing childhood cancer car tag and how to get yours!!
I talked with Jim a little while ago. They will repeat the urine test tomorrow due to the bananas. He had his injection and then the guys walked to the Olive Garden to eat. That is Taylor's favorite!! Thank goodness he ate and he ate a lot!! He had all of the noodles from Jim's Chicken Con Broccoli and a whole piece of Chocolate lasagna cake. I bet that has vanilla too!! Oh well! They got to talking to their waiter who was from Georgia and went to school in Florida. Yeah, a fellow southerner and sweet tea drinker! He was generous enough to give the entire ticket on the house!! Wow, thank you to Jason from the NYC Olive Garden!!!
They are now on their way back to the RMH. They are walking a lot in the pretty weather they are having. That saves money on cabs and sanity from their crazy driving! I am sure Taylor loves being outside! The phone was about to go dead, so that is all I got to talk about. I will talk to them again tonight I am sure. I will add anything new to tomorrow's update. He did tell me that there are 9 MIBG scans tomorrow and they are about number 8. That does not sound good to me. Please pray they get in on time and get to the airport on time.
One month to go! Taylor had his transplant on April 2nd.
Last night Guh came over and played with Logan. I went to turn in Taylor's raffle ticket money at the ballpark. He will have his picture made at 10:30 on March 13th and his first game at 11:30 that same day. Anyone that wants to come it will be at McAdory High school field 5. I ordered his jersey tonight. He will be #20 and Jim and I both got one too. Ours will say Taylor's mom and Taylor's dad with number 20. We will have practice this Thursday. He is so ready. We are going to buy cleats that day. I have a sneaking suspicion that we will not get them off of him once they are on and he learns they are for baseball.
Logan and I are having a nice quiet week. I clean while he sleeps and we play if he is awake. He has been a very good boy. I have gotten a lot done, but still have more. I have to admit I have lounged around a bit. It is nice to be able to do that. I love to play with Taylor and have him doctor me or play cars or whatever his fascination is that day, but sometimes it is nice to have alone time. I miss him though. I try to talk to him, but he hangs up on me. Turkey!! He is having a blast with the guys. He told me Saturday when we were talking about who was going. "All us guys, one, two, three". He did this while pointing to each one of them then did big circles with his arms for all us guys. He is so funny. Each stage is so cute and you think the cuteness will ware off as they get older, but he is still so cute and funny. He cracks us up!! I can't wait to see the pictures from this trip. He is always a little ham.
I got several calls last night from the guys. Jim and Eddie were playing poker and letting Taylor play the dummy hand. Guess who was winning? You guessed it, Taylor. He soon went off to play alone and got into a stamp pad and colored himself. Luckily most of it came off since he can't bathe until he is de-accessed.
Today is just the MIBG injection. No big deal. He will have to go at 2:00 this afternoon to get the injection, it will only take a few minutes. He finally ate 2 doughnuts yesterday. Not the best food, but it is food. That is all we are after. Hopefully after a good nights sleep he will feel much better. They did some more shopping and walking around. They remembered the stroller this time. They walked down 5th avenue and pointed out some things to Papa. Jim didn't say, but I bet Taylor managed to get in the Disney store and FAO Swartz.
Jim was reading the tt cup yesterday and guess what? It said to eat nothing with vanilla including bananas for 24 hours before a urine test. We knew vanilla would elevate the levels, but did not know that a banana had vanilla. I do not know if the half a banana is enough to elevate it or if he had the 2 doughnuts that probably had vanilla flavoring in it before or after he used the cup. However, I do know that if these levels are elevated I will freak out and be torn between is it vanilla or cancer causing this. It is always something!!!
I did get a call this morning. Taylor has had more doughnuts, but no other food. He did not collect very much urine anyway, so we will have to have another test. He gets one here on March 23rd anyway, so it doesn't really matter. They were going to head to the park before they go to the MIBG injection. I will update again later after I hear from them. Today is an easy day, so there will not be much to report.
Please continue to pray for Taylor and that his scans are 100% clean of any cancer. Pray that they have a safe trip home tomorrow night.
March 1, 2004 Day +334 Day #32 off treatment
10:20AM- There will be several updates today as I hear from the guys so be sure to check back often. Taylor has been weighed and had a CBC drawn and has seen Dr. Kushner. Now that they have seen the Dr. things will start to move along. They do not order a port access until the Dr. has cleared him. He did clear him for access and sedation, but he is a little concerned with the vomiting episodes. Jim said he didn't seem overly concerned, but enough to make us a little antsy. He ordered a urine test for after the BM'S. That helps me to some extent, but not really. He just had a good level done on Feb. 17th, but that is not always a good test. Some children never have elevated HVA/VMA levels. So far Taylor has had them, but I do not know if that means they will always elevate when tumor is present. It is all just so hard. We want to know everything, but that is often a bad thing too. If we know a lot but don't understand it all we can get in a tizzy for no reason. I hope that it is nothing, but it is so hard to tell and even harder to wait to know. He never vomited again last night. Again, is that good or bad. I want to say it is a bug, but is a bug that sporadic? It may be over, but he also has not eaten as he is NPO for the sedation. He is begging to eat. I assume it is good that he wants to eat, but it could just be that he wants it because he knows he can not have it.
Surprisingly I slept great last night. I figured I would be up all night playing it all out in my head over and over again, but I didn't. I feel much better today than last night, but I am still very nervous. Well, like I said I will update as I hear from the guys. Please pray that Dr. K is just being cautious and not really concerned about it. Pray that all of this weeks tests are clear of any cancer. Please pray that my anxiety levels don't sky rocket. Sometimes I think that NYC just like s to play with my mind. It seems that every time we go things start to happen. Who knows!! Keep those prayers coming and check back often throughout the day.
11:00AM-Meredith called this morning. You all know that I had to talk to her about my fears. She is the greatest!! Thank you Meredith for keeping me sane and for letting me bug you almost daily. Anyway, though she agreed that the urine test was not the best test it was a good test and it was in the normal range just a few weeks ago. His CT showed no tumor growth or other involvement. She was reasonably confident that he was fine. There is a GI bug going around, but the intermittent vomiting was a little odd for a bug. We will have to just wait for the scans and the urine test to come back and see where we stand. I do feel somewhat better after having had someone who actually knows what is going on talk to me. We scheduled Logan an appointment to have his urine levels checked. We also noted what he will need in April. He will get another ECHO done to make sure that none of the chemo damaged his heart and he will get another hearing test to see if the chemo or Accutane has damaged his hearing. As of his last hearing test about this time last year, he was still hearing fine. I hope that that is still the case. He also had normal heart function. Some of the drugs take up to a year to finish doing the damage. Add that to your prayer list as well. That no more damage has been done or will be done to his little body.
12:45PM-Jim just called and they are done for today. They were on there way back to the RMH. Taylor fell asleep in the stroller and he and Jim went back to the room while Papa stopped at Don Don's. He did great for the bone marrow's. He woke up after about 10 minutes in recovery. He popped right up asking for tea and he ate 1/2 a banana. Dr. Kushner said that a street vendor hotdog was not a good choice. The locals call them dirty dogs, so maybe that was all that was behind the vomiting and it was just a coincidence that he got sick Friday night. They were able to bring the specimen cup with them rather than wait to have him pee in the cup. They will bring the sample to clinic tomorrow when they go for the MIBG injection. It is in the 60's, so they are going to go to Outback and eat. Hopefully he will eat something. He is begging to go to St. Catherine's park, so maybe the weather will stay nice and he will not be in pain from the bm's and they can go play.
I talked to Taylor for a split second. He told me he was trying to tt in the cup. He seemed to be in a much better mood than last night. He was more interested in hanging up the cell phone than talking, so he hung up on me. Papa and Ca Ca are TIRED. They did not bring the stroller on yesterday's outing and they ended up carrying Taylor most of the way. It is a long walk to the subway, to Battery Park, to ground zero, St. Paul's, and back to the subway if you are carrying a 30 pound kid. They will be sure to take the stroller next time I am sure.
This will probably be the last update for today unless something big happens. Please pray that the bm's are clear of any cancer cells. Pray that he does not vomit anymore and that it was just due to his "dirty dog". Pray that the other scans are clean too. Pray that the MIBG scan is on time as they are tight on time to get to the airport afterwards. We do not want them missing that flight as it is the last one for the night. Jim has to be at work Thursday morning. Thanks to all the prayer warriors. Your prayers are being heard and felt. Keep them coming.
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February 29, 2004 Day +333 Day #31 off treatment
Happy Leap year! I don't know that it is a day to celebrate or not, but happy leap year anyway. Happy birthday to any of you leap year babies! This is my first leap year update and hopefully the last. I hope that in 4 years this is such a distant memory and we are so "normal" that we do not update, at least not often. Can you believe it, he has been off treatment for a month. Wow! We are only a little over a month away from being 1 year post transplant. That is a huge step. It does not significantly change his prognosis, but the further out you get the better.
Jim called this morning. Papa has officially began the initiation process! The shower in the RMH is kind of odd. You pull down on the water spout to get the shower to turn on. All of us that have gone have had our turn with 10 minutes of battling the thing. He finally had to come out and get help. Don't feel bad Papa, we all did it. Taylor did not want to go to bed last night. It was 1:00 before he went to bed. I think he gets scared. He has never been scared at Papa's, Guh's or NYC, but I guess he is getting older now and realizing that things are changing and are not the norm and he feels the need to stay up and be sure things are okay. Once he finally went to sleep he was out like a light. Jim called at about 8:30, 9:30 NYC time and he was still asleep. They put just the mattress from the cot in the floor for him to sleep on. He sleeps like a maniac and would have fallen off for sure. They plan to go to the grocery store today and if the weather is nice enough take the Subway to Battery Park and show Papa the Statue of Liberty and walk up to Ground Zero. We are interested to see if a noticeable amount of work has taken place. That hole is so big, I bet you can't tell what has been done. They will then head towards Times Square and eat and go to Toys R Us.
Taylor had fun on the plane. He decided he needed more pretzels about half way through the flight. Jim told him if he wanted more he had to go ask the stewardess himself. They had seats on the 4th row and she was sitting on the 1st row reading a book. Taylor walked up to her seat and leaned over and smiled then ran back. He tried to get Papa to go with him, but it was his little job to do. He took the pretzel bag up there and showed her and smiled, but I don't think she knew what he wanted. Finally he roped Papa into going up there with him and he got 2 bags of pretzels and he ate them. He had some noodles once they got to the RMH. He had not eaten much at all yesterday. Hopefully that was just from all he ate at Guh's and he will eat good today and the rest of the trip. They are on 9th floor and are having the same troubles we did last time on that floor. The Fridge is numbered by room number and each room gets one shelf. The 9th floor fridge is all messed up and there was stuff on their shelf. Jim just moved it all and hopefully it will not be an issue. The cabinet does not lock and last time we had that problem we had our food stolen. Again, hopefully that will not be a problem. It took them so long to fix it last time that they don't even have time to complain and get it fixed this trip. At least on this short stay there will not be as much food.
I talked to Jim and Taylor several times today. He did not want to eat when they went to Planet Hollywood. He decided he wanted a hotdog from a street vendor. He ate 1 1/2 hotdogs. He seemed to feel fine all day and played and watched his new Dora the Explorer video. Around 8:00 or so Jim called and Taylor had thrown up. He gave him a bath and he seemed to feel better though he said his "tum tum" hurt. Around 10:00 Jim called again to say he had thrown up more. Please pray that this is a virus of some sort and in no way cancer related. I am on pins and needles as you can imagine. I do not have that Accutane to blame things on!! I told you I would be crazy. I told Jim to be sure that clinic was aware of every episode. I am so ready to see some blood counts. I will be a nervous wreck awaiting results on the bone marrows and MIBG. Dr. Modak might as well just expect an email on Wednesday requesting him to go ahead and read the scans and give us the results. I keep thinking that all is okay since his CT and urine were okay, but those are not the best tests out there. He has been a ball of energy and has eaten like a horse until he threw up at Guh's. I am coming up with so many scenarios both good and bad. I hate this, it is so unfair that we are forced to live like this after all we have already been through. UUGH!!!!
As for the earlier part of the day it was good. I went shopping with my mom and Logan went to Nana's. He "helped" her make bread. He was a good boy for me last night. Thank goodness!! He has been fine today. His eye looks a lot better, but I am going to keep him on the drops a few days longer. I have cleaned a good bit, but still have a ton to do. I don't know if it will get done or not. Tomorrow I will either need to be busy to keep my mind off Taylor that I clean like mad or I will sit in a state of self pity all day and do nothing. Who knows.
If you have a copy of Wednesday's B'ham News, Over The Mountain section, there is a story about Janie Sims and her family and the car tags. It again stressed the importance of this tag and what it can and will do (if passed) for cancer research.
Please pray that tomorrow's bone marrows go smoothly and he is not in to much pain from them. He usually isn't but you never know. Also pray that when we get the results back in a week or so that they are all clear with no evidence of any cancer cells. Pray that they have a safe trip and all goes well and they return safely home on Wednesday. Please pray for all our friends that battle cancer everyday. Please go buy your car tag and help us get closer to the cure!!
Pray, Pray, Pray that this is a bug and not a relapse or anything like that. It probably is nothing, but the timing of it all makes me crazy. Pray that he is still NED and can remain so forever. Pray that we are able to patiently await the results and that NYC will give us everything at the earliest possible time. Pray that labs and what not can help them know a cause as well. Please keep Taylor and our family in your prayers as we continue this battle.
February 28, 2004 Day +332 Day #30 off treatment
Taylor, Jim and Papa landed at LaGuardia at about 7:10 tonight. They are in room 905. I am not even going to put the address up since it will take at least 4 days for any mail to arrive at the RMH. If you wish to send Taylor cards, you may send them to the address on the front page of this site. He does love to get mail!! The 9th floor is the floor with the green house and that is a good one for him. He loves to go play cars in the greenhouse and watch people go by on the 10th floor. That is the floor we were on in September and we could just open the door and let him go in and out and he was happy as a lark. I talked to him for a split second and he just said "me watch TV" and hung up on me. We normally pack a blow up bed and sheets and towels, but Jim didn't want to carry the extra bag just for a few days. I called and had a cot reserved or tried to, I was told there was no guarantee. There was a cot already in the room waiting for them along with a note to be in clinic at 10:30 Monday. Wow, we normally have to be there by 8 and just sit and wait. They do not have to be up early on any day. They really are getting a vacation. I should have gone:) Taylor only slept about 30 minutes of the flight, but he was a good boy. I do not know how he kept his eyes open, I guess excitement. The battery was not charged enough to watch a movie, so he had to entertain himself. He loves the pamphlet about how to use your seatbelt and oxygen mask. One time we went the stewardess even gave him a book and he preferred the pamphlet over the children's book. Silly guy!!
As for Logan, he woke up about 8:45 and ate and played. He is still playing in the play gym and talking to himself. I am cleaning. I let it all go this week so that I could spend time with Taylor and so I would have something to do while they were gone. Bad idea. I have so much to do, it is a disaster. Oh well.
Last night Taylor stayed with Guh and again did not want to sleep. He finally fell asleep at 1:00. At 2:00 he was puking. He never even woke up through her cleaning him, changing him and moving him!! We assume he had to much to eat and drink. He ate A LOT at her house and got a tummy ache. He has a bad habit of not eating and getting a tummy ache and I will tell him to go eat. I guess he thought he needed to eat since his tummy hurt because he begged for noodles. He ate them plus about 6 glasses of tea. I had not let him have any tea yesterday! So, we think that that was all there was to that little episode. He has been fine today. He did not eat well, but he is probably still full:)
He rode his vroom vroom at Guh's and played on his swing. Once home he played baseball with Ca Ca and Papa. We left around 2:00 and ate before we dropped the guys off at the airport. Taylor was so funny. He has a photo ID card from when he was little that we got from a kidnapping safety program. Anyway, he proudly handed that and his boarding pass to the security people and then walked right through the metal detectors. He is an old pro at the airport routine.
Papa and Gam maw bought him a portable DVD player and he thinks he is king of the world holding his own little TV and watching cartoons. That should keep him busy. I bet he was asleep before they even taxied to the runway, so they probably didn't have to use it in route.
Guh kept Logan while we went to the airport. He was good and has been asleep since 3:00. He is still asleep. I hope he doesn't think he is going to stay up tonight. He better think again! Guh and I had dinner and then she headed home.
The guys plan to do some fun things since it is going to be in the 50's in NYC. I will keep you all updated as I hear from them. Please pray that all scans and tests are perfectly normal and show no signs of cancer. Pray that he never again has cancer in his body. Pray for all our friends that battle this and other illnesses. Pray for those who will soon learn of their disease and pray that they can overcome. Pray for those who have lost a loved one to this and other diseases. Pray that we can get this tag passed and get closer to a cure for this disease.
February 27, 2004 Day +331 Day #29 off treatment
Taylor had a good Thursday. He had fun gluing frogs onto construction paper. He has wanted to glue ever since receiving some Valentine's Day cards with foam hearts glued to them. He picked foam frogs at Wal-mart and has been a busy bee. I bought the cheap pack of just a few frogs thinking this was not something he would really do. Well, I was wrong they are all gone and he is gluing anything he can find to a piece of construction paper. As for the Valentine's, thank you to our friends in Arkansas that sent them. He looks at them all the time and he hangs one on the fridge. He will swap it out every other day or so. He can only hang one at a time because he has enough magnets on it to hold up a piece of lead:) He has fun doing this, so we do not help.
He took a great nap and was ready for practice. Too bad nothing happened. The coach postponed practice, but failed to tell most of the team. There were about 5 kids standing out in the cold. Finally someone called him and we all went home. It is now on Sunday afternoon and Taylor will miss it. I hate that. He had a blast today just throwing the ball around with the other boys. They were so funny!! They would yell throw it and then not be looking or throw it to no one in particular. They had the stance down and would try their best to catch it and then watch it roll right by. It was a lot of fun and that was just standing around by the concession stand. Taylor did go and watch the high school team practice. He also liked the bleachers and rolling the ball under them. He was in no way shy. He did not want to share his ball, so thank goodness they all had one. I know he will love it once it warms up and he gets to get out on that field. It is going to be so cute.
Well, the coach called this morning and we should have been down by the football field rather than on the baseball field, so we will try again next Thursday. There is no practice this weekend, so Taylor will not miss anything. I do not think we have a team mom and I would love to do it, but just don't have time to do it. Well, I have plenty of time just no free hands:) Maybe next year. We did get to pick the number for his jersey today. We picked 20 like Ca Ca had. If that is taken he will get 8.
He asked me if we could go out to eat after practice and I told him to talk to Guh since she was staying with Logan. He said in a serious tone "when Guh gets here, me say, (now he begins to whine) I can go out to eat"? He has got the art of begging down pat. Papa was at the ball park and he wanted to go to his house, so he didn't even go out to eat after all the practice for asking Guh. Can we say spoiled!!!
As for Logan. He was fine all day as far as his eating and what not. He let me put the ointment in his eye several times and it is not getting worse, but it really is not better either. I called the nurse and she said to give it about 3 days to work and make sure it does not get worse or turn red or he does not run fever. If any of that happens then we have to bring him in. Hopefully it will go away. He really does pretty good with letting me put that nasty, thick stuff in his eye. Better than I would!!! He is being a butt today. He has moved on from pill!! He is just not happy anywhere not even being held. He is now in his room. He was quiet for a bit and now he is screaming. I figure if he is going to scream no matter what I do he might as well do it in there.
Taylor, who got up at 10:00, is playing with the Upwards letter tiles and board. He loves to do that. We have no plans for the day or night. I think Guh is coming to get Taylor and I guess I will finish the packing to get the boys ready for their trip. They will fly out at 5 something tomorrow night and come back at 10:30 Wednesday.
Tonight he is staying with Guh and I will go get him so that we can spend the day together before he, Ca Ca and Papa head to the Big Apple. He is so ready. I asked him before ball practice if he knew where we were going and he said NY Yuke. Thank goodness he enjoys these trips. I just wish I did too. Maybe he can play outside before he leaves. It is not supposed to snow in NYC. It is going to be in the 50's, not to terrible.
February 26, 2004 Day +330 Day #28 off treatment
I guess I got more of the eye ointment in that I thought. Logan's eye looks much better today, so we are going to keep doing the drops and watch it rather than drag the kids out in this cold and rain. He is in a great mood just cooing and gooing at himself in the mirror. I forgot to tell you all the best news. While we were at Nana's yesterday Taylor set on the potty and POOPED!!! Yahoo!! I am not sure he meant to, but he did and he got $1 and a lot of praise, so maybe he will continue.
Hello to you all!! It is really Wednesday night, but I am planning on taking Logan to the Dr. tomorrow, so I may not get to update until late. I thought I would go ahead and fill you all in on our day today.
We left the house around 12:30. Our first stop was the post office to mail Taylor's application for a wish trip. He again thought that meant we were going right then. He has also been asking to go to the beach. I have no idea where that came from. He asks every time we get in the car. "Go to beach now"? I wish we were going, but we are not, not anytime soon, anyway. We then went to eat lunch with Ca Ca. Taylor continued his eating spree. He ate half a grilled cheese and 2 cheese biscuits. That was pretty good for someone who had already had a bagel and a piece of cake. Next stop was the dentist. He was a perfect angel. He sat in the office with the receptionist while I got my x-rays and colored. After my x-rays he came back into the exam room and sat in the floor and colored while I got my teeth cleaned. When I was done he even let the hygienist look at his teeth. They were all curious to see the affects of chemo and radiation. He got to pick a toy or two or three out of the treasure box for letting her see. Looks like he will get to show off his good behavior again on March 11th when I go for a stinkin' filling.
After all that oral hygiene fun we headed to good ole wally world. We got our needed items for NYC and a few un-needed items too. Isn't that what wal-mart is all about? Then it was time to go get Logan. On the way to Nana's Taylor started to ask for Guh. I knew what he was saying, but he has a horrible habit of mumbling and whining in the backseat, so I kept asking him to speak up. He soon got aggravated and yelled. "I want my damn Guh"! I was fighting back the laughter as I told him we do not talk like that. I then called Guh to see if she was coming over because I think he meant business. She met us at Nana's to play for a while. He had a blast playing with Nana's kids. One of them lives about a mile from us, so maybe they can hook up on the weekends. Taylor fell asleep on the way home. Yikes!!! I hope we do not have a repeat of last Wednesday night. He is very whiney tonight, so I think it is safe to say he is sleepy.
I had to go back to Wal-mart to get a prescription filled. Taylor has some sort of eye infection on top of blocked tear ducts. I never got his drops filled from 2 weeks ago because the tear ducts were not running near as bad. Well, today he has been so gooped up he can not open his eye. I am calling the Dr. tomorrow to have him seen and get some drops. I know I said I just had that filled, but they gave me an ointment and I could not get it in his little eyes. It was just to messy and a hassle. I am going to ask for drops instead. I hope he is not sick or that it is anything serious. He is eating like a pig and sleeping well. Sleeping too well, all day other than to eat. He did not sleep at all yesterday, so maybe he is just catching up. Anyway, we just want to be sure that he does not have some sort of eye infection that does not need to go unattended. I also got an email from Meredith today. We will be testing Logan's urine in clinic every 6 months starting March 23rd. That should be great fun. It was a pain to bag Taylor now we get to bag a 3 month old and try to get Taylor to go in a cup. Sounds like a fun day. This will be Logan's first trip to clinic. Should be loads of fun!!
We have ball practice at 4:45 Thursday. I will update again as soon as I am able. I really have no idea what tomorrow will bring. Please keep Taylor and his upcoming trip to NYC and scans high on your prayer list. Pray all tests are NED. Pray that Logan has some simple cold or what not that is easily treated. Pray for all our friends.
February 25, 2004 Day +329 Day #27 off treatment
Taylor left around 2:00 yesterday to go with Papa. He had a rough time trying to understand why Papa wasn't there right after he called. He cried and moped and whined and told me he was sick over and over. When I asked what was wrong he told me Papa left him, or he was a slow poke. He has no concept of time and he thinks Papa should have been here pronto just like the race car shirt should have been.
I finished packing their clothes for NYC and found a bunch of toys:) The other night when I got out the NYC bags and started packing, Taylor got out his back pack that he carries toys in and later uses as a diaper bag. He was adding to it and taking away and left a huge pile of toys in my bed room floor. I told him to pick it up. I was doing laundry in another room and asked him if he picked it up. He assured me he did, but I didn't believe him since it had only been a minute since I told him to do it. I went to look and sure enough he had. He had also closed the suite case which I did not even remember being open. I praised him for minding on the first time and we high fived and what not. Well, tonight as I opened the bag to continue packing I found the pile! He had just stuffed it in the bag and closed it. He is a sneaky one!!
Logan continued to be a pill yesterday and finally took a nap at 4:00. I woke him up at 8:15 and bathed and fed him. I tried to play with him, but he wanted no part of that. He wanted to be left alone. Jim took him to Nana's today. We normally do this on Thursday because one of her parents is off that day and doesn't bring her kids, but this week it was Wednesday. It worked out good since I had to go to the dentist. We had him in the AmSouth center, but you only get so many days per year and I wanted to save those for important things such as me in NYC rather than a dentist visit. Guh will be coming over after work on Thursday to keep him so that I can take Taylor to practice. I am a bit concerned that he has to go on a wet and 49 degree day, but it shouldn't take long. Hopefully it will warm up soon and Logan can tag along sometimes.
Jim brought Logan to Nana's this morning. He liked riding in the Mustang. The way the seats slant he could see out the back window. To bad it is so much trouble to get the car seats in that car or we could use it more often since both kids love it. Taylor came home around 11:30. He is ready to go eat lunch with Ca Ca, but I wanted to do an update before we left since it will be late when we get back. Taylor didn't want breakfast at Papa's, but he has done nothing but eat since he came in the door. Jim brought home a famous, New Orleans King cake yesterday. Taylor loves it. Luckily he just wants the middle and not the pure sugar topping. That is all his teeth need! He is now eating a bagel. Taylor came home and searched the house high and low for Logan. He was cute. He acts like he doesn't like him, but he is quick to look for him or want to kiss him goodbye. I guess that is how big brothers are.
Well, I better go. Today is mine and Taylor's alone day before he goes to NYC. We have to go to Wal-mart and buy tea and other important things to take. He is excited, too bad I can not say the same. I am just ready to get it over with and get the great results.
Please pray that they have a safe trip to and from NYC and get wonderful scan results!! Pray that the weather is nice enough for them to venture out some rather than sit in the RMH for a week. Pray that Taylor gets no fever or cold while gone and behaves. Pray for all our friends that are battling cancer too. Praise God for the miracles we have seen in Taylor's body and ask that they may continue and cancer never again invades his body. Also thank him for Morgan's normal WBC.
February 24, 2004 Day +328 Day #26 off treatment
God gave you a gift of 86,400 seconds today. Have you used one of them to say thank you? William A. Ward
Well, I think I jinxed myself when I told you Taylor was only pooping once a day. He went 3 times yesterday. Once at nap in his diaper and twice in his underwear. He also wet 5 times. UUGH!!! So much for catching right on. Guh came for a visit and Taylor was on the toilet. I was feeding Logan when he pooped, so he had to just sit until I could get to him. He talked Guh into cleaning him up so he could go play. He was very wild and rough and kept getting in trouble. He ate fair at dinner and has had several cups of milk and one cup of tea. He has not drank near the amount he would have drank had he been given tea all day. I guess he will work up to that as he gets use to milk. I hate milk, so it is hard to force him to drink something I myself would not drink.
Taylor's coach called again and he will have his first practice this Thursday at 4:45. We will play on Saturdays, but I don't know what time. Luckily he will not miss the first practice and if they always practice on Thursday he will not miss next week either. Opening day and picture day is March 13th and again he will be back from NYC by then, so we will not have to reschedule anything. Thank goodness. He is so excited to get a "number shirt" like Ca Ca. Jim still has an old baseball t-shirt with his number on it and Taylor loves it. I guess we will be washing that poor jersey everyday to be sure it is ready for games. He will not be dirty from sliding and what not, but from everyday wear and tear.
Taylor is going to Papa's today and tonight, so there is not much to tell you about him. I did get his urine results in. We have always just been told that they were coming down or were in normal range, but this time I asked for the numbers and for his numbers at diagnosis so we could compare. I would love to see all the numbers to see how they dropped with chemo and other treatments. Meredith really would kill me if I asked her to look all that up:) When we do urine they check catecholamine level or urine markers. We check the HVA and VMA levels. HVA <19 normal and VMA <9 normal. At diagnosis Taylor was HVA 556.4 and VMA 581.9. His last check on Feb. 17 was HVA 13.7 and VMA 9.7. WOW!!! We are discussing having Logan check periodically as well. There is such a slim chance of him getting NB too that the Dr.'s do not feel it is necessary to test him, but for our peace of mind, we want to. It is just a simple, non evasive, urine test, why not? Many other NB parents check their other kids. We shall see how it all turns out. We do know of another family that 2 of their 3 kids have NB. I would rather be safe than sorry!!
Logan is a bit on the ornery side today. He played for about an hour on his mat with me and I even got a laugh out of him. However, he is now a little ticked off, but I am not sure why. Yesterday I made him wait to eat. He was mad, but it worked. He ate at 5 and then at 9:45. He played until 11:00 and then slept until 4:00. That I can handle. I am going to try and push him back a little each bottle until we get a late bottle and a good nights sleep. Taylor slept 8-5 by 6 weeks, so I am about tired of getting up!!! He is doing better. He has been real playful today. He has been grabbing at his toys and laughing. He has not made any attempt to roll over of hold his head up while he is on his tummy. He hates to be on his tummy. He better hurry, by 11 or 12 weeks Taylor could do those things!! He is 10 weeks today and yes, the stump is STILL there!!
That is about all I know for today. Please continue to pray for a safe trip to NYC with great results an all his tests!!! Pray for all our friends that battle caner too. Please think of Austin's family as today would have been his 7th birthday and his grandfather also passed away yesterday. Pray that Morgan's lab work was okay today.
February 23, 2004 Day +327 Day #25 off treatment
Happy Monday to you all. We are having a nice, rainy day at home. Taylor slept until 10:00 to bad Logan didn't. Logan came home and went to sleep after being all day with exception to about an hour. He ate at 4:45 and went to sleep at 7:00 and woke up at 1:20. Wow!! I figured he would not go back to sleep, but he did. I guess keeping him awake all day is the key. That would be great if I didn't have to entertain Taylor too and do normal day to day things. Oh well, at least he is getting there. He has been awake about 2 hours now and is just now starting to nod back off.
Taylor woke up in a great mood. He even cleaned up his room without complaint and then got out his car rug and cars. Now the living room is a mess, but that is okay. He is in underwear, we shall see how it goes. He has only been pooping 1 time a day, so maybe we can get back into the swing of this potty training thing now. You know we only have 5 days until they head to NYC, so he will probably catch right on this time!! He has got a nasty draining ear. It is not infected just yuck. I am making him crazy trying to clean it, but I can not stand it. We ran out of tea and I refuse to make anymore. Taylor has the choice of milk or water. He chooses milk which is great because he needs the calcium, but it is no better for his teeth. You just can't win for loosing. He has eaten better today. He is eating turkey all though he thinks it is ham. You can give him any lunch meat and he will eat it as long as you say it is ham.
He confused us a little last night. We thought he was going crazy. He kept wanting to open the door to let the man in. He would go to the window and ask if the man was here or if he was coming in. We looked and no one was outside. We didn't know what he was talking about. Finally, I sat down and asked him what man was coming in. He said "the race car shirt man". He thought that his new racing outfit we ordered would be coming last night. I had to explain that it took a few days and that the mail man or the UPS man would bring it. He said ok, but I don't think he really got it.
He has been good as gold, but wild as a buck today. He is in a beautiful outfit. He is wearing a green football motif pajama top with swim trunks with blue frogs all over them with his red rain boots and a NY baseball cap. He is very stylish today. He is playing with his Valentine candy. He never eats it, just plays with it.
I called and made a reservation for Logan to go to the day care this Wednesday. I am going to the dentist and I am going to let Taylor go with me to see it is okay to relax and just open your mouth. I have never minded the dentist and it has never hurt, but you just wait, this will be the time I jump out of the chair in pain. Thursday Logan will go back to Nana's and Taylor and I will get another day out.
Please continue to pray that all scans are clear of any cancer. Pray that they have a safe trip. Pray that the weather is not too terrible. Pray for all our friends that are dealing with cancer. Be sure to stop by Austin's page tomorrow would have been his birthday. www.caringbridge.org/al/austin
February 22, 2004 Day +326 Day #24 off treatment
Yesterday was a good day for us, we hope it was for you. Taylor wanted to call Guh early and have her come and get him, so he did. When she got to Pippy's he decided he wanted to go eat, so they did. He then decided he wanted to go to Guh's house not home, so he did. He is a sneaky one. He knew it was warm enough to go outside and that Guh had to vroom vroom, so he had Pippy call her and he put on the sappy talk and she fell for it hook, line, and sinker. She made him call us to see if we cared if he went. I could hear him in the background and he was fine, he gets on the phone and he is "sad". Sneaky little booger!!
He played at Guh's for about 2 hours and she finally convinced him to go home. He got home and went outside to play baseball. He had a blast!! He liked watching Jim and I hit and pitch to one another. He likes to hit off the T, but he likes to do it with the real bat, so the poor T may not last long as it is just plastic. He seems to hit better left handed and throw right handed. We may have an ambidextrous on our hands. Is that good in the world of baseball? Will it earn him big bucks later in life?
I found a lot of things in the "supply" closet that were not any good in the home setting such as a few leads for the heart monitor and the thing that goes on your finger to check your oxygen levels. We also had a ton of gauze pads and a few plastic blood tubes that I assume are contaminated after being in the closet for a year. I put it all in a box for Taylor to play with. I tell ya, it is sad that he can play Dr. the way he can. He ripped into that pulse ox thing and had it on me in no time. He wrapped his tourniquet on me and drew blood with a syringe and then put it in the purple topped tube. That would be a CBC:) He even had me hold the gauze on my arm while he got the wrap ready to put on it. I don't know what that stuff is called, but he is so excited to have it since Ca Ca gave blood the other day and came home with some on. He is so funny. I asked him if he was going to be a Dr. or work at Milo's tea when he grew up. He said Milo's. I guess he has had enough of hospitals.
He ate fair throughout the day and only had one poopy diaper and it was not normal, but not runny either. He seems to be a little better as far as the cold goes, so maybe this new med will nip it in the bud and we will not need an antibiotic. His little eyes look a whole lot better. They are a little red, but no dark circles and not near as red as they have been. I think he just gets so busy on the weekends that he doesn't nap and they get red because they look real good during the week and then they get bad again. He seems to be feeling great, he has been full of energy and life. I think I have just been getting a little ahead of myself which is to be expected with scans coming up. I know I get this way every time, but I still let myself do it every time. I guess that is part of the game. I tell ya, when we get to the 6 month in between stage, Jim will not be able to live with me and when we get to the 1 year stage, I will have to be put in a home!!
Today was a good day for all but Logan. He was a pill today. He was a very whiney guy this morning and continues to be so at Guh's. We assume he is constipated. He had 2 bottles with Karo in it, but it hasn't helped yet, so I guess more Karo is on the menu for tonight. He is now asleep in his swing as he has only napped about an hour all day. Hopefully that means he will sleep good tonight.
We went to Golden Corral to eat lunch. Taylor ate very well. He ate enough ham to feed an army and he had a little bread and a little corn. We headed to the bowling alley after that. He was so excited. We got our shoes ( Taylor didn't get any) and got ready to bowl. They put bumpers up for him and it still didn't help me. You got to have a lot of time on your hands to bowl with Taylor. He was using a 7 pound ball, the lightest we could find, and he would lay it (drop it rather) on the ground then push it down the lane. It would be 2 minutes before it would hit the pins. Once he realized you went 2 times, he would roll one ball after the other. One time the 2nd ball beat the 1st to the pins. He did great, he even got a spare and a strike on accident. Mine were always on accident too! I bowl to the left side no matter where I start unless there are no pins in the middle then I go straight. I will admit that Taylor beat me! Poor Jim will probably be having arm spasms tomorrow. Look out anyone who is on his right side. Taylor got distracted on several occasions and wandered off and took me with him. That left Jim to bowl for all of us and he did that for about 2 games. I still lost, hmmmm... We ended up winning the grand prize!! We got a certificate for 2 hours of bowling and drinks free. Taylor will be very excited to go back. He gave Mrs. Jennifer a big hug when we were leaving and he never just gives out hugs in public. He got balloons from clowns and got his picture made with the clowns. If we compare this picture to the picture he got in Oct. 2002 during his first inpatient stay, we get a good chuckle. He hated the clowns then and today he was having a good ole time with them. As always, thanks a million Camp SAM, we had a blast!!!
We saw a lot of friends from clinic and some people we have not seen in a while. It was great to see them all. Everyone was given a $20 Target gift card, so we allowed Taylor to spend it anyway he wanted since we were right next to Target anyway. He got an orange football, a green, St. Patrick's day hat and a baseball shaped Easter basket. They did not have what he really wanted, so we had to go home and order that. He has a Tony Stewart jump suite that is too little and he wants to wear it everyday clean or dirty. I can not keep him out of it. I have no idea why he has sparked such a racing interest, but he has. I got him a Tony Stewart t-shirt, but it did not work. We ordered another jump suit. He got to pick it out since the Tony Stewart one looked different than what he had. He picked Dale Earnhart Jr. because it had number 8 on it. Number 8 is his favorite ever since he stayed on the 8th floor at the RMH in NYC. I hope it makes him happy and he doesn't get ticked off when it comes because it looks different. We made a point to let him see each one and pick it out.
Taylor's coach had called while we were out. He will be on the A's team. We have not gotten in touch with him yet, so we will update on the baseball situation as soon as we know. He played ball again today and had so much fun. The bat is so heavy for him, but he manages. He road his gator for a while too. He is loving being able to go outside again. I hope it warms up soon and very soon. It does not look as though it will be very warm in NYC although there he is content just being in the playroom. At least they only have a few days to be there rather than 2 weeks.
Please pray that they have a safe trip to and from NYC. Pray that Taylor has great scans that again reveal him to be NED. Please pray that he remains NED forever!! Pray that I am sane with both Jim and Taylor gone to NYC. Pray for Morgan who is having some issues with very elevated WBC. Pray that it is normal when they are rechecked and that they are only high due to GM-CSF shots. Pray for all our cancer friends that battle this everyday. Pray for our friend Jordan that we met up with again today. He is not doing great and had been told he can not be cured. Pray his family can get through this and maybe get a miracle.
We thank you all for the support and prayers that you send our way. We could never have gotten this far without all of you and the Lord above.
February 21, 2004 Day +325 Day #23 off treatment
Good Saturday morning to you all. I hope all is well. We are all good. Taylor went to Pippy's last night after asking all day "is Pippy here yet?" He picked out all his toys and clothes for the trip. He of course drug half of it out before they left, like Pippy and Pam had never seen any of it before. He had a pretty good day. He ended up eating a whole piece of pizza and that was about it. He had some candy and gummy snacks, but not much else. I hope he ate good at Pippy's. We got an invite for dinner out with Papa. Gam-maw and their friends. We went and some Mexican food. Thank goodness it was warm enough for Logan to get out. He had a nice visit with every one smelling his head. Ahh, baby sent. We got home around 8:00 and I cleaned up, again. It is amazing what Taylor can drag out and how far he can spread it out. I cleaned out the "supply" closet as well. I saved the syringes and alcohol and things that wont go bad, but I am going to give all the stuff that will expire away, so if you are in the "cancer club" and need heparine or saline let me know. I also have a few viles of GCSF. I don't want to see all that go to waste.
We were up by 9 this morning and Logan had to have a bath since he decided to puke all over the place. He was mad this morning at bath time, madder than usual. He is 9 weeks and 4 days and yes, we still have our stump. I think we are working on a Guinness world record. He is currently swinging and snoozing. He had some "tummy time" this morning. He hates to be on his tummy. He will not even try to hold that head up or roll, he just lays, head down screaming. It is a good way to clean his nose, he always has a face full of gunk when I roll him back over. Taylor never liked tummy time either. He eventually learned to hold his head up and roll over, so I am not worried about forcing him to do it. He played in his little tent for a while and talked to the toys. He slept good last night. He ate at 8:20 and then at 1:30 and 5:30. I would like a full night, but I will take that over his every 2 hour routine any day. We are making progress, so we will get there.
We have no real plans for today. Guh is going to get Taylor from Pippy's and bring him home and play for a while. Other than that I am not sure of any thing else. I wish it were warm like it was the other day. Taylor is itching to get outside. We can not afford to get him sick this close to NYC. We already have to get this cold cleared up or he will not be able to be sedated for his scans. He has to be sedated for the bone marrows. In AL we do not sedate for the MIBG, but in NY they do, so I am not sure it they would let him do it with out sedation. I just know you can not be sedated with a cold and congestion. He is not too bad, but I would hate for them to get all the way up there and do nothing.
Tomorrow we go bowling with Camp SAM. Be sure to check out tomorrows update as I am sure we will have quite an adventure.
Please pray that this cold goes away this week. Pray that the cold in NYC does not send them back sick. Pray that they have a safe trip to and from NYC. Pray that he is all clear and NED!!! Pray for all our friends that fight cancer too.
February 20, 2004 Day +324 Day #22 off treatment
There will be a blood drive at the Hueytown City Hall today Friday, February 20th from 7:00 AM to 6:00 PM. If you live or work in that area swing by and give the "Gift of Life". You will get a free shirt and a chance to win tickets to NASCAR Nextel Cup series. You can call the Red Cross (1-800-GIVE LIFE) or go to the web site www.givelife.org to see where and when other blood drives are or go to your local Red Cross office to donate. Taylor has not needed a transfusion in a while, but many people do everyday. The Red Cross says that someone needs blood every 2 seconds. Please donate blood and save a life!!
We had a fabulous time yesterday. I woke Taylor up at 10:30. I didn't want him to sleep to long and us have a repeat of the night before. He was in a good mood for what all he had been through. I got him dressed and ready to go. We dropped Logan off at Nana's at 12:00 and then headed to the Galleria. We did a little shopping until it was time to meet daddy for lunch. Jim got there around 1:15 and we had lunch. We ran into nurse Beth from the stem cell unit. We had a nice chat with her. It was much nicer to talk to her outside the "gated community". That is what we all called out home away from home. We also saw Jackie, Brandi, and Brianna. Brianna took a spin on the Carrousel too. Taylor talked Ca Ca into one ride before he left for work. He is so loud, he just yells hey to anyone that is looking and they can't help but hear him. We then bought a huge orange balloon that was in my way the entire day. We walked on the lower level towards the bathroom and Jim walked on the upper and he and Taylor waved at each other. Taylor was pretty ticked off when we got to where Jim turned and we kept going. He mailed a letter for daddy at the Galleria post office. He dropped the letter and a lady stood on it and it scared him to try and get it. It was just funny to see the expression on his face when she stepped on it. He put it in the mail slot all by himself and you would have thought he had done some great thing. He was very proud. Once we changed yet another poopy diaper, we finished up our shopping. Taylor got a Buzz lightyear fan that "cools" him down. He even blew it at Logan this morning when he was crying and told him he was going to "blow him away". He is a character.
After the Galleria we headed for a haircut. We didn't get the big boy do we wanted since his hair is still so thin. He would have looked bald if we had shaved the sides any shorter. He looks cute though. We will keep cutting it regularly as it will make it thicken up, so she says. We were going to go to Wal-mart and then get Logan and go home, but it was so nice out that I couldn't make him do all these indoor things. So, we went to the park. It was just us, we had the entire playground to ourselves. He loved it!! I had to see saw. I now know how my Pop felt all those times he had to see saw with me. Sorry Pop!! We raced down the dual slides and I pushed him in the swing. It was a child's swing with a buckle and all, but it was very high and that kind of made him nervous, so he didn't swing long. It was a little cooler than planned once we got to the park that is very wooded and shady, so we didn't stay very long, but we plan to go back very soon. We walked around and he picked up rocks and leaves and looked at the ducks. He climbed little hills and walked on the edge of the trail, making me very nervous as there was a lake down the hill. He is all boy!!!
We went to get Logan who was asleep, so we hung out and played and then fed him so he was not a grump in the car. Taylor enjoyed being with the other kids even if it was only for a minute. He also liked Nana's spiral stairs. They had to make a trip up them to get some gum and a Little Debbie cake. We got home around 6:00. It has been a long time since I drove in rush hour traffic and I even managed to miss the bulk of it, but it was still yuck.
We ordered a pizza for dinner. Taylor ate a few bites. I was upset with his eating yesterday and so far it has been bad today. He did go to bed at 9:30 last night and was up at 7:00. He just played in my bed while I slept and Logan slept in the swing. I called the clinic to see about getting an antibiotic for Taylor who can not shake this cold. I want it gone before he heads to NYC next weekend. Dr. Berkow was not in and I was not going to clinic to be seen by someone else, so she recommended another cold med and if it hasn't cleared by Monday we will call Dr. Berkow.
As for Logan he did very well last night and even sucked down 7 ounces at 4:45 this morning. He just ate again at about 10:30. He will go back to the Dr. on April 21st and Taylor again on March 23rd. Other than NYC, we are free of any Dr. visits for a long while. YEAH!!!
Please pray that Jim, Taylor and Papa have a safe trip to and from NYC and an uneventful trip (medically speaking) Pray that all tests are negative for NB. Stop by and celebrate with Morgan. She not only finishes her round of 3F8 and heads home today, she also celebrates her 1 year post transplant anniversary!! Way to go Morgan!!! www.caringbridge.org/nc/morganbarnes
February 19, 2004 Day +323 Day #21 off treatment
This is an update for those of you who have missed the lack of excitement in our updates. Prepare to laugh. As irritated as we were with the situation we lay in bed and just laughed. It felt so good!!
As I mentioned, we went to eat last night and Taylor fell asleep in the car. Here is how the rest of the night played out.....
8:15-Home, Jim put Taylor in his bed. He took his shoes off, but not his jacket. We figured he would be up in an hour.
8:45-Bathed Logan and played with him for a while, loaded dishwasher etc. Taylor's door was open and we were not trying to be quiet.
9:30-I snuck in and took Taylor's jacket off. It looked as though he was down for the night. He never flinched as I moved him around.
10:00-Jim went to bed. I stayed up reading a book (Cancer's Gift). It is by a fellow NB mom whose son was DX in 1990 and has been in remission for 9 years. I think I will write a book...hmm that is another story.
11:45-I am still reading. Logan hasn't eaten since 6:30, I am sure he will wake up any minute. That too, is another story:)
12:30-I'm still reading. I hear Taylor cry. He was thirsty. I made the new 75% water and 25% tea mixture and brought it to him. Quitting the tea cold turkey didn't work!! He took the tea, I turned on Blue's Clues, kisses and hugs were given out, blah, blah, blah. All the nightly routine was done and I left, shutting the door per his request.
12:45-I have given up on the book and Logan. He was asleep in the swing and I do not move a sleeping baby!! I turned the monitor on and headed to bed.
1:20-Taylor appears in my room along with night night, Frog, and the tea mixture. He wants in my bed on "that side" aka the middle. He climbs in and we cuddle. Love it!!! He raps his little arms around me and we lay facing one another, noses touching until he gets the giggles because our noses are smooshed. He wants to watch cartoons, there are none on at 1AM. He decides he wants to go to his room and watch cartoons.
2:15-Taylor is back this time with night night frog, Thomas pillow, tea mixture and a pack of fruit snacks. I tell him no, he can't have that at 2 in the morning. Go to sleep!
2:20-Logan is awake and ready to eat. I leave Taylor laying in our bed to got tend to Logan.
2:25-Here comes Taylor down the hall all happy-go-lucky and wide awake. He wants a rice krispie treat. I assume he is hungry to keep pushing and since he has not eaten well the last few days, I approve. He took it to our room and he did eat it all. He ran out of tea and never asked for more.
3:00-I put both boys back to bed. Taylor wants books. We spend 5 minutes pulling out all the Clifford books. I tuck him and all his paraphernalia (add a flashlight to read with) into bed and tell him DON'T get up again. GO TO SLEEP!! Soon I hear the customary sign that he is ready for bed as he often goes to bed with books. I hear bang, boom, thump, bump etc.. as the books one by one hit the floor. A few minutes later I hear the legos and cars come out. I started to get up, but decided he will go to bed when he is ready, as long as he is in his room minding his business, I will leave him alone.
4:30-He starts calling "mama, mama". I woke Jim up, I was tired of the game. He went in to check on him. The movie was over and went off and the room got dark, he wanted the light on. Jim turned the movie back and told him to go to sleep. He had a bed full of books, crayons and legos, but he was laying down. We thought he was done.
5:30-He is calling again. I go this time. Holy cow!!! His bed is covered in pink and orange marker. He had scissors too. Now mind you these scissors are plastic and will not cut anything, but his idea of cutting is putting the paper in the scissors and just ripping the paper. So, my initial reaction was not that he had scissors, but that there were 900 little pieces of paper in the bed. I had to turn the light on to clean it all up. ( he now thinks it is time to get up and party, like he hasn't been all night) With the light on the story gets better. He has a million teeny tiny little Bob the Builder Color Forms in the bed too. To top it all off he has colored his stomach pink, orange and purple!!! I am too tired to be mad and trying not to laugh. I am concerned with our planned outing being ruined by his sleeping all day or his bad attitude due to not sleeping all night. I tuck him back in and I had to bring out the big guns. I had to do some serious yelling and threatening. I knew he was not getting back up, but we did hear some moving around, so he was not asleep.
6:45-Logan is squirmy again. I move him to his swing and turn on cartoons. He likes that. It will buy us a little longer in bed. I check on Taylor. The "little Picasso" is finally asleep!!!
It is now 9:25 and he is still snoozing. Hopefully it will not be an all day sleep as I do still want to get out. I am ready, so whenever he gets up we will head out and no, I am not washing off the art work.
I will update again tomorrow on how our day went. Hopefully you are all getting a good chuckle out of our night. We did, even though we are tired.
I got Taylor's counts from Tuesday. His WBC were 14,000 and his plts were 295,000. I assume the cold has his WBC elevated and his plts just fluctuate. That is still very much normal and could be nothing more than just the sample they got. He has also fallen and gotten several nice bruises on his knees this weekend, so he may be using them there:) Boys will be boys!
Last night we all went to Golden Rule. Taylor said he wanted to go out to eat and we aim to please. He did fairly well. He had about 1/4 of his grilled cheese and some fries, salad, crackers, and pie. He had a pack of noodles for lunch. We can not find his noodles anymore, so if anyone runs across Betty Crocker fettuccini noodles in the little travel bowl, let us know where and we can stock up. I made him a different kind the other night and he refused them. I can't have him not eating. Logan also did well. He ate his 5 ounces before we left and he slept while we ate. Taylor, who laid in bed for 2 hours and never napped, fell asleep on the way home. Logan woke up as soon as the car slowed below 70! He got a bath and got all spiffed up for his trip to Nana's tomorrow.
I asked Taylor what he wanted to do tomorrow, just the two of us. His answer, "go to Ny Yuke". Unlike the rest of us, he likes it there. I talked him into the Galleria and Wal-mart instead. I think we will throw a hair cut in there too. Can you believe it, he already needs a hair cut again. I love it!!
There will be a blood drive at the Hueytown City Hall this Friday, February 20th from 7:00 AM to 6:00 PM. If you live or work in that area swing by and give the "Gift of Life". You will get a free shirt and a chance to win tickets to NASCAR Nextel Cup series. You can call the Red Cross (1-800-GIVE LIFE) or go to the web site www.givelife.org to see where and when other blood drives are or go to your local Red Cross office to donate. Taylor has not needed a transfusion in a while, but many people do everyday. The Red Cross says that someone needs blood every 2 seconds. Please donate blood and save a life!!
February 18, 2004 Day +322 Day #20 off treatment
Well here we are on another Wednesday at Fort Watts. It is finally sunny again and warming up. Yahoo!! We are so ready to be able to get outside and play and to be able to get Logan out. You can tell a big difference with Logan and Taylor. By the time Taylor was 2 months he had been numerous places. I guess you learn to be more cautious plus Taylor's cancer changed the way we do things anyway. Poor Logan just sits at home. We also lived in Auburn and had to come home to see everybody, so that was a lot of his travel.
We are all great. We slept until 10:00. Wow, I know. Logan was up at 8:00 to eat, but went back to sleep and Taylor had not even stirred, so I eased back in bed too and at 10:00 Taylor woke me up climbing in my bed. I feel much better, I needed to catch up. I guess Taylor did too. His eyes look a lot better. He was running full speed and I gave him Triaminic and he slowed a little. It does cause drowsiness, so I guess it is kicking in. Dr. Berkow wanted him to take something that would make him sleepy and he can sleep off the cold rather than the Sudafed that was "jazzing him up" as Berkow put it. He is still having runny poops, but so far only one today and it was not as runny. I am never going to get him potty trained. I am not putting him in underwear to clean that up later, so he is in pull-ups. UUGH!!! One day!!
Taylor and I had to go to Wal-mart last night and buy some Triaminic. He almost didn't get to go. He was being so ugly in the car, kicking and screaming that I had to turn around and head back home. He did get to go, but he didn't get any of the goodies he asked for. We got medicine and formula. Nothing exciting for him. He did enjoy the time away from home and it not be the hospital. It has been so cold he hasn't had many outings.
As for Logan, the active 9 week old, he still has that darn stump. It looks to be drying up, but not falling off. He is loving the play gym. He just talks and kicks while he is in there. He fell asleep in it last night, but we moved him to his bed. He had a great day and night. I fed him at 3:15 and he played and napped until 8:20 when Jim fed him again. He played in the gym thing until he fell asleep around 10:30. He slept until 3:30. He didn't sleep the whole time, but he went a long time with no bottle. We are making progress. We have found a tickle spot. He will smile and grunt the first few times you tickle him, then he starts giving you the "Watts stare" the very one that gets Taylor in trouble quite often.
Taylor is now playing and destroying the house and Logan is starting to wake up and want to eat again. We have no plans for today, but tomorrow Logan is going to Nana's and Taylor and I are getting out for some fun.
Please continue to pray for Taylor and his progress in beating this disease. Pray that he will stay NED forever. Pray for all his friends that are battling this and other cancers or diseases. Pray for the families that are just learning about their child's illness or who have lost a child. Remember to wish Gracie happy birthday tomorrow and Austin on2/24.
February 17, 2004 Day +321 Day #19 off treatment
Finally, clinic day. As much as I hate to go to clinic and sit and wait the day away, I love to go to clinic and see Dr. Berkow and the nurses. Not just because that is usually my only adult contact during the week other than Jim, but that is a good reason. It is because you always feel better knowing counts and talking over fears with the one who has the answers or can help find it if they don't know. Taylor did not complain anymore yesterday of any pain, but he did have 4 really runny diapers. He had about 1/4 a glass of milk and a good bit of tea. (I don't want to talk about it) He ate 3 chicken nuggets, 1/4 bowl of oatmeal, 1 wiener and a few bites of brownie, gummy snacks, and Lucky Charms. At 11:30 he wanted noodles, but I talked him into oatmeal and he ate it all. Gam maw has an awful stomach bug and no I don't wish Taylor to be sick, but I hope he is acting this way due a touch of a bug rather than a more serious problem. His eyes continue to be red and he has dark circles under his them.. He has been sleeping fine and napping, so I have been concerned about that.
I think today was the shortest hospital visit in our history. We got to clinic at 8:15 (Taylor wanted French toast sticks from Sonic). He weighed in at 28.9 pounds and 36in tall. We drew labs and he stole a tourniquet to play Dr. with. We went to change yet another poopy diaper. They were calling us when we came back in the clinic. We collected urine on our first try. I am not sure that we got enough, but we turned it in and we will find out. Dr. Berkow didn't really have an explanation for his behavior and complaints, but just to have him looked at and checked over was good. We did not wait on counts for today since last months were so good. He will call if there is a problem. I may call later just to check and see, I am always curious. His counts from last month were 7.94 WBC and 328,000 platelets. Holy Cow!!! We haven't seen platelets like that in over a year. I guess that proves that 3F8 was really wiping them out. The rest of his counts were good too, but that is all I remember. The final results were in on the CT scan and it was clear. Praise God. We go back to clinic on March 23. We will again get a urine test and lab work and report on out NYC trip. We should return to NYC in June.
Guh came for a visit and he played fine and even let her leave without a fight. He played down stairs by himself for a long time. He and Ca Ca played play dough for a while and built and awesome house out of lincoln logs. He has been dressing himself lately. Whoa!! He had camo pants, a sky blue shirts, Buzz lightyear house shoes and a fireman rain coat picked out to wear today to ride with Jim to Subway. I had to do a lot of talking and bartering to get the outfit toned down a little. He allowed me to pick out his clothes for clinic, but he wanted to wear his rain boots. (he changed his mind before we left) Guh bought new rain boots. They are red with fire trucks on them. He can put them on by himself since they have rubber loops on each side to pull and no zipper or laces. The first night he had them he used them as bags rather than shoes. He has a yellow pair that he loves, but we have to about break his foot to get them in.
The microwave guy got here around 5:00. He was about 17 years old:) He was just here to get the microwave and bring it in. That is not the way it is supposed to work, but the guy that fixes microwaves was off today. I wont ask why she scheduled me today, but oh well. We have no idea how long it will take to get it back. The kitchen looks awful as it was above the stove and now there is a big hole. Hopefully it wont take long. Jim had to help him get it out, so I hope he brings help to put it back in because I certainly can not do it. They even had to go up in the attic. No way am I doing that.
Did you all see us on the news? I know a lot of people were off yesterday and only read the page at work. Hopefully people were home at 5:00 to see the news. Most people are usually just getting off work. Maybe that is why they saved it for today. Sorry we gave the update so last minute. We got the call at 4:30 that it would be on at 5:00. We were scrambling to set up the VCR and call family members. It was a good and they used a lot of footage of him playing and a lot of still shots. Hopefully that will boost the numbers on up to 1000.
Temperance came over and kept Logan. Thanks a billion, Temperance, I owe you. She will probably never want to do it again. Logan is always quiet when they come over, but I am sure he showed his true colors today. Everyone sees it eventually:) He is not bad, he is just high maintenance. It was odd to call her. We used to baby sit together and split the money and now I am asking her to keep my kid. We are getting old:) He was good for her, but the minute she walked out the door he started to cry. I think he was more upset that Taylor and Christian were not screaming anymore and it was just to quiet. Silly boy!
Continue to pray for Taylor's health and NED status. Pray for all his friends that battle this disease daily. Pray that he is indeed fine and I am a worry wart and that nothing is being overlooked.
February 16, 2004 Day +320 Day #18 off treatment
We just found out that our news story will air tonight at 5:00. Sorry this is short notice, but they just called.
Trivia time for those of you who know us well. Today is the day that Jim and I officially started "going together" how many years ago? Answer: 150! No, really it was 12 years ago. We have been married 4 1/2 of those 12 years. Wow! That is a long time.
Mr. Logan is officially 2 months old today and yes, we still have the stump. It looks to be dried up a good bit more than it was and we are still putting alcohol on it, so maybe soon it will fall off. He can finally get a real bath. He slept good again last night. We still fed him at midnight and 4:00, but that is better than the usual.
I think Taylor is trying to worry me into an early grave. He went on to complain about everything on his body last night. He would tell you he hurt and whine and cry and want to be held then jump up and go play. He was so very whiney and continues to be today. He had a 100.4 temp when I put him to bed and I took it in both ears and both arms and got 100.4 under one arm, 99.4 in both ears and normal under the other arm, so I am not sure if he had a temp or not. He doesn't now for sure. He has had 2 very runny diapers. All of this could be a little bug or something he ate, but none the less we worry. With the complaining of pain, lack of appetite, red eyes, moodiness, and poops I automatically go into panic mode. I can not wait to see those lab results and talk to Dr. Berkow tomorrow. Plus 2 weeks and we will get the rest of his scans done. I am still fairly confident with the Ct as I said last night, but still that does not look at everything and I need to see everything. We will also do another urine marker test tomorrow. It has been a month since his last one, but it was normal.
We are just hanging out at home today since we are waiting on the guy to come fix the microwave. We cleaned up yet again. Taylor has had one glass of tea today and is now drinking milk. Well, he has milk in his cup. He knows he can not have anything else until that milk is gone, but he doesn't seem to care. We will see how it goes. He took a bath this morning. A cold one too. Jim and I had both just had a shower and the washer was on, so the hot water was gone. I tried to get him to wait, but he refused. He let me brush his teeth and did fair, but he was already ticked off because I took the band aid off his port. I have been giving him Sudafed and he is really getting better now. I have not even done nebs in a few days. He is a little snotty, but not too bad. He is not coughing at all during the day. Yeah!!
As of December 31, we have 114 commitment to purchase forms for the tag. Please do that!! You can look at the links below to have someone to get it for you or to just donate a little and we will buy a tag every time we get $50. We do not have much time left to get to 1000 and it is for a good cause. Please, do it for Taylor and all his friends that battle cancer with him.
Please continue to pray that he is still and can remain NED. Pray that his aches and pains and moodiness are just from being tired and a rotten 3 year old and nothing more. Pray that we can rest easily until we get the results in of this round of scans. Pray that life will get better and that we do not always worry over every little thing. ( that would really only be me doing the worrying) Pray that Logan never endures anything like this. Pray that darn stump falls off and he can bathe:) Pray for all our friends that battle cancer too.
February 15, 2004 Day +319 Day #17 off treatment
Taylor did spend the night with Pippy. He cried a few times, but would get distracted and forget about it. He really enjoyed watching his movies on the big TV. I am sure Pam and Pippy wont mind if they never see Rugrats, Thomas, or Wiggles again. He went to San Antonio Grill to eat with Pippy, Pam, Butch and Diane. He loves San Antonio, so he was happy there. He ate good even though he had already had dinner. He got real good and riled up, so when they left there at 8:30 he was no where near ready for bed. At 11:30 he asked to take a bath. He finally went to bed at midnight. He slept until 9:00. He took his medicine like a big boy and everything. He got back home around 12:30. He came home raring to go too. He has destroyed the house. I guess I will ignore it tonight, I don't want to clean up. I did do laundry and dust, that's enough for one day.
We got some film developed today. Some of it was old as we rarely use anything but the digital camera. There were stem cell pictures and pictures of his half hairy and half bald head. He looked so different. He looks so skinny to us now, but looking at those photos, we could see how much he really has filled out over the past 10 months. One roll they did backwards and our house is backwards. People that had never seen our house would think nothing of it because they look fine, but it was odd for us to look at backwards. The only ones that you could tell were wrong was one where the clock showed up and it read backwards and a picture of his birthday cake and Happy Birthday read backwards. There were some funny ones in there. We will post new ones soon.
We are just hanging out now and avoiding the cold weather. We were all dressed and ready to head out to the Galleria to watch the circus, but the temperature just kept dropping, so we opted to stay home and not get the kids out in it.
Taylor has been practicing his ball. He and Ca Ca roll the baseball up and down the hall and catch it in there gloves. Taylor pretends to spit when he is playing. He tells us how hot his hand is when he takes his glove off. Taylor calls it a mitt and we are not sure how he knows it can also be a mitt rather than glove. He is now showing me how he can drop the ball in his glove like the "big boys" do. He has also been killing us with words he is coming up with. Tonight he keeps scratching and telling me his "poo poo hole" hurts. I think you can all figure that one out. Thursday I put his car seat strap too tight and he told me his "front butt" hurt. I laughed so hard I thought I was going to have to pull over.
He has complained of his feet and hip hurting today. I hope he has just been so busy this weekend that he is having cramps. I think Accutane is probably out of his system by now. I feel fairly confident that it is just cramps and silliness since he just had a clean CT scan, but the worry is always there. We only have 2 more weeks until he will head to NYC for the rest of his scans. I am so anxious for them. It is just the most nerve racking time. You want them so you can have peace, but you fear them too. We are ever faithful that they will be clean and clear of any cancer.
Please continue to pray for his health and clean scans and bone marrows. Pray for all his friends and there families that fight this disease.
February 14, 2004 Day +318 Day #16 off treatment
Happy Valentine's Day!!
Hope you all had a nice Valentine's Day. We did. We started the day at the McAdory Dixie youth pee wee registration. We got him all signed up and decals, shirts and hats ordered. March 13th is opening day and picture day. We are ready!! Papa brought Taylor to the ball park and let him look around. He seemed to enjoy his visit.
We came home and opened our V-day cards and gifts. Taylor got a cool thermos full of candy. He got a candy watch that he will not eat. He got some stickers and a Buzz Lightyear card. Logan just got cards, he wasn't too impressed.
We came back home and Guh and Mary came for a visit. He played with them for a while and then Pippy came and got him. He has never spent the night at Pippy's, but he has a bag packed for the night. It is 9:30 and he is not home yet, so I guess he is too busy playing to be worried or scared. He took enough toys. He looked like he was moving. He enjoyed riding in Pippy's BIG truck. I am sure he has had to go look at the boat too.
Jim and I went to get Logan from Nana's. He was a good boy for her. (little snake) He slept yesterday, but he did get Tylenol because of his 4 shots he got at the doctor. He woke up at 2, 4 and 7. That is about par for the course. She gave him a bath too. I bathe him and he smells good, but holy cow he smells good. I thought she had washed his blanket at first, but it is his body that is so scrumptious. I have been holding him all afternoon just sniffing him:) He went out to eat with us and Chris, Temperance and Christian. He did pretty good. He hates the car seat, so we had to hold him. Taylor didn't mind the car seat, he would sleep in it even in the house. It better be in the car driving at 70 before you put Logan in it. He screams as soon as you start down the exit ramp. It is kind of funny. He also made a trip to Big Lots. Nana had the coolest little tent like toy that has all kinds of toys that hang down for him to kick and swat at. I just had to have one, so I had to search all the Big Lots until I found one. He loves it. If he loves it, we love it. We all went back to our house to watch a movie. Christian finally got to explore without Taylor taking things from him.
As for last night, Jim and I dropped Logan off at Nana's around 3:00. We went to look at the Amsouth day care that we enrolled Logan in. It is only for days that I may need to take Taylor to the doctor or for when I am in NYC and Jim is at work. It is a drop off or sick child care center that is just used on a as needed basis. It just happens to be in the building that I used to work in. My center has since closed since I quit. It was very interesting to see how they changed up the building and boy is it different. I feel very comfortable leaving him there. The assistant director is a girl I went to Auburn with and she is the sister of the pharmacist in the stem cell unit at Children's hospital. The infant teacher worked with me in the other center and a lot of the babies that use the transitional care are children of Jim's friends at work. Taylor went with us and seemed to remember bits and pieces. They use my old 3 year old class as the infant class and I think Taylor remembered going in there in the mornings with me before I brought him to his room. It was a nice visit, I am glad we checked it out.
We then headed to the Galleria where we met Gam maw and Ghen Ghen. Taylor shopped with them before going to spend the night at Gam maw's house. Jim and I went to eat and to see 50 First Dates. Go see it!!! We laughed until we cried. It was an all around good movie. It was funny, romantic and sad. We really enjoyed it. We slept last night like we did before kids (minus the rose peddles on the bed) Just a little joke for those of you that have seen the Nyquil commercial. Anyway, it was good sleep. We didn't get to sleep late, but our bodies would probably reject more than 6 or 7 hours of sleep.
Taylor was only home a few hours today, but he still managed to make a big mess. It's a holiday, so I am not cleaning it up. Good excuse, huh? Well, that is all the news we have. I hope you are all enjoying Cupid's day. Tell someone you love them everyday!! We certainly love and appreciate all of you!!
Please thank God for the cleat CT. Pray that all NYC scans are clear as well. Pray they have a safe flight to and from NYC. Pray for Morgan as she starts her 2nd week of 3F8 this week. Pray they too have a safe trip home. Pray that all our NED friends and Taylor stay that way forever. Pray our friends still fighting reach NED soon. Pray for all of those that have lost their loved ones to this or other diseases and do not have them to hug on this day of love. Pray for the Baker family and the Holmes family. Feb. 19th would have been Gracie H's birthday and the 24th would have been Austin's. You can drop by to offer them some kind words. www.caringbridge.org/al/austin www.caringbridge.org/al/gracie
February 13, 2004 Day +317 Day #15 off treatment
For God so loVed
*****that he gAve
**********his onLy son,
***that whoever bElieves
Notice the capitalized letters spell Valentine. How appropriate.
Today Logan had his 2 month baby check up. He weighed in at 11.9 lbs and was 23 1/2 inches long. He was in the 50% for his weight and the 75% for height. He checked out all fine and his CAH test was indeed normal. Dr. Petelos put some Silver nitrade on his stump, so hopefully he will lose it soon. He said it was not even close to falling off. I also talked the staff into buying cancer car tags. Way to go!! It was a leisurely visit. We were the only patient there and since it was time for Logan to eat we hung out for a while. We will go back in 2 months for a 4 month check up.
After coming home and getting Taylor and Logan dressed in there matching "big brother" and "little brother" shirts we headed to the Milo's tea plant. We had an absolute blast. Taylor was shy at first. We warned them that he would not be shy for long and we were correct. By the time we left he was screaming and locking people out of the building, trying anyway, he had a key:) We got to go back to the plant area and see how the tea is made. We saw it all from the containers being put on the assembly line to the final product being packed up for shipping. It was a neat process. Taylor loved it all, but I think he was partial to the part where the machine filled the containers with tea. I don't know, he was pretty impressed with the stickers being put on too. He said it felt like New York in the cooler. He got a Milo's hard hat with his name on it. Does that mean he is on pay roll now? He said he wanted to work there when he grew up. He wants to drive the fork lift. Mr. Jay even had a signed Auburn football helmet in his office. Taylor had a good time just running up and down the halls. He also got a Valentine good bag from all the ladies. He has already dug into his candy. Thank you to Jay and Doug and everyone at Milo's. We really enjoyed our visit and appreciate all you have done for Taylor.
It is now a little after 1:00 and we are fixing to get a bite to eat and then unload the kids in their designated spots for the evening and begin our night out. We will update you again tomorrow. Have a wonderful Valentine's day!!!
Dr. Berkow and Meredith emailed me back and the results were ALL CLEAR!!! They really were not in the computer. I didn't doubt the nurse it is just my human nature to let my mind wander the wrong way. That is the joy of being a cancer parent. His scan did show a lot of sinus gunk, but that was to be expected after a week of this cold.
I will give another update
tonight, but I wanted to share the above items and let you know that we will
have another long day. Logan has an 8:00 Dr. visit. We are also going to visit
the Milo's tea plant. They sent Taylor loads of tea to NYC and now he will get
to see how it is made. Logan is going to spend the night with Nana tonight and
Taylor with Gam-maw. Jim and I are going to a movie for Valentine's day. We were
going to go out of town, but we have to register Taylor for baseball early
Saturday morning. We can't afford it anyway. Especially if we are going to cap
all Taylor's teeth. I am still very upset about that. I cried and cried last
night at the thought of all those teeth and how ugly his pictures would be for
the next few years. He has been out of daycare for over a year, so he has
already lost a lot of social skills and now I have to throw him back in with a
mouth full of caps and he will be made fun of. Poor baby!! I can look at it as a
small price to pay for his good health, but a child will not.
February 12, 2004 Day +316 Day #14 off treatment
What a day!! We got to clinic around 8:30 or so. No one ever canceled our appointment for clinic today so it took an act of congress to get the receptionist to understand that he did not need labs drawn and that all we needed was to get him accessed so he could go to CT. Finally, she got it and we got him accessed. We headed up to Ct at 9:30. Our appointment was for 9:00, but for some reason CT always says it is later when they call to confirm. I guess it is because they are never on time!! So we were technically on time. We didn't even get set down good and they called him. Usually you go back to a room and drink the contrast and then go on in to the CT room. This time they gave me the juice/contrast mix and said to call her when he drank it. I fought with him for 45 minutes and got about half the can down him. I had an audience watching the show. He was screaming, I was whispering threats between gritted teeth. I drank a sip, black dog got a sip, then Taylor took one. He would turn his head and let it dribble out. It was awful!!! I finally called and told her that I had gotten half the can in him and if she wanted more she can come fight with him. She said that was plenty and she would call us in an HOUR!!! Now I am ill. He is NPO therefore I am NPO. We are both ill at this point and want to get this over with. Finally we go back and since he did not get sedated we did not have to go through the routine of BP, weight, temp etc. He went right to the table, well after we made a pit stop to the bathroom to change the poop. I had forgotten to check our wet wipe supply and we were out!! Hard, brown paper towels worked just dandy! Anyway, we made it to CT. He laid just perfect. The tech even said he wished all kids that age were so good. He scored a hand full of stickers for being so good. This time they put his head in a cradle and we didn't have to worry about him moving it. They used 2 different cradles. The last one made him lay with his head upside down over the edge of the table. That kind of freaked him out. I had to climb behind the machine so he could see me. It didn't take very long to get the scan done and we were outa there.
After the CT we went for some lunch. He had a hotdog and some powdered doughnuts. We then headed to clinic again to get de-accessed. We read some books and played with a stool while we waited. After that was over we went to the dental clinic. We saw Dr. Mitchell who was very nice. He said Taylor could have NO MORE tea. Yeah right!! He definitely can not go to bed with it and he needs to drink half a cup a day if he is to have it. He needs to drink water or whole milk the rest of the time. That is going to be awful to try and do, but we will have to do it. We have to either quit the tea cold turkey or dilute it a little each night until it is all water. Dr. Mitchell just talked to us and then went over his medical history. We then went to the back to see the hygienist. She got the hard part!! He had to lay in your standard dental chair and get the standard cleaning and flossing. He hated it. He hated the suction the most. They were very good with him though. She let him play with the tooth brush before she got it ready to use. She told him the suction was a McDonald's straw and let him suck on it before just jabbing it in. He still didn't like it, but she tried. Then she laid him back and got to work. He was shaking his head back and forth the entire time, but she got it done. I must say I don't think she got them very clean. but I guess anything helped. Another doctor came in to count his teeth and examine them. She wrote down his big medical terms while he did it. When he was done he broke the news to me. There is a 6 month waiting list that we are now on to go to O.R. and be put under general anesthesia and have EVERY tooth in his mouth capped. SILVER!!! Insurance will not pay for a white cap and it is $150 a tooth, so he will have an ugly silver mouth. I am so upset that he will have an ugly mouth and smile until his baby teeth fall out and new ones come in. We can not let it go or pull anything due to the spaces have to stay filled until the baby tooth comes out so that the new teeth come in right. It will be August before we get in as they are very backed up. I have no idea if we are on the list. The Dr. said she receptionist would put us on the list, but she acted like I was crazy for asking and that the Dr. did it. The hygienist heard him say to go up front so she said she would talk to him about it and get us on the list. I guess my job is to call them if we have not been called in 6 months. I guess a lot of kids have rotten teeth. I guess that is just a small price to pay for his health. The dentist did say that the tea is not helping anything, but chemo and radiation to the head is horrible on the teeth.
After the dentist we headed back to clinic 5 to find out the results of the CT scan. I have never had one on a day that we were not going to see the Doctor or we were inpatient. So, I have no idea the procedure for finding out the results. I was told that no other Dr. could call, but Berkow and he was not there. A nurse looked in the computer and said the results were not in. I have no idea how long it takes to be put in or if Dr. Berkow calls to get them and that is how we know so fast. Anyway, You know me, I can not just go with the fact that they are not it. I have to jump to the conclusion that something is wrong and she just isn't telling me. I am about to die to find out and I do not know how long we will have to wait. Again, you all know me, I have emailed Meredith and Dr. Berkow, so maybe tomorrow we will know. It will eat me alive to wait all weekend.
I had to call again about the microwave. The only appointment they had was for Monday between 1-6. Great, an off day for Jim and we could be going somewhere and we have to stay home and wait for the repairman that will likely show up at 7:00. Luckily we kept our old microwave and Jim brought it down from the attic and we were able to make noodles. However, they were a different kind and he knew it and refused to eat them. He has been horrible tonight. Hitting, yelling, refusing to follow directions. He finally got sent to bed early. He is yelling very loud about it too. He is also yelling about the cup of water he was given. HE told me "that no taste good". I hate this. I know he is not sick any more and he has to be treated like a normal 3 year old, but he is not a normal 3 year old. He has been through more in 3 years than most of us have in our adult lives. He did not grow up eating at the dinner table with a balanced diet. He grew up (learned to use utensils and all) eating off a cafeteria tray in a hospital bed. We pushed and cheered any food he ate since he rarely ate. That is my motto, if he eats or drinks then we are good. He will not eat or drink if he doesn't like it. What is worse? Rotten teeth and a bad diet or dehydration? Uugh, this sux!!
We finally made it home around 2:30 or so. Taylor is watching TV and Logan is TRYING to poop. We are going to have to do something about this formula. The Karo is not helping. He goes to the Dr. tomorrow morning, so we will get that all straightened out then.
The Dr. did email. The CT was clear!! Praise God!!
Please pray that the CT scan in clean and clear!! Pray that we find out soon and that he is NED forever. Pray for all our friends.
February 11, 2004 Day +315 Day #13 off treatment
My formula for living is quite simple. I get up in the morning and I go to bed at night. In between I occupy myself as best I can. -Cary Grant
I have dubbed today "bad mood Wednesday". Everyone in this house is in a bad mood. Taylor woke up in a great mood, but was soon set off by another dose of Benadryl and a train track that wont stay together. He has slung things, stomped and yelled "dang" all day long. Logan has screamed in pain from yet another bout with constipation despite several bottles with Karo syrup in them. He has been fussy and wanted to be moved from spot to spot today never being content in any one spot for more than 5 minutes. To top the morning off, Taylor chose his beloved noodles for lunch. He has eaten only junk for the last several days, so I was more than willing to jump up and cook them. (that meant leaving Logan to scream) Guess what? The microwave is broken. It is running, but not heating. I had to tell him no noodles today. He flipped out. Finally he decided on a can of baked beans, but then flipped because I cooked them on the stove rather than the microwave. He is a creature of habit. He had gotten out the bowl we always heat them in and cried when I didn't use it. Luckily, he was content with eating out of the bowl rather than cooking in it. I have called to have it fixed, I am just waiting on them to call and make and appointment. I hope it is soon. I never noticed how mush I used it until I couldn't use it.
Finally Logan is asleep. Maybe Taylor will stay quiet and not wake him up again. Taylor has been doing great on the potty today. I hope I am not jinxing myself. He always starts having accidents after I tell you he is doing good. It is time for more Benadryl and a nap. I think I will have one myself.
Logan is 8 weeks old now and guess what..... he still has a cord stump. He goes to the Dr. on Friday and if the Dr. doesn't pull it off, I am tempted to do it myself. Poor baby is 2 months old and has not had a real bath. I am ready to quit the sponge baths and start a good warm bath in the baby tub. Taylor loved a bath as a baby and I think it might settle him down at night. We shall see what Dr. Petelos says on Friday.
Guh is coming to spend the night tonight. Taylor and I have to be at Children's very early in the morning and she is keeping Logan. We will have a long day!! He has to get his port accessed then go for the Ct scan. We will again have the CT without sedation. This makes that process a little faster and safer. He will also not need to be carried out or be half drunk all day. We then have until 1:30 to kill. At first we had a clinic appt, but since we saw Dr. Berkow last week we no longer need to see him tomorrow. We will go down and get the results from the CT scan. He is still snotty, but seems to be getting better, so I do not think I am going to have him seen for his cold. We have a dental appt. at 1:30. I am almost embarrassed to take him, his teeth are slap rotten!!! I am sure we will make several trips to the dental clinic for work. I can see several black spots as well decay. Most chemo kids lose the enamel on their teeth and have it re-done, so that may be in our future as well. Again, we shall see tomorrow. Taylor always wants to eat in the cafeteria, but we never have time. I guess tomorrow we will have plenty of time to eat in there. He will love it. I hope it is a god food day!
Pray that our day calms down after everyone gets a nap. Pray that our day tomorrow only holds good news. Pray that the CT and all scans to come in the next few weeks are 100% clear of any NB cells. Pray that Taylor can maintain his NED status forever. Pray that Logan's visit also only holds good news. Pray that all out friends battling this disease can also get to NED and remain there. Thank you to all of you who have faithfully stood by us and prayed for us and with us through out this journey.
February 10, 2004 Day +314 Day #12 off treatment
Mr. Taylor had a pretty good day yesterday. He had quite a few visitors. Pop, Guh, Papa, and Uncle Dugan. Papa took him with him to spend the night and to stay the day today. He had Benadryl around the clock yesterday and seems to be feeling better and less snotty, but was grumpy from being sleepy and not wanting to sleep. He did finally take a 2 hour nap. He also wet his pants 3 times and pooped in them once. It was such fun. I think he forgot everything he had learned before we slacked up. I wish I could snap my fingers and it would be done, but oh well.
Logan went 7 hours between feedings. Yahoo, we are making progress. He is now very constipated. I have been giving him one bottle a day with Karo syrup in it, but I guess he need more. He finally got it all out, but it took a lot of grunting, pushing and crying. Poor baby!! He is now cooing and gooing in his swing. Hopefully we will not have to deal with that again.
I have not talked to Taylor today, but I am sure he is having fun and I will be sure to tell you all about it tomorrow. He did call us last night and asked if he could yell. He knows he has to be quiet here when Logan is sleeping and he had to ask if he could be loud at Papa and Gam maw's. When I answered he was just yelling and then he stopped and said can I do that? I didn't get it, they had to explain. Then he asked me again. I told him he could be loud there. We played Upwards again and this time Taylor got his letters from a puzzle and put them on the little stand like we had our tiles. He would show us the letters on his that matched the letters on ours. A good game for him to learn letters.
Please pray for Taylor and his continued success in beating this disease. Pray that Thursday's CT scan is clear. He is still complaining of his butt hurting, so maybe we can get an answer to that as well. Pray that all his scans in NYC are clear as well. Pray for all our cancer friends too.
February 9, 2004 Day +313 Day #11 off treatment
Faith is not something to grasp, it is a state to grow into.
Welcome back to the world of the Watts family. We are all doing good. Taylor is still snotty and coughing. He is still eating great and seems to be feeling fine, so I am still not really worried about it. I will probably have the Dr. check him out Thursday since we will be there anyway. As for Logan, he too now has a snotty nose. He is also still eating and smiling at us, so I assume he is okay too. He has an appointment on Friday, so unless he is really acting like he feels bad we will wait until then.
We started back on our potty training today. Just in time for the February 28th departure for NYC. One day we will get this done!! So far so good. We hung a calendar in the bathroom that we put stickers on when he goes and we also wrote important things on there like his Dr. appointments and days that we know Guh or Papa are coming over. Maybe we can spark enough interest in this to get it done relatively quickly.
Last night Jim and I played Upwards. It is still in the living room floor, so Taylor has played with it. He has enjoyed putting the alphabet on the board as well as our names. Maybe he will learn to recognize his letters too.
There is not much to tell you all today. We are just hanging out at home today. Please pray that Taylor is able to remain in remission. Pray that both boys colds goes away soon. Pray for Morgan and her family as they start another round of 3F8 today in NYC. Pray for Andrew and Trey who have relapsed. www.caringbridge.org/ny/andrew www.caringbridge.org/va/trey Pray for all the families fighting this monster called cancer and for the families that lost a loved one to this or other diseases. Pray for our little friend from children's that had a liver transplant as a baby and has just learned she has lymphoma. She has just begun chemo. Pray that she is able to handle the chemo with a transplanted liver and it doesn't hinder any of her anti-rejection meds.
February 8, 2004 Day +312 Day #10 off treatment
Last night Gam-maw and Papa came over to stay with Logan and Taylor and Jim and I went out. Our first stop was at the ballpark. We thought it was open until 4, but it was only open until 1, so we will go back next week. We did talk to someone thought and Taylor will get to play baseball this year. We are so excited. Jim played ball for the school and for summer league, so we have missed being at the ballpark all the time. Taylor is pretty excited too. He also needs to learn to be around kids again. I am afraid he will be shy and not play, but maybe not. We went to eat and ran into Mary, Andy and the boys. We went to Target and got him a bat and a ball. Since it is way to cold to go out and play we rolled the ball and learned about catching grounders. Fun, huh? He was loving it. I can't wait to see him in a little tiny uniform, how cute! They will play on Saturdays and practice once a week.
Taylor is a little more snotty now and I gave him Benadryl right before we left. He ended up falling asleep, but he had to do it in Gam maw's lap which would be fine except she also had to feed Logan. Welcome to my world:) He woke up grumpy as all get out and refusing to do anything but be carried by Gam maw. We came home and he sparked up a minute to show Papa his new hiding spots for hide and seek. He would start whining before we even found him. He didn't want to eat either. He decided to take a bath and he felt much better when he got out. He ate all his nuggets and drank several glasses of tea. He read a lot of books and that is when he finally wanted to check out his new baseball gear. He was still going strong at 10:00 when I gave him another dose of Benadryl. I guess the sleepiness just made him grumpy and made him feel sicker. Hopefully a full nights sleep will help him feel better by tomorrow. I hope he gets no worse. His little nose is raw from all the blowing and rubbing. Maybe the nebs will loosen it all up and the Benadryl will dry it all up. I hope anyway. As I was getting him ready to take the Benadryl, he started to get upset and was making an "O" shape with his fingers telling me he wanted his O mey-mey (o medicine). I had no idea what he wanted. He wanted me to pick him to look in the basket in the kitchen where we keep all his meds. He was frantically searching it and getting more and more upset by the minute. I finally figured out he was looking for the Accutane. He wanted to swallow a pill rather than take the liquid. After all the trouble we went through to get him to swallow a pill, now that is his method of choice. Go figure!! When I gave him his dose tonight he asked if I bought him "swallow mey mey" while I was out. I didn't and I felt bad to make him take the stuff, so I let him give me a dose. Yes, it was nasty, but it worked. I don't think it will work for long, so tomorrow I am on a mission for kids cold swallow mey mey.
We did find some chewable Benadryl that I thought he may swallow. I had to cut it in half because it was too much for him and he didn't like swallowing it, so he chewed it and it was as bad as the liquid. Oh well, I tried.
Taylor is going to have a nice bruise on his cheek. Last night he was walking around with night night over his head. I told him half a dozen times to take it off before he hurt himself. He had already tripped a bunch. He finally ran smack into the door frame and he hit is hard. He fell in the floor screaming and it is was already red and puffy. Typical boy! That was around 11:00 and he asked me to put him in his bed. He finally gave in. He picked Thomas the Train to watch and went right to bed. I like when he picks Thomas. For some reason that DVD will restart itself over and over so if he wakes up it is always on and he will watch it and go back to sleep. I wish Buzz Light-year, Lilo and Stitch, Charlotte's Web or Lady and the Tramp did. Those are usually our bed time movies of choice.
We went to Guh's for a Valentine lunch today. He had a lot of fun playing with Drew and Blake. Blake was a little less playful than usual due to his broken collar bone. Taylor rode his 4 wheeler for a few minutes, but it was too cold outside. He ate a fair amount of green beans and cheese. I don't question him, I just feed him. He told me later that Drew was a big, big, guy. I guess and 11 year old is big when your 3. Logan did fair today as well. He was just as happy as could be until we all set down to eat and he decided he needed to eat too. We stole Guh's mobile. It has lights and music plus a nifty little remote to turn it on with rather than continuing to wind it up. Logan just talks to it. Both boys matched in there blue jeans and Valentine's shirts.
Taylor and I went to the grocery store tonight. He bought Blue's Clues snacks and was eating them in the car. I usually show him where the notch is to open it and he opens it himself. Since I was driving and it was dark I told him he would have to figure out how to open it himself. He was saying "hey hole" while he looked, but I thought he was saying "A hole". I about died! Thank goodness I finally figured out what he was saying before I got on to him.
February 7, 2004 Day +311 Day #9 off treatment
Well Hello there. How are you all on this COLD Saturday. We are all good. Taylor went to Guh's last night. I called to see if he ate dinner because he did not eat much lunch. He had eaten all his chicken nuggets from Don Don's and several glasses of tea. He was having a blast. He didn't sleep well though. He didn't feel real well and I think he was a bit scared when he woke up at 3:00. It has been well over a year since he has spent the night there. He did finally go back to sleep around 6:00!! He is eating well and playing great, but he is very snotty and still coughing. He is still taking his meds and nebs, so hopefully it will clear up soon. As for the rest of us we stayed home and did nothing. I had to get some dark Karo syrup for Logan's bottles. It was that or apple juice. It would be my luck that he would love it and quite drinking his milk, so we opted for the karo syrup. I thought that he would never drink it, but he lapped it right up. Hopefully it will help.
Guh brought Taylor home around 12:00 or so and he and Ca Ca are now playing hide and seek. He is being so loud, but that is okay, he is having fun. Jim hid in the hall closet and it took about 10 minutes for us to find him. Taylor screamed so loud when he jumped out then just fell out laughing. Now Jim is hiding again and Taylor just looked in the stove for him. How funny. We filled out his Valentine's Day cards and got them ready to hand out. We just made them to our family from Taylor and Logan. He still got to have the fun of doing it even though he didn't get to take them to school. We were going to take them to clinic, but by the time he did them for the family there was only 2 left, so he just kept those himself.
Again, nothing big here. We will update again tomorrow. Have a nice weekend and stay warm. Continue to pray that all is well with scans and it continues to be so forever..
February 6, 2004 Day +310 Day #8 off treatment
Yippee, it's Friday. It is human nature, I know, to want what you don't have or can't have. When I was working it was part of my daily routine to hit the snooze button then try to come up with a reason to call into work. I never did, but I had to at least try to come up with a good reason. Then at lunch as I was fighting lunch hour traffic on Highway 31, I would wish that I was a stay at home mom who was in no hurry and was just killing time to pass the day away and didn't need to go back to work. I knew that I would never be a stay at home mom, couldn't afford to be one. Then boom, one day I was staying at home because I had too. Guess what, Now when I am on 31 I am thinking back to when I could go back to work from a rushed trip to Wal-mart on lunch. I hear the alarm in the mornings and I am glad I do not have to get up, but once I am up, I often wish I could drop the kids off at day care and go to work. I guess I get bored, especially now that we are stuck in the house. When it gets warmer and we can get it out it wont be so bad. I know when the time comes that I can go back I will want to stay home, again it is that wanting what you don't have. Anyway, long story short, that is why I am so excited when Friday rolls around. All you working folks are finally free for me to talk to on the phone or go somewhere with.
Figures that the weather finally got yucky as we were going to bed. Taylor never napped yesterday, so he was out like a light and slept through the huge claps of thunder and torrential rains. Can't say so much for Logan. We have a sky light in our room and it is so loud when it rains and it was just too much for him. We tried for 2 hours to get him to sleep. We put him in his bouncy chair on the end of our bed. It vibrates and I felt like we had just dropped a quarter into a sleazy hotel bed:) That didn't help him any, so we moved him to his room, but he is mad as soon as his music stops playing. Finally, I fed him again and he fell asleep. At 1:00 I put him in his bassinet asleep! Guess what, at 2:00 he was awake. He went right back to sleep and slept until 6:45. As for Taylor, I assume he slept all night, it was so loud I couldn't have heard him if he did cry. He did ask for his cup at about 6:00, but he laid right back down and slept until 9:15. I did too!! After Logan was fed at 7:00, he had no desire to be back in his bed, so I put him in his swing and he went back to sleep. He usually will not go back to sleep in the mornings, so maybe that is our new place to go after our breakfast. I have another call in to the pediatrician's office. Logan is now constipated from all the rice. I do not know if he will tell us to alternate him with regular Enfamil and the Enfamil with added rice or change him all together. We shall see.
Taylor did great with his breathing treatments. It is so funny to think back to the first time we did one. He used his nebulizer before he had cancer. He has used it since he was about 9 months old. It was pure heck!! It took 10 hands. You had to hold every inch of him down and hold the mask to his head. I would see the older kids that used them just sitting there holding it themselves and I would think, Yeah right, Taylor will never do that. Well, he didn't hold it, but he just sat there and breathed the Albuturol like it was no big deal. He had 2 yesterday and again today. He is still coughing, but it is much more productive, he is getting something up and his nose is running. They always tell us not to give him any meds as they do not help a cold, but I gave him Robitussen last night anyway. I am not sure it is the nebs or the robitussen that is helping, but we will keep doing both. He is in a great mood and playing fine, he is just a little snotty. He doesn't cough as much once he gets up and moving. Boy is he moving. He is a wild man today.
I will take him to Guh's this afternoon. You know, three year olds are bad. I told him he couldn't go to Guh's if he didn't follow directions. His answer, I don't want to go. URGH!!! So much for that threat.
Well, again there wasn't much to report and as usual we like it that way. Hope you all have a great weekend. Please pray that Taylor's CT next week is clear of any cancer. Pray that Logan's visit is good and all is well with him. Thank you for all your prayers and support.
February 5, 2004 Day +309 Day #7 off treatment
Well, we are staying put today. Taylor went to bed last night around 10:30 and was feeling fine and had just polished off almost and entire box of frozen chicken nuggets. (they weren't frozen when he ate them) He woke up at 2:00 and was crying, but would not say why. I asked him a million questions and got nothing so I told him I was going to bed if he didn't answer me and he got quiet then and went to sleep. An hour later we did it again. This time he was coughing a ferocious, croopy cough. He went back to sleep and slept until 6:00 when we just put him in our bed. He slept until 10:00. He never sleeps that late. He was sleeping with his mouth wide open, so I suppose his nose is stopped up. He woke up in a great mood and doesn't seem to feel bad, he just sounds awful. We decided we would just stay at home and not risk catching anything or worsening what he already has. The weather is supposed to be nasty anyway, so Logan probably didn't need to get out either. Oh well, another Thursday.
Logan has been a pill. Figures the day I could have taken him to Nana and decide not to because of weather. Hey, it isn't raining yet. He has had 4 ounces every 2 hours since 6:00. I made him 6 and it is like he has an ounce radar in him, he stops dead at 4 every time. He is finally asleep and I have fed Taylor lunch and now I am ready for some.
If Taylor is feeling better tomorrow he will spend the night with Guh. I hope he does, I want to do some cleaning without his help. He likes to bring you things and put things away. I am all for him helping it is just that he puts it where he wants it.
Not to much to report here. I did give Taylor a neb treatment just to be on the safe side and maybe it will help loosen some of the gunk in him. He just saw the Dr and his lungs were clear, so I am not worried. It is just a cold. Finally, a normal problem.
Pray that his cold doesn't get worse and he feels better soon. Pray that he is able to be NED forever. Pray that he, Papa, and Ca Ca have a safe and uneventful trip to NYC at the end of the month and that his scans are 100% clear.
Don't forget to buy your car tag. At least check out the website listed below. There is info on having someone else get it for you to save you the hassle and well as info on just donating money and every time we reach $50 we will add it to the total for the tags and that will be like buying one more tag. A link is below for that too.
February 4, 2004 Day +308 Day #6 off treatment
Happy hump day. The week is only half over and we have already had a busy week. Today we slept until about 8:30 and both boys woke up in a good mood. Taylor only wants Blue's Clues fruit snacks and Ritz crackers to eat, but at least he ate. He is not a big breakfast person. He will want oatmeal or something later, I am sure. Just as I wrote that he came and asked for white pudding. He poured his own tea. He is so independent that it is scary. I am glad he is so independent, but at times it is just flat annoying. Like this morning at 4AM when he wanted tea and I couldn't just pour it, he had to do it. If you don't let him you have a war on your hands and you have to pick your battles. That is not one I want at 4AM.
Taylor seems to feel fine and I feel better having had him checked out. His eyes are still red, but don't seem to be as red. He is still saying that his head hurts when he puts his hat on. I guess it is all just Accutane mixed with a 3 year old this is what you get. Hopefully all that Accutane will be out of his system soon.
Logan had another good night. He ate at 8:00 and again at 1:00 and then at 5:00. That would not have been good for Taylor, but for Logan it is. Logan turned 7 weeks yesterday and he is still holding on to that umbilical stump. I guess he will show it during show and tell the first day of Kindergarten.
Tomorrow Logan is going to go stay with my Nana. She doesn't have all her kids on Thursday, so sometimes when I need a break I can leave him with her and tomorrow is that day. Taylor and I are going to go to the Galleria sine it is supposed to rain and maybe meet daddy for lunch. I think he misses our outings that we used to take before Logan was born. He will ask from time to time if we are going somewhere. I guess we need to have fun tomorrow since Saturday is going to be soooo cold we will definitely not go anywhere.
Continue to pray for Taylor and us. Pray he can be NED forever. Pray for all our other NB families as well as other cancer families. Pray for My 7 year old cousin, Blake, who broke his collar bone over the weekend.
Don't forget to buy your car tag. At least check out the website listed below. There is info on having someone else get it for you to save you the hassle and well as info on just donating money and every time we reach $50 we will add it to the total for the tags and that will be like buying one more tag. A link is below for that too.
February 3, 2004 Day +307 Day #5 off treatment
Sorry this is so late, but it has been a long day. Taylor had a blast at Papa's house last night. He was so tired after his busy day of playing that he fell asleep at 9:00. He woke up at midnight and was again complaining of pain in his butt. He was just scratching, so I thought maybe his pull-up was just itching him. I finally got him calm and got back in bed. Not 10 minutes later we were back at it. This time I changed his pull-up and looked at his rear to see if it was red or anything. I put some diaper ointment on it even though I didn't see anything. While doing that I came across a knot in his butt. I hate to find that stuff in the middle of the night and not be able to do anything but let your imagination run crazy all night. After showing it to Jim and him telling us it hurt, we brought him back to our bed. He laid there a few minutes then wanted back in his bed. I of course worried about it, but did eventually fall asleep. He woke up again at 4:00 complaining of the same thing. This time he wanted his light on and to sit up in bed and eat chicken nuggets. He did and called me back in there at about 5:00 when he was done. He got back in our bed and immediately was asleep. He slept until Logan got up to eat and Jim moved him back to his bed. He slept until we woke him up around 9:00 this morning. I called clinic at 8:00 and we decided to bring him in and have it looked at. Thank goodness it was Dr. Berkow's first day back and we got to see our doctor. All the doctors are great, but when you have a concern it is always more comforting to see the doctor that has been following you the whole time. He looked him over and checked out his red eyes, the bump I thought I found on his head and his butt and it was all fine. Taylor will hate me for this visit for years to come since he had to have a finger go up the outgoing hole, but it was necessary. I feel a lot better having had someone look at all my areas of concern, but I will still feel better after next weeks CT scan. His urine was normal just last week, so we figured we were not looking at tumor, but we didn't know. As for his red eyes, Dr. Berkow feels that it is indeed the accutane and that it has just really dried his eyes out and he will need some time to get over that. Two weeks in between cycles was not enough. We were supposed to see the doctor after the CT, since we saw him today we will just get results next week and we will go back on the 17th and get labs and another check up.
We talked to our social worker and let her know we are ready to start planning his wish trip. We are hoping to go back to Disney World in September. Boy are we ready!!! He has been practicing because he has to physically say "I want to go to Disney World".
Guh and Papa kept Logan who was a good boy. He is sleeping now. He did really good yesterday. He ate 6 ounces all day and slept for 6 hours. He had just eaten 2 ounces when I found out I was going to clinic and I put him down without giving him more and he was fine. Thank goodness!! He paid me back today for laughing at him. He tt'ed ALL over me and my bed at about 6:00 this morning. I had to change the sheets and I was not happy about it.
We did an interview with Andrea Lindenberg from Fox 6 news. It will air sometime next week. Keep checking the page and I will post a time as soon as she lets us know. Don't forget to buy that tag!! If you do not want to go yourself you can go to the website listed below and fill out a power of attorney and it will be done for you. Simple as pie!!!
Please continue to pray for us all and my paranoia!! Pray that he can remain NED forever. Pray for all our other friends fighting this disease.
February 2, 2004 Day +306 Day #4 off treatment
Good morning to you all. I needed the time away that I got this weekend. I feel much better and ready to start a new week of baby watching. Logan did fairly well last night. He ate 5 to 6 ounces at a time rather than 4 and he went about 6 hours then he got up every 3 hours. We are making progress. We are putting the Mylacon in his milk and it seems to be helping with his gas, so maybe things will quiet down some. He got payback this morning for all the heartache he causes me, but I ad to bathe him again, so I guess that was my payback for laughing. He tt'ed while I was changing his diaper but rather than getting me with it he got himself in the face and in the ear. Yuck!! He was not so happy about it!!
Taylor went with Papa for the day. He woke up at about 9:00 and was in a great mood. He had a great night. He woke up about 4:00 or so and was looking for his tea cup. I went to help him and he was walking around his room half asleep. He wanted in our bed, so I let him. He went right back to sleep, I knew if I forced him back in his bed I would make 50 trips trying to calm him down because he was mad at me. His legs look much better today. He only has a few red spots left. I put lotion on him this morning and he didn't complain. His face is already looking a lot better though it is still very dry. His arms are very rough and scaly feeling, but he doesn't complain if I lotion them up. He weighed last night, well, he weighs every time he goes in the bathroom. He is up to 28.5. He has eaten good this weekend, so hopefully we will get back to 30 and beyond.... We read the Accutane insert, again. You learn something new every time you read it. It says it not only cause severe bone pain, but also severe muscle pain, so that could explain a lot of his nightly episodes lately. We are now 4 days off of Accutane, so maybe he will lose those pains very soon.
I was watching PBS with Taylor this morning and they list birthdays everyday. I wasn't paying any attention to it at first, but for some reason I started reading it and guess what??? PBS, the children's learning channel misspelled February. They left out the first "R". Go figure!! I haven't looked again to see if they have fixed it or not, but I got a good laugh at it. Maybe their technical person is sleep deprived too.
Taylor isn't back yet, so I will update you on his day tomorrow. I am sure he is having a blast. Logan was an angel today, thank goodness. I have no idea if he just had a good day or if the new formula and gas drops in the milk is helping, but I will take it either way. I didn't get to sleep late this morning, but I got a good nap once Taylor left and Logan dozed off. Things are all picked up and I could do some laundry, but why push it?
Pray that Taylor is only experiencing Accutane pains and that all my worries can be explained away too. Thank God that both boys are healthy and pray it stays that way!!!
February 1, 2004 Day +305 Day #3 off treatment
This morning Taylor and I went to Wal-mart and he picked out some Blue's Clues Valentine's Day cards. I guess we will bring them to clinic the 12th and hand them out. He has no one to give them to, but I hate for him to miss out on a simple childhood memory. Guh came over to visit and that let me slip out to go to Johnny Rockets and to see Calendar Girls with Gam-maw and her sorority. It was very funny. Don't ya'll think the sorority should make a calendar:) We stopped in at Old Navy and Bed, Bath and Beyond too. Taylor and Logan were good boys for Ca Ca for the 2nd day in a row. Let's keep it up for mommy tomorrow!!
Last night was rough. Taylor went to bed yelling about the lotion burning the rash all over him. He woke up twice in severe pain in his legs. It took a long time to quiet him both times. As I was rubbing his head to calm him, I felt a knot on his head above his left ear. I freaked out and didn't sleep the rest of the night. I immediately thought of his eyes being red and that it could be uptake in his skull area. He has complained several times of his left ear hurting and I saw no drainage to indicate an ear infection, but he had just woke up both times so I assumed he had just laid funny and it was sore. I did a lot of praying last night and I really do feel better today. I have felt his head a hundred times and can not find the knot. I pray it was nothing, a vein or something. I just know that I am on pins and needles and it is still a month until scans and only 3 days off treatment. Yikes!! He has played great all day and ate and drank well. He is still telling us his butt hurts, but he is not constipated. He grunts and groans like he is, but when he goes it is mooch, so I don't know. If you ask where it hurts he will point to his butt cheek and then the next time his butt crack, so who knows what that is all about. He seems to be fine, so I guess it is more me than anything, but still I worry. It is so unfair that life has to be this way for us and I suppose it will always be this way even with poor Logan. Today his legs look worse than they did last night. They are bright red. It doesn't seem to bother him, but they look awful. He asked for lotion when I was bathing Logan and he put it on his legs and said it hurt. I am wondering if his legs are not because of bubble bath more than or at least on top of Accutane. He took a bath this morning in a ton of bubble bath, plus a bath fizzer that changed the color of the water and bathed with blue foam soap. That is enough to irritate any skin, but really hurt some already dry and sensitive skin.
Well, that is about the extent of excitement around the Watts house on this fine Sunday. Tomorrow is a stay at home day and hopefully all will be peaceful. We have made the new rule of each room must be picked up before going to bed. He has done great at cleaning his own room. He actually puts everything away and in the right spot.
Please pray that I am just a worry wart and that he is still and can remain in remission forever!!! Please let the nurse that called about Logan's test know what she was talking about and he really is okay on that test. Pray for all our cancer friends.
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January 31, 2004 Day +304 Day #2 off treatment
Today was a "boys day" Ca Ca got both boys while Temperance and I busted out for a girls only day. We had lunch and then went to Guh's for a food party. That is my kind of party:) There was all kinds of dips that we tasted and learned other things to make with the spices and then you got to buy it. I don't cook, I mean cinnamon is the most exciting seasoning in my spice rack, so I didn't get anything. I did learn that the hostess also makes and sales purses. That is more my speed, so I am having a purse party in March.
Gam-maw, Ghen-Ghen, and Bob came over and kept the boys and Jim and I went to the grocery store. Wow, 2 kids in diapers/pull-ups, formula, and wipes adds up!!! We also got some more of the wonderful Dr. Brown bottles, so hopefully life will get easier for Logan and his gassy tummy. He of course was good as gold for them, so they still think we are telling lies on him:) I know he can't help it, but it is just frustrating all the same. Taylor was a good boy all day.
I called the peds office AGAIN yesterday to find out about his CAH test. They keep telling me that they will call immediately when the results are in. Finally I got a call and she said his PKU was fine. I questioned it since only the CAH portion of the test was redone and she said it was all tested and I know that Dr. Petelos said only that one would be redone. I agree he is more than likely normal for this test since he is not showing any of the symptoms I was told to look for, but I am still curious as to rather or not she was reading the correct test results. I guess I will go with the answer she gave until we go to the doctor on Feb. 13. I am not really worried about it. Dr. Petelos called himself to tell me it was originally abnormal, so I think if there was a problem he would call me again. He is the Dr. that finally got the ball rolling with Taylor's illness before we got a final DX and he knows how upset I got when he called, so I am sure he would have called me had there been trouble.
Taylor has a lovely Accutane rash all over. I put the Aquaphor on his face, but I put baby lotion on his body. I was putting him to bed and the Aquaphor is so messy. Anyway, he cried and cried because it burned. He did not nap today, so he was begging me to tuck him in at 10:45. He normally will call us in there a few times or come out, but not tonight, so I am sure is zonked out. I feel like I am forgetting something not giving him some kind of medicine. He never gave us any troubles what so ever over any of his cancer related meds, but he freaked out when I tried to give him Benadryl. Hopefully all the Accutane will be out of his system soon and his skin will clear up and he will feel better.
January 30, 2004 Day +303 Day #1 off treatment
The following is information is part of an email I received from the Sims family. They have set up the phone number and website listed below to answer questions and give info about the curing childhood cancer car tags. Please check it out. Please do not wait until your tag is due to go and do this. We only have a short time to get 1000 commitments to purchase. Be sure to read the info below and you can even have Dan go get do the leg work for you. It doesn't get much easier than that. You can also read about their precious angel Janie at www.caringbridge.org/al/janiesims
Don't let the past hold you back, you're missing the good stuff.
Off treatment, words we have longed to say for 16 months now. However, now that we are saying them we are petrified. It is a very hard thing to explain. Yes, we are ready to be off treatment. That means no more medicine, no more cracked lips and dry skin. No more drugs that will do further damage to his body. However, it does mean there is nothing to blame limps, pains, bruises and the such on. Now we are on our own and anything could happen. We really do have a very strong peace with the fact he is healed and will never fight this monster again, but the reality of it is that Neuroblastoma is just plain nasty and it could come back any where at any time without warning. We pray that that never happens to him and ask that all of you join us in doing the same. We also praise God and thank all of you who have helped us along the way.
I can give you a great example of how nerve racking this time in between scans is. Last night Taylor woke up crying around 2AM. Usually if he wakes up he just wants night night or something to drink and it is over. It took me 20 minutes to calm him down and I never did figure out what was wrong. I asked if he had boo boos or bites, if he was sick, if he was thirsty, scared, cold...... No answer. Of course every thought is of something being wrong. We do not even have the luxury of assuming he had a bad dream or was just frightened by something. That is so unfair. I guess that really is all it was since after 10 minutes of patting him he allowed me to go back to bed and woke up at about 7:45 this morning happy as could be.
Now to the happier side of things. We will be normal again other than a trip to Children's once a month for blood work and a check up with Dr. Berkow and a trip every three months to NYC for a work up of scans. The time in between those check ups and scans will gradually get longer and that will gradually make every hair on my head turn gray:) You all know I will be a nervous wreck, but I know we will make it. I did forget to mention the other day that Taylor's urine markers this month were normal and that is great!! If it will just get warm so that Mr. Logan can get out and about we will be sitting pretty.
Last night we went to Papa and Gam-maw's to eat dinner. Taylor had a blast tearing up someone else's living room:) He ate good too, he just did it in spurts. We all had chicken while he wanted a corn dog or Papa's big popsicle as he called it. He ate it then had his chicken. Whatever works. He is down to 28 pounds and was 30 just last week. I know the vomiting played a part, but not 2 pounds. Oh well, we will get there. That was Logan's first visit to Gam-maw and Papa's house. He seemed to enjoy himself and all the attention he got. The dogs were all outside so he didn't get to see them and Molly doesn't know she has yet another brother. When she figures that out she will probably hate us again:) All our kids are droolers, Molly was begging for some of Taylor's cheese puffs (just another one of the things he ate) and I don't know who had more slobber on their chins her or him!
Logan went from 10:40 until 4:40 last night!! Yahoo!! Of course he has eaten every 2 hours today and been a fuss budget. I guess he gets to be grumpy at one point or another and I would rather it be during the day. He really is doing better. Taylor is happily playing in a "house" he built out of pillows.
Pray that Taylor has all clear scans this next time and every time. Pray that we hear about Logan's CAH soon and that it is okay. Pray fro Gam-maw who had surgery yesterday, we hope she is feeling better soon! Pray for all our cancer friends.
January 29, 2004 Day +302
You can only go as far as you push.
The only excitement in this house today was this morning when Taylor was frantically calling my name. I came running into the living room, Logan in hand, to find Taylor staring out the window. There must have been 10,000 birds in our yard and he was upset that they were taking our leaves ( Daddy probably wouldn't be upset). They just kept coming and you really couldn't see the grass anymore. He was so funny watching them and listening to the noise they made. They eventually they flew to the neighbors yard and he went on about his day.
Logan went from 5:30 until 12:30 without eating. If we can just get that to happen a little later in the night we would be sitting pretty. I am really getting anxious about his CAH test results. He seems to be fine, but I want to know and if it needs to be treated then lets get going on it. He is having a much better day today than yesterday. I guess we all have those days.
Taylor will have a full day on 2/12. We will go to clinic at 8:00 and get checked in and accessed. He will have a CT at 9:00. He will not be sedated since he did so well last time, but he is still NPO because of the contrast he has to drink for the scan. We will kill time eating lunch and then go to clinic at 12:00 for a port flush and check up and then go to dental clinic at 1:30. I do not even want to know what the dentist has to say. His front teeth front and bottom are brown and he has several black spots on his back teeth, so I am sure we are in for some work and I am dreading it. I am so glad he still has baby teeth and new, pretty teeth are to come. We do brush them, but chemo just killed them. Oh well, if that is the worst we got out of it, I'll take it.
There was a little confusion about the news segment for the car tags. Andrea Lindenburg will interview Dr. Reddy today, but it is on a different subject. We will meet with her on Tuesday (2/3) and film the segment on the car tags. I assume it will air that night at 5:00 on her Fox 6 Family Health report, but if I hear any different I will let you know. http://www.taylorwatts.org/cancertag.htm
Please pray for a fellow NB friend, Andrew. He had scans last week and a spot showed up in his left ear which is causing him to have Bells Palsy. He will begin more chemo soon. Pray that it clears it up and he can again be NED. Our friend Bailey, who is over 800 days post transplant just had a mass removed that was 5% cancerous. He will take a few more rounds of Accutane. Pray that that is all he needs to clear it up. Pray for Lucy the pug dog who also just had a cancerous tumor removed. Pray the vet got it all and she will recover quickly without it returning, she is too old for chemo, so we hope she is better without it. Taylor will take his last 50mg of Accutane tonight. As of tomorrow morning he is officially off treatment. Pray that he is able to remain that way forever and cancer never again invades his body. Pray that Logan gets good test results and we get them soon!! Pray that stinkin' cord stump falls off soon and he can get a real bath.
January 28, 2004 Day +301
Good friends are like stars....You don't always see them, but you know they are always there.
I decided to share that today because it is so true. There are so many people that come to this site everyday and a lot of them we do not know at all and some only via internet, but no matter where you are or how often we see you, you all keep praying and supporting us through our journey. For that we thank you!!
Today is day 300 post transplant, only 65 days and we will be a year post. Wow, the thought boggles my mind. I still remember leaving Disney World knowing that when we got home from paradise we would go to hell and back and we did, but the point is we are back. Taylor is doing so great and here we are 300 days later and we are 2 days from finishing treatment all together. WOW!!! October of 2002 I thought there was no way this day would ever come yet here it is right around the corner. Praise God and thank you to all of you out there that have helped along the way. We love you!!
Andrea Lindenburg (Fox 6) will be interviewing Dr. Reddy and Deidre Downs tomorrow at Children's about the car tags. She is going to center the story around Taylor, but we do not know yet if we will actually be interviewed or not or when it will air. We will keep you posted as we figure it all out.
I have discovered the secret to keeping both my kids happy. All you mothers of young children pay attention. Hot rollers:) I take a shower at night since Logan doesn't leave me much choice otherwise. Anyway, I didn't feel like drying my hair the other night therefore it was a big mess. My only choice was to roll it and hope for the best before going out in public. I never ever roll my hair, so when I came out of the bathroom with curlers and multi colored clips all over my head Taylor went crazy. I knew he would like it, but I had no idea we would get a smile out of Logan too. I got ready to feed him and he wouldn't eat he was just grinning away. So, if any of you ever come to my house and I open the door with my curlers it is because the kids needed entertainment.
Logan had a fair night, grumpy morning and is now sacked out. Taylor had a great night and a fair morning. He is now grumpy and slamming doors and what not. He is tired plus doped up on the monster making, mood swinging, Accutane. It says in the package it may cause depression or thoughts of hurting oneself. I think that line is meant for us parents of the kids that take it rather than the kids themselves:) I am hoping for a nap myself today. Taylor has already destroyed the semi clean house, but I am so tired today that I can not care.
Please pray that Taylor remains in remission and Logan gets clear CAH results soon!!!
January 27, 2004 Day +300
Hello, I hope everyone is doing great. We are. It has been a month and a half since scans and we have a month and a half to go before we scan again. You know what that means. Time to start to worry. As usual we have no real reason to worry, but we do, I guess we always will. Taylor's eyes are red and have been for a few weeks. Dr. Pressey thought nothing of it at clinic last time we were there, so I didn't either, but now it is starting to bother me. Last night I played armature doctor, feeling his belly. I felt ribs and that was it, but I don't guess I would know what I was feeling. Dr. Pressey always says he felt his live, but I didn't. Maybe that is why he is the doctor and not me! He is eating pretty good and playing fine. Other than things that we know are accutane related, he is fine. I am so excited that on Thursday we will finish treatment, but I kind of like that comfort zone of treatment. I feel if we are treating then things wont go haywire as fast. He is in remission now, but this disease is so nasty that things could flip flop over night.
Anyway, now that my fears are laid out there I'll move on. Taylor slept until 9:00 today but of course little Mister did not. He was up at about 6:00 and of course he had gas. He finally went to sleep around 7:30 and then we played the lets sleep about 10 minutes at a time game. Of course once Taylor was up at 9:00, Logan fell asleep until 11:30. Boys!! Last night Taylor and I made rice krispy treats in the easy bake rice krispy treat maker he got for his birthday. Let me just say, go buy the things pre made!!! It was worse than making them on the stove and that stinks. It was so messy and then once you got it made and molded it fell apart. He enjoyed it, so of course I will do it again, but it wont really hurt my feeling if he never asks to do it again. I think maybe once the ingredients that came in it are gone I will just give him the machine to play with.
Taylor is still excited to go to Christian's party tonight. Happy birthday Christian!!! Taylor got his gift out and put it by the door. I had to move it since he took the tissue paper out and decided to go through it. I am so glad that he is able to do things like this now. He was just getting to that age when he quit daycare, so he missed so many parties and stuff. He never even got to have one at school. Oh well, he will soon enough!
Well, I typed all this and just never put it on the internet, so I am sorry this is to late. Taylor had a blast at Christian's party. He ate 2 pieces of cake and we had to bring some home. He LOVES cake, wonder where he got that from?? He has had a blast with the cup he got as a favor, the smarties that were in it and a bowl. He played with it for an hour once we got home. Just as I expected he was shy, but soon got over it and dove right into the toys. I told him he had to share next time Christian came over because he let him play with his toys. He said okay, but once we were home the story changed. We shall see how well it works next time. The playroom is clean again, so maybe they can destroy it together soon. Christian got a baby 4 wheeler and Taylor is so ready for warm weather so they can go outside and ride together. Me too, how cute will that be? He has asked me a million times today if it was warm yet. He wants to go outside period. He also doesn't get to go downstairs to much as the heat does not get it very warm and we usually forget to turn the space heater on to warm it up for him. Maybe this cold will move out soon.
Keep praying that all our fears are just our imagination getting carried away. Pray that he is NED forever. Pray that Logan gets good CAH results SOON. Pray that Jim, Papa, and Taylor have a safe trip to NYC in a month and all scans are clear.
January 26, 2004 Day +299
Monday again! The weekends fly by so fast. Not much excitement around here. Taylor woke up in the middle of the night thirsty, what ya know, a normal problem. He did want his TV turned off because it was hurting his eyes, so he slept with no TV or night light last night. Jim put some drops in his eyes, so hopefully that will help. We only have until Thursday and we are done forever!!!
Logan had a better night, but not great. He was very gassy and he spit the gas drops out. I guess he got some of it because I picked him up at 5:00 and he just burped in my face. He didn't eat much during the night, he just wanted to be held and patted. He slept until about 9:30 this morning, to bad Taylor didn't. Someone recommended Dr. Brown bottles and I got one at Babies R Us this weekend and she was right, it is wonderful. It has a tube in the middle that stops air bubbles from getting to the babies mouth. I just used it and he burped and went right to sleep and has yet to spit up. I may be on a mission for more of those things.
Since there is not much going on I thought I would share a couple of the funny things Taylor did lately. As for today he is running around in his fireman rain coat, a fire hat and yellow rubber rain boots. What a site! Last night he was trying to open his fruit loops, the kind in a bag not a box. It ripped beyond repair and our cereal keeper was already keeping another brand. I found a big salad server that had a lid and was pouring it in to that to store it. He thought I was fixing him a bowl and when I got it about half full he started to wave his hands and telling me that's enough. I laughed so hard. We put the bowl in front of him and gave him a ladle to eat with and took a picture. It is so funny. The other day I was bathing him and he didn't want to get out, so he played until the water drained out. He was looking like a prune and I pointed out how wrinkled his fingers and toes were. He started to laugh and said, "me wrinkled like Papa". Sorry papa, had to share:) He has been cracking us up. He has also eaten like a caw, so I guess he is feeling better no matter what the cause of Friday's episode. Today he has picked bran muffins to eat and trust me he does not need any bran:)
He is very excited to get to go to Christian's house tomorrow. He is gonna be the big number 1!!! I can't wait to see how he acts, I am sure he will think Christian should share even though when he doesn't share with Christian. I hope he is good. He hasn't been to anyone other than grandparent's houses in over a year. Could be interesting. My guess is he will be shy if anything.
Please keep us all and all our cancer friends in your prayers.
January 25, 2004 Day +298
Hello! Happy rainy Sunday. We did indeed spend a lazy Sunday at home. Jim and Taylor did venture to the grocery store for a few very important things. Mylacon gas drops for fuss budget and chicken nuggets for Taylor of course much more was tossed in with it. Taylor looks like quite the character today. He is wearing camo pants (huntin' cub pants) and a fireman rain coat. Interesting choice, huh? You pick your battles!!
Thank you to you smart people who recommended putting Aquaphor on his face. It is doing great, he is greasy, but it doesn't hurt him and he will let me put it on him more often. I do not know why I couldn't figure that out. We have a huge jar of it sitting around from transplant and that is exactly what it was for, his pealing skin due to the chemo and what not. I still use it on his booty if it gets bad. I guess I am just sleep deprived.
Speaking of sleep deprived, last night everyone was. Logan was a bad word. He was just not a happy camper last night hence the gas drops we bought today. He is eating about 4 ounces of milk and rice every 3 to 4 hours, but at night he wants an ounce or so every hour or two. He is just lazy!! He is almost 6 weeks old so maybe soon he will get on a better routine. Taylor was on a good routine by about 8 weeks. Logan also still has that darn umbilical cord stump. We are alcoholing the crap out of it and it will not fall off. Taylor was 6 weeks to the day when his fell off, so again, maybe that too will soon happen. I guess the brotherly competition has already started:)
Taylor was complaining of his feet hurting last night and walking funny. Today he did a little, but some of that was due to the wet underwear he was wearing. (uugh!!) He seems to be okay now. I know deep down that all the vomiting and limping is Accutane related, but it is so hard not to worry when those are all the original symptoms that led us to diagnosis. As for the wet undies, I have decided to keep him in diapers or pull-ups until he is off the Accutane in 4 days (9 more doses!!) due to the fact that is does cause him to have diarrhea and I don't feel it is fair to try to make him understand the concept when he is having enough trouble as it is with the meds. So, next week we will start back hot and heavy and on February 27th it will all click and on the 28th he leaves for NYC:) Maybe not!!
Please pray that all his troubles this week are indeed from Accutane. Pray we are putting him through all this one time only and cancer will never again invade his body. Pray that Logan has a normal CAH test and never endures anything like Taylor has. Pray that we all make it through scan time and baby days. Pray for all our friends that are battling cancer.
January 24, 2004 Day +297
Good Saturday to all! We prepare today to visit the circus with Camp Sam. I hope Taylor enjoys the show, it is the greatest on earth! Just to clarify my soap box comment below. The whole point of the soap box was to point out how proper funding and research can lead to an improvement in the treatment and manageability of a disease, in my example, I used diabetes, which is life threatening if not properly managed health wise. Diabetes still has a long ways to go also, did you know: less than 12% of people with diagnosed diabetes meet the recommended goals for blood glucose, blood pressure, and cholesterol despite a great deal of research showing that controlling these conditions dramatically delays or prevents diabetes complications (From NIH News). The research that has went into diabetic research is unbelievable, and the progress that disease has made is astounding. We would like to see the same effort, research and improvement in statistics for childhood cancer. Did you know: today, despite amazing research progress, cancer still kills more children than any other disease. Each year cancer kills more children between one and twenty years of age than asthma, diabetes, cystic fibrosis and AIDS, combined (From NCCF). Through better research, these statistics can be improved. Leukemia was a deadly disease 15-20 years ago, but with research and understanding of the disease and the types of medicines, survival rates are 85-95%. Even Taylor's cancer, while highly deadly today (30% chance of survival greater than 5 years), 20 years ago, children with neuroblastoma were sent home, because survival rates were less than 3%. So, if I stepped on any toes or hurt feelings I apologize. My intent was to praise what funding and research can do and had nothing to do with diabetes. We know first hand what diabetes can do, we have several friends and family members with the disease. Diabetes can be prevented or maintained, but childhood cancer is a crapshoot with doctors using unproven methods in hopes of finding that cure. You can not buy a cure for cancer, a prime example: President Bush's sister died of childhood cancer as did a prominent Ohio Senator's (Deborah Pyrce) child, in fact she had Neuroblastoma. If a cure could be bought, we sure would have bought it. That cure is our there, and with more funding, we will find it!
The circus was great even though I am almost certain they were on a mission to give me a heart attack. Folks hanging by there toes and balancing on sticks, whoa!! Taylor loved it. He was totally loving the elephants and them holding "hands". He liked the men on stilts as well. He enjoyed his usual "tub" of popcorn and got yet another light up spinner. He was none to impressed with his toy selection once he saw a boy a few rows down with a light up sword, so he had to get that on the way out. It was a bit long and he got restless especially after the intermission. We were going to wait to leave after the elephants, but he was just so restless. He was going from chair to chair and playing with stuff in the floor, so we just went ahead and left. He kicked the man in front of us in the head about 3 times. I was so embarrassed, he didn't mean to, he was just so excited. He danced to the music and pointed at stuff, he really enjoyed it. Jim and I enjoyed it too. There was a group from China that balanced people and glass all at the same time, wow! Thanks Camp SAM, we had a blast!! We stopped on the way home and picked up Logan and Taylor's portrait. It is very pretty. We were going to take Taylor out to eat, but he was having a huge melt down and we were not taking him anywhere. We took him home and fed him and put him to bed. Guh and I went to Wal-mart then Jim and I went out for a night without kids.
We are back now and Taylor is sleepy again and grumpy, Logan has been a pill and we are ready for bed. Tomorrow will definitely be a stay at home and be lazy day. Taylor is on day 8 of 14 of his Accutane. His face looks awful. It is very red and pealing, it is also very painful for him. Any lotion I use burns and he doesn't help it by being so drooly and licking at the lotion. His lips are very chapped and even though he carries a tube of chap stick (lit stick as he calls it) all over the place it is still awful, but I am sure it because he licks that off as soon as it goes on.
Please pray that Taylor is able to stay in remission forever. Pray that Logan has a normal CAH test and he never endures what Taylor has. Pray that we keep our sanity with Logan, Taylor was such an easy baby that I am not sure what to do with him. Pray that we make it through this last round of Accutane and that it is doing its job.
January 23, 2004 Day +296
You have cancer they've told you
Eyes fill with tears
A day to remember
Can't control the fear
You cry for the first day
But, then you must pledge
To determine the meaning
New Beginning? or End?
Choose New Beginning!
Life's "second chance"
Muster your courage
With no backward glance
God, family, vacation ~
Your new lease on life
Forgetting the everyday
Struggles and strife
Cut, burn, or poison?
Must you pursue treatment?
Not glamorous choices
But, life's bittersweet-ness
A vow of survival
A mission plan set
Surgery, radiation, or chemo?
How bad can it get?
You give up some flesh
Take poison ~ how bold
Irradiate your skin to 100 years old
Some go bald in the process
And needles abound
It's hard to believe
That you're not losing ground
Then, there are the people
You've met on the way
Be thankful for them
Each and every day
Not due to the illness
But the lessons it brought
Trade in this journey?
I would guess not
Without this experience
How would you know
what courage you have
Or how far you could go?
To get one more chance
At the legacy you'd leave...
You couldn't imagine
What God had up His sleeve!
For cancer has taught me
To give God His due
And pass on this message
From me to you
Believe in the miracles
While working to come back
God ~ and the Angels
Will keep you on track!
Leslie Droll ~ From "When you get it"
Why is it that life happens the way it does? Why do we have to go through the things that we do? I know God never promised it would be easy or fair, but he did say he would never give you more than you can handle. However, I am beginning to wonder. My load is pretty heavy and seems to get heavier at times. I do know that God is control and that he will get us through, but it is my human nature that wont allow me to sit back and let him handle it at times. I have an overwhelming need to know the future.
Yesterday we ended up calling Logan's pediatrician to see what to do about all his spitting up. They told us to add rice cereal to the formula we have and when it is gone start on Enfamil AR which has rice in it. She also said to keep him upright for an hour after he eats. That is all great until 2AM. It seemed to help somewhat, he did still spit up, but not as much. Of course he chose last night to stay up from 1:30 until a little after 3:00. Finally he went to sleep only to want to eat again at 5:00. So, the cycle began.... He is now asleep where he has been since 9:30 except for the 12:00 feeding. That is a good thing because Taylor is now providing the excitement. Which is just an example of God lifting the load. He woke up this morning and got in our bed. He woke up at about 8:00 and I turned the TV on for him and went back to sleep until about 9:30. We got up and he asked to be held and was whiney when I told him I had to potty first, but that is par for the course. I brought him to the living room and started to get his Accutane ready. When I told him to put it in his mouth he started to gag. He did it every time I put it in and put the cup to his mouth. I just thought he was still half asleep and didn't want to cooperate. Well, he ended up puking on me, but again I just thought it was due to his non-cooperation. He was very whiney after that and demanded to be held. I was holding him and asking him if he was sick and he would half answer, so I still didn't put to much thought into it. I guess I should have because he ended up puking again all over both of us the carpet and the couch. Just FYI, Accutane does stain carpet. He cried and cried and we cleaned everything and everybody up and then he wanted to play cars. I played "crash and rescue" for a while and he seemed to be fine. Logan woke up soon after that and I had to feed him. Taylor was also in my lap and he started to say he needed to throw up. I really thought it was him being jealous so I told him to get in the floor so he didn't puke on the chair. Well, he jumped up and took off and I realized he was serious. He made it to the kitchen floor and there it was. We did the clean up bit again and this was my 3rd time as he peed all over the place when I was checking out his tt since he said it hurt. (it has been quite a morning) I fixed him a pallet and we laid down and soon he was at it again. He has no food or drink in him and so he is dry heaving and that up sets me so bad to see him do that. I called clinic and they did not want me to bring him and bring a "bug" in the clinic. I understand that, but when I end up in the ER with God knows what kind of "bug" I am going to call that Dr. and that nurse and they can come sit with me. He is now asleep and hopefully will sleep off anything he has. You will all be proud to know that he only asked for a passy one time in the midst of all that has happened today. My big boy!!
Guh came to sit with us. Logan woke up and is eating. He is pulling Guh's chain, he has been nursing that 4 ounces for an hour!! Taylor just woke up and in the 5 minutes he has been up he has been more active than he was prior to his nap. got in touch with the NYC doctors and they said that Accutane can cause vomiting and that we may need to adjust his dose. As you may recall, his last cycle we did not give the extra 10mg due to the fact that he was vomiting and having severe bone pain and light sensitivity. We are now assuming that that must be the case especially as he is now flying around the house on his fire truck. I am going to not give the extra 10mg tonight and hopefully that will help and we will still make it to the circus in the morning.
Please pray that this is a case of Craputane issues and nothing more. Pray that Taylor can remain NED forever and we can learn to let things go by without so much commotion. Pray that Logan's CAH is normal and he never endures all Taylor has. Pray that this new formula will provide us all with much needed sleep and less gas and spit up for him.
January 22, 2004 Day +295
Poor Baby! He woke up in the middle of the night screaming. I went in there prepared to explain that he could not have a passy. He wouldn't talk to me or tell me what was wrong. I didn't know what he wanted. At first I thought he might still be asleep and just had a bad dream, but then I realized he was grabbing his leg. He is having more bone pain. This time it is his left leg where as last round it was his right knee. I hate to see him hurt so bad, it is so unfair. He is fine this morning. I do not know if he is too busy to think about it hurting during the day or if it doesn't hurt, but he never complains until night. He never tried to get in our bed he just laid back down and let me rub it a minute then fell asleep. He will not take Tylenol for it, I guess he remembers all the trauma from taking Tylenol as a premed at the hospital.
Logan must have just had a bad day because he was fine last night and so far today. He slept from 10 until 2 and then got up again at 6. Much better than his routine the night before. I guess even babies are entitled to a bad day every now and then. Taylor cracked me up yesterday. I had Logan in my lap talking to him. I was telling him in my best baby voice that I was going to send him to the moon if he didn't straighten up. Taylor perked up and went to the window and said "the moon way up high? No more baby." You could just see the wheels turning in that head of his trying to figure out a way to get Logan to the moon and out of this house. Oh, big brothers!!
Last night Gam maw came and kept Logan and we took Taylor to eat and to the grocery store. He was a wild Comanche in the store, you know the kid you hate to see coming the opposite way down the aisle. He had fun on a mommy and daddy only outing. I think he needs those from time to time.
We got an invitation to an afternoon of bowling with Camp SAM. We are so excited to go. I have been wanting to take Taylor bowling for a while, but wasn't sure if he was old enough and now we shall find out. Needless to say we will not be winning the grand prize that is for the family with the highest score. I am the WORST bowler on the planet.
Please continue to pray for us all, our health and our sanity. Pray for all our friends that are battling this monster with us. Pray that Taylor remains NED forever and Logan just had a false positive on his CAH test.
January 21, 2004 Day +294
I am starting today's journal on my soap box. Do you know how much money is raised for diabetes? Well, me either, but I do know that it is manageable. Do you know why? Because so many people donate and contribute time and money to its research including the federal government through NIH. That research is what has lead to the knowledge of the disease and how to treat it and manage it so well. If people would give that kind of money to childhood cancer maybe we would see more research on that and more treatable diseases. Research could increase the survival rates of the deadly beast that is killing so many children, mine included. Taylor was given a 30% chance of beating his cancer and then only to have a 70% chance of it returning. Those are not odds that I like. We can make a difference. Although you may feel like you can't because you are not a doctor, nurse, or politician. You most certainly can help by donating money to Children's Hospital, The National Childhood Cancer Foundation, and many others. The easiest thing you can do is.... Buy the Curing Childhood Cancer car tag. I know you are tired of hearing about it, so if you all go buy it then I will shut up about it:) You all have to buy a tag anyway so why not make your hard earned dollars go towards a good, no, GREAT cause!!! We only have until the end of July to get 1000 tags pre purchased. As of the end of November we only have 102. That is squat!!! It is so easy to go in and buy your tag and ask to also fill out the commitment to purchase form. You don't even have to fill it out the clerk will do it, all you do is sign the dotted line and giver her $50. Out of that $50 $41.25 is going to Children's Hospital. That is a lot and could go so far to help our children. Please go out and buy one when you get your tag. If you have already bought your tag then make one more special trip to the tag office and fill out the form. I know that place stinks and no one likes to go and stand in line. But guess what? I don't like seeing my child suffer or miss out on simple childhood things because he is sick. So there, we are even, we will all have done something we didn't want to do. This may sound rude and ugly to some of you, but the word cancer is rude and ugly to me and unfortunately too many other families. Only research can make it better and only money can get that research going. so, again I beg you to buy the tag. Hey, it is cute too!!
I think we did it. Taylor did not ask for his "mine" at all yesterday not even at nap time. He did about oops at one point. I was holding Logan and Taylor was sitting next to me. I had Logan's passy in my lap (he doesn't like it) and Taylor was drinking tea. He put the tea down in my lap when he was done and out of habit picked up the passy and went to put it in his mouth . He caught himself though and said "oh" and put it back down. We just laughed about it rather than make a big deal about him not having one. He didn't seem to mind. Bed time came and we were worried it would be heck. He was already mad because he was playing "huntin cub" and didn't want to go to bed. I asked him if he wanted to put his sleeping bag in his bed and that could be his camper and he loved that idea. He got it all ready and climbed in, but wanted the lights left on. We told him it was dark at the hunting club and he fell for it. He went right to sleep in his "camper" and slept all night. He never once asked for his passy or a drink!!! Yahoo!!! Hopefully that was the end of it and it will never be mentioned again. If it is then it was way easier than we thought.
Taylor also had a little fall last night. He was standing on a stool, the same stool that Jim and I both had told him not to stand on. He fell off of it and bumped his head. He had a nice knot on the back of his head. It went back down, but he said it hurt when I touched it this morning. We had good platelets and he seems fine, so I am not to worried.
Logan is dealing me fits today. He again slept from 9 until 2 last night and then was up every 2 hours. Today he has been awake and crying since about 6:30. I do not know what to do for him. Half his problem is gas due to the fact that he will not burp and he wont eat unless the bottle is just dumping in the milk. He pukes up what he eats and then has to eat again. I finally got him to sleep and Taylor woke him up and I told him to get away from him (he likes to push toys under his seat) and so now he is off crying and pouting. I think this would be easier if Taylor could go to daycare and leave me to deal with just Logan during the day. Oh well, that can't happen, so we will just make the best of it. It's gonna get better, someday:)
January 20, 2004 Day +293
Oh the horror!! I know that is how I feel and I am sure Taylor does too. Once he realized he wasn't going to find the one good passy, he never mentioned it again. Bed time rolled around and he got right in bed and picked a movie. He stayed there about 20 minutes then he was in our bed. He drifted right off to sleep with no mention of it. Jim moved him back to his bed and all was fine until about 5:00. He woke up screaming for his mine. I told him it was gone and he asked for tea. That might have done the trick had we had any made. I offered him milk or water and he said no. I got back in bed only to hear him calling out for "mook" I brought him a cup of milk and watched through the crack in the door as he took a sip then said "juck" and threw the cup. He continued to cry until Jim brought him to our bed and he eventually fell asleep. I guess he just needs to learn a new method for soothing himself. If he can just get over those middle of the night "cravings" we will be okay. He has been sucking on night night which is just gross. I hope that does not become the new soothing method, I would hate to take that away too.
He did very well on the potty. He had one accident yesterday. He did poop in the diaper he wore when they left, but as long as I wasn't cleaning undies I can deal with it. He is in undies again today and so far so good.
We are on day number 5 of 14 days on Accutane. This is the last round and he has it all figured out. Figures!! He punches the pills out of the pack himself and pops them in his mouth. He was biting them before swallowing it and it says in the package that it will damage the esophagus if punctured, do we were doing all we could to stop him. Finally I told him that the picture of the pregnant lady with the symbol across her belly stating not to take it was really a sign that said not to bite it and he believed me and hasn't bitten it since. He does, however, swallow before we get the drink in his mouth . Oh well!!
Logan stayed awake all day yesterday. He had about an hour nap if you total up all the little 5 and 10 minute naps he took during the day. I am not sure why, but it helped him sleep 6 hours last night!!! He has been fine today. None of that feed me every hour stuff. He is spoiled bad and wants to be in the bouncy seat. I have tried him all over the house and he is crying unless he is in that chair. I hate to leave him in the same spot so much, but if that makes him happy, it makes me happy. I can't believe he is already 1 month old. I hate to see them grow up so fast, but I am looking forward to him being big enough to sit in the floor and attempt to play with Taylor. Did I mention that I am ready for him to sleep through the night too:)
I guess I better go. I hear Logan getting fussy and Taylor saying to calm down. He did turn his music back on because I hear it. Please pray that Taylor maintains his current health and Logan too.
January 19, 2004 Day +292
HAPPY BIRTHDAY TAYLOR!!!
I can not believe that my baby is 3. I can not believe what all he has been through and overcome in his short life. It is amazing and sad all at the same time. That reminds me of yet another story of how much he has picked up from all his hospital time. The other night I was laying in bed reading and he was "doctoring" me. He took a yo-yo ball which is a rubber ball on a rubber string, and pretended to tie it on my arm then he tapped the bend of my arm then stuck me with a blood tube that he snagged from lab then slapped a band-aid on it. He told me I was done giving blood. Too smart!!
Wow! Last night was as rough one. Taylor lost the mine that was not cut and we looked everywhere. He had to lose the passy a night early and he was not happy to say the least. He cried himself to sleep in the living room floor. He slept until 4:30 and he woke up looking for it. I was able to give him a drink to calm him for about 10 minutes then he was up. He was in the living room looking for a passy, he put everyone in his mouth and then cried because it was broke. He wont let us throw them away either, he says "I can't". I feel so bad for him, but I am so ready for that thing to be gone. He also woke up and put on his underwear. He even complained when I put a diaper on him before I let him leave with Jim. So, hopefully he is realizing that it is better in underwear.
Jim and Taylor have gone to get our new portrait framed and Taylor, who is pouting in the backseat over his mine, is wanting to go to Wal-mart. He says he "needs a prize". I think we all know what kind of prize he "needs"...a passy!!
The boys made it back and without any prizes of any kind. Guh came over to play and guess what Taylor found...his passy. He put it down to play the harmonica and we snagged it and hid it. He has cried and all, but it has not been too bad. I know it isn't over yet!! HE found me eating a ring pop and thought I had a passy. He said "let me see dat". He laughed when I pulled it out and said "oh, it is just a lodipop".
Taylor's birthday was spent doing nothing. I wish it were not so cold so that he could have gotten out more and done something fun. Oh well, it doesn't matter. He is going to the circus this weekend so that will be a mommy, Ca Ca and Taylor only outing. Taylor needs a nap, so I guess I'll go and see if I can not get him to do that. I doubt it, but it is worth a try.
Please pray that Taylor has many, many more birthdays. Pray he is NED forever!!!
January 18, 2004 Day +291
Today was a lazy day even though, thanks to Logan, it started early. He was up every hour after about 5:00. It was pure torture! He finally went back to sleep about 10:30. It really stinks too because I would like to keep him up during the day so that he will sleep at night, but by the time I get him settled I am not about to wake him up and work on a schedule. I guess it will eventually work out. Anyway, we had breakfast and read the paper, Taylor too. I got a cute picture of him sitting in his rocking chair holding up the comics like Jim was holding up the sports.
Miss Cindy that I used to work with came over today for a visit. She brought Taylor a Wiggles bath towel and he is burning to get in the tub so he can use it. She also brought Logan some pajamas and socks. Thank you Miss Cindy and your mom!! Taylor had a blast showing off and acting the fool for her. He trapped her in his room and wasn't going to let her leave. He cried when she left. I do not think he really remembered her from day care, but he keeps telling me he does. He liked her rather he remembered her or not.
Taylor has also been in underwear all day!!! He wet his pants 2 times, but one was because he didn't exactly ring the potty and the other was he just didn't get there in time, but he did get to the bathroom. It is progress. Hopefully it will all click soon. We also cut all of his "mines" except one. Tomorrow that one is gone as well. We have been telling him that on his birthday they are gone. I said all along they were gone on his 2nd birthday, but when he got sick we let him keep them, but now it is ridiculous. Will, our 2 year old friend, that was here this weekend can talk circles around Taylor and he gave up his passy long ago. Life will be *!@? the next few days or weeks, but it has got to go. His speech teacher says that will also cut down on the drooling. For those of you who do not know Taylor personally, he is a faucet. When he was little we used to keep 2 bibs on him so that he didn't soak his clothes as fast. He still at age 3 is always sporting a soaking wet shirt.
Ghen Ghen and Gam maw came over and kept our boys so that we could run to Wal-mart. Why is it you always need something from Wal-mart. We had other places to go, but didn't feel like it by the time we got out. We are now home and winding down. Taylor is sooo sleepy, but he can not find his "mine" so he is wandering aimlessly around the house calling it and refusing to do anything else. I am going to go help him find it so we get one more good night with it and so he will come take is Accutane.
Please pray that Taylor remains in remission forever. Pray that we get good news from Logan's CAH test and soon. Pray for all our friends that are fighting this with us.
January 17, 2004 Day +290
The long awaited new photos are posted. Be sure to check them out!
Party day!! Taylor got home early this morning and he got bath and then started in on the brownies and dip that Guh made. He has eaten like a pig, bit all junk. Hey, it is calories:) Unfortunately, I have eaten right along with him. Ca Ca on the other hand was a very good boy and only ate the jell-o, such willpower!!
We got all set up and ready to go, but all our guests got stuck due to the interstate being backed up because of a bad wreck. They all made it though and we had such fun. Taylor loved the attention and the kids. He has not played with kids in so long. He had an absolute blast. He shared somewhat and loved showing how things worked and such. He and Mackenzie and Will played chase and hide and go seek. He was so tired by the time 9:00 rolled around that he was asking to go to bed. It was so good to see him be normal. I can not wait until warm weather is back so they can all go outside and run around. Our decision to only have 2 kids was cemented today after chasing the 3 of them around and cleaning up the spilt drinks, food and broken glass (long story).
After the party the kids were left with their daddies and us mommies (Kim, Amanda and Temperance) went to Golden Rule for some dinner and conversation. We had a very good time even though it was only an hour get away. I am home now and have cleaned up the kitchen and will think about the living room and the playroom tomorrow. I think we are all exhausted. Jim and I are just waiting to feed Logan and then we will hit the sack too. He always wants to be fed as soon as you dose off, so we will just not even go to bed rather than be interrupted one extra time. I would like to add to my request of kids being born potty trained that they also come sleeping through the night.
January 16, 2004 Day +289
Happy Friday. Today we went back to the Galleria to finish Logan and Taylor's portrait. First he drew Taylor's face. It required Taylor to sit still for about 15 minutes which he did good for the first 5. After he was done he and Jim went to Don Don's and I held Logan for his turn. Logan did great, still as a mouse:) We had 45 minutes to kill while we waited for him to finish it, so we went to ride the carrousel. Taylor rode 3 times and ate his nug nugs and by then it was time to go. Our picture was done and we headed home. Taylor fell asleep in the car and stayed asleep until about 5:45.
When we first got to the mall the man was gone, so we waited around. The jewelry store where my wedding ring was purchased was right upstairs, so we went up there to have my rings cleaned. Taylor was ready to go back down, but I told him to wait because I wasn't done. He said "no, me go". I told him that he couldn't go alone and that is when he got funny and the man that works there about fell over with laughter. Taylor used his Buzz Lightyear flip phone to call CaCa and tell him that I would not let him leave. He did this after whipping it out of his pocket and dialing it frantically and then crossing his leg with his hand on his hip while talking. We didn't quite catch all of the conversation, but I think he told on me big time:)
We also went to the party store and got balloons and boy was Taylor excited about the big 3 balloon. It is so big it will probably still be floating on Logan's 3rd birthday.
Today we started the 6th and final round of Accutane. Praise God!! He also finished his Bactrim, so he is off all meds other than the craputane and he only has 14 days of that. Yahoo!!!
Taylor went to sleep at Gam maw and Papa's house so that we could make the cake and all the goodies for his party. It was tricky enough with Logan, we knew we couldn't juggle both of them. We had a time of it too. We forgot to put the cake release in the pan and it tore up, so we had to bake another cake. Luckily Mickey was easy with only 3 colors and we didn't have to mix lots of colors. We also made cookies shaped like Mickey and a jell-o mold of Mickey's head for all those Atkins dieters! Even with our set back we were done by midnight.
January 15, 2004 Day +288
Hello, how is everyone? We are good. Taylor is happy that the hospital cafeteria also now sales Milo's tea. Where was that when we were on stem cell and couldn't have the cafeteria tea? He knows that the tea in the coke machine is gross, so he was pumped. Just another one of life's simple pleasures.
My doctor visit was fine. I am back down to my pre pregnant weight now if I could just get back to my pre college weight:) Yeah right!! I did nothing but get told I can now return to all normal activity and I was outta there. He says he will be sure to get me through the 3rd pregnancy just as easy, but I assured him I was done!! The spinal block is all I need to remember and I know I do not want another one that and sleepless nights:)
Today we went and had the boys picture taken and the man is going to draw a portrait from it. He is in the Galleria until Monday outside of the Raphael gallery if anyone is interested. It was an interesting journey. We left early because we were ready and because it was a gift from my Nana, so I had to go by her house to get the money. We pulled up at the mall and got out and headed in. I had dressed Logan in his clothes and put a bib on him, but was going to change Taylor inside the mall. Well, it helps to dress him if you have the outfit. I had laid it down on the dining room chair to put Logan in his car seat and left it. Good job, huh! Jim had to go get it while Taylor, Logan and I just sat in the mall. Logan slept the whole time and Taylor walked around from chair to chair and then sat and ate some cheeses crackers. Of course Logan was ready to eat and poop once Jim got back. It all turned out fine. He took the photos and he will use that to draw them and we will go back tomorrow to let him draw their faces and we will take it home tomorrow.
We are back home and I about ready to take a nap then clean up the house other than the kitchen. Tomorrow Jim and I will start making the Mickey cake and cookies for Taylor's party. I can see the mess we will make in the kitchen, so I will save it for later. Tomorrow we will just run to the mall for the picture then come back home and stay. We have no plans.
Have you seen the NYC weather? I am soooo glad that I am here where it is 50 and we think that is freezing. It is 2 degrees there today and that is up from the -3 yesterday. Guh just thought she was cold in early December:)
Please continue to pray for Taylor and all his cancer friends. Pray that we hear some news on Logan's test soon and that it is fine.
January 14, 2004 Day +287
We went to clinic 5 today for Taylor's check up. We got there at 8:00 and left at 11:00. Clinic is always so fun! We went across the hall and drew labs from his arm. We had an hour to kill so we went to get breakfast. Taylor was excited because he always wants to go to the cafeteria. He picked coco puffs and I got bacon and eggs. We also found chicken patties next to the biscuits, so you know he was excited then. He decided today to try eggs and loved them. Yet another food he loved before diagnosis and has just rediscovered. Also an easy one to fix!! We had some trouble in clinic while we were eating. There were two girls about 4 and 2 and they were taking his night night and bugging him, he wouldn't even get out of his stroller. They finally left and he got out and started eating eggs. I was holding the little pack of cereal in my lap and the youngest girl came and took it away. I took it back from her and told her that was his breakfast. She then reached over and slapped me. uugh!! The teacher in me was so not happy and the fact that her parents were nowhere to be found irritated me even more. She finally got bored because we both ignored her and she went away. Taylor ate really good. We had to catch urine in a cup again, so we spent the remainder of the hour going back and forth to the bathroom. He was dry and had not been changed since he got out of bed, do I know he needed to go, but couldn't or wouldn't.
We finally got called back and I didn't even get his shoes off before the doc was in. Dr. Berkow is off due to surgery, so we saw Dr. Pressey. He was very nice and helpful. He looked over Taylor's knee and toes that he has complained of hurting and we are in agreement that there is some manipulation going on at bed time. He said his red eyes could be sleepiness, cold, allergies, any number of things and not to worry. We are to start the next round of Accutane Friday and he calculated it up again to be sure and we will do the 90mg rather than 80mg. We were supposed to do that last round, but didn't for several different reasons. His counts were great. He has 5.95 WBC, 275,000 PLTS, 12.9 hemoglobin, and an ANC of between 1900 and 2300. All normal counts!! ANC is his absolute neutrophil count that is the number of infection fighting cells he has. You had to be 500 or greater to leave the hospital, so you can see we are doing fine. I also asked him about his immunizations. He will get further testing at his 1 year mark. Only certain shots can be traced in the blood, so we will have to look and see what he still has of those that can be seen. He will be on a "catch up" protocol. He will pick up where he left off and not necessarily get them all again. He will go to Dr. Petelos, the regular ped., to get those. They say at that point he can go back to the ped and just to his scans and check ups with the onc, but we live so close that we may just stick with Berkow for comfort sake. I like seeing someone who knows every detail of what he has been through and has the full run down of what to do for a sick cancer kid.
Taylor just finished his last speech session. He did good and has really picked up a lot from his short 3 month stint in speech. He does not qualify for anymore so he is done. He knows a ton of words and speaks a lot it is just hard to understand at times. For example, he will say sands rather than hands, his says cog instead of dog which is how dada turned into Ca Ca. He repeats as well such as his name is Tay Tay and he eats nug nugs. So, you can see he just has a few small problems that we can work out. Brandi said that is normal and will work itself out in time and when the passy is gone. He has 5 days with that left, all passys will get cut on his birthday. I know it will be tuff, but he will be rid of it. Yesterday we tried to nap without it and he tossed and turned for 2 hours. I finally gave it to him and he was asleep within 5 minutes. Sounds like life will be great fun for a while:)
Logan is doing great. He is smiling, we think. He has grinned a few times, but he is the worlds worst burper so it could be gas:) He has been having trouble breathing due to a booger since about 3 this morning. I have sucked it and sucked it with the bulb syringe and it will not come out. We finally did it until it caused him to sneeze and you would all be amazed at the size of that thing. I think it came from his brain. It was nasty. He seems much happier now! He is still eating picky at times, but I hear that is still normal at times and he will get over it. Taylor didn't do that, he was a eater from the get go. Well, after he learned how to suck, that just did not come naturally for him. Logan is also picky about nipples whereas Taylor didn't care as long as milk came out of it.
I am about to leave to head to my 4 week pp check up after having Logan. I am sure it will be nothing exciting, but if so I will be sure to pass it along tomorrow.
January 13, 2004 Day +286
Guess what? I got to do something last night that I haven't done in months and months and boy did I miss it. Sleep on my tummy. I slept so much better, the only thing that could have made it better was for it to have been uninterrupted. Oh well, that is to come and Logan has done much better today than yesterday. I guess he was just showing us he had a little 'tude like Taylor.
Speaking of Taylor he did great on the potty. He wet his pants 2 times, but it was because the potty chair was leaking and running out onto the floor and getting his undies wet. With all the cleaning and mopping I did, I could have left him in diapers:) However, last night was a different story. He wet the floor 3 times until finally I just put a diaper on him and we went to bed. This morning he woke up soaked, but it is just the cheap diapers because I cut off his drinking last night to see. He put on undies and then proceeded to wet the floor in the pantry of all places. So we mopped again! I think God really should rethink things and have babies come out potty trained. I would trade that for a few more sleepless nights (I think).
I did find out something last night that I guess we did not fully understand. Not all children that have transplants lose all their pre transplant immunizations. I assume it is a different test than he had to determine if he could come off Bactrim and Accyclovir, but he will get a test at one year post transplant to see if his immunizations stayed or if he will need to get them all again. It should would be great if he had not lost it all and didn't have to get all those again. He was up to his 18 month shots, so he had had most of them. We shall see in April. Can you believe it is almost been a year. Holy cow! Those 28 days in the hospital felt longer than these last 9 months.
Be sure to read the curser on the news page and to look at the curser on the front page, it is a picture of Taylor. Be sure to buy your curing childhood cancer car tag!!! Taylor and I both go to the doctor tomorrow. We have tons of questions for Taylor's docs. I just have my 4 week post partum check up, that should be the end of my visits.
January 12, 2004 Day +285
Hi there people. Be sure you read the words following your curser:)
I forgot to tell you all that on Friday Jim was looking at tickets to NYC and they were only 230 rather than the normal 500 dollars we pay. He emailed Dr. Modak and Derrick his assistant and they so graciously arranged our scans very much in advance so that we could buy these cheap tickets. Taylor, Ca Ca and Papa will fly to NYC on Saturday, February, 28th and stay until Wednesday, March, 3rd. Much shorter trips when you only need scans. They really hate to stay that extra day, but for whatever reason the Sunday ticket was more expensive, so you do whatcha gotta do. Taylor will have an AM bone marrow biopsy and aspiration on Monday. They do not give an exact time, but it should be fairly early. He has an MIBG injection at 2:00 on Tuesday. That only takes about 30 minutes and that includes paperwork and all, so they will have lots of free time that day and get to sleep late. Wednesday he has the MIBG scan at 2:00. They will probably go ahead and check out of the RMH and either leave the luggage in the lobby or take it with them just in case the MIBG starts late or runs long. They fly out at 8:30 and we don't want them to be late. They will have a lot of free time and the bone marrows are the only painful thing and he is generally over that quickly. He will love getting to play in the playroom and not need GM-CSF shots. We do not know what the weather will be like, but if it is warm enough for him to go to the park across from the hospital he will be in hog heaven. It should not be a bad trip. Dr. Modak also said that he was still HAMA positive which we knew since he had no pain the last week he was there in December. He said it didn't matter and I do not think we will check anymore that was just for their research purposes. He may ask for more to see how long it takes for him to lose the HAMA, but he hasn't asked yet.
I have been reminded so much of Taylor as a baby since Logan has been born. Obviously, that is to be expected, but it is rather sad. Not just sad that he is growing up so quickly and he is not a baby anymore, but because he was healthy then and we were innocent, new parents. We had no idea that cancer would invade our future at all much less our baby. We had such dreams that seemed to have vanished, but lately they seem to be creeping back in. I really do have such a positive outlook on this and that his remission will remain, but that is also a coping method. This disease is so ugly and relapse is so unpredictable. It seems as though our lives are divided into before and after diagnosis. I look at pictures and immediately say that was before or after he was sick. We think of memories or funny moments and always say it was before or after he was sick. Anyway, I don't mean to be all sappy with you, but that was just what all flooded my mind as I was feeding Logan this morning and he was grabbing at his bottle like Taylor used to do.
Speaking of Logan he is being a pill. He has done nothing but fuss all day. I have done all that I know to do and he is still whiney. At this moment he is just groaning and whining not really crying so I am trying to ignore it and hope he falls asleep. He has been just out and out yelling half the morning. I went to take a shower when he finally fell asleep and told Taylor to come and get me if he started to cry. I got out of the shower and all I heard was a big old baby cry. I aked Taylor "I thought you were going to come and get me if he cried?" and he just said "nah". Taylor is in big boy underwear. It is actually just a test, but maybe it will get in back into it and we can get him out of diapers. I had bought him pull ups, but he had no desire to use the potty and he was going through them way to fast and they are to expensive to be pooping and wetting in, so I bought him some diapers. I bought the cheap ones since I am tired of buying them and hoped to get him out of them soon. I have changed several wet diapers on him today that are so wet that he has to walk spread eagle. I put him in underwear so I can see how much tt goes in the potty. I need to know if he is urinating way to much or just those cheap diapers can't hold it. He has not had anymore to drink than normal, so I guess it is just the cheap diaper. He did good though once the underwear was on. I saw him whiz past the kitchen door and run to the potty. He made it there, but missed the potty, so I still had to change him and clean up the bathroom. Man, you just can't win for losing! He'll get it about mid February and then head to NYC and lose it all again:)
Pray that Taylor remains in remission forever. Pray that Logan's CAH test comes back normal and that he settles down today and quits all the fussing. Pray that Taylor just catches on to this potty thing and we can move on from diapers. Pray for all our friends all over the world that are battling cancer and other life threatening illnesses. Pray for those who have lost their loved ones to the disease.
January 11, 2004 Day +284
Boy the weekends fly by. I know they go fast for all of you that have to go back to work on Monday. Today Guh came over and as usual we snuck out on her. She is going to quit coming over if we do that many more times. We went to Wal-mart, you know, for the stuff I didn't get yesterday. I cleaned up today and did laundry. Finally, I tackled the play room. We have let him just run rampant down there since Logan was born and it was horrible. It is now clean, lets see ho long that lasts. Taylor cleaned his room all by himself and he put everything away in the right spot. Way to go Taylor.
Taylor was playing in the living room about 5:30 and I asked him if he wanted to watch a movie, he said no so I went on about my business. I went to the bathroom to put away the stuff we bought. I was gone all of 2 minutes and when I got back Taylor was sound asleep in the floor. He is still asleep at 8:00. I hope he out for the night. Either way we are in trouble. He will either wake up and stay up until 1:00 in the morning or stay asleep and be up at 5:00.
Not much happening here. This week is a busy and laid back. Taylor and I have a doctors appointment, but Jim is off Wednesday through Monday. We have big plans for making cakes and getting ready to Taylor's birthday party on Saturday. Can you believe he is about to be 3 years old!! We got our circus tickets yesterday. Camp SAM is taking a group of families and Taylor gets to go. He seems to be excited and he always talks about the commercial so hopefully he will enjoy it and do good. We are no where near as close to the action as we were at Disney on Ice, so he shouldn't be scared of anything. I hope he can see well enough to see what is going on and not need to be held. It will be a blast no matter what. Thanks Camp SAM!!!
January 10, 2004 Day +283
Hello! Hope you all had a good Saturday. We did. I got a whole day out. I went shopping with Guh. Jim had the boys. He had Gam-maw and Papa come over for a little while so that he could take down the rest of the Christmas lights. (Yes, we are a little behind) He also cleaned his side of the garage. This summer we just made sure my side was clean, but now that it is so cold he wanted his car inside too and so finally it is. Okay, so we just rearranged the junk so that his car would fit. One day we really will get rid of it all. Hey, we have only lived here 16 months that is not near long enough to unpack it all:) Nice try, huh!
I had fun shopping. I got Taylor some cheap clothes at the Kids R Us going out of business sale. Of course we went to Wal-mart and got everything but what we went in for. That is just par for the course. On the way home I went in Subway for some dinner and guess who I found. Chris and Temperance. They all came over and played for a while. Taylor still is not ready to share. He picks and chooses what he will share. He did, however, about stroke out when he realized that Christian left his happy meal toy. He wanted him to have it, he never tried to keep it. He wont forget either. I bet the next time they come over he gets it for him.
Mr. Logan is being silly. He wants to eat every 2 hours at night. Yuck!! Tonight he ate 4 ounces at 7pm and slept until midnight. I was so excited. It was just a fluke though, he was up again at 2 and 4 and 6. Oh well. It is much easier to deal with the second time, I guess because you know it really does get better. Taylor got mad tonight because Logan was wrapped up in Taylor's duck blanket. We had to get a new one out for Logan. He now has all the blankets that he "knows" were his in his bed. He is such a stinker.
Please pray that Taylor can remain in remission forever. Pray that Logan never faces what Taylor has and that is CAH is fine.
January 9, 2004 Day +282
Hello to you all on this cold Friday. We are nice and warm in the house with no where to go today. Thank goodness. I was a little disappointed when our Dr. visit fell on the coldest day of the year. Oh well, we made it.
Taylor has proven to be an all American child and an individual all in one week. He has found two new loves this week. One of them being every child (and adults) favorite, bubble wrap. Jim even found a website that has a bubble wrap background and you pop them with your mouse. Very addicting!! The second love is salad. He has actually always loved salad, he gets that from his Ca Ca. He ate it by the handfuls (literally) before he was diagnosed. Once he was sick and had low counts he was not allowed to have raw fruits and veggies, so that took away that food. He has recently started to eat it again and even thought that is probably not every 3 year olds favorite food it is his choice of salad dressing that makes it so unique. Prepare yourselves for this one....he likes his salad dipped in ketchup. He is weight conscience, he asks for it on the side:) How disgusting is that??
Taylor was put to bed in his room last night, but about 1:00 I heard him and his ante rage come in to our room. He climbed up in the bed and cried that his foot hurt. I asked him where and he pointed to his toes. I rubbed it a minute than asked if it felt better and he said yes. I asked again a few minutes later and he said no and pointed to his heal. He eventually fell asleep. I asked him this morning if he still hurt and he said no. I asked where it hurt last night and he pointed to his heal and said "my knee". He got all silly when I said that is your heal and he wouldn't talk about it anymore. That is the drawback to him being so young. We have a very hard time knowing if he really hurts and where. He was crying so I don't doubt it hurt. The question now is, why? he has been off Accutane for 9 days. Is it just a cramp, growing pain, cancer? I hate this disease and not only what it does to his little body, but to our sanity as well. He was off and running full speed ahead this morning, so I assume it was just a cramp or something. God knows my kids have huge feet that grow in leaps and bounds, so it was probably a "growing" pain.
Again no plans for the weekend. We need to get a few things back in the attic and other than that the house is clean, who ha!! (Another Taylor word) Next week is a busy week. We have 2 Dr. appointments and Ca Ca gets to make a Mickey Mouse cake for Taylor's birthday party.
Please pray that Taylor is just having normal growing pains. Pray he can remain NED forever. Pray that Logan's CAH test is normal and that my lack of sanity will allow me to believe that and push the fear aside for good. Pray that he never endures what Taylor has or anything close to it. Pray for all our cancer friends. Pray for Alex who has recently had scans that were not good. She is soon to be 8 years old and has fought NB since she was 1 and has never been NED. You can visit her at www.caringbridge.org/page/alexscott Also Alex has what is called the Alex's lemonade stand, this is her very own creation. She sells lemonade and the money goes to NB research. On June 12, 2004 there will be a Alex's lemonade stand across the nation. People have volunteered to have them in various states. I have volunteered to do it here in Alabama. If anyone would like to help me or have their own stand to help NB research please email me. Also, if anyone has any ideas of a good place to set up a lemonade stand let me know. You can check out the lemonade stand at www.alexslemonade.com
Okay all you January car tag people. BUY YOUR CURING CHILDHOOD CANCER TAG!!!!
January 8, 2004 Day +281
Well I must say that today was a much better day than this day last year. Last year on this day Taylor was admitted through the ER for an ear infection. After 6 hours in the ER we were put on a different floor and I am sure you all remember the 18 gauge needle incident:) This was the ear infection that we kept until about May. It was horrible. Knock on wood, his ears look great thus for this Winter season. Also on this day last year my Meme died. I think today has actually been harder to think back about her than last year was. I had so much on my mind with Taylor. He was sick, had just had a round of scans that we were waiting on, we were late on chemo and getting ready for stem cell. I was to busy to mourn and now things are much better and I have had time to reflect and really miss her. Pray that Pop and the rest of the family are doing well on this first anniversary.
Today Miss Rhonda came to play with us for a while. Taylor kept calling her May May which is Mary. I am not sure if he was really thinking it was her or just thought that was her name. They both have short hair, so maybe it was the hair throwing him off. He drug out everything he could think of to show her. Logan has finally decided to eat 3 ounces at a time. Hopefully we will start eating at longer intervals. The past few nights he has been up every hour and a half to two hours. Yuck!!!
I finally was able to get a dental appt. for Taylor. Well, Meredith did. I don't think the lady at the appt desk likes me because she just would not let me make it. Anyway, he goes 2/12. Then we will find out just how nasty and rotten those things really are.
Please pray that Taylor remains cancer free forever. Pray that Logan's CAH is negative this time and that he never endures what Taylor has. Pray for all our friends battling cancer. Pray that all our friends in remission stay there.
January 7, 2004 Day +280
We are back already. It has been a while since we had an appointment go that quickly. The well baby clinic was so much faster than the other office. We were a little early, but they were ready for us. We went in and got Logan weighed and measured. He is up to 7lb 12oz. He is one pound heavier than his discharge date, but still not as big as Taylor at birth. He is 21 1/2 inches long. Wow, he was only 19 1/4 at birth. Pig:) He checked out fine and we re did the CAH test. He didn't care for that too much. That was the loudest I have ever heard him cry. It was an odd test. I can see how the weather would affect the results. All she did was prick his heal and then stamp it onto a sheet of paper. He is showing no signs of the CAH disorder, so hopefully it is all a fluke. We will see in about 3 weeks. Dr. Petelos said his head control was amazing for a 3 week old. He also showed no signs of the jaundice he had earlier. He was good as gold in the car. He had to eat before we left the Dr. office, but he was fine after he ate. I need to call Dr. Berkow's office and be sure that it is safe to get Logan's shots. I am sure it is since he will not get live ones as of yet, but better safe than sorry. He goes back on 2/13 for his next check up and first round of shots:(
Dr. Petelos came out to the waiting room to see Taylor. Taylor was 20 months old when he last saw him, so he was shy, but I am glad Dr. P got to see how well he is doing. After we left there we went to the post office to mail back the ruined pictures. They gave me no trouble, thank goodness, I was ready to fight:) We got the new order of pictures yesterday. I feel better about sending them back since I have some more. I was worried I would never get them and play heck getting them. God handled it.
I totally forgot that Taylor had speech today. Miss Brandi came around 12:30 and worked with Taylor. He was a little hyper and didn't cooperate very well at first then he got into the swing of it until she made him take his passy out. He always chooses the same toys, so I think he gets bored. He did well with the puzzle. It was one that was above his age level, but he did it. He had to choose between two pieces and every time he left the rooster until it was down to the rooster and chicken and he didn't want to play anymore. He must not like chickens too much. I guess he eats nug nugs too much:) Next week will be his last speech session. When you turn 3 you are reevaluated and turned over to the school system. I had already decided not to do that since I do not have any desire to go to the local elementary school to have him seen in a group setting. Well, we were told today that he did not qualify for that anyway. He can not talk because of drool and passy. He drools more than normal anyway plus the passy doesn't help. Both are things that work themselves out and are not long-term. He has said that we can get rid of all passies on his b'day, but we will see how that goes. Anyway, he should begin to talk better on his own.
I went to dinner last night with the sorority ladies. Thanks guys, it was fun and yummy too!
Pray that Taylor remains NED and Logan has a negative test this time. Pray for all our friends fighting cancer.
January 6, 2004 Day +279
Beginning or End?
You have cancer they've told you
Eyes fill with tears
A day to remember
Can't control the fear
You cry for the first day
But, then you must pledge
To determine the meaning
New Beginning? or End?
Choose New Beginning!
Life's "second chance"
Muster your courage
With no backward glance
God, family, vacation ~
Your new lease on life
Forgetting the everyday
Struggles and strife
Cut, burn, or poison?
Must you pursue treatment?
Not glamorous choices
But, life's bittersweet-ness
A vow of survival
A mission plan set
Surgery, radiation, or chemo?
How bad can it get?
You give up some flesh
Take poison ~ how bold
Irradiate your skin to 100 years old
Some go bald in the process
And needles abound
It's hard to believe
That you're not losing ground
Then, there are the people
You've met on the way
Be thankful for them
Each and every day
Not due to the illness
But the lessons it brought
Trade in this journey?
I would guess not
Without this experience
How would you know
what courage you have
Or how far you could go?
To get one more chance
At the legacy you'd leave...
You couldn't imagine
What God had up His sleeve!
For cancer has taught me
To give God His due
And pass on this message
From me to you
Believe in the miracles
While working to come back
God ~ and the Angels
Will keep you on track!
Leslie Droll ~ From "When you get it"
I found this poem on Carl's page. He is now being treated for relapse. Please keep his family and him in your prayers. You can visit him at www.caringbridge.org/mn/carcar He has also just celebrated a birthday!
We are all fine here in the Watts house. Logan must have had gas last night because he was a pill, but after midnight he was zonked until 4:00. He has been just fine today. Taylor fell asleep sitting in Jim's lap last night about 7:30. He woke up about 7:00 this morning. He sat in my bed and ate none other than a rice krispy treat while he watched cartoons. I got to sleep until about 8:30 and that was all Logan was going to allow.
Taylor is trying to fall asleep in his little fort he made. It is the "hunt cub" as he calls it. He is huntin' and sleeping in his camper. Logan is asleep and he should want to eat in about an hour. I thought I would snag this time to update, but I don't have long as I need to "try" for a shower as I was invited to go out to eat with Gam-maw and her sorority.
As most of you know Taylor, who knows his name, will not say it. He always says me rather than Taylor. Last night he wanted me to write his name on his play passport and I told him I couldn't because I didn't know his name. He just looked at me and said "Tay Tay Watts". Finally, at the age of 35 months and 18 days he said his name. Wahoo!! Wahoo would be Tay Tay Watts' version of yahoo. I'm telling ya, we have our own lingo around here.
We go for Logan's 2 week check up tomorrow. He is actually 3 weeks old tomorrow, but that was the first available apt. in the well baby clinic. I figured it was better to wait a week and go to the well baby than drag him into the sick clinic. He will also have his CAH test redrawn and sent to Montgomery. I am hoping that the lab work does not have to be done in the main building which is the sick office. We shall see!! As for me, I am still hurting and have no idea why. I did absolutely nothing yesterday so that I could rest if I had pulled a muscle, but it didn't seem to help. I would call the Dr, but I do not have time to go to the Dr. until my scheduled apt, so I will wait until next week.
That is all I know for this Tuesday. I do have a special prayer request today. The mother of Jessica, a 13 yr old girl from Minnesota, that also had NB and lost her battle a few months ago, has been told that a spot on her forehead is cancerous. It is easily treated, but that is not news that a cancer family ever wants to hear again. Please keep her and the family in your prayers as they again face the "C" word. www.caringbridge.org/mn/jessicalynnnielsen
Please continue to pray that Taylor remains NED forever and that Logan's CAH is a false positive. Pray for all our friends that battle this battle everyday.
January 5, 2004 Day +278
Hello again, how was everyone's Monday? Ours was iffy. I am hurting all of a sudden. I am pretty sure that I just over did it yesterday while I was cleaning and maybe pulled a muscle. I was not feeling real great after hurting and wondering why. Taylor did not want to eat. He refused to eat all morning. Then Dr. Petelos, Logan's ped., called and said that one of his newborn screenings was elevated and needed to be retested. I said okay and that was that. Well, I thought about it and worked myself all in a tizzy and fell apart. I called the ped back to see which one had to be redone and it had to be the congenital "adrenal" hyperplasia. The adrenal gland is where Taylor's primary tumor was located, so that really sent me over the edge. No one could tell me if there was a link or not. I finally got an email from Dr. Modak in NYC and Kenna, a nurse at Children's, who could tell I was obviously very panicked had Dr. Berkow call me. Both Dr's said that NB and CAH are in no way related. It is 2 totally different enzymes that are looked at. Dr. Berkow asked about his eating habits and weight gain and said that was all normal. Both Dr's also said that that test is very often a false positive and not to stress over it to much. Dr. Petelos said when he called that he had had several come back false in the last month, so we are "trying" not to worry about it. He will have another blood sample drawn on Wednesday and sent to Montgomery, it will take about 3 weeks to come back. If it is positive he will have to take a hormone replacement to make up for what his body can not make. It is a lifelong treatment, but it is easily managed. However, we do not wish to have to treat anything, so let us pray that it is a false positive. If it is a false one let us pray that our now battered minds will not second guess or worry unnecessarily. This is a prime example of how cancer strips you of your normalcy and sanity. I automatically go into hysterics over something that I normally would have shrugged off until later.
After I talked to everyone that I possibly could to get an answer, I felt much better. To top off the good, Taylor wanted food. He ate 5 chicken nuggets and a whole bowl of noodles. Of course he has had no dinner, but he did eat a late lunch that was big. Logan has eaten fine. He uses the bathroom normal and everything that he should be, so I am going with the assumption that it is a false pos until I know different. Easier said than done.
Stop by and congratulate Alexis, she is 1 yr. post transplant tomorrow. www.caringbridge.org/al/alexislindsey Tomorrow is also Sarah Anne's birthday. www.caringbridge.org/al/sarahanne
Please pray that Taylor remains NED and that cancer never again invades his body. Pray that Logan had a false positive on his CAH test and that he never endures anything like Taylor has.
January 4, 2004 Day +277
I got up about 8:00 and fed Logan for the first time all night, Thanks Guh. Logan and I had a nice day. He slept and I cleaned up and put away all the Christmas stuff. There is still sooo much to do, but I feel better having most of it done.
Jim and Taylor got home around 2:30. Taylor is slap exhausted, but he has no intentions of giving into it. He had so much fun. He slept in his Winnie the Pooh sleeping bag in the camper. He enjoyed sliding the curtains back and forth as he laid in bed. He played hard on his gator today in the mud. His clothes and shoes are a muddy mess, but that is a sign of a "normal" 3 year old activity. Isn't is great!! I hope to wash many more muddy clothes and shoes. He told me all about washing the mud off the gator. When he got home Pop was here. He played outside with Pop while Jim took down the lights on the house. I got the tree down and put in new plastic storage boxes. It was all in cardboard boxes, but we had to fix that just in case our squirrel friends figure out how to get in the attic. Slowly but surely my house is coming back together. Yeah!!
That is all we did today. Taylor and Jim are now watching Finding Nemo. Taylor is so tired that I am sure he will be asleep very soon. I am thinking of all I need to do to finish up cleaning, but am too tired to go anymore. I will start again tomorrow, but we shall see how much I can do with Taylor's "help".
I told a lie!! We do not have until October to get the needed car tags pre-purchased, we have until July. PLEASE go by and pre-purchase this tag. It will benefit soooo many kids form all over Alabama. Go to www.chubbychica.com and click on caringbridge and you will meet many children from all over the world that could benefit from more research and that is what you would do if you bought a tag, benefit Alabama children who treat at Children's Hospital.
Please pray for the Sims family as today marks the one year anniversary of Janie earning her angel wings. Please stop by her site at www.caringbridge.org/al/janiesims Pray that Taylor will stay NED forever!!! Pray that Logan and Taylor's upcoming Dr. visits are fine and both boys are in tip top shape. Pray that Logan never endures what Taylor has. Pray for all of the families that are battling this disease rather it is a family member young or old.
January 3, 2004 Day +276
I hope you all had a pleasant day, we did. We woke up with a jolt when we heard a loud noise coming from the kitchen. Seeing as we were all in bed it was scary. What we found wasn't scary, but not funny although I was laughing pretty hard. It was a squirrel in the vent in the hood of the stove. He eventually climbed out and you can see claw marks on it. We will have to find a way to block it. He is storing nuts in it and fell in. Taylor thought it was funny, but it sounded horrible to hear that thing scratching on that tin pipe.
After the fun of that episode we all got ready and headed towards Guh's. Logan stayed with her while we went to pick out party stuff for Taylor's upcoming 3rd birthday party. After about 20 minutes of looking he settled on Mickey Mouse. It is a little odd that he didn't go for Buzz or Thomas his favorites, but it is due to a new movie he got for Christmas. It is a Disney Land video that sings songs while showing the rides and shows from the park. He loves it, we watch it 100 times a day. He is also big into stop signs. We play cars and have to stop and look both ways. He found a stop sign that says stop the party is here, so we have that too. We took him to his favorite, Ruby Tuesday's for lunch. He seemed to enjoy and "old times" activity. He ate a ton of ham from the salad bar, but not so much of his nug nugs. After lunch we went to get his hair cut. His first hair cut since chemo. He had a buzz back in September to even up that bald spot, but this was a true cut. He was good as gold and looks handsome. It even seemed to make his face look chunkier. We dropped him off at Guh's to ride his 4-wheeler and we took Logan home. Guh brought Taylor home this evening.
Jim and I met Gam-maw and Papa at the Cracker Barrel. They were a little disappointed that Taylor didn't come too, but we couldn't tear him away from Guh who finally got to come see all his new toys. They came back to our house and played while Papa and Ca Ca and checked on the squirrel situation. Taylor took a bath and got re-dressed and headed out for a night out with the boys. He is spending the night with Ca Ca and Papa at the hunting club in the camper and he is pumped. He is a little upset that he wanted his 4 wheeler not the gator, but we convinced him that his little riding lawn mower would be just like the 4 wheeler, so he brought that. He has wanted to spend the night since he went down a month or so ago, so since it is sooooo warm we decided to let him.
Guh spent the night with me and Lo Lo. She wasn't going to, but when she went to hold him and got to talking about how much he looked like me as a baby, she got side tracked and stayed. I got a solid night of sleep since she kept him in the living room. We didn't go to bed until 1:00 which isn't smart when you finally get to sleep, but we had fun.
January 2, 2004 Day +275
Hello. It is TGIF for me because I am feeling good today and I am finally ready to really clean house and get all the Christmas stuff put away. I guess it is not so much TGIF for all the working folks. Monday life goes back to normal. No more off days for a while. That kinda stinks for us too as we like it when Ca Ca is off and gets to stay home with us.
Anyway, As far as we know our plans include cleaning, taking down decorations, and going to the party store to get Taylor's birthday stuff. I wonder what he will pick this time. We have a ton of Bob the Builder stuff left, I hate to do the same thing again, but it would be nice to use it. Oh well, you only turn 3 once. I am going to try to bring that stuff back and swap it for something else, but if they don't let me, we will be eating dinner off Bob plates:)
We were looking at photos the other day and we got to hospital photos. There was a picture of him and his nurses and we asked him who they were and he said he didn't know. I was shocked. Sorry all nurses:) I was sad that he forgot them even though it has been a year since he has seen most of them, but it was good too. I am glad that he can block it out and that cancer and a years worth of hospitalization will not be one of his big childhood memories. I guess that is one of the up sides to have a toddler be sick. You don't have to explain a lot, I mean he was so young when he got sick that he thinks this is normal. He has no idea that every child doesn't have a port and gets chemo and he will be too young to remember it or at least very much of it. I do know that we are going to have to swing by 4 tower and see everyone. I can not have him forgetting our nurses.
Okay, it is a new year and we all need new tags this year. We have until October to get 930 curing childhood cancer car tags pre-purchased. Please, please for Taylor and all his friends, go pre-purchase the tag at your local tag office. It is quick, easy, and will benefit Children's Hospital and all the oncology patients there. It will offer a better research program that can lead to a higher cure rate for cancer. I am not going to leave you all alone until you buy one:)
January 1, 2004 Day +274
**January 2nd would have been our dear friend Jake's 5th birthday. His family will be releasing balloons in his honor on that day at 3pm EST, so if you would like to honor a friend of Taylor's who also had Neuroblastoma, you can join in by releasing balloons at 2pm CST on the 2nd.
***late update*** Happy New Year again. We had a nice New Years Day. We left around 10:00 to go to Guh's house. We got there early so Taylor and Guh could swap presents since Guh was sick on Christmas. Taylor LOVED his 4 wheeler. He jumped on it and rode till it was almost dead. We left it on charge and some how got out of there without him asking to bring it home. He also had a blast sliding down the front yard hill on a card board box with Drew and Blake.
One of the little boys that I used to teach lives behind Guh and we went for a visit. Garret and Taylor rode their 4 wheeler and motorcycle and had great fun. It has been so long since he has played with kids and it was great to see him warm up to him. He even rode on the back of the 4 wheeler behind Garret. I can't wait for it to warm up and they can really do some outside playing. Taylor needs that. It was great to see you guys!
We ate dinner at Guh's. Of course she had to add to the menu as we did not like turnip greens and black eyed peas, yuck! We stayed until none of us could hold our heads up any longer. We came home and napped until 6:30. It felt great, but we will probably regret it tonight.
Happy New year!! I hope you all had a great New Years Eve. Jim and I went out to eat and then came home and watched good "old" Dick Clark and the NYC Rockin' New Years party. It was pretty cool to watch it and know exactly where they were and see store fronts we had been in behind the people. However, I am glad I was home, warm in the bed watching it and not in the middle of it. What Chaos!! Want a little factoid, a tid bit of absolutely useless info. Number 1 Times Square, the building that the ball is dropped from is empty. It sits in the center of Times Square where the road splits and all it does is house the electronic billboards that run around it and that is where the ball is stored all year before being drug out for the next New Years Eve. Big building doing nothing but holding wires and a big ball. Crazy huh! That's NYC for ya:) I am sure they had fun, but I can not imagine how crowded and cramped it is. We went to the ball drop in Auburn in 99/00 and it was crazy. If your were Closter phobic you didn't need to be there and I am sure there was no where near a million folks there.
Taylor fell asleep around 9:30 and so he missed the festivities. Logan woke up to eat around 11:00 our time so he was awake for NYC's midnight. I guess that counts:) He took a short nap, but played hard with Ca Ca who was off early and Papa and Gam-maw (yes, Maw Maw has yet another new name) came to play while we went to eat. He was so sleepy it didn't take but a few songs of the beloved Disney Land video to knock him out.
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