Quick Jump: 2nd Quarter 2005: April May June
June 30, 2005 Day +820 Day #518 off treatment
Today seems to be going fine. Taylor slept with us on his throne. He seemed to sleep okay. He didn't really like being upright and kept sliding down and then he would breathe funny, but he did okay. He didn't wake up, but I heard him moan a few times. He did ask for Tylenol when he woke up and he never asks for Tylenol. He did not bleed on anything during the night. His right nostril looks great this morning, but the left side is still bleeding a little. He did keep picking his nose even in his sleep. I tried to stop him, but I had to sleep too. He had red fingers when he got up, so I have proof that he did it:) He is getting better and stopping himself. He is complaining of his hips today. He never complains after bm's, but I guess he just had too much done yesterday. He is still harping on the IV spot! He took the band aid off this morning. He seems to be happier with it off. He has not really mentioned the port spot at all. I don't think his nose really hurts so much as he just doesn't like the packing and the blood. We will start the saline solution on Sunday and hopefully that will help it heal quicker. He took all his meds fine this morning. I have not had the heart to put the breathing treatment mask on him yet. I know that I have to, we will get to that.
He has talked to me about going back by himself. I think he may have given them one of those sad silent cries. He told me that he didn't like going by himself. I asked what they did not really thinking he would know. He said that they put a mask on him like on TV and he fell asleep and then they put a tube in his mouth (we told him that was why his throat hurt) and then they took his snot and port out. He felt much better about it all when I assured him that Miss Rhonda was in the room with him. I guess as long as he knew someone he was okay even though he had no clue she was there. He said they took stickers off, the leads I assume for the heart monitor, and he said he moved (proceeded to show me how he jumped) but didn't cry. While he was telling me this he said he ha something in his eye. I asked what it was and he said "cry" AKA tears.
Dr. Berkow called me this afternoon and said that all 4 bone marrow aspirates looked great. It will be maybe tomorrow, but more likely Tuesday before we get the biopsy back.
Taylor has begged me to go lay with him, but I couldn't until Logan took a nap. I put Logan down at 11:00 and we got in bed and I fell asleep and Taylor played in his room. I hate that I didn't get to snuggle while he was willing as that doesn't happen much these days, but I am glad that he is feeling well enough to destroy his room. Logan is still asleep and it is 1:25. Wow!!
I find it rather humorous that I am comfortable with all the procedures that took place for cancer and this "normal" routine surgery is blowing my mind. I hate to look at him and see that swollen face and bloody nose. Poor baby! I also find it crazy that June 29th is a hospital day for us. I have no idea what we were doing June 29th 2001, I guess I was working and Taylor was at Nana's, so nothing exciting that day. However, in 2002 we were at Children's south for an exam to the eye that Taylor used to run into the fireplace. I know it was that day because it was Guh's birthday. 2003 and 2004 we were in NYC and 2005 we had all of yesterday's hospital excitement. I hope that next June 29th we are sitting somewhere tropical. Maybe we should go ahead and plan that so we can break this cycle.
June 30th 2003 was the day we started 3F8 antibodies in NYC. I don't miss those days. I hated it, but honestly, if we ever had to do it again, I would. I hope that from here on out I have boring updates for you. I guess I really could stop this page now, but it is very helpful to me to sit and write, so I will keep it going as long as you guys are reading. Please sing the guestbook too. Pray that Taylor is NED forever. Pray that Taylor never again faces cancer other than to help others who are dealing with it. Pray for all our friends who are fighting their own battle. Pray for Lindsey as she recovers from her surgery this morning and pray for her parents as they train on all the stuff they need to know to take her home.
June 29, 2005 Day +819 Day #517 off treatment
The nurse called us around 7:00 last night and we are all set for the sinus surgery as well as the bm's and port removal. I am going to stop over analyzing and things. It all worked out for the better. If he had had surgery last week he would have to be sedated again and that is too much. This way we get it all out of the way at once and hopefully he will feel better soon. He should not have to stay over night, but we do not yet know if he can go to school tomorrow or when he will be able to swim. That is his main concern .This extra procedure will keep us there longer than planned, so don't look for an update for a while, but we will post as soon as we are able.
What a day. We were up at the normal time as Jim went to work and I fed Logan and myself before Taylor got up. Jim didn't wake Taylor up to watch him leave since we knew the longer he slept, since he was NPO, the better. He woke up around 8:00 and was ticked off. Many mornings he watches him go then goes back to sleep, so I told him that is what happened, but he didn't fall for it. He calmed down and came and watched cartoons. He did is breathing treatment and played and never mentioned eating and then he headed to the pantry. I stopped him and he had an all out fit. Guh got to the house around 9:00. She played with Taylor against Logan's will for a while before we left. Taylor and I left around 9:30. We were all signed in by 10:20. They did not have a room ready, so we had to hang out in the waiting room and we kept getting called back to do this or that and then sent back out to the waiting room. I think we got Dr. Long's (anesthesia from last week) friend as Dr. Gross said he was too congested to be put to sleep. AARGH, here we go again.
We finally got a room around 11:30 or so. They ordered Xonpenex, but Rx can not give that without a pulmonologist ordering it and we don't have one, so they wanted to do Albuturol, but I had already told them I had brought his Xopenex. We ended up giving him that and scratching his orders. Tracey, Dr. Barnhart's nurse, came in and said that they were running behind and that it would not be 12:30 when they took him. That was no big deal since they didn't even have the right papers and all they had listed was the bone marrows. He was not listed as having the sinus surgery and the port removal. They found it all and it was fixed. The hours ticked by and nothing happened. Finally, she brought us Afrin nasal spray and we had to spray 2 drops in each nostril. We had to do it again pre-op and then again right as they wheeled him out of the room. She said she would come back and tell us when to do it again. Hours later, she came in. He was finally taken back at about 3:30. He never cried or anything, he just went. He is so big! It was sad and great at the same time. No four year old should have to be that familiar with the hospital setting. As they were taking him out the nurse said that he would be admitted. We spent the next little bit figuring out who would get Logan from Nana's and who would go home and get clothes and all that stuff. Rhonda came by and told us that Dr. Hill did the sinus surgery first since Dr. Barnhart was still tied up in an emergency surgery that caused us to be pushed back. Anyway, After Hill finished Rhonda did the bm's and drew the samples for MSKCC. It was around 5:30 when Dr. Barnhart came in and said that he was done. He said that Taylor can swim in about a week and keep the spot dry other than a bath. All stitches are inside and will dissolve. He said we could go home as soon as he came out of recovery. Huh? We thought we had to stay. He went to page Dr. Hill to see why he wanted him to stay. Dr. Hill came up to see us and he didn't want us to stay he thought Dr. Barnhart did. Anyway, we were told to go home. We still had some waiting to do since he was in recovery.
We saw Dr. Berkow today and he will call us with the results of the bm's next week. He doesn't feel the need to come in and talk about. I must say, I am still baffled at the special talk about results, but I am chalking it up to it being the end of this journey and we need to see what to do next. As for his follow up directions with Hill. He has Afrin to spray if he bleeds and he has been a good bit. I have to mix a solution of tap water, salt and baking soda to squirt in his nose several times a day for two weeks. He can swim this weekend with that, but we won't be due to the port spot and my over protectiveness. The paper work said 2 weeks, but Hill said he could. We wont push it! We do not have a follow up per say. We are in and out so much, if I feel he is not healing well we can drop in and be seen. It is also nice to have Dr. Berkow's wife and ENT nurse practitioner and maybe he can pull strings with that. SHH, don't tell him I said that:)
Finally, around 7:00 Taylor was back in the room. He looks like he got beat up. His little face is swollen and he has a bloody nose. He has his 8 holes in his hips from the bone marrow draws and he has the cut on his chest from the port removal. His main concern and pain source was the IV in his left hand. I must say it was rather funny watching him nurse that hand. I am glad that he was asleep when they put it in because he went crazy when she pulled it out. He is still not moving that hand.
He wanted to ride in Paw Paw's truck. It worked out anyway so that he could have Gam maw in the back just in case he got sick. We also moved his seat so that the seat belt came across the right side and not the left like in my car. Jim stopped to get him some Sonic per his request and I went to get Logan.
I was a little nervous about coming home after seeing how pitiful he looked and all the blood. I came in to find that he had eaten most of his grilled cheese and a ton of chips. He had had another cup of tea and was playing great. He was up to much was he was bleeding. He doesn't like that and I am not enjoying squirting that stuff up his nose. I caught him being very noisy in the bathroom so I went to check on him. He was in the sink trying to wash his nose off. Too smart. Speaking of too smart, he has a little dissolvable packing in his nose and he wants it out. He asked for the blue suck thing (bulb syringe) to clean it out.
I have just tucked him into my bed. He looks like the king of the world. He has to be elevated, so he is in the center of the bed all propped up with pillows. There are towels all around in case he bleeds and he is a pull up after all that IV fluid. I am on my way to snuggle up beside him. We are going to make a Taylor sandwich as our dear friend Jake would have called it. www.caringbridge.org/nc/hopefor
Before we left tonight we stopped by to visit a AmSouth friends newborn baby. She was born with a rare muscle disorder that I could not even begin to say or spell. Dr. Barnhart will be doing surgery on her tomorrow morning. Please pray for her as she undergoes this procedure at only a few weeks old. Be with the family as they deal with this. While we visited with them a baby in the NICU died. How sad. We were on the floor several times when a cancer friend left us, but it has been a long time and it was very sad. Please pray for this family as they deal with this loss. We have no idea who they are, but no family should have to endure such pain. Pray for all those parents out there missing a loved one.
Pray that Taylor is done with cancer other than helping others. Thank the Lord for getting us to this day and through this day. Pray that Logan never endures anything like this. Pray for all our cancer friends. Pray for a newly dx NB friend. We actually do not know her, I am about to check on her. We were just talking to folks I the NICU and a lady asked about how the BM's were since her friends kid was just dx with NB. We told her that is what he had too. We passed along a bracelet and hopefully we can help them out some how.
June 28, 2005 Day +818 Day #516 off treatment
UPDATE ON SURGERY PROCEDURES:
The nurse from Dr. Hill's office just called and Taylor definitely needs sinus surgery. Since Taylor is scheduled for 12:30 with Barnhart and is the last case in that room we hope to have Dr. Hill come in and do his thing when they are done. I certainly hope that they can so that we can get it all over with at one time. I had been told last week that he would have to stay over night if he had that done, but today she said that he shouldn't have to. I am not sure if he will be able to go to school on Thursday, but we will play that by ear. I need to go to work. I might as well have taken the month of June off as much as we have missed. Oh well, thank heavens I work with such caring people and they understand it. We are still waiting on Dr. Barnhart's office to give Dr. Hill's office permission to do the surgery, but we do not really foresee a problem with it. I will update yet again if I do here anything from them, but it could be tomorrow morning before we know.
Another funny. I think this was only funny because of what the boys had already done today. Logan took another nap this afternoon and he was still in Taylor's shirt. Logan's overalls were in the floor since we are going out to eat tonight I just left them to put back on him. I was actually typing this update when I heard Taylor laughing very hard. I turned to see what he was doing and he had squeezed himself into Logan's 18 month overalls. He looks so goofy. He was skinny enough to fit in them, but to tall. He was hurting his crotch and though he said they felt fine, he was grabbing his crotch, so I know it hurt. They were so short that his underwear was hanging out the bottom. It was so funny. I had to get a photo of that! I see so many funny things that will come back to haunt him in his high school days.
UPDATE ON SURGERY TIME:
The nurse called and I don't like this time, but oh well. We have to be at the hospital at 10:30. It is nice not to have to wake up at the crack of dawn, but it is hard enough to keep Taylor NPO anyway, but to do it after giving him the steroids will be awful. We will be keeping him up as late as possible tonight and then giving him a snack and prednisone. I will give him his nebs on schedule tomorrow and bring some with us too. I am expecting him to go back around 12:30 and hopefully we will be done around 2:30 or so. That is just my guess, but I was not given a time frame on it at all. It only took 45 minutes to put the port in and I assume it is easier to take out than to feed that line in. However, we all know you shouldn't assume. We are going out to eat with Gam maw and Paw Paw tonight and hopefully Taylor will eat like a pig and get good and full. I will update tomorrow as soon as I am able to. Please pray that all goes smooth, no wheezing, and we come home port free. Pray that his bm's are clear and that he is NED forever!!!****just a funny. Logan had on overalls and had a hard time keeping his arms in them, on purpose. He finally took them off and I left him naked. I heard them fighting and squealing at each other and when I went to check on them I saw Taylor dressing Logan in Taylor's pj's. They managed to get the shirt on and buttoned, but Logan would go for the pants. He is wearing it now and thinks he is funny.
We are already back from Logan's Dr. visit. He was at 33 inches long and 22 pounds and 151/2 ounces. That is up from his 15 month check up in March, then he was 31 inches long and 21.11 pounds. He is in the 50% for height and at about the 20% mark for weight. He is still two standard deviation blah, blah, blah. I have no idea what he was talking about, in other words he is small, but okay. He is typical in his eating patterns by eating like a horse one day and nothing for several days. HIs tubes looked fine and had no fluid. He checked out fine and all shots are up to date, so he lucked up on that and didn't have to get any. He will not have to go back for a check up for 6 months when he turns 2. WOW! I am not used to waiting 6 months to go to the Dr. Will we make it?
I had Dr. Petelos look at Taylor too. He has been complaining of a pain in his side this morning. He tells me every time I ask and when Dr. P asked, he never changes the story, that he did it when he was stretching this morning. He is bouncing off the wall one minute and clutching his rib are the next. Dr. P did not feel or notice anything and since he just scanned we think he must have really pulled something. I can't say that it doesn't worry me, but I am trying to ignore it and see if he doesn't forget. He didn't mention it for a long time and then I heard him say ouch and he wanted a band aid for it. Goofy! We shall see what comes of it.
Dr. Petelos also listened to him this morning and there is a trace of a wheeze when he exhales. Great! I hope that this just shows that Dr. that obviously Taylor just has a persistent wheeze. He has been on 5 nebs a day and Prednisone for a week and he still has a trace wheeze. HMMM.... Dr. P didn't appreciate his comment on his asthma not being controlled! I didn't either especially when the pulmonary Dr. said he was fine. Anyway, hopefully, the last dose of Prednisone before bed will take care of anything that may be lingering.
Please pray that all goes well and that there is no set backs tomorrow. Pray that he comes home port free. Pray that whatever this pain is goes away and is not serious. Pray for all our friends. Pray for Cam who scanned last week and did not get the results they wanted. He has some new spots lighting up on his MIBG and will have to start chemo again. Please stop by and visit them and leave some kind words. www.caringbridge.org/fl/camspage
I will update again later when I hear from Dr. Barnhart's nurse with a time for surgery tomorrow.
June 27, 2005 Day +817 Day #515 off treatment
We are back from the hospital where we were cleared for surgery on Wednesday. We got there right on time and we were sent up to get an x-ray for Taylor's chest. We then came back down and did triage where he was 3'3'' and was 35 pounds. We waited in the exam room for a while. A nurse came in and asked a million questions then left. I know she wanted to run and hide. Taylor was jumping around on the table and that paper was rattling and being very loud. Logan was screaming because he dumped his fries in the floor for the 3rd time and I threw them away. It was lovely in that little room. Dr. Rowe came in soon after her and said that the x-ray was clear. He also listened to him and he heard no wheezing, neither did the nurse. He said to take the last dose of Prednisone on Tuesday night right before bed and that should ward off anything that may creep in his lungs over night. He will also get his nebs in the morning before we go. I think all will be fine on Wednesday.
School was fine. I didn't have Taylor's class just my 2 kids! It was great. I got a lot done in my class room. Taylor told me this morning he just wanted me to take him to his class not be his teacher. I agreed! I think he will want me in the Fall because he thinks that I go with the upstairs classroom and he knows he and his friends are moving up. He was pretty good at school considering he is on those steroids. He ate a ton! Logan showed his tail! He had a nice fit for Miss Kelli and Miss Becky. He does it all the time at home, but now he is sharing it with his teachers. It was over a cookie, he didn't get the animal cracker he wanted. Is he old enough to know there is a difference? UUGH!
We are finally home after all or stuff. Taylor wanted to go spend his $2. He got a dollar from Guh the other day because he said he babysat Logan while we pained the bathroom. He cleaned his room last night and when he called me in to look at it and approve his work he said, "give me some money" and held out his hand! I did too because it was so funny. However, he was ugly while we waited for the Dr. to come in and now he can not go spend his money.
Tomorrow we have an 8:30 apt. for Logan's check up. I could have had in it the afternoon, but we originally had to go see Dr. Berkow and now we don't have to do that. I am not going to call and change it again though, so we will just have to get up and moving early tomorrow.
Please pray that Wednesday goes fine and we come home port free and BM's are all clear. Pray that he never again needs a port and is NED forever. Pray that Logan's check up is fine and that he never faces anything like his brother has. Pray for all our friends who are fighting a battle of their own.
June 26, 2005 Day +816 Day #514 off treatment
Hi again! We have had a nice day. We slept as late as we could or as late as Logan would allow. We didn't make it to church. I hate we missed it, but we just couldn't get moving this morning. We ran to the store for milk and that was about it for errands today. I did get the laundry done, so we are not naked this week. The guys stayed home and played outside while I went to Guh's for another candle party. I am having one in July, so if you are local or want to drive:) let me know and I will get you on the invitation list! It is Partylite, the more the merrier!
I got home around 7:00. We ate hot dogs then bathed the kids. I must say that was some yucky bath water! They have played outside all afternoon and they were filthy. Taylor has been awful on these steroids. I am here to give major praise to all the leukemia parents out there who do weeks at a time on steroids! WOW!! He is mean as a snake and I can't keep enough food for him. He ate 2 pieces of cheese toast this morning and then a pancake. He ate a lunchable about an hour later. It is insane how much he is putting in his mouth. He has a dose tomorrow and then if he is cleared for surgery he will take a dose right before bed Tuesday night to be sure he is nice and clear on Wednesday morning. He is finally not snotty. I guess the Nasonex finally kicked in. He woke up sounding kind of cruddy, but I guess it was just all the gunk breaking up because he is fine now. He has been real mad, but has taken 5 nebs a day. He told me the other night "I have been taken' these for 3 weeks and this is the last one". Ha, he is crazy! I do not want to make him suffer through surgery, but I hope he gets sinus surgery as I hear it is very helpful.
We have a doctors appointment at 2:00 with Dr. Rowe to clear him for surgery. Tuesday we have an appointment for Logan, but we cancelled to consult with Dr. Berkow. He will talk to us Wednesday instead. Logan has been rubbing his ears, but there is no drainage from his tubs. I am hoping it is just habit to rub them and they aren't blocked. We shall see. He hasn't been eating much, but he is all snotty too, so maybe that it is all it is. His poor face looks awful. His nose is raw from wiping it all the time. He has a little red dot on his chin, we have no idea what it is, but it is there. He fell tonight and hit his mouth and nose on his cup and has red spot on his nose and a busted lip. He looks like he got beat up. Poor baby!
Please pray that Taylor is NED forever. Pray that Wednesday is a success and we come home port free. Pray that we are able to get this snot and asthma under control. Pray that Logan has a great check up and that he never faces anything like Taylor has. Pray for all the kids and adults out there who are fighting a battle of their own rather it be illness or other adversities. Pray for all of our troops and families that are missing them.
June 25, 2005 Day +815 Day #513 off treatment
Howdy, from the lovely state of Louisiana. I know you all think I am crazy, but I am telling the truth. Last night Jim and I took off for Texas and we are now on our way home. We ran away from home! No, just kidding. We had to pick up something from Fairfield. Texas. We left home around 7:00 last night. The boys went to Gam maw and Paw Paws. Taylor was excited, but mad that Logan had to go and that he couldn't swim. We told him no swimming until the port was out and the asthma and snot was under control. Anyway, we stopped in Tuscaloosa for dinner and then we were on the road. We stopped for gas and snacks in Mississippi. I then took the wheel and Jim went to sleep or tried. We have learned that it is hard to sleep laying in the back of the car not knowing what is going on and why we are slowing and swerving. Although it felt worse than it was, it is hard to lay there and wonder what is happening. He took over again in an hour or so. I climbed in the back and tried to sleep this time. Soon we were at a rest stop, but neither of us wanted to drive, so we joined the literally 100's of cars and truckers that were parked and sleeping. I have never seen a rest area with cars full of people sleeping. Truckers yes, but no cars. We were only there about 45 minutes. It is also hard to sleep in you car in a rest area parking lot! We drove on through to Tyler, Texas where we had some breakfast. We were at the mans house by 7:00AM. He was very nice and had even come by and read the web page. He offered his prayers for Taylor and we loaded up and by 7:40 we were back on the road. We talked briefly to Gam maw and the boys were eating and other than that I don't know what they are up to. It is about 11:30 and we are about 40 miles away from Monroe, LA. We are starving, so we are making a put stop there and then finishing up. We hope to be home by 6:00 or 7:00.
I got a bit more than I bargained for. I knew we were going to drive there and leave, but I was thinking more in terms of just no shopping stops and sight seeing. However, Jim meant no hotels. I guess I just didn't think about it, but I am really in need of a shower! I was busy packing shampoo and soap before we left when I should have been using it! I didn't even need a bag, we haven't even changed clothes. I am not happy about that! That is the first thing I am doing when I get home. Luckily I washed all but one load of clothes yesterday, so we will not be swamped with house work when we get home.
Well, this was not an exciting update, but that was our Saturday, so far anyway. We just wanted to let you all know that we are enjoying our weekend. We are over our set back. I wont say that I haven't continued to wonder why, but we are blessed to be here and to have Taylor healthy and we will focus on that and not rather Dr. Long was truly concerned or just ticked off. We have read such bad news on so many caringbridge sites lately that we are just thankful to be in an NED state and ready to lose the port. If asthma and snot is all we have to deal with then we are doing great!
Please pray that Taylor is indeed NED forever. Pray that Monday's visit back to Dr. Rowe goes smoothly and he is cleared and that Wednesday goes smooth as well. Pray that this time we leave with no port and get clear results from the BM's. Pray for all our friends that are fighting a battle of their own.
June 24, 2005 Day +814 Day #512 off treatment
Thank goodness it is Friday!!!! We had to be up early again. We went to Nana's for a while. Logan got mad at me when I took a wagon from her workshop outside. I put it in the car to bring home, but he wanted it then. I fed her kids and Logan pigged out on what they had. He was so sleepy at that point it was funny. I didn't put them to bed though, so he had to stay up a little longer. We met Guh for lunch, but he was grumpy since I woke him up after only about 10 minutes. Taylor didn't want anything to eat and I was in no mood to argue with him so we didn't get him anything, but he ate great off of Guh's plate. We did a little shopping for some goodies to decorate our wagon with for the 4th of July wagon parade at church. Taylor is excited to decorate the wagon and pull it in the parade. I am not sure how Logan will feel about that, but it should be interesting. We came on home after that. Logan is not feeling well at all. He has a very snotty nose and it is raw from wiping it so much. He just couldn't go to sleep in the car and he was upset. Once we were home I gave him some Benadryl and put him to bed. He has been asleep for a while and I hope he feels better when he waked up. Taylor still has a thick, green snotty nose after several days on the Nasonex. I am getting real fed up with it, I hope it goes away soon.
Meredith called and Dr. Barnhart has rescheduled the surgery for Wednesday, June 29th. Meredith is off that day, so someone else will have to do the bm's, but that is no big deal. We know everyone there, so we have no problem with that. I just hope it all goes smooth this time. I do not know a time yet. Tracy will call me on Tuesday to let us know. I am assuming about the same time as yesterday. I called the ENT clinic to see what was going on with the CT he had of his sinuses last Wednesday. They called back and said that Dr. Hill had not read it yet and it would be Monday night before he did. Yes, that irratated me! The nurse did say that the sinuses had blockage and infection, but she could not say what he would do. I asked if it were possible to get it all done on Wed. at the same time, but it depends on what time Barnhart has him scheduled. Hill doesn't start surgery over there until 12:00 and usually not at all on Wednesday. The sinus surgery is 45 minutes and he may not could fit that in. I understand all that and it may have been too long out have him out anyway, but it is rather irratating when we have been waiting a week to have him read a scan that was available to read 10 minutes after it was done. Also, had he scheduled it for yesterday he would have had the surgery no questions asked because it would have been considered therapeutic. Anyway, enough of my venting!
Please pray that Taylor gets all this snot and gunk out of his system and we can proceed as planned. Pray that we can put this behind us and never have to deal with the treatment end of cancer again. Pray for all the cancer kids and all the people, young or old, that are fighting a battle of some sort.
June 23, 2005 Day +813 Day #511 off treatment
This has been the worst day that I have had in a long time. We got to the hospital at 6:30 and went right on back. We were ready to go by 7:00. The anesthesia guy came by and we thought we were all ready to go. Well, he wasn't even the guy to decide. Yet another one came by and didn't like the way his chest sounded. As usual he is wheezing, but that is just Taylor, it never ends. He said no surgery today. We asked that a breathing treatment be given and after a hassle Albuturol was given. The respiratory therapist said he sounded much better and he sent in the anesthesia guy again. He again refused to put him to sleep. He told us that he needed to see a pulmonary specialist and that his severe asthma was not under control. We asked for a second opinion since this is what we deal with every time he is sedated. This really ticked him off and we had already stepped on his toes by questioning his authority and requesting a breathing treatment. Come to find out this is the same guy who sedated him for his teeth surgery and he had a breathing treatment that day too. Anyway, long story short, no surgery was going to take place today. Instead we sat and waited to be seen by Dr. Rowe, a pulmonary specialist. A team that Dr. Long felt was to be a regular part of treatment for Taylor. Dr. Rowe took a listen later in the day, hours after the nebs had taken place and said he sounded just fine. He had a small wheeze in the right lung, where the reactive airways/adelectisis (sp) is located. He said he is not the one who can decide if sedation is safe, but he sounded fine to him. This was the product of a cold that aggravated the asthma. He doesn't have severe asthma and he doesn't need to see a pulmonary team on a regular bases. We were pretty ill at this point since we had wasted the day and were leaving with no bm's and no port removal. He put Taylor on a round of Prednisone to clear up anything there. We have one extra dose to take the night before surgery just in case the surgery can not be rescheduled for the next few days. This will make him mean and hyper as well as eat like a horse. We already had a crazy day due to the Albuturol. That made him a crazy man, he was bouncing off the walls. It was funny for a while, but then it was just insane.
There was a little fun in it all. Taylor shot a commercial. He was asked to do it a few days ago, but we turned it down since it would be the time he was in surgery. He didn't have nice clothes since we just came for comfort thinking he would leave with 4 bm holes and a port removal cut. He had on cotton camo outfit, but he was willing to do it, so we did it. He is one of 6 kids who sat with Deidre Downs, Miss America, to do a commercial for the Curing Childhood cancer car tags. He is the only one who looked at Deidre rather than at the monitor like the lady said too. Then when it is time to smile at Deidre he looks anywhere but there. He is sticking his tongue out and has his hands in his pants. I guess that is a guy thing and it is drives me crazy. So, he is in his first TV commercial looking crazy. Oh well! I have no idea when it is going to start airing, but we will keep you posted and you guys be on the lookout for it.
Taylor was a but afraid last night. He is not stupid he knew that in order to get the port out they would have to cut him and he didn't like that idea. He didn't seem to be upset about it today. He did ask when we finally left the hospital, "why didn't they take that out" while he pointed to his port. Hoe do you explain that?
Taylor, Jim and Paw Paw went to play golf and Gam maw, Ghen Ghen and I went to get Logan from Nana's and eat some lunch. We then came home and took a nap. Logan had already had a good nap, but he got right in his bed and played. I have no idea if he ever went to sleep, but he was quiet and I was sound asleep. After the guys got back home I went to eat and to Sam's with Guh and Donda. I needed a little break from it all after the stress of today.
In typical Kim fashion I have to over analyze things and wonder why we have to keep rescheduling this. Is it because we will need this port again? Is it that something really could go wrong with anesthesia? I know there is a reason but I am not real good at waiting to find out what it is. Please pray that this is the last set back. Pray that the port is removed and the last bone marrow samples are taken soon and that we can put this behind us. Pray that there is never a need for the port again. Pray that Taylor is NED forever. Pray for all the other cancer kids out there.
June 22, 2005 Day +812 Day #510 off treatment
UPDATE: The nurse just called and we have to be there at 6:30 to do APASS my least favorite thing to do at Children's hospital. He is scheduled for surgery and BM's at 8:15. Logan was scheduled for his 18 month old check up at 8:15, but I changed it so that I didn't miss it all. He will go on Tuesday at 8:30 in the morning and they better be on the ball since we have to be at Children's at 9:50 to talk to Dr. Berkow. Nana is going to keep Logan while I go to the hospital. I do not want to chase him all day long! It shouldn't take too long or at least I don't think so. We will update as soon as we can.
I must say I am on edge today. Here it is 1:50pm and we have not heard one word from Children's on a time for Taylor's surgery. I do not function well like this. I am very much a control freak and I need all the details. You all know that by about 3:30 I will have to call them myself. I also have not heard a word from the ENT, so I am assuming that we ill not be doing an adenoid and sinus surgery tomorrow. In that case I will be asking about doing it in a few months or watching it a little bit longer on a new med. I am not ready to put him to sleep again real soon.
I have some bad news to pass along. I am very heartbroken to share this news. Our fellow NB friend, Carter, has had some disease progression even while in 3F8 treatment and just finishing up chemo not to long ago. He will have to stop his 3F8 and start chemo again. He is only 5, but he knows that this is not good news. Please pray for this wonderful family and pray that a cure can be found for this little guy. Please drop by and leave some encouraging words for them. www.caringbridge.org/pa/carterfinger
I will update again later when I hear some news on the surgery tomorrow. Until then please pray for this to all work out, I don't want to postpone it anymore. Pray that it all goes smooth and that Taylor never needs a port again. Pray for Carter and his family and all the other families who are still battling this and other diseases.
June 21, 2005 Day +811 Day #509 off treatment
Well, it is a stay home day and luckily I got a lot of cleaning and laundry done last night and I don't have a lot to do today. We are watching "Where the Red Fern Grows" for the 10,000th time. Taylor calls it " About 2 dogs". He is so silly! The boys are playing well together today, so far anyway. I am so ready for a shower, but Logan is so not ready for a nap. I used to leave Taylor playing in the living room while I took a shower, but there is no way that I could do that with Logan. He would have the house torn apart and who knows what else!
I finally got both boys fed and Logan put to bed. The boys were so cute kissing each other before going to bed. Logan walked right up to Taylor with those lips all puckered. He then walked to his room, but ran out to give Taylor one more kiss then he walked to his bed and held his arms up to get in. Cool huh! He didn't make a peep, I guess he is either over that phase or sleepy. He seems to feel better today, but he still has a snotty nose. I am still waiting on the peds office to call and tell me that the PA went through for the Nasonex and we will head to get the scripts.
We went swimming again. I didn't even change Logan since he never gets in the pool and we didn't have the hose out. Well, in true Logan style he wanted in and got in with his clothes on. Once we got home and bathed Logan was out like a light. Taylor watched his movie, again. He fell asleep doing his breathing treatment. He is none to happy with those, but he will get over it. He doesn't mind the new nose meds. I thought he would get and when I squirted it in his nose, but he didn't say a word. Thank goodness!
With all the scan results coming in and all the stress and excitement that went with that I forgot to pass along some very exciting news. John Sweeny from the Red Cross called me last week with a great plan. Taylor is going to have a lemonade stand on July 8th at the Winfrey hotel while the huge summer blood drive is going on. The blood drive will be from 8-8 and as long as I have a baby sitter for Logan we will be there the entire time. Please, please come out and support both Taylor' stand and the American Red Cross. You can donate blood to help all the cancer and accident victims and then have some lemonade and buy a neuroblastoma bracelet to help raise funds for all our favorite charities and cancer research. Mark your calendars now!! Friday, July 8th 8-8!!! We will be working with Red Cross and Fox 6, so look for stuff on the news about it!
June 20, 2005 Day +810 Day #508 off treatment
Today has been yet another great day here at the Watts house. We started the day with our normal routine. Taylor took all his meds and I called in the refills for them all. I was going to go pick them up, but we added another one to the mix and we have to wait for a PA to go through, so it wont be ready until tomorrow. I don't want to make 10 trips to the RX so I will just wait. We have added Nazonex for his snotty nose. He will get one squirt once a day to clear up this sinus stuff before Thursday's surgery. We went to school. Taylor was so excited to be back at school with all his friends. He only went one day last week and we only went 3 the week before and that was it since mid May, I know he is ready to get back on his normal routine. After this week we should be. I had Taylor's class again today. He was fine today. I am hoping that I will be able to handle teaching him, I do not want to take the 3's, but if I have to I will. It was a little hectic, but we had a good day.
We met Jim after school then we came home. Logan took a nap in the car, but took another one once we got home. He doesn't feel good. He has a runny nose and it is getting red and raw from wiping it so much. I am giving him Triaminic, so maybe he will feel better soon. I hate it when either of them is sick because I always worry it is more than it is. Taylor got in trouble on the way home. He has been carrying a coloring book and a black crayon with him everywhere he goes. Today he colored his car seat. I made him wipe as much as he could off on the way home, but I am going to have to scrub it. He is eagerly waiting for Jim to get home so they can go play golf. He has been watching the clock and jumping every time the washing machine or dish washer made a noise, thinking it was Jim opening the garage door.
I have been emailing Meredith about his new meds to get him clear for anesthesia this week. I have a consult appointment next week to go over all the results, but I couldn't wait that long to know so I asked. All urines were normal and his MIBG was negative. The Ct, as you know, showed those same spots, but since we know the nebs cleared it up last time and the MIBG was negative, we are not worrying about it. He is set for BM's and port removal on Thursday. Are we confident? Yes and No! Usually the MIBG being clear is pretty reassuring that the marrow is too. However, one of the latest relapse cases is in the marrow and no where else, so yes, we are a little uneasy. However, we are praying and we feel sure it is His will that Taylor be cured of this disease forever. Taylor just got the port in July of 2003 when we swapped the broviac (exterior) line for the medi-port (under the skin). We did that so that he didn't need IV's for his 3F8, but could still enjoy a normal life in between cycles. He had the broviac for 9 months and the port for 23 months. We were very fortunate that neither ever had an infection. Once the port is out he will no longer have to go to clinic if he has fever. He can have Tylenol like normal kids. Yes, it will always worry us, but we will know it is not a line infection. I can not believe that in 3 days he will be completely free of any reminders of any treatments other than his scars from the port, broviac and tumor removal. Those are his battle scars that he can show proudly. This is the end. We will go to clinic though I am not sure yet of how often and he will now be scanning every 6 months, but we are not sure of which tests. I will let you know that once we meet with Dr. B on the 28th. Wow, I tell ya, on Oct. 10 2002, we never thought we would be writing this update. I am thrilled to be at this point and it is only by God's grace and your prayers and support!
Please pray for his surgery. Pray that the port removal is easy and painless. Pray that the bm's are indeed clear of any cancer cells. Pray that we get the sinus surgery and all that worked in. I have not heard from them yet, so I doubt that I can get it all done on Thursday. If not I will ask to do it when the next scans are and that way he can be put to sleep for bm's at the same time. However, we had talked about no more bm's so that may not work either. We will get it all worked out. I will call them tomorrow. Anyway, please pray for all our friends who are battling this and other things. Pray for those who are missing their babies.
June 19, 2005 Day +809 Day #507 off treatment
Happy Father's Day!
I hope you all enjoyed your day today. We did. We started with church. We haven't been the last few Sundays due to vacation and this and that, but we are back in the groove now. We came home and changed and then ran to the Dollar Tree. We got Logan a little pool to put on the deck next to the big pool, but he didn't like that either. All he wants is the hose pipe. We ate a quick lunch and then we went to Pippy's to give him his gift. He was cleaning up in his room and I sent the boys down their and they were so funny sneaking down the hall and peaking in each room until they found him. Taylor picked out his gifts. One was a fly swatter that looked like a fishing rod. It was pretty pointless, but cute and he was very proud of it. The other was a frame that we made and a picture of the boys in their race car shirts. We didn't stay long as Taylor was eager to get in the pool. He is a fish this year. We went over and got ready to swim. Taylor's jump of choice today was running and jumping onto a float. I must say it makes me a nervous wreck, but he loves it and it is nice to hear that devilish laugh! Logan stood by the pool and watered things and he sat on the steps for a bit. He didn't stay long today and we put him down for another 2 hour nap. That seems to be the trick, if so we will be playing with the hose everyday:) Gam maw cooked dinner and after dinner Taylor ended up swimming again. He loves it. We had to drag him out to go home and he wasn't too happy about it. Oh how I wish I could afford to put a pool in our yard.
We came home and went to bed. I didn't put my already water logged boys in the tub. Logan was exhausted even after his long nap. Taylor stayed up for a while. but was gone in a matter of minutes once we got him in bed.
Not much of an exciting day, but that is how we like it. I hope all you dads out there had a good day. Please pray that all test results come back clean. Pray for those who are still fighting this and other diseases. Pray for those daddies who are missing loved ones tonight.
June 18, 2005 Day +808 Day #506 off treatment
We have had a good day today. Much better than this day 2 years ago. Two years ago we were heading out to NYC to begin a 3 week stay and start 3F8. Today we went to Gam maw's family reunion. The boys loved playing in the gym. They played ball, played on the stage and pretended to speak at the pulpit. It was nice to visit with folks you don't see often. After the reunion we went to Gam ma's to swim. Taylor jumped off the side of the pool about 10,000 times. He learned to do cannon balls, but had to quit saying it since he did it too late and always ended up with a mouth full of water. He liked to do his own invention, the airplane. He did a belly flop with his arms out. He wears a one piece suit with floaties built in, so it doesn't hurt him to flop in like that. Logan did his usual, he stood on the deck and held the hosepipe. He got in the pool and sat in his little boat, but he had to bring the hose with him. He was about to fall asleep sitting there and he was shivering, so we took him and put him to bed. He screamed for a minute then he fell asleep. We ended up waking him up 2 hours later. He was in a wonderful mood after that long nap. Taylor had a good time with his uncle Dugan today. We don't see him much anymore now that he lives fairly far away. We all went out to dinner before heading in our own directions. Logan was good as gold for the first time in a while. He ate great and played while we ate. Granted, he never got in his high chair, but he didn't act up trying to get down either.
Once we got home we just sat around. Taylor made some art work to give out on Father's day, but other than that we did nothing. Logan went right to bed even though he had taken that long nap. He was so tired after a busy day.
Please pray that all scan results come back clear of any cancer. Pray that he is NED forever. Pray for all those who are still battling caner or other illnesses. Pray that Logan never faces anything like Taylor has.
June 17, 2005 Day +807 Day #505 off treatment
We have had another typical day. We went to Nana's to watch her kids for a little bit. Guh came over and we went to lunch. we had Chinese and Logan loved the tofu in the soup. We went to the toy store for a visit, but had to leave when Logan went bananas over a wagon or jeep as he calls it. The kids were tired, so we headed home. We actually swung by the trophy place first. It only took a minute to get his new name plate put on. Then we went home. I am doing laundry and the boys are destroying Logan's room. That is okay, his is easy to clean, just throw it all in the toy box.
I learned today that one of fellow NB friends passed away. Jay and his mom, Virginia, were the first people we met in NYC. They were always so sweet and supportive of everyone. Jay was the sweetest kid, always doing for others. He will be greatly missed. Please stop by and leave some kind words for his family. www.caringbridge.org/md/jaybarnett
Taylor was at it again with the funny remarks. He got a Batman toy and it was tied to the cardboard, but it came with a buckle. He told Guh to tie it on him and she told him that you put the buckle on it when you took it out of the box. He kept arguing and she kept telling him why it was tied in the box. Finally, he huffed and told her "Okay, just do what you want to". I just put Logan in bed and he must be tired as he didn't make a peep. He is trying to get his socks off. It is so funny, he is trying to pull them over the top of his foot rather than his heel. He doesn't seem to feel good today. He has had a bit of a runny nose today, maybe Taylor's isn't all sinuses?? He has had several real yucky diapers. I wont say that all that isn't bothering me a little, but I am dealing with it.
We got out the pool this afternoon. Taylor had a blast running and sliding down the slide. Logan just likes the hose pipe. We went out to eat with Christian and his mom and dad. All 3 boys were good! We all just came back to play for a while before they left and we went to bed.
June 16, 2005 Day +806 Day #504 off treatment
We had a much smoother day today at the hospital part anyway. We got there at about 9:00 and signed in. We went up to Nuclear med for the MIBG. We started that at 9:35. I hate to watch those, but I took a few peeks at the leg and feet part and all looked fine. I told her that the lungs showed gunk again and she saw nothing, so I am not worried. We were done by 10:00 and she went ahead and called the CT dept and they took us then rather than waiting until 1:00. By 10:30 were leaving the hospital. Yahoo! Guh and Taylor headed to her house and Logan and I dropped off some forms at the camp office and we picked up Taylor's race car that he left there when he ate with Miss America. Logan and I went to pick up Guh and Taylor and we went to grab some lunch and have a pick nick at the park. We played for a while, but the slides were so hot. Logan would sit down and say "ouch, hot". We went to Hobby Lobby and big lots where Taylor got in BIG trouble. He was showing out something fierce. We dropped Guh off at home and we headed home. Both boys fell asleep. We stopped to pick up Taylor's ball trophy and guess what? His name is wrong. It says "Tayor". I guess we will make a trip to the trophy place to get that fixed.
Taylor had Guh cracked up on the way home. He told her, just out of the blue, "I had a little diarrhea this morning". He didn't, in fact he didn't even potty before we left home. He also told her he wanted Diet coke to drink rather than tea. His reasoning was because he was getting heavy and that is what you drink when you get heavy.
We are just hanging out. I guess we wont do much tonight seeing as we have a lot of house work and yard work to do and Taylor can't go outside due to his behavior. He is going to miss a lot this summer if he doesn't straighten this attitude up.
Please pray for the scan results to all be great. Pray for all our friends who are battling diseases. Don't forget to buy your bracelets. We want to be able to donate a lot of money to our favorite charities. We are out of green bands and we only have a handful of Camp SAM left, so act fast!
June 15, 2005 Day +805 Day #503 off treatment
What a day it has been. Not necessarily bad, but LONG! The fun began when I could not merge onto I-65 since it was sitting dead still, so I got off at 6th Ave N and had to cross town. It took forever. We were still on time, but we would have been about 15 minutes earlier had we not sat in all that traffic. We got all loaded up into the stroller. You know it takes everything, but the kitchen sink to spend a day at the hospital. We got signed in and did triage. He weighed in at 35 pounds and was 101Cm, whatever that comes out to be. He got some frog stickers from Miss Cynthia and stuck them all over me. We had barely finished triage and registration when Kenna called us back to get accessed and to draw HAMA for NYC. I have no idea why they want to test his HAMA, but we will be shipping that off tomorrow. I had to get his SSKI drops first thing so that I could get another dose in him before he got the MIBG injection. Once we got that all settled we went up to the nuclear med dept. They immediately called him to get his injection. While we did that they fixed his contrast and tea cocktail. It took one long, brutal hour to get him to drink it then we had to wait 30 minutes until he could do the CT. We tried games, tricks, threats you name it to get that 4 ounces of contrast in him. It was awful! Finally they called us back. She took us to the new CT machine. We sat for about 10 minutes with me getting irritated that they were not doing anything when all along the new machine is so quiet that it had been scanning all along. It took 3 minutes to put the IV contrast and then literally a few seconds to finish the scan. It was nice. Once that was over we headed to eat only to find that the cafeteria was closed until 11:00, it was about 10:40. We decided to wait since we had forever to wait until the ENT visit and we would have plenty of time to eat then see Berkow and still have time to kill before the ENT visit. While we sat I happened to see a sign of lectures going on today and saw that Dr. Berkow was speaking, so we hightailed it to clinic before he left. It took no time at all to get in and out. His first words when he walked in were "his labs look great, the blood work is phenomenal". Wow, that is always good to hear! His exam was fine. He was gravely, but not wheezing. He left us to go read the CT. You guessed it, the lungs were spotty again. We are not going to worry about it and go with the reactive airways. If the MIBG scan were to show anything to be concerned with tomorrow, we will follow up, but otherwise we will not worry. Is that easy? Yes and no. We know that it all cleared up last time and I admit that the breathing treatments haven't been given as regularly as should have been. He will have to start doing more than 2 a day and that will tick him off, but what do you do. We will go back in on June 28th for a consult. I must say I am not sure why. I have never had a consult after scans. I have either been called or emailed. I guess it kind of bothers me that all of a sudden I need to come in, but that is after all testing and port removal, so I will try to not think about it. Maybe it is sue to it being time to change the length of time between scans and port removal and all that. Maybe I am just over analyzing again, as usual! Anyway, after the visit with Dr. B we headed out to lunch. We ate quick as Logan was throwing a lovely fit. We then went to the lobby to hang out and play. Guh finally had to take Logan off and get him to sleep. I stayed with Taylor and played. At 2:15 we went and signed in at the ENT clinic for our 2:45 apt. I have always very much disliked the clinic. This is the one that let him sit in the waiting room forever when he was fresh out of stem cell. Anyway, at 2:45 we were called to sign our paper work. I guess the Dr. isn't behind, but rather the registration staff. Logan woke up by then and we pulled a wagon up and down the hall for an hour. We finally got called back at 3:45! At least when we get to the back Dr. Hill and his lovely nurse, Mrs. Berkow, are super friendly. Yes, Dr. B's wife. She checked Logan out and then he went back out to Guh and she took him over for his repeat hearing test. It was perfectly normal and both tubes are opened, so he is doing great and will go back in a year. Dr. Berkow told me to tell his wife to take out that tube that was hanging on by a thread. It took her about a minute and it was out. Dr. Hill came in and welcomed us to "snot R us". Taylor needs his adenoids out, but we need to get a CT of his head to see how his sinuses look. We did not get a look at the head today, so we get to do it again tomorrow. My first question was, will he have to drink contrast again because if so he can wait and check out those sinuses when we do scans again. I can not do that again. Luckily, there will be no need no contrast, so he will be free to eat or drink. He will have his MIBG scan at 9:30 and then a CT of the head at 1:00. Dr. Hill does not work at Children's on Thursday, so we will have to wait until Monday for him to read it and call us to see if he needs any sinus surgery as well. I do not think it will be possible to add that to Thursday's port removal surgery since Hill is not there on that day. I hope we can get it all in one day since he doesn't need to be put to sleep so many times, but we will do what we have to. Finally at 5:00 it was time to go!!! Taylor rode with Guh to Don Don's to meet Ghen Ghen who took him to see Madagascar. He got home around 9:00 and was pumped. He loved the movie and he did stay awake through it all. He laughed at parts when he got the jokes, that is so cute. While he was gone we ate at Cracker Barrel. Logan was a good boy, but didn't eat very much. We came home and sat around.
It was a long day, but I am glad that it turned out with good results. Please pray that the CT is fine. I am sure that it is just asthma, but please pray about it. Pray that tomorrow's CT shows no cancer. Pray that the BM's are fine and the port surgery goes well and we never need it again. Pray for the consult.
June 14, 2005 Day +804 Day #502 off treatment
When will I ever get to sleep late again? It is my fault that I am so sleepy today. I got in bed last night at about 11:00, but I got interested in a movie and then when it went off the one that came on next was good too. I finally had to give in and go to sleep, but it wasn't until 1:00. Logan was up at 7;00 as usual and Taylor was close behind him. We have done nothing so far today. We are just watching cartoons and playing. The boys have destroyed Logan's room. It is almost Logan's nap time. You never know if he will go crazy or not. He is very sleepy, he is yawning and rubbing his eyes. I am going to hop in the shower so I wont have to listen to him.
Logan has been cracking me up again. He has a foam finger that we got at the SEC game. He had it on his hand and was walking around pointing and saying "boom boom". We do not allow them to play guns and shoot at each other, but it was pretty funny to see that a 17 month could figure that out. Taylor wanted to make me laugh too. I went into his room to tell him something and I opened the door as he was getting ready to come out. He had on a bright yellow ninja turtle shirt tucked into a pair of too little cotton shorts. He had on a dog collar as a belt, a hat, and these huge fly glasses with green lenses. He had several swords and water guns in his hand. He was going to work. I got out of the shower and he was in his shirt in underwear, so I guess he is off now. I tell ya, these kids are goof balls!
Just for the record sleepy head Logan whined a little, but never screamed. He was sound asleep when I got out of the shower. I am so glad that we seem to be getting past that. I was really beginning to get fed up with it! He slept over an hour and then we went to run a few errands. We were not gone very long. We stopped for a milkshake. I put some in Lo's cup and he slurped that right down.
I went to a party at Gam maw's so the guys had a guys night. They were good boys. Taylor was still up and waiting to show me a million things. He is now tucked in and ready for bed. I forgot to give him his SSKI drops until this afternoon. I do recall him getting the first dose in NYC only a few minutes before the injection, so he should be fine. I hope so. Here we take 3 drops for 7 days and in NYC we took 7 drops for 3 days. I hope that the small dose was enough. I am also out, so he can not take a dose tomorrow until they refill it. I can not believe I forgot. I never even thought about it. I was actually looking for his Emla to numb his port in the morning when I saw the drops. OOPS! Lets just pray that all will be okay with that!
Please pray for tomorrows CT, urine, labs, and check up. We will do the MIBG scan on Thursday. Pray that all scans and tests come back normal with no scary spots. Pray that he is now and forever NED! Pray for all the kids out there who are battling their on battle with cancer or some other dieases.
June 13, 2005 Day +803 Day #501 off treatment
Welcome back to Monday. I had Taylor's class again. He was much better today than last week. He is so snotty. I am hitting him hard with his nebs. He is not really happy about it, but I don't want any unclear scans.
We had a normal day at school. Taylor was so happy to see Ethan back at school. Logan's teachers wanted to know what he ate for breakfast because he was so wild. I said that was just Logan! After school we went to the bank and then came home. Logan slept the 30 minutes it took to go to the bank and therefore he was not going to sleep at home. We played in the house for a while and washed night night and baby. While the wash was going, I washed out the pool and refilled it. That kept them occupied. They ran from the front door to the back door while I cleaned it and moved it. It was no easy task either. It was full of rain water and lizards! I finally got it done and we went out for a swim. Logan loves the little palm tree sprinkler that is in it. He sticks his head in it and laughs. He also moved it and pointed it right at Taylor. It was pretty funny since Taylor just knew he did it on purpose. Who knows, he may have! Logan is learning to run away from me when he doesn't want to do something. He kept telling me uh uh when I told him to get out. I started towards him and he got right in the middle of the pool and crossed his arms. I had to go in after him. He is so sleepy since he didn't get a good nap. He also has an awful diaper rash. I don't know why it just popped up, but he cries if I even ask to change his diaper. Poor baby!
Taylor loves the water. He likes to run and jump in and just doesn't understand that it isn't such a good idea in his little pool. Maybe we will go to Paw Paw's to swim later on. We went to Paw Paw's, but the steps were not in the pool, so we didn't get in. We ended up going to Miss Joy's to swim. Logan was mad as a hornet because he wanted to get down and play. He just didn't realize it was much deeper than his little pool. Once he got settled into his little float he was fine. Both boys enjoyed a jump on the trampoline too. It was funny to watch them, they barely even made it bounce. Logan showed his tail when it was time to go. He wanted to take the little dive sticks with him. Joy gave him one, but he wanted them all and threw the one he had. He is so evil!
Once we got home Logan was off to bed. He was so tired after his big night of swimming. Taylor is still full of energy. He got out his video game. He loves his spider man game, but he is just not big enough to play. He doesn't know how to work the joy stick and he gets frustrated that he bumps into to stuff and gets stuck. He also can't read or do math therefore the games make no since to him. He has a game that is more his age appropriate, but he likes Spiderman. I was trying to tell him that it was a game for bigger boys who could read. Well, Mr. Smarty pants had a comeback for that. "Then why did ho ho bring that?" I quickly assured him that Ho Ho brought it because he knew he loved spider man and that he would learn to read soon. He then turned the game off and started showing me that he was taller if he stood on the arm of the couch and maybe he could read then. As you can all see, I have my hands very full here! Logan is up to his old tricks too. Taylor came running into the living room to tell me that Logan was doing something bad. I went to see what it was and I found Logan in his room with his drawer pulled out and all his pj's surrounding him all over the floor. AARGH!
Please pray for Taylor's upcoming scans. He will scan on Wednesday and Thursday of this week and have BM's and port removal next Thursday. Please pray that all tests reveal him to be NED now and forever. Pray for all the kids out there who are still fighting this fight. Pray for those who are missing their loved ones. Pray for a family friend who has had a stroke. She is a young mother of 3 and needs our prayers. Pray for the family as well as they help her get through this.
June 12, 2005 Day +802 Day #500 off treatment
Wow, 500 days off treatment. Isn't is amazing to watch those numbers grow day by day. We never had any plans of keeping up with it after he got out of stem cell, but I am glad that we did. It is fun to see the days go by as we update.
We had a lazy start. The rain and yucky weather drove us all to stay in bed. Taylor had spent the night at Gam maw and Paw Paw's. We cleaned up a little and then I got ready to go to a baby shower. Logan was dancing. It was very funny. Gam maw and I went to a baby shower and then house hunting. No, nine of us are moving, but they had a few open houses and a few furnished models and we were being nosey so we checked it out. We went back to Gam maw's and played and looked at photos of their trip. Taylor went over to Pippy's to play for a while. I must say it is pretty cool to have a grandparent on both sided of the street. When he is big enough to cross the street alone he will have it made. He can run back and forth. We got home around 6:00 and we got baths and got ready for bed. They had a blast in the tub with paint brushes. It is the small things that they love.
Taylor watched Honey I shrunk the kids and loved it. He had to get out the photos from the playground at Disney World and look to see if he saw things on TV that he played on.
Not a very exciting day, but that is all. Please pray for Taylor's upcoming scans to come back NED. Pray for all of those who are still treating. Pray for those who are missing a loved one.
June 11, 2005 Day +801 Day #499 off treatment
We have had the best day. We started the day rather early. We met Guh on 280 and gave her Logan. We went on to Sylacauga to set up for our lemonade stand. It was raining and a little chili, but that was okay because we still had a blast. Taylor looked cute as he could be in his "bad boy" Harley outfit. We set up under an awning and we were good to go. We had plenty of photos of Taylor during and after treatment as well as photos of his lemonade stand last year. The bikers or should I say "carers" rode in at about 10:00. I know I just made up a word, but the weather made them have to ride in cars. A few came on their bikes. It wasn't a huge turn out due to weather, but guess what, they still helped camp SAM raise a lot of money. They also helped Taylor raise over $100 at his lemonade stand. We had so much fun passing out lemonade and bracelets. Mr. Chuck even rode up for some lemonade. Thanks! He loved looking at the bikes and the NBC Hummer. Local news anchor, Ken Lass, gave Taylor a tour of the Hummer and he sat on some bikes. When the stop was over we loaded up, turned on our hazard lights and jumped in line with the riders. We had police escorts and it was fun. It was funny to see the cops rush up to traffic and stop them so that we could ride on through. It was pretty awesome to run right through all the red lights too:) We were the end of the line, so we had a motorcycle cop beside us. He had his head set on and was talking to the other cops. Taylor had a head set that came with his Darth Vader set and he had it on talking to the cop. He kept saying "breaker breaker 1-9". That cracked us up since we know the only way he heard it was in a country song. Soon we were at Camp SAM. It was packed as it was the last day of June camp and all the kids were still there as well as parents who were coming to pick them up. It was great to be there and see so many familiar faces that we only see once a year. We had a wonderful Bar BQ lunch then went to Mariner Hall to do the presentation of the money. Taylor got to stand up and be recognized for his work in raising money for Camp too. He didn't really care, but we were proud of him for being up their with the camp staff, Ken Lass, board members and folks that gave a lot of $$$. I pray that he is done with cancer and that we can use our journey in ways such as this. We want to give people hope, info etc on cancer. We want to lead people to God through our walking miracle and the proof that God is listening and prayer works. We want to raise money, awareness etc. to our cause.
After the presentation the kids took off to see the bikes. Taylor went to see the knew playground that is at camp. He loves the rock wall and was very upset that hurricane Arlene was blowing in and ruining his fun. It was very windy and rainy. Even though it was raining we had to go check out the new tree house. It is so cool! It is huge and only one way in, over a huge, swinging bridge. It was certainly swinging today between the wind and Taylor running across it. I could hardly stand up. It has hammocks and bunks for the kids to sleep on if they want a turn at sleeping in the tree house. Camp SAM is always so much fun. We are so ready to get back in July for Tot's and Tykes camp. We are never disappointed after a trip to camp. We are so excited to get to be a very small part in helping them out. We love you camp SAM!!!!
It was time to go and though Taylor was crying he was okay when Miss Lynn said he could visit the snack shack before we left. He chose some chips and we were on the road. He was asleep in no time. We stopped to pick up Logan. We got a call to come get Gam maw and Paw Paw from the airport. We were afraid they were stuck since their flights had been canceled and they rode stand by! They made it though.
We are home now after a long, but wonderful day. I love these days. These are mixed emotion days. I have spent the day with a group of people who are so amazing. I was with motorcycle riders who gave their time, money and hearts to these kids. I was with the staff who run camp and make these amazing events happen just for our kids. I was with Taylor and Jim and we have come so far in this journey. I was with other cancer kids who are still on treatment and some who are finished. I was with people that I am so glad I know and I wouldn't trade them for the world, but I would have never met any of them had Neuroblastoma not come into our lives 2 years and 8 months ago.
Please pray for Taylor's upcoming scans and tests. Pray that they reveal NED status now and forever. Pray for all the kids that are still fighting. Pray for those who are in remission to stay that way. Pray for those who are missing loved ones. Pray for all the bikers who came out to help today. Pray for camp staffers as they work endlessly for our kids. Pray for yourselves, our prayer warriors. We love ya!
June 10, 2005 Day +800 Day #498 off treatment
I can't believe that we are at day 800 since transplant. That is so amazing. We have been so blessed! We have no school today, but so much for sleeping late. Logan was up and screaming at 5:45. I am getting pretty good and tuning it out. He has been very good since he got up. Taylor has been too. He is in his room playing. He got a board game and he can't play with it with Logan around so he has been in his room all day. I hate that he is locked up back there, but it makes things easier when they are separated. Taylor wanted to lay in our bed last night, but he wanted to watch Clifford in his room. He said he would come back when it went off and of course he fell asleep before it went off. He was cracking us up. We kept hearing him laugh and talk to the TV. It was so cute. I love it when he "gets" a joke and gets tickled.
Logan has had me laughing this morning. He found a happy meal toy. It didn't do anything fancy. It had a little door that opened, but he didn't know that and when I opened it for him he got this look of surprise. He had a big wide mouth and big wide eyes. It was so funny! He has been talking on the phone and I have no idea what he is saying, but he means it. It will soon be nap time and I am dreading that. However, I have not even had a shower, so I can sneak away to the tub and not hear him for a while. Taylor wants to go somewhere, but I don't so I think we will just get out the pool and sprinkler. They will enjoy that.
Well, we have had a great day. Taylor went out to play for a little bit, but came back in due to rain and has not been able to go back out. He is very upset. He wants to kick the rain. He has sang "Rain Rain go away" a million times, but it isn't working. Logan went to bed at 11:15. He started his screaming as usual, but I got in the shower and didn't listen to it. He was asleep when I got out, so he did good. He slept until about 1:30. Not bad, huh! He has been in a very good mood. Taylor got mad when he destroyed his room and didn't want to clean up. He finally did it after several hours of whining about it. He is now mad because Logan got the last cookie. I guess we will be going to get cookies and chocolate milk tonight.
That is about all there is for today. It was so nice to just hang out at home and do nothing and have good kids with me:) The laundry is done and the house is cleaned and we are ready for the weekend. We hope you all have a great weekend. Please pray for Taylor's scans next week. I wont say I am calm, but I am not going crazy either. It is all in God's hands. Pray for those who are missing loved ones and those who are still fighting.
We have our lemonade stand tomorrow with Camp SAM. Guh is going to meet us there and get Logan. We will only be there about 20 minutes and we will then follow the bikers into camp for lunch. We are still looking at places to hold our Alex's lemonade stand. We will definitely have one, we are just not sure of when or where yet. Taylor and Logan both have Harley outfits to wear tomorrow. I hope it doesn't rain us out. We hope to sale a lot of bracelets and lemonade!! You can still by bracelets on line and you can donate to Camp by going to www.campsam.org
June 9, 2005 Day +799 Day #497 off treatment
I am not a happy person today. I got my pay back for having such an easy week at school. I had 2 classes today. They were actually pretty good with the exception of a few and one who was really showing out. Yes, it was Taylor. I am not so sure that I will be able to have him in my class in the Fall. He can not be controlled. I could not get him to stop whatever it was he was doing at the time and if I put him in time out he took off. I will kill him if I have to deal with it all day at work then at home too. I will have to see how it is going. He was showing his butt again, literally. That is one thing that will have to stop. He was spitting and hitting people and throwing toys. He got in trouble for just plain not listening. He was not the only one, but the others could be controlled. I know he just does it because it is me in the room, but I can't deal with it all year long. I must say it was good to see him play even if he was in trouble all day. The last time I had his class he was sick and he stayed in my lap all day.
I picked up Logan who had decided he didn't want his shirt on and had taken it off. He is a goof ball. He was so sleepy he could hardly hold his head up in the car, but in true Logan style he screamed like a nut for an hour before going to sleep for about an hour. He seems to be in a good mood now. They say he ate fine at school, but didn't really seem like he felt right. You all know I hate to hear those words. I have not really noticed anything, so we will keep an eye on him.
We have no plans tonight. Taylor can not go outside due to his behavior and yelling at me, so we will just be in the house. He was going to get to play in the sprinkler, but oh well. He has ruined a few things for himself lately. He was going to go to the toy store yesterday after his hair cut, but he pushed Logan down in the hair salon and therefore he missed out. He did play in the sprinkler yesterday for about 10 minutes and then it started raining and we had to come in. I wanted to let Logan do it today, but I wont be that mean to Taylor. We will try tomorrow since we are out of school. Maybe I can wear Logan out and make him go to sleep.
June 8, 2005 Day +798 Day #496 off treatment
I am hoping for a better day today than yesterday. It didn't start so good. It wasn't bad, but it wasn't fun either. It was 5:20 this morning when Logan started his blood curdling screaming. It gets earlier every day. He went to bed at a little after 9 last night, way past his bed time and he was still up early. I swear I think I could put him to bed at 4AM and he would get up at 6. We just shut all the doors and ignored him and he either went back to sleep or just got quiet.
Taylor has been in school for 1 year. Wow! He did great when he first went. I didn't get the screaming when I left until after I had his class for the summer and left him to move upstairs. He did great and I am so thankful for Lisa, Joy, Christi and Shannan for all they have done with him. He has learned so much and come out of his shell so much.
Taylor has been grumpy, but what else is new. They were fighting each other until time to leave. Logan was a pistol at school. He is starting to show his personality. It is very funny at times and very ugly other times. After school we met daddy for some chicken nuggets. Taylor was a little ticked off that he didn't get to play on the playground, but he was a big boy and left with out a fit. He had already gotten in trouble at school. Hold your breathe as you read this one, I can't even believe I am going to tell you. He had his pants down and was was running with his butt out all over the gym. I was so mad, but of course he wouldn't listen to me, so when Miss Christi told him he straightened up. After lunch we went to Angel Hair for some much needed hair cuts for the boys. Taylor was good as always and sat in the jeep while she cut away. Last time we went I had to hold Logan and she just did what she could. Today I put him in a little boat and he wanted no part of it. He sat in the jeep like Bubba and propped his feet up on the steering wheel and sucked on a sucker while she did her job. He did great! He didn't even get mad when I took the sucker to put him in the car. He did scream all the way home about his juice and I could not figure out what the problem was until we got home. It had leaked all over him and he was soaked. He is now in his bed since he had about a 10 minute nap and he is as usual, screaming his head off. He will for an hour or so then he will sleep. Taylor fell asleep in the car and he jumped up when we got home to go out and play in the sprinkler, but by the time I got Logan in and changed it has clouded up and looks pretty nasty, so I don't know what to do. We shall see.
Pippy and Pop brought my car back last night. Luckily, it just had a stopped up something or another and wasn't a huge ordeal. Thanks Pippy for fixing it. Well, that is about it for us today. Please pray for Taylor's upcoming scans and tests. Pray that they reveal NED status and do so forever. Pray for all of those who are still fighting their illnesses. Pray for those who are missing a loved one.
June 7, 2005 Day +797 Day #495 off treatment
Well, I hate to start an entry with bad news, but today I must. Sweet Emma Grace earned her angel wings yesterday. She was dx with stage 4 NB on the same day as Taylor. I am heart broken. Please pray for her family as they deal with her loss. www.caringbridge.org/ar/emmagrace Also, yesterday marked the 2 year anniversary of our dear friend, Austin's, passing. Please pray for Tina and Meagan and the rest of the family as I know this is a very hard time. We love you guys!! www.caringbridge.org/al/austin
This has been the worst day. Taylor has an 8:00 appointment for his speech evaluation. We left home at 7:17. It is hospital day tradition for him to get french toast sticks from Sonic. As I pulled into Sonic Jim calls to tell me that the keys to his car are in my car. I keep the spare on my key chain, so I had to go all the way back home to give him his keys. I was furious to say the least. I now did not have time to get Sonic and Taylor was real ticked off and hungry, so was Logan. I finally was on my way at 7:40. I got not very far before I was sitting dead still. It took a few minutes to get around a very bad wreck and we were back on the road. However, it was very short lived as we hit yet another snag and we were again sitting dead still. I called to tell the clinic staff that we were stuck and we would be late. I called at 7:55 and the operator said I couldn't talk to them because they don't open until 8:00. Well, that is all fine, but it made me ill since I was already ill, but all the times that I call the operator to get an Oncologist paged when we have fever and she sends me to a closed clinic because she doesn't want to page someone, it really rubbed me the wrong way. I called back at a little after 8 and they said keep on coming and we will work you in. I finally got to clinic at about 8:20. The receptionist was looking all confused and I was getting worried. She then informs me that his appointment is not in the hospital, but 3 blocks behind the hospital. I was so ill at this point I just wanted to scream. Well, she gives me directions to walk over there and we take off. I do not have the double stroller since I have borrowed Gam maw's car. Thank goodness I thought to get the small stroller or I would have been real ill that I had to carry Logan all that way. The directions she sent us were about 2 blocks out of the way, but I guess she was going the easiest way to explain. It was a much shorter walk back to the hospital, but we will go into that later. Anyway, we finally got to the right spot at 8:45. The receptionist asked me if I got lost and I about "lost" it on her. I told her no, that no one told me that I had to be at a different location. She asked why the courtesy reminder call didn't tell me that. That would be because we did not get a courtesy call. I had one fall call yesterday and it was a reminder for Bible school. Now we had to wait to be worked in since it is now an hour past our appointment time. Even though I got there 15 minutes before her next appointment I had 5 pages of paper work and then she swears that the pediatrician never sent a referral. I am not real fond of the office staff at the ped's office, but that is one thing I will give them, the lady that does referrals is always on tops of thins. We finally got called back at about 9:30. It took about 30 minutes to do the testing. I was worried that he would not cooperate and then when it was 9:30 and he had not eaten or even had anything to drink, I was really worried he was not going to do it. I would have just fell out and cried if she had told me to reschedule. Logan and I had to leave the room after a few minutes as he was real tired of being in the stroller. Taylor did very well. He talked to her and answered all her questions. Some of it was rather hard. It was things like touch a monkey but not before you touch a cat. Touch a cat but not before I touch a monkey. He looked at pictures and said their names, he repeated sentences and followed directions. He does have some articulation issues. He doesn't finish words. He says slee rather than sleep, cat rather than cats etc. He also has trouble with f, p, d and s which we already new, that is why I took him in. He also needs help with pronouns. He says us car rather than our car, me want to drink rather than I want something to drink. He also leaves out words. He says me want to drink and when asked where do you wear a hat he said on head rather than on my head or daddy work rather than daddy is at work. He will need speech therapy. It is a minimum 6 month wait to get in at Children's so I am going to call and get him in at the local elementary school in the fall. I would rather make that drive once a week anyway. That is where he will go to school so it will give him a chance to get familiar with it. We were finally ready to leave and wouldn't you know it, it is pouring rain. I just grabbed Taylor's hand and we took off running. He now had his heart set on eating at the cafeteria, but as luck would have it it was closed until lunch. He again was mad, but he got over it. He wanted Blue roof or IHOP to you and I. We went and he ate 4 silver dollar pancakes, eggs and a piece of bacon. Poor baby was starving! We made a stop by K-mart just to look and he flipped a buggy over. I was putting Logan in, luckily I had just lifted him and not put him in yet. Taylor was trying to get in even though I told him twice to wait and I would put him in. He flipped it over on top of himself. I knew he was okay and I let him have it. I about let a worker have it too. She was watching the entire time and could clearly see what happened and that I was not allowing him to do things to get hurt. Rather than ask if he was okay or if I needed help she stood there mumbling about you better watch 'em, don't let 'em act a fool. You better strap that baby in before he falls out too. Taylor did not fall out. OOOH, I was mad. To top it off K-mart didn't have what I was looking for and I was too ill to go anywhere else. We are home now where we are staying. It is raining off and on and we going to just hang out. I need to wash clothes, but I am not going to do it!
We attempted VBS last night. He had other plans. He was clinging to me like crazy. I could not put him down and if I tried he screamed. A lady tried to take him from me and he about ripped my shirt off. I just took him home. I was in no mood to stay with him, so he missed out on the fun. I thought I would go tonight and stay with him, but I am not sure tonight is the best night:)
Please pray that his upcoming scans are clear. Pray for his speech to be cleared up. Pray for all of those in need. Pray for all of those who are sick or dealing with the loss of a loved one.
June 6, 2005 Day +796 Day #494 off treatment
We went back to school today. Taylor was ready and was so glad to be back in the gym running with his friends. His best bud didn't come today due to a family member having an emergency surgery. Please pray for the family as the go through this time. Also, pray for our director and who family as they deal with cancer in their family. I on the other hand had a very easy day. I had 2 kids! I got my room all ready for summer while they played. It was nice. I don't know where everyone was. Taylor had to sit on the red line. I don't doubt it the way he has been acting. Maybe he will straighten up now that he is back at school. Logan had a good day, he was glad to be back too. I didn't want him to take a nap, so they kept him up, but he wanted to sleep real bad. Guess what, I put him to bed and he is screaming like crazy. So much for trying to get him good and sleepy and stop the screaming.
We were going to run a few errands, but it pouring down rain, so we just came on home. Our only plans for tonight are Bible School. It is not our church, our is in July. It is the church down the street from our house. Taylor says he wants to go and then the next minute he doesn't want to go. We will see how he does when I take him. I know he will love it if he will just give it a try.
That is about it. I am going to go down stairs so that I can not hear Logan any more. Maybe he will go to sleep soon, he has been at it about 30 minutes so far. Please pray for Taylor and his upcoming scans. We have his speech evaluation in the morning. I will let you know what we learn. I know he needs some speech therapy, but how much is the question. Pray Emma Grace who is starting her 10th week in ICU. Pray for her family who is very tired and worried. www.caringbridge.org/ar/emmagrace Pray for all our friends who are battling cancer and other illnesses.
June 5, 2005 Day +795 Day #493 off treatment
I have bad news. I have just learned that Jamie (Beebo) has relapsed. Many of you may know him and his family as the wonderful group who has the page with all the NB kids listed. I am devastated that he has relapsed. It is hard to deal with that news. It is also hard because he had no pain, no symptoms. He went in for scans and his BM's were not good. That scares the hell out of me. I hate the fact that you can go into scans so confident and still get a slap in the face. This disease has got to be stopped. These children have suffered enough, us parents have suffered enough. You all can imagine that I am totally freaked out with this news coming a few weeks before scan time. Taylor looks and feels great, but so did precious Jamie. Please pray for him and his family as they have opted not to treat. Stop by and visit his page and leave some kind words. http://www.warriors.beebo.info Please start your praying now for Taylor's scans and that they again (and forever) reveal NED status.
Did everyone get to see Taylor pick his nose on TV. How about that! It was on purpose since he could see himself on the monitor. He had the funniest expression when he realized he could see himself. I love that stuff, but Jim does not and she caught him off guard. We had fu and it was great to catch up. Amy, my cousin has been doing the telethon for years and we are always on a different day, but not this time, we were in the same time slot. It was great to catch up! It was great to go visit with our nurses up on 4-tower. Taylor acted all shy, but they know better.
We got the bathroom finished today. Yahoo! That was a lot of work for a towel rack. Never again will I make a small change in a room:) Guess what I did? I cleaned the play room. It was a terrible job that took me nearly 2 hours, but I am so glad it is done. It also kept me from hearing Logan scream. He has decided that he will scream non stop at nap time. I just turn the radio or TV up and let him go. Well, you can't hear him down stairs, so he screamed himself to sleep. I know he was tired since he was awake and screaming at 6:45 this morning.
We had to go get Gam maw's car since my air decided to die today. They are on vacation so luckily there was a spare car hanging around. Pippy is fixing my car. We had to go to good ole wal-mart and get some milk and lunch stuff for school tomorrow. We basically hung out today.
Please pray for Taylor's upcoming scans. Pray that he is NED forever. Pray for all out friends who are fighting a battle of their own.
June 4, 2005 Day +794 Day #492 off treatment
It is Saturday and we are home. This is the first Saturday we have spent at home in a while. We are not just sitting around, but we are home. We have had 2 trips to Lowe's and I am sure there will be more. We have the bathroom painted and the towel racks that started the project are hung. We have had big issues with the faucet and that is still waiting to be completed. We are doing the floors now. It is a little project that exploded into a big mess. We should be done tomorrow. We have to stop here in a bit to get ready to go to the hospital and do the telethon. I don't think there will be any new projects any time soon. We have plenty to keep is busy without starting something new. We need to get Taylor's swing set area finished and I still need to get the play room cleaned. I am avoiding that task!
We were up at the crack of dawn thanks to Logan. He went to bed nearly 2 hours late last night and he was up about an hour earlier. He has been bad today. I am not real happy with him right now. He threw things all threw Lowe's and screamed until we gave it back although we were trying to make a point and not let him have it back. On the way home and he and Taylor we looking at each other and making one another mad. I guess that will be a car ride staple between the two of them. Just something to look forward to! Once we got home he was screaming because he couldn't go in my room with his daddy. He then proceeded to make my day when he ripped the wallpaper down in the kitchen. I was able to tuck it under the molding and hold it up for now, but it will have to be fixes. I could have killed him. That one little bit of wall paper could turn into a weekend project:) I put him to bed and he went ape. Jim took him with him on another trip to Lowe's. I stayed behind and painted. As much fun as that wasn't, it was quiet. Logan took a 20 minute nap on the way and that was just enough to rule out any further napping. He played pretty good with Taylor for a while and then he started rubbing his eyes and laying down, so I put him back in bed. That was not what he had in mind and he let me know. He is quiet now with an occasional outburst. I hope he will go to sleep and sleep for several hours. He has to be sleepy after getting less sleep and getting up so early. He will be with Aunt Jeanna tonight while we go to the telethon. It is at 9:00 so he needs to be in bed anyway, but there is no way we could take him and do a decent interview.
Taylor has had a few melt downs of his own. He got woke up this morning when Logan walked in his room and slammed the door and proceeded to hit him in the head. He came up swinging and yelling "get out, baby". He never did go back to bed. He is mad that he is hot, but I told him not to wear what he had on and he pitched a fit, so he wore it anyway. He has on a long sleeved camo shirt, camo wind pants and rubber boots. He has a bungee cord and a dog collar around his waist as a belt. It is a very nice look. It could be the next fashion fad. I tell ya what, if I could get a dog collar around my waist, I would wear it as a belt in a heart beat! He got into some shorts and went out to play but after a tearful lunch. He didn't want to eat so he acted ugly and spilt his drink all over the fireplace. He refused to eat his food and gave it to Logan and got ill when he had to choose something else to eat. He finally ate and is back outside.
It has been a very normal day, but it has also been very frustrating. I am at my wits end. I am so glad to go to school Monday and get a 4 hour break. I need a week off when they get to go to school. That would be heavenly! Well, that is all there is. Be sure to watch the Telethon today. 6-10 and 10:30-11 and again tomorrow afternoon. You will get to see us at 9pm give or take a few minutes. It is live TV, so it may be a little off. You will also get to meet many friends and staff from the hospital as well as other CMN locations.
Please pray for Taylor's upcoming tests and scans. Pray that it all reveals NED status. Pray that we can get his allergy and sinus issues. Pray that Logan never faces anything like this and That Taylor never does again. Pray for all our friends that are battling their own battles.
June 3, 2005 Day +793 Day #491 off treatment
I cant's believe it is Friday. I have to go to work on Monday. It will be hard to do after 2 weeks off. Taylor is so ready. He asks every morning if we are going. I went to get Taylor this morning. We went to IHOP with Guh. After we ate we went to the playground again. Taylor had a blast. By the time we left he could do the fire pole by himself. That didn't mean that it didn't make me very nervous, but he was doing it. Logan loved it too. He was climbing and sliding and having a great time. It was rather strange to be there. We have not been to that park since Taylor was about Logan's age. I was swinging Logan today in the very swing that Taylor used to swing in. I was so glad to be standing there watching a now long, lanky, healthy 4 year old playing and his short, stubby, healthy 1 year old brother running behind him. God is so good!
Logan cried a bunch when it was time to go. Taylor did too, but he was screaming because he walked up the slide and stood up to soon and slammed his head into the medal pole. I know it hurt! We stopped for some Milo's tea since Guh was out of tea at home and then we headed for Guh's house. Taylor was furious that he didn't get to go back in. He got over when she assured him he could come back soon. Logan fell asleep on the way home. I was glad since he quit screaming, but just as I was afraid of, he was not going to have any part of napping once at home. He screamed and had himself an awful fit. I am sure the UPS man that came by thought I was in here beating him. I finally got him up, but he is going to go back here in a little bit as I have got to get in my bathroom and start taping so we can paint the trim. I can not do that with him awake. There is a huge mess in my bedroom floor and it is all stuff he doesn't need to mess with. If I lock him out who knows what he will get into.
We are going to go out to eat with Gam maw and Paw Paw tonight. They are leaving for vacation tomorrow and they will miss us. Taylor is mad that he doesn't get to go. He says no one takes him anywhere. Poor pitiful child! He just got back from Disney World. He says he just wants to go see how you get on a boat. Nice try, huh. Although, Logan is an angel on trips, so if they want to take him..... Just kidding!
I am sure that there will be more to update later, but for now this is it. Please pray for Taylor's upcoming scans. Pray for him to be NED forever. Pray that Logan never faces anything like it. Pray for Emma Grace, Bailey, Davis, Cam, Morgan, Sarah, DJ, Carter, Carolyn, Christi and the way to many more NB kids as well as all the cancer kids and families out there.
Don't forget the Children's Miracle Network Telethon tomorrow night!! June 4th 9pm!!! It will be on most of the evening Saturday and during the day on Sunday. Please watch and meet some of our friends and staff from Children's and other CMN locations!
June 2, 2005 Day +792 Day #490 off treatment
It is Thursday and we have had a very low key day. Daddy went to bed and woke up with a fever. He did not go to work today. He stayed all snuggled up most of the day. By late afternoon, when the dentist called to see why he was not at his appointment (oops) he got up. We took the faucets off the sink and will be putting a new one in this weekend. I wont even describe how awful it was. It was so old and rusty that it just wasn't going to come off. Needless to say, it is off now! We got the walls painted too. We need to do the trim and get the towel racks hung, that is what started this project, and we will be done. I love the color, I would love to have it all through the house, but not bad enough to go through the hassle of moving and covering furniture.
Taylor is going to spend the night with Guh tonight. He is in a rather crabby mood today. I am not sure if he is just tired or if he is just being bad. He laid on the couch for a long time watching TV and then he finally got up and went outside. He wrote Jim's name all by himself with chalk out on the driveway. We have written it for him in the past and he copied it, but it has been raining and there is nothing on the sidewalks, so he did it all by himself.
I talked to Guh and they had a good night. Taylor wanted to eat at Don Don's and play, but the play area was locked up. He was very angry and refused to eat and wanted to go home. Well, he got over it when they went to the park. He had the place to himself and loved it. They went back to Guh's where he finally ate all of his dinner and some oatmeal. He played camping and legos and cars and who knows what else. He went and laid in his sleeping bag (his choice for sleeping arrangements) and fell asleep before Guh got ready for bed. He likes to sleep in the floor as it is camping to him. Guh has a very high bed and when I asked him if he wanted to bring his sleeping bag or take the rail off his bed he chose the sleeping bag. That works for me.
Please pray that Taylor's upcoming scans are clean and clear with no suspicious areas. Just clear NED! Pray for little Emma Grace. Emma was diagnosed on 10/10/02 just like Taylor. She has been in ICU at St. Jude for a very long time. She has had some very scary moments lately. Please pray for her and stop by and visit her at www.caringbridge.org/ar/emmagrace Pray for all of our other friends who are battling cancer or other diseases.
June 1, 2005 Day +791 Day #489 off treatment
I can not believe it is June. This year is flying by. I love it and I hate it. It gets us so much closer to the 3 year mark of NED status yet is rushes life too. I guess we can't have everything. We had a good day. Logan didn't have sleeping late on his agenda for the day. We were up at 7:30. Taylor woke up and went to the living room to watch Jim leave and then he got back in his bed. He woke up at about 9:30 and was very upset that he missed daddy leaving. He doesn't remember any of it. We had to call him and talk to him for a minute then he was okay. He was ready to eat. He has put away the strawberry oatmeal and the cheddar chex mix, that is his new favorite snack. It has been raining all day long, so we finally just bit the bullet and went to Hone Depot in the rain. We picked out paint and bought all the tools needed for this surprise project. At least I hope I got all the tools needed. I have gotten everything out of the bathroom except a shelf that Jim will have to get down. We will get busy on that tonight. Hopefully it will be quick and painless!
Other than that little trip out in the rain we didn't do much. I have the house clean and only 2 more loads of laundry to do. You all would be so proud of me. I have folded and put away every load and my bedroom floor doesn't look like the dryer threw up. Now the question is can we keep it this way. Tomorrow night Taylor is going to Guh's house and my plan is to conquer the play room. I don't even want to think about it. It is beyond horrific. I don't know why I bother it will be torn up again in no time, but I will feel better if it is clean for a little while.
We have a few more days until we go back to school. It will be hard for me after 2 weeks off, but Taylor is ready. I hope that Logan does okay with it. I don't expect him to be upset, but you never know. We have a very busy doctor schedule this month. Please pray that all of the tests and scans fine and show NED status. Here is a list of our appointments. June 7th, Speech evaluation June 15th, CT scan and MIBG injection and an appt. for both boys with Dr. Hill, the ENT. Taylor will be checked for sinus damage due to radiation and Logan for his tubes. June 16th, MIBG scan. June 23rd Taylor has bone marrow and aspirates as well as port removal. Logan has his 18 month check up, but it may get changed depending on Taylor's time frame which we will not know until that week. I am tired just thinking about it all and the stress and worry hasn't even kicked in yet. I must say that I am not that worried, but there is always some fear at scan time.
Please pray for all scans to be clean. Pray that speech issues can be resolved. Pray that sinus issues can be resolved. Pray that Logan's check up is fine and he continues to be fine. Taylor's 18th month check up was his last well baby check up as he started limping a few weeks later and the rest is, as they say, history! Please pray for Emma Grace who is still in ICU and having a rough time of it. Pray for Davis who has had some fever. Pray for Bailey who is finally home. Pray for Todd who has not updated in a while and I hope all is well. Pray for all the other kids and families out there who are fighting this or some other battle.
Don't forget NBC Saturday and Sunday for the Children's Miracle Network Telethon. Taylor is scheduled for 9pm Saturday night.
May 31, 2005 Day +790 Day #488 off treatment
Taylor will be on TV this weekend. Saturday, June 4th at 9pm. We will be on the Children's Miracle Network Telethon on NBC. It may seem boring, but you will here some wonderful stories and meet some of our friends and see what a wonderful facility we have right here in our own back yards. I will let you know if the time changes, but it shouldn't.
Hello. We are back to normal. I was dreading going back to work and so glad that I am off this week and so glad that I was only working 3 days a week. Well, I am glad that I am only working 3 days a week and will get some time to do things, but today I wish I was at work. Logan slept late, well, he was awake at 7:30, but he played in his bed until about 8:30. I thought that was a good sign, but I was wrong. Taylor had gotten up to watch Jim leave and climbed on the couch and fell asleep, so I stayed in the bed. I got up and got Logan some food which he threw. He kept slapping Taylor and pulling his blanket until he woke him up. He was jumping off the fire truck bed that is still in my living room. He pulled Taylor's video game off the drug it around. He was pulling mine and Taylor's hair. I had had it when he stood up on the back of the couch. I put him in his bed where he is now screaming bloody murder. We are supposed to go meet daddy for lunch, but if he is still acting this way we may not.
I remember another funny from our trip. There is a part in Splash Mountain where Brer Fox has Brer Bear tied up by his feet. The last time we rode it Taylor asked with all seriousness, "where does Brer Bears poop come out?" I told him "same place as yours" and he pointed out that there was no hole. I guess the Disney people need to get a little more anatomically correct. I had to laugh, but of course then it spurred a full out discussion on where poop comes out on every living creature. The lady in front of us thought it was funny too.
We did make it to lunch with daddy. Logan slept through it. We did a little window shopping and then I left the boys at Guh's while I went to get a haircut. I wasn't gone very long and therefore Taylor was really not ready to go home, but I got him out. We got home just as the rain really started. We just hung out at home all night. We started hanging up some of the things I bought from all these candle parties and got in a bigger jam. Don't you hate that when you try to make a simple change and it make a bigger mess. I bought new bathroom towel racks and stuff and now the walls will have to be painted. Those dinky, cheap ones that were in there were hung like it was gold. There are huge screw holes and of course the big square that didn't get painted. Of course, the new ones do not even come close to going back in the same spot, so we get to paint. Hey, now we will have one room that isn't white. We did not have furniture when we moved in so we went safe and painted everything white and now I want color, but I don't want the hassle of painting. Looks like I will get one room painted like it or not. The boys and I will be going to pick out paint tomorrow. At least it is a tiny bathroom and wont take much.
Logan was very mad at me when I put him to bed. We couldn't get anything done with him under foot and wanting to play choo choo. He is so funny, he holds on to us and we walk in a line and say choo choo, but he always wants to do it while we are busy. I put him in bed and he was fit to be tied. He finally went to sleep.
May 30, 2005 Day +789 Day #487 off treatment
Happy Memorial Day!
We all slept late. We got up about 8:30. That was nice. We just hung out until about noon. Logan and I went to the grocery store and Jim and Taylor cleaned out the garage. I came home and un packed and cleaned up. I started the laundry, but that will be a long process. I had 3 loads to do before we left and now I have added all that I un packed to it. UUGH, I dread it at least I am off this week and other than that the house is clean. How long do you think it will stay that way? The boys are now outside playing and I am trying to get this all update. I know that I have left out so much. I should have typed it out each night while we were gone, but we were so tired by them time we got settled at night that we were out like a light.
Well, it doesn't get much more boring than this update. We are too tired to have any excitement this week. I still have not checked on our friends, but please pray that I will find good news on their pages. Pray for Taylor's upcoming scans and tests. Pray that they show him to still be NED and that he will be NED forever.
May 29, 2005 Day +788 Day #486 off treatment
I was up at 7:30, but I guess that is ok since I went to bed at 8:30. We had some breakfast then went to get the boys. Paw Paw and Gam maw came over to help put the top back on the jeep. We were going to need both cars today and since it was pouring rain we had to get that top on. I left and went to a candle party and Jim kept the boys. They went to the Mall and to Wal-mart and then came to Mary's. After the candle party we had a birthday party for Andy. Taylor was upset when he got there because he forgot his drum stick he bought in Disney World. He bought it just to bring and use on their drums. He got over it when he and the other Taylor started playing and having a good time. Logan wanted upstairs so bad, but he found a ball and was having fun. We left around 8:00. Logan fell asleep on the way and stayed asleep. Taylor didn't, but he had taken a very god nap rather late in the day. He stayed up and played for a while. He was ready for bed when I pulled out the Power Ranger movie. It was very quiet, so I went to see if he was asleep, but he was sitting straight up, mouth wide open watching the movie. It was funny. I don't how long he played, but I know he got up because he was tucked in on the top bunk and I checked on him and he was in the bottom.
We are back to normal days with little to talk about. Please pray for the upcoming tests and scans to go smoothly and reveal that he is still NED. Pray that he is NED forever.
May 28, 2005 Day +787 Day #485 off treatment
4:00 came mighty early. We were in the lobby with a happy Logan a snoozing Taylor. We had a 30 minute drive to the airport. Getting checked in was hard since Jim had to carry all 5 bags himself while I kept the stroller to the side. Going through security wasn't bad this time. They were not concerned with the nebulizer. I got us some breakfast and went down to our gait. It was not too bad of a wait. Logan had to be walked again, but he did fine. Both boys slept on the plain and woke up as we landed. Taylor spotted Paw Paw in the window, but Logan didn't. We came straight home and got ready to go to Taylor's team party. He did not want to play his game, he was tired. He did not want to go to the party, but once we got there he had a blast. It was so nice. We had a pool party and a cook out. They boys each got a certificate, Taylor's is for the most improved hitter and they each got a wheel barrow full of goodies. Taylor was jumping off the diving board and loving it. He slipped and fell and slid his right leg all the way down the board and cut it up pretty bad. That didn't stop him from playing in the moon walk or the swing set. He did not want to leave, but we drug him out. We thank you Johnny and family for the great season and a great party. We went to Gam maw's and got her and Logan and then had dinner. The boys spent the night with her. Thank you Gam maw! We left the boys and got home around 8:30 and we both got in bed. It has been a long time since I went to bed at 8:30.
We had a fabulous time. It went to fast just as we knew it would. We hate that we didn't get to update. I am sure that I have left tons out since I am updating a week later, but I will tell you things that I think of. Thank you all for your prayers of safe travel. We are off again this week and will just be hanging out. We will go back to school 3 days a week the following week. We will also start a full Dr. month this month. We will go in for a speech evaluation June 7th, a CT on June 15th, a MIBG scan on June 16th and BM's and port removal on June 23rd. Please pray that all tests and scans are clear and show no cancer. Pray for Bailey who is finally coming home!! Way to go big guy! I have not yet had a chance to check in on all our caringbridge friends, but please pray for them.
May 27, 2005 Day +786 Day #484 off treatment
It is Friday, the last day. I knew this week would fly by. We went back to the Magic Kingdom. We rode all the same stuff. We added It's a Small World and Peter Pan's flight. Pete Pan has been closed and opened today. Taylor loved it. He loved it last year, but this year he actually knows who Peter pan is. We rode that several times. We ate at Pinochio's place. It was very good. Jim and Taylor went to ride Peter Pan again while I changed Logan. Taylor got a Peter Pan hat. We rode the blue line 2 times just to rest and relax a little. We then went to the Carrousel of Progress. I have never done it and I have to admit that I liked it as corny as it was. I have that "Great Big Beautiful Tomorrow" song in my head. Most people come home with "It's a Small World" in their head, but not me. Jim and the boys did the Buzz Lightyear spin while I did my all time favorite, Space Mountain. I then took the boys on the buzz ride. Jim took them on the Winnie the Pooh ride. We went into Toon Town to ride the Goofy Barn Stormer roller coaster. That was Taylor's favorite last year. We did it about 5 times in a row. This year he was not so impressed after riding the big roller coasters. Logan went back into Micky's house to meet more characters. He met Minnie and was kissing and flirting big time. We got a cute picture of him puckerd up to kiss her. He was last in line, so she kept playing with him and kissing on him. He loved it.That was about it for the day. It was about 6:00. We gave Taylor the option of going to another park to ride a ride or going to the hotel. He chose the hotel. He would have been happy with the play ground and pool all week. We went back to the hotel. We ate dinner and then got Logan a caricature drawing and some last minute goodies from the gift shop. We went to the kiddie pool for a little while. We then went to the room to pack. Both boys got a bath and then played while we packed. We were packed and ready to go by 11:00. Not to bad except that we have to be in front of the hotel at 4:30 to catch the bus to the airport.
May 26, 2005 Day +785 Day #483 off treatment
I can't believe that it is Thursday already. We went to Down Town Disney and did some shopping. Taylor found Lady and the Tramp stuffed animals. Logan got a Miko. He later met Miko and though he has no clue who that is, he did great with him. He brought the stuffed animal with him and it made the character play with him and hold him. We ate at Rain Forrest Cafe again. This time Logan ate a lot, he ate 2 slices of pizza. Taylor told us that Disney World makes him eat. It did too, but I think it is because they knew it cost 3 times more to eat there than at home! We went to the Magic Kingdom again. Taylor got to meet Brer Rabbit from splash Mtn. and he was so excited. He had a little toy log that had all the Brer characters in it and he showed it to him. They rabbit acted all excited and kept pointing to himself in it. Taylor got a kick out of it. We rode all the standards. We rode the race cars. Taylor dove daddy and Logan. They both had fun. Logan, Taylor and I rode the tea cups. Logan loved it and was not concerned with the spinning. We played in another water area. We rode Pirates of The Caribbean. Taylor was afraid, but got over it. Logan wined a little and then he was asleep. Taylor was in line to meet Captain Hook and was very excited about it, but Wendy and Peter Pan came out and he left line to go see them. He was so pumped up about it. Logan and I sat on the bridge waiting for Daddy and Taylor to come down the splash mtn. hill. He was eating pop corn. I made him stop so that Taylor had some when he got back. He then decided to stick his hands down his throat and he puked up all that pop corn. Daddy had to go buy him a t-shirt to put on since he was already wearing his change of clothes. We had some other excitement today. Taylor got his arm stuck in between the wall and the hand rail. It took 2 or 3 minutes to get him out. He was screaming and the lady behind us was having a panic attack. I finally had to just grab him and jerk him out. He has a bruise, but he is fine. He got to choose where he wanted to sit since he had some trauma. He chose to be the driver on that ride and he held those arms up the hole time. After our ride we headed to the train station on Main Street where daddy and Logan had held us seats for the Spectro magic parade. Both kids loved it. We didn't stay for Wishes, the firework show. Taylor saw it last year and Logan was ready to go. I really got stressed tonight getting on the train. Both kids were asleep and we had to figure out how to get them and the bag and the stroller on the bus. It was fun. We got back to the room and dressed both boys for bed. Neither of them woke up. We got ready for the next day and we went to bed too. It is very tiring doing all the walking and being so hot, but Logan is adding to it. He has been very trying this week. I am about ready to tie a string around his neck with baby and his cup on it. We are so tired of picking it up. I have had to hand wash baby several times after he has thrown it in water, chocolate and the bathroom floor. yuck!
It has been one year since Taylor got his silver teeth. He come so far. He has always been leery to show people and if anyone mentioned it he would close his mouth. Well, the other night we were watching a show and a little girl that was playing with him asked him to see his teeth and then wanted to show her daddy and he just grinned from ear to ear. I hope that he can handle it that well until they all fall out and come back in white. He looks normal now all though it did take some getting used to. I guess now he will look funny when they come in white.
May 25, 2005 Day +784 Day #482 off treatment
We slept late today. Okay, so it was like 8:00, but that was good four us. We went back to MGM today. We did the Bugs Life 3D movie. Taylor didn't care for it. It had a stinger that came out of your seat and stung you and ripples that went under your butt like roaches. It was a bit much for him. He took his glasses off and watched without it coming so close. Logan fell asleep. We went to the "Honey I Shrunk the Kids" play ground. The kids loved it. Taylor found a spider web to climb on. Logan found a leaf slide to play on. It was very hot in there and we were ready to go, but not them. Taylor rode the Tower of Terror. That is a 13 story free fall that repeats its self 5 or 6 times. He screamed, "I want to go to the hospital" all the way down. We went to the 50's Prime Time Cafe for lunch. Logan was bad, but Taylor liked it. He thought it was like Leave it to Beaver's house. It was all 50's decor and the waitress was your mom. The dessert menu was on a view master. It was cute. We went and played who wants to be a millionaire. It was a lot of fun. It was just like the real thing. Logan was very loud and bad during it. We finally got him to sleep and then we parked in a shady spot. Taylor and Jim went to see a stunt show. I never went back to see it, but it was really good according to them. Taylor bought some Mr. Incredible figurines and was very upset that we had them sent to the hotel room. We couldn't convince him that we really did buy it and that it would be waiting on him. He figured out after we started getting packages each night. We went into the Animation building not knowing what we were going to see. Well, Taylor was happy. It was the Incredible mom, Mr. Incredible and Mr. Freeze. He did some posing for that. He loved it. We had plans to see the Power rangers. It was listed that they would be in at 3:00. That was the same time as the stunt show, so we just didn't tell him that it was happening and then he wouldn't be sad if he missed it. While we sat and waited for the time to come for them to enter the stunt show arena we heard all this music. It was dead where we were there were only a few people wandering around. That music was an unannounced Power Ranger visit. Taylor was first in line to meet all of them. He was posing and talking and having a blast. He has had a Power Ranger movie for a month or so that he will not watch. Now he is dying to get home and watch it. He also got his "dark Mader" sword. He has no idea who that it, but he is into it. Logan woke up about the time the show was getting started. We played with a little umbrella that was motion detected and would rain on you. We headed for home once that show was over. We ate dinner and rested back at the room and then headed back out to the Magic Kingdom. Taylor and I did Splash Mountain and Big Thunder Mountain. Logan and Jim went to Toon Town to meet and greet some characters.
May 24, 2005 Day +783 Day #481 off treatment
We had yet another early start. Today we had a character breakfast at the Animal Kingdom. Today Taylor was awake and really enjoyed it. He ate great again as did Logan. Logan did better with characters coming by, but still not real sure of them. Our photos didn't come out today. The lady said we would be able to see it later, but we didn't get a chance to buy them today. Oh well! After breakfast we started checking out the park. Taylor and Jim rode Dinosaur first. We had forgotten how scary it was. Dinos jump out at you and look very realistic. He came off crying and said he would not ride that again. While they did that Logan and I rode a dino rie of our own. It is like the Dumbo ride. He liked it. He had no fear, but he showed no real excitement either. He gets that from me. All my pictures of stuff like that when I was a kid are just me looking very ho hum. After the guys got back I went and rode and they went to a play area and climbed on a dino. Both kids loved that. We headed towards Kali river rapids and rode that. Taylor loved it. We got pretty wet too. Taylor spotted Daddy on the bridge and waved at him. Taylor took daddy on that ride before we headed off to something else. Taylor and I did the Safari ride and we saw some cool animals. Taylor was doing great at spotting animals that were hiding. Logan was asleep so he and daddy waited outside the Safari ride. They went on it later. We found some lunch then we headed over to Dino land to play some games. I was walking around and I saw some one I knew. Can you believe in all those people I find someone I know. We saw Christy, one of Taylor's nurses. He was asleep and didn't get to see her, but it was nice to see her somewhere other than the hospital. We all really enjoyed the Lion King show. It was people dressed like monkeys and doing things on a trapeze. A man also ate fire and stepped on fire. I think we all sat with our mouths open on that one. We went on a train ride to Rafiki's island. It was rather boring. It was a petting zoo that neither kid cared for. Taylor did get to see Stanley. We rode the train back over and found a spot to sit. Taylor fell asleep and we just walked around. We had dinner reservations at the Rain Forrest Cafe and didn't want to leave the park and have to come back. It really stressed me out to load up the kids and that big stroller to get on the bus. We woke up Taylor and let him ride the river rapids one more time. This time we got absolutely soaked. We were headed to dinner after that, but I assumed we would have a long wait and we would be dry by the time we got inside. Wrong, we were sat right away and it was freezing in there. The kids liked the moving animals and thunder storms that go on while you eat. After dinner we went back to the room. Taylor and I went swimming while daddy bathed Lo Lo and put him to bed. Taylor had fun jumping off the side of the pool. He kills me with that. He can jump in over and over and just pop up and do it again, but you poor water on his head in the tub and he acts like he is dying. He was very mad when I made him get out. In fact, he got in trouble for jumping back in while I got out. We sat on the side of the pool for a little bit and dried off before going in. He was looking at the sky and saw only one star. He asked me where they all were. I told him I didn't know, but he had the answer. He said, "look, they are on the building". We were in the All Star resort and the buildings had stars all over them. Pretty smart answer fro a 4 year old. We headed back to the room and went to bed.
May 23, 2005 Day +782 Day #480 off treatment
We had another early start, but this time it was not fun seeing as we had not gotten in bed until 2 in the morning. We had to be up and out by 6:30 in order to get to Chef Mickey's in time for our character breakfast. Logan was in a good mood and ready to go. Taylor slept until food was in front of him. We rode the monorail and Logan could have cared less. Oh well! They both ate great. Taylor loved the Mickey waffles. Logan loved it all! He did not love the characters. He did not really cry when they came by, but he made it clear that they need not come back! Taylor loved it. He was awake by then and ready to party. He was swinging his napkin and dancing. We finished up and rode the monorail over to the Magic Kingdom. It was great since we got there so early we were able to ride anything with no wait. Taylor ride Splash Mountain. We did not know how he would do. It is a 50 foot plunge into water at the end. He wanted to do it last year and wasn't tall enough. He LOVED it. He did it probably 10 more times. He also did Big Thunder Mountain and again loved it. He had no fear at all. He help his little hands up all the way, of course, we were holding on to him, but he thought he was as big as all the adults holding there arms up. It was so great to look at his facial expressions as he rode. He would have the biggest smile and that hair blowing all over the place. There was a little play ground under a bridge right between those two rides. Logan had a great time playing there while we took turns taking Taylor on the rides over and over. We stood on the bridge and watched people come down the hill of splash mountain. Logan liked that. We went back to the room mid afternoon and took a break. It was so hot and the kids were getting ill as were we! We ate lunch and played at the hotel. We went back to the park around 6:00. We went to Epcot. Taylor did test track. He had to wait in line about 45 minutes and wasn't real happy about it, but he did good. There were cool cars and movies and stuff to look at as we wound our way through the line and that occupied him. He loved it as usual, no fear. It is a race car that they put through tests. They make you go real fast then slam on the breaks and send you through real extreme heat and cold and other things. He loved it and jumped right back in line with daddy. Taylor and Jim rode Soarin', the new ride. I never got to go back and do that one, but they say it is cool. We also never got to do Mission Space. They say it is so intense that they keep barf bags on the seats. That is intense and we can't wait to get to ride it! We found another water spot where the kids played for the longest. Logan loved trying to step on the spouts to stop them and he always got a face full when he stuck his head on it to see why it stopped squirting. After a little bit of playing we headed off to change clothes. It was getting close to closing time, so we headed back to the hotel. We rested for a while and then Taylor and Jim headed back to the Magic Kingdom which was staying open until 2:00AM. I stayed behind with a screaming Logan. I bathed him and put him in his bed and then I got in the shower. I could still here him screaming. I thought for sure that some one was going to bust in the room thinking I was beating him. He was going insane. I got out of the shower and got ready for bed and then I started getting the diaper bag ready for the next day. He was quiet as long as I was in the room. I climbed in my bed and he laid down too. Jim and Taylor came in around midnight. Poor Taylor was sound asleep and sitting up guzzling a coke. By the way, he did great with no tea. He wouldn't have any juice or milk, we slipped it in a few times, but he did fine with coke and root beer. He did get some tea a few times at the Harbor House, our favorite place in Orlando:)
May 22, 2005 Day +781 Day #479 off treatment
We had an early start this morning. We arrived at the airport at about 7:00. We got some breakfast and sat and watched the planes take off and land. It kept Logan occupied about 5 minutes. We went on through security which was very interesting. I had a "medicine" bag which had all of Taylor's asthma stuff in it including the nebulizer. They searched it and took everything out of it. She rubbed it down and put all the papers in a machine that looked for explosives. It took forever, but I finally got through. We had a while to sit, but the boys did good. We had to walk Logan a lot and let him run around. Taylor started the day by pooping in his pants. I know he is excited, but I had no other clothes for him and I was not real happy about it. I had to just wash them and let him wear them wet. What more could I do? I ran into John, the Red Cross guy who has helped us in the past with our drives. It was great to see him since we haven't worked with him in a while. Finally, it was time to board the plane. We were almost in the very back. It was a plane with 2 seats on one side and 1 on the other, so I got both kids. Logan fell asleep right as we started moving and slept until we landed. That is exactly what Taylor always did too. Taylor colored this time and never took a nap. Well, he actually drifted off as we were landing, but he woke right up and got off the plane. We had to catch a bus to take us to our resort. Once we got there we still had a weight. Our room was not ready. We went to eat lunch in the food court then took off to the play ground that was there. The kids were in hog heaven. After about an hour or so we were able to go into our room. We put away our carry on bags and headed to the park. Our luggage had not been delivered yet, so we had to make our first purchase and get some sun screen. It cost a fortune! We headed out to MGM studios. The kids were in awe by it all. Taylor has been plenty of times, but was at a good age this year to really enjoy it. However, he fell asleep soon after we got there. We did the Indiana Jones show first and Taylor liked it. Logan didn't like being still, but he did okay. We were able to get rider swaps to allow one of us to stay with the kids while the other rode a ride and then swap. We did that and rode the Tower of Terror and Rockin' Roller coaster. It was fun! We stood in line for Fantasmic, a water show. That was total chaos. We finally got seats and it was a great show. Taylor was afraid of all the bad guys and didn't really like the fire, but otherwise liked it. Logan fell asleep. We met a lovely family that asked about our orange bracelets. Taylor is not real sure about all the lines since last year he was not made to do that. So far he has done okay. Tonight the park stayed open until 1:00 AM. We stayed until about midnight. Taylor was having fun. Logan was asleep and it had cooled off, so we were comfy sitting and waiting. We caught the bus back to the room and went to bed. Well, tried. Luckily when we got there all of our luggage was there. Taylor drifted right off. Logan had had a 2 hour nap and wanted no part of bed time. I put him in bed with me thinking he would lay still and drift off and then I could move him. Wrong! He talked and wiggled and tickled. I finally moved his play pen in between the two beds and put him in it. He did fine that way since he was right by us. I have no idea how long he played because I was gone in a matter of seconds.
May 21, 2005 Day +780 Day #478 off treatment
We had a good day today. Taylor didn't want to play ball. He did pretty good until the 3rd inning and he was crying and came out to the bleachers with me. He was raring to go when it was time to line up and shake hands with the other team. He had to bat for the other team too as they were way short on people, maybe that is why he got so tired and ill. Just a theory. The boys came home and played while Guh and I went to get out finger and toe nails done. It was nice. We brought lunch home when we were done. Logan took a nap while Guh and Taylor played. Jim and Taylor went to play golf and Guh and I took Logan to Wal-mart for a few last minite items. I am sure there is still something we have forgotten.
Please pray that we have a safe and happy trip. Pray for no mysterious fevers or the such. Pray that Taylor has beaten cancer for good. Pray for all the others out there who are fighting a battle of their own. Drop by to leave some kind words for Emma Grace as she continues to be in ICU. www.caringbridge.org/ar/emmagrace Also, stop by to congratulate miss Sarah on being 3 years post diagnosis and for her emergency MRI being clean!! www.caringbridge.org/nc/sarahsmith
May 20, 2005 Day +779 Day #477 off treatment
We have had a great day and a fast week. Can you believe it is Friday? Yahoo! Today was average other than we had to say goodbye to Taylor's teacher. She will not be back for the summer or next year. We will miss her dearly and we thank her for all she did for him this year. Thank goodness Mrs. Christi is staying and since they are sisters we can still keep up with Shannan. The rest of the day was normal. We came home and went to work. I have cleaned up and I am ready to pack. Gam maw is going to get the kids out of the house for a bit tonight so we can finish up.
The boys school pictures came in today. Their class ones are cute. Logan had to be held in both of them and he is making an Elvis face in one of them. Taylor has realized that he will miss school the next two weeks. He is mad, but I think he will get over it. We changed our return flight. Taylor has his team party and trophy day that day and we wanted to get back and do those things. We will land around 8:30 that morning. He has a 9:00 ball game that he can play if we get here, but I doubt it. He will have a team party at 11:00 and trophy ceremony at 6:30. I will give you more details as I get them.
Taylor has kept me laughing lately. Right now he is eating pringles dipped in strawberry yogurt. Sounds yummy huh? I told him the other day that he would have to help Logan when we got on the plain since he had never flown before. He quickly told me that he had flown before and I assured him that he hadn't. He said, "uh huh, he was in your tummy". He is very right, in that case, Logan has flown 8 times, he is an old pro. If only he could be as still and quiet as he was on those trips! I can't even remember what all he has done. He just came in from playing outside and he is beyond dirty. He will have to have a bath, he can't go to bed that dirty.
We have a ball game at 9:00 tomorrow morning and then Guh and I are going to get our nails done. Hopefully we will be done packing and can just hang out tomorrow, but if not I guess that will be tomorrows plan. We have to be at the airport very early Saturday morning. I will update tomorrow if we have time. We will have the computer in Florida, but we do not know if we will have internet access. If we do I will update everyday if not I will post as soon as we get settled back at home.
Please pray for a safe trip and no rain:) Pray for Taylor's continued success against this beast. Pray for Sarah who has been brought in for an emergency scan due to a limp and leg pain. www.caringbridge.org/nc/sarahsmith
May 19, 2005 Day +778 Day #476 off treatment
We had a great day today. We left home around 9:00 and took Logan to Nana's. He didn't care that we left him, he was eating french toast sticks. Taylor and I headed to the Camp SAM office. He did not want to go. He cried and begged to go to school or anywhere not to have to go. He was so afraid that I was going to leave him. I assured him that I would not leave him and to be a big boy and go with Miss Lynn. He had a good time playing in the office while we waited for it to be time to leave. I think that it helped that he played for a while with the other 2 kids going. He climbed right in the van and was on his way. The parents stayed at the office and ate and just talked about life with cancer, treatments, Ronald McDonald houses and the such. You know, normal stuff! It was normal for us. Taylor and Yanna were both DX in 2002 and Olivia in 1998. The kids were gone about 3 hours. When they got back none of them wanted to go home. Taylor and Yanna were chasing each other and have a grand time. He walked in the building holding Lynn's hand and talking her ear off. I knew he would have fun if he went. I also know he will loosen up if he gives it half a chance. She said he was a very good boy. He ate great. Luckily, that is one hurdle we have crossed, he will do some eating. He got some goodies and I got a huge cookbook.
Taylor was able to give Miss America, Diedre Downs, a bouqet of flowers. Lynn said he just marched right up there and did it. He did great. I so wish I could have seen it myself, but she will get us pictures. When I asked who he saw he told me "a princess". How sweet. I can't wait to tell Diedre.
After we left the camp office we went to Nana's to get Logan. He was asleep after screaming himself to sleep. He had been good up until nap time. He was ready to go when he got up and changed. We went home and cleaned up a little and watched Taylor play outside. When daddy got home we went to Wal-mart and got very important items, tea and chocolate milk. We are home now and I should be cleaning, however, I am watching TV. I have so much to that I don't know where to start. I start one thing and move to another and I get into a bigger mess than I had to start with. Oh well, I will be up until 2AM Sunday morning, but I will get it done.
Please pray for Taylor and that he has beaten this beast forever. Pray for all the kids that are fighting cancer and other diseases.
May 18, 2005 Day +777 Day #475 off treatment
We had a wonderful turn out. Thank you to all who came out and gave blood and helped us work the tables. The Red Cross was right on time and came toe the right church:) John came by and checked on us. Thanks John for making it all come together! We were ready to go by a few minutes to 2:00 and all of us PDO gals started giving. Paw Paw came to get the boys not before Taylor and his new best friend, Griffin, wrote all over each other with markers. It is funny now that we are sure there is no marks on the walls and it wasn't permanent. We had a great time. It was a long day and night, but it was fun to get to meet new people and put names to faces that I see on Sunday morning. We had fun joking and learning all about each other. It is amazing how many people have been faced by cancer. unfortunaletly, just about every person that I talked with last night had had it themselves or a loved one had faced it.
We ate at church and that was fun too. We normally don't go to Wednesday night supper, but it sure was good eatin' and Taylor loved playing with all the kids. We collected 33 productive units of blood. That is pretty good, I think. It was nearly 8:00 before the last person was done and about 9:00 by the time we got it all packed up and headed home.
Taylor went to ball practice with Paw Paw and Guh took over the care of Logan. Taylor came back to the church after practice and hung out with us. He was good. He enjoyed people asking about him and being the center of attention.
It has been a a great day and was worth all the stress I felt planning it. We will have another one next year. Please pray that Taylor never again needs transfusions or chemo. Pray that he is NED forever. Pray for all his friends that are fighting a battle of their own.
May 17, 2005 Day +776 Day #474 off treatment
Blood drive tomorrow!!! May 18th 2-7pm. Pleasant Hill United Methodist Church. This is right off exit 1 on I-459. You can't miss it. We look forward to seeing you all there.
We are out of Green CureSearch bracelets!!! You may still order Taylor's and the red Camp Sam bands. We appreciate all your help and please continue to pass the word about them.
We have had a good day. I had Taylor's class for the last little bit of the day. We were in the gym and he was wild as a buck. I had to put him in time out. He didn't like that at all and it didn't stop him from being wild. Next year will be so fun when we get to spend all day at school together then come home together! The day flew by, in fact, I didn't even get a chance to get my lesson plans done and I have very little time to get that finished before June is here. What a problem to have!
After school we went to McDonald's to play again. We went to a different one and it had a totally different play area. I was a little nervous with this one as it had stairs rather than different tunnels. Logan managed to make his way to the top. He would have went all the way to the slide, but he fell into a puddle of water. I am not going to even think about why the indoor play area had a puddle of water. I am going to assume that they had cleaned it earlier. He was stuck. He was so wet that he couldn't get his feet to grip and climb out. Taylor had to go pull him out. He then decided that he was going to hand out on the stairs until I had to go in after him. I tried sending Taylor in for him, but he thought he was playing and would go farther up rather than coming down. They had fun. Logan was almost asleep in the car and I put him to bed once we got home. I can hear him talking, but he isn't screaming so I will leave him alone. Taylor just let out an awful scream and I took off to see the problem. He told me that a "soft stick got him". What would you think? I thought snake. However, he was right, it was a soft twig with thorns on it and it scratched him. Okay heart, go back into the chest!
We had a very good morning. Taylor was good and the only argument was over his pants. He didn't like the plaid ones I had out. Last year he loved them. In fact, it is the pair that we left in the dryer in NYC and I had to by another pair since he loved them so. Now he says that everyone will laugh at him if he wears those pants. I guess we are just at the stage where those things are funny. Oh well, we got new pants out and he was fine.
That is all that there is to tell. Not much, huh! Please remember to come and bring all your friends to the blood drive. Please pray that Taylor is NED forever. Pray for all his friends who are battling this or other diseases.
May 16, 2005 Day +775 Day #473 off treatment
Hi all. It is Monday again. I hope this week flies by. I am so ready to skip town and get to Florida. We had a very good start to our day. Both boys were in a good mood. Taylor tired to protest the breathing treatment and Augmenton, but when I said take it or stay inside he quickly took all meds. He did get in trouble for knocking Logan over, but Logan did have his night night. He just ripped it away so hard he knocked him over. Those sort of things are to be expected, but the nasty attitude he has had lately has got to go.
School went fine. Taylor got in trouble by me again for hitting me while I was in his room. I don't know if he is trying to tell me to get out or just showing out, but it makes me mad. He did get to play outside today. He has cracked me up too. He was in a camo shirt with spider man on it and black cotton shorts, nothing fancy. He had to take his tennis shoes off and put on his saddle oxfords because they are golf shoes.
I started my packing. I have all of Taylor's stuff packed and the kids bag is almost full. I hope Logan's clothes are small:) God is looking out for us. The luggage stuff that never came and was causing such a problem came today. That makes me feel better knowing that my luggage will get to where it is supposed to. Well, at least it has a better chance to get there with the right tags. Lets pray it gets there. If you see us and we look bad it is because all the clothes are clean and I forbid anyone to where anything that I will be packing:) I know that is awful, but I am ready to go and can't bear the thought of more laundry before we go.
Our first choice for the lemonade stand fell through, so if anyone has any ideas let us know. Taylor was invited by Camp SAM to be on the Rick and Bubba show, but it is going to be next week while we are gone. Watch and see if you see any camp kids. If the dates get changed to the next week we will do it, I will keep you posted. Rick and Bubba comes on Turner South in the mornings, but I am not sure of the times. It is on 94.5 on the radio form 6-10AM.
Reminder: Taylor Watts Blood Drive Wednesday, May 18th 2-7pm. Please come out and give blood. If you can give you can come out and help us work the refreshment area and registration area. We want this to be the best drive to date, so bring some pals. We can't wait to see you there!!
May 15, 2005 Day +774 Day #472 off treatment
Happy Sunday. We had an interesting night. We went out to eat with Chris and Temp. The guys when to drop Taylor off at Paw Paw's to spend the night and the girls went to Wal-mart. We came back to watch Meet the Fockers. Jim told me that Taylor had said his right foot hurt again, but it was his toe and not his ankle. I have decided that he is just talking or his shoes are bothering him since he is so very sporadic talking about it and it is a different spot every time. We didn't get in bed until nearly 12:00. I was gone in no time. I woke up at 2:00 and I couldn't go back to sleep for anything. I had this horrible nagging feeling in the pit of my stomach. I couldn't sleep, I was hot, I was cold, I was miserable. I assumed I was worried about Taylor and I tried to shrug it off. I turned the TV on and that didn't help. I tried to think if there was anything in the yard since it was raining. All I could think of was the pool and that didn't matter. I figured I was up for the day at that point when all of a sudden at about 2:45 it hit me. The jeep was outside in the pouring rain with no top! I hit Jim and told him it was raining and he laid back down and told me "so". It took about 2 seconds for him to realize what I meant and he was running outside. Good thing there are drain plugs in the floor:)
The boys all went to church with Gam maw today for her Birthday. I went to church to announce the blood drive one last time. Don't forget it, May 18th 2-7!!!! I met them all at Olive Garden for lunch. We went back to Gam maw's house and just hung out. We haven't been home very long. Logan is in bed and mad as a hornet. He is so tired though, so he will just have to get over it. Taylor is eating yogurt and watching TV. He has been pretty good today. He has had a few moments of talking ugly and hitting, but nothing to awful. He is very tired too and I am sure he will be falling asleep somewhere while he plays. He is getting excited about Disney. He has a calendar that we park things on. It has an airplane on the day we leave and all the other days are X-ed out, so he can see exactly when we go. I think Jim and I are more excited than he is.
Please pray that this week is quick and we are on our way to Disney soon. Pray that all goes smoothly with the flights and luggage:) Pray that the week we are there goes slow:) Pray for the blood drive to be a huge success. Pray that Taylor is NED now and forever. Pray that we have good scans in June with no more scary times. Pray that the port removal happens with no problems. Pray for Bailey and Emma Grace as they fight so hard to beat the beast. Pray for all the other kids that are fighting this or other diseases.
May 14, 2005 Day +773 Day #471 off treatment
It is Saturday morning and we seem to be picking up right where we left off last night. We stayed home and did nothing. Logan was allowed to go out with daddy for a little bit and Taylor sat at the front door and screamed he was very mad. When it was time to come in Logan joined him at the door screaming:) It was a lovely sound. Taylor had to go to bed early due to his attitude. He got mad because he couldn't put a puzzle together, a puzzle he had already built and dumped out 10 times in 5 minutes. He ripped a puzzle piece in half and threw it. He was spitting mad when I put him to bed yet he was asleep in about 3 minutes.
He woke up ill that Jim was gone and he didn't see him leave. He had left before 6 to go help our best buds work on their house. He got over that quickly. He was pretty good most of the morning until it was time to do his breathing treatment. He was so ugly about it. I know that he hates to do it and that he gets tired of it, but he is so ugly and pitches the worst fits over it. I know he has been through a lot, but tons of kids do breathing treatments. He can still play and watch TV while he does it, it isn't that bad. He is doing it right now and just a jabbering about it. He is mad! He is mad that his shoes hurts his foot. I can find no reason for it to hurt. He says only one hurts and it is the opposite foot that he complained of the other night, so we proved he just likes to run his mouth about it. UURGH!
We are home now, well, Logan and I are. Jim and Taylor are playing golf. We went to the game and Taylor and his shoe did fine. He was hitting great! We even sold a few bracelets. Thanks to all of you who have bought one or some. Your help is greatly appreciated and will allow us to give back to the charities that have helped us along the way. After the game we went to play in the all the bounce stuff. It was fun day. Logan even got in a bounce house for a while. He loved it. He and Jim went on home since he was hot and tired. Guh, Taylor and I stayed and played. Taylor is so different from this time last year. He did play in the stuff last year, but only if no one was in it and for a brief time. He stayed right under me. He was more interested in getting prizes last year. Today he was right in the middle of all the big boys and loving every minute of it. He thought it was pretty cool that "Mr. Rusty" was there. We had to go back and buy more tickets and he was still mad when it was time to go. He got over it when he learned that a chocolate milk shake was on the way. After a trip to Sonic we went home to play in the pool. He looked goofy. He had on his life jacket to play in an inch of water. I guess he was being cautious. I really think he wanted it so that the cold water wasn't hitting his skin. He isn't stupid! Logan was napping but when he woke up he was right in the middle of that cold water. He got in some ants and has bites all over his little feet. We took them in at that point. The bites already look better after we put medicine on it. As soon as Taylor was dried and dressed he and daddy went to play golf.
Taylor has had a few moments of being bad or wanting to be bad. He pushed Taylor a few times. He also threw his cup when we said it was time to leave the ball park. However, he has been fairly good. He is easier to calm down when you tell him he can't play if he starts it. I hope that he realized yesterday that we meant business. I felt as big as an ant when he was watching Logan play outside last night, but that is exactly what he needed.
For some brighter news. Today was the day 2 years ago that Taylor was declared NED. Isn't that amazing. As rough as yesterday was, as hard as it was to make him stay in the house, I am so glad that we have a normal problem. I can not believe that it has been 2 years. I remember it like yesterday. Dr. Sande had us in a isolation room since he had some snot, go figure, and she was reading the computer from out in the hall. We had just had his post transplant evaluation. When she said No Evidence of Disease we all did a happy dance. I also remember her saying that the spot on his cheek was completely gone and that we would need to talk with Dr. Russo about radiating the skull or not since the face spot was the last to clear up. We had no idea that he even had a spot on his cheek until then. We always thought he just had some on his skull and forehead. As you all know he did the skull radiation anyway. Better safe than sorry. We had to nip those sluggish spots before they tried to come back.
Please join us in praising God for the healing has performed in Taylor's body. Pray that he allows him to continue to be NED. Pray for all our friends who are still fighting. Pray for Bailey who is waiting on a transplant and not feeling well at all. Pray for Emma Grace who is still in ICU.
May 13, 2005 Day +772 Day #470 off treatment
It is Friday the 13th and I feel it. I am at my wits end with Taylor and his attitude. He is good at school which is good. I am glad that he behaves where it counts, but if he sees me he gets crazy. I went to put something in a closet in his class room today and he started hitting, pushing and biting me. I tried to talk to him and reason with him and he would just pull away and wiggle around until he got free. I popped him and he pops me back. I am on the verge of losing with him. I told him to straighten up or no outside time and he didn't care. He kept right on until I took all his outside time away and then he pitched a fit because he couldn't go outside. I have asked him why he acted that way and he keeps telling me because he wants to go outside. I can not get him to understand that he is not going out because of how he acted and that I need to know why he acted that way. He is now cleaning his room or supposed to be rather, but he isn't. He thinks we will give in and let him go out, but he isn't. I may even let Logan go out when Jim gets home. That will really eat him up. I don't want to be mean, but he has got to stop this ugly behavior he has had lately. Disney is giving us grief over transport issues and Hannah home blew right past out house and I called a week ago to have them come get all this junk. All of the hassle has added up and I am on the edge of exploding today. Luckily my kids were good toady and Taylor seems to be feeling fine. Of course I am a worry worst and always wonder is he being this way due to a health issue or just a defiant 4 year old? I guess the question will always be there.
We have no plans tonight. We will just play it by ear. It will not be a fun adventure if any due to Taylor's behavior. Tomorrow Taylor has a game at 10:15 and then we will just do whatever. I hope to get my house cleaned so that I can pack next week and not worry about cleaning, but I am sure something better will come along.
My day was brightened when one of Taylor's teachers called and said she had just been contacted by the bone marrow registry. She is a 6 out of 6 match, perfect! How amazing is that? I think it is pretty cool to know someone personally, who is a match and willing to give of themselves like that. Way to go!
Please continue to pray that Taylor has beaten this beast for good. Pray that he never again faces cancer or its treatments. Pray for those who are still fighting. Pray that those who are NED or in remission stay that way. Pray for those who are missing a loved one.
May 12, 2005 Day +771 Day #469 off treatment
I had another icky day, but it looks as though it is just Mr. Taylor learning to push mom's buttons. I had his class as well as mine today. We were rolling along smoothly until snack. He refused to eat and he is usually begging for more. He did eat 2 bowls of oatmeal for breakfast so I tried to brush it off. We went back to the room and started to read. He was so pitiful and on the verge of tears as he shivered and told me he was cold. I let him sit in my lap where he stayed for the rest of the day. He would not play, giggle or anything. It was a little to much for me. I was convinced he needed to go see Dr. Berkow and have cultures and blood counts checked. I am certain he has a sinus infection. He did have some green snot yesterday, but today it is so thick he can not even blow it out. He has told me several times that he has a headache, so I am sure that it what it is. However, watching him today was killing me. We went to lunch where again he ate a few bites and told me it was coming up. He swore he didn't need to throw up, so I was beginning to be suspicious. When we were trying to figure out what was wrong with him before he was diagnosed, I remember always thinking that if he were 3 or 4 he could tell me. Well, now he is and I don't know rather or not to believe him. ARGH, I guess I will never be happy! Soon it was time to head to the gym and play. He was the first out the door and took off full speed to the bike and rode like the wind for nearly 40 minutes. Once gym time was over and most kids were gone he took off with a school/church bud, Griffin, to the walking track and ran. He was sweating like a pig, definitely not cold anymore. Hmmm... Was that a miracle healing or a 4 year old using mom's presence? I hope this is not a picture of what next year will be like. In August he will move into my class. That should be fun!
On the way out the door we got a call from Guh. We went over to her house for a bit. Her neighbor has a birds next in her bird house. It has 6 baby birds in it. She let us look. I have never seen real baby birds. They were so tiny and cute. They had their mouths wide open looking for worms. Taylor liked it and looked very closely, but Logan loves it. He was screaming "Hi" and "eyes". That was about all you could see. It is like they are born with adult eyes and grow into it, they were huge. It was funny! He played outside for a while and then went in to play legos. We left around 4 to go home and get ready for him to go play golf. He got mad at me. He changed clothes as usual, but he put on a winter outfit and I made him take it off. He was furious. He went out to "practice" before daddy got home. He did a breathing treatment before going. I think now that it is hot and he is so active, we will have to bring the inhaler to school. He gets to coughing something awful after he plays. I hope he outgrows it and asthma doesn't plague him. I know it is a very small issue after all he has been through but at the same time it is crappy to have to deal with after all he has been through. Can't he be normal now. There I go being a negative Nellie again! I don't mean to be, it is just hard at times. You all know it is right in between scan times and I get nervous at this point. Can you imagine next time when we go 6 months. Lord help us all!
On a brighter note, Mrs. Kelli gave me a surprise this morning. She had a copy of the Birmingham magazine. It had an article about being a Life Inspiration award winner and how to nominate someone. It also listed all the past winners and Taylor's name was listed. It was a mixed emotion that ran through me as I saw his name there. I mean, there it was, Taylor Watts, in black and white. That made it permanent, real, he did have cancer. There was his name mixed in with all those other names, all those names were adults. However, that same sentence meant so much more. He was the only child. At age 3 he won an award for his work with cancer and his will to live. That is a wonderful feeling to know that we have helped others want to live by allowing them to see Taylor's success. I have never heard of this publication before as I said, Kelli gave it to me. It was the May 2005 Birmingham magazine ,if anyone is interested.
Please pray that whatever has Taylor acting this way is indeed a sinus/ear infection and in no way cancer related. Pray that he NED forever. Pray for Emma Grace who had a very hard night. She is now stable, but needs our prayers. www.caringbridge.org/ar/emmagrace Pray for Jay who has had a lot of progression. Pray that they can find an answer for him and soon. www.caringbridge.org/md/jaybarnett Pray for the family of Deanna as they get through another year without her. She went to be with Jesus on May 6th 2003. www.caringbridge.org/al/deannagarner. Also remember Alexis' family as they lost their angel a year ago in April. They did welcome a new princess into the family as well. www.caringbridge.org/al/alexislindsey There are so many kids and families that battle cancer everyday. Please buy a bracelet and help us give back to research and other charities that help families like us. You can also help by buying the childhood cancer car tag that is now available in any Alabama tag office. Also, the easiest way, give blood. You can go to any local blood center to give or to various drives that are held all the time all over the place. You are certainly welcome at Taylor's 3rd annual blood drive coming up this Wednesday, May 18th 2-7pm. The drive will be at Pleasant Hill UMC in Bessemer. Please email us if you need more info. We can't wait to see you!!!!
May 11, 2005 Day +770 Day #468 off treatment
I hate days like these. Taylor woke up with no fever, but you all know me, I had to call anyway. I talked to Rhonda and she said as long as there was no fever he didn't need to come in. We went on to school anyway. I just couldn't let it go and I worried all day over it and felt jealous of all the healthy kids around me who didn't have to worry about it. Whose mommies didn't have that dark cloud looming over their heads all the time. I rarely ever let myself go into that mode, you can't or you will never get through it all, but at times I do. It is so overwhelming to have to worry about every little thing all the time. I made sure that Christi and Shannan knew what was going on and that they could keep an eye on him. He played, but not as active as normal until he got the the gym and cut loose. He walked funny, but he also had his shoes on the wrong feet. Nut! He ate like a horse again so I didn't know what to do with him. For my own peace of mind I called Dr. Petelos and took him on in. He has a sinus infection which he already takes everything under the sun for that so there was no added meds. He also had fluid on his right ear. It is not infected, but it is enough fluid to cause him to run fever. He put him on Augmenton for that. He will take that for 10 days ending on the day before we go to Disney World. Taylor has not had Augmenton on a while, so I am not sure how it will bother his tummy. Logan is not bothered at all by it and I hope he isn't either. I don't want his teachers to deal with the runs at school and I certainly do not want to do it on the plane. Add that little tid bit to your prayer list:) He has not really mentioned his foot hurting. He seems to be walking strange not a limp but not a normal walk. He is wearing his pants all crazy so that could be it. More than likely he is walking just fine, but my crazy, worry wart mind is making it look strange. He is running 90 to nothing at moment, so I assume he is fine. I had Dr. P look at Logan's ear that is draining and it is fine. I am to keep the drops going until Friday and watch it. Both boys have a June 15th appointment with Dr. Hill. Taylor will see him to see if we can not get to the bottom of his ear and sinus troubles. Logan will see him for his re check after having his tubes put in. That worked out great as he only sees patients at Children's Hospital on every other Wednesday afternoon and that was the Wednesday that we will be there for Taylor's CT and MIBG injection.
We have ball practice this afternoon. That will be a true test. I am sure he will be able to run then. He only has a few games left, so come on out and watch. He has cracked me up several times today. On the way to the Dr. I was telling him where we were going. He didn't want to go and I assured him that there was no shots or anything like that, he just needed to see where all that snot was coming from. He told me in a very ,I don't need a Dr. for that, tone "It comes from my head". Dr. Petelos got a kick out that one. Once we got home he went out to play golf. I heard him yelling about not being able to hit the ball. I went to watch and the nut had his hat completely over his face and was just swinging at whatever. Nut!
Please pray that whatever Taylor has going on in his little body is not cancer related and is gone very soon. Pray that he is NED forever and will never again face cancer. Pray that Logan never faces anything like it.
May 10, 2005 Day +769 Day #467 off treatment
I have nothing to tell today. We have had an average day. Taylor has been rather blah since we got home and he now has a fever. It has not hit the magic number yet so I haven't called the Dr. I gave him Tylenol. I know that is against the rules since he has a port, but we have his school program tonight and I am not going to spend all night in the ER. He has a very green runny nose, so I am guessing yet another sinus infection. If he is still running fever tomorrow I will take him in. Hopefully we will not have to go, but I would rather do it now than in Disney World. He got a fever last time we went, but he slept it off. Who knows what it was. I wont say I am not worried after all it has been a while since scans.
The program was good. Taylor sang, but didn't do hand motions. He wouldn't have even went on stage this time last year, so I am very proud. His entire class did great. My class did well other than walking in line. I think they just got excited since they have done it a billion times in practice. Oh well, it was still very cute and they had fun. Heck, I even had fun, but I am glad it is over. That was a lot of work.
Taylor continued to act rather puney one minute and a burst of energy the next. He ate like a horse and he normally doesn't eat if he is sick, so who knows. He has been saying his foot hurts, but he didn't mention it until he wore his church shoes. He also said on Sunday that they hurt, but I ignored him thinking he didn't want to wear them. Again, I would be lying if I were not worried and I didn't have 1,000 questions running through my head, but I am still leaning towards the shoe thing. He complained a little even after the shoe was off and I see nothing on it.
Please pray that there is no more fevers and that his foot hurting is due to his shoe and nothing more. Pray that he is over it quick and back to normal. Pray that he never again faces cancer. Pray for all our friends who are fighting. Pray for Emma Grace who is still in ICU. www.caringbridge.org/ar/emmagrace Stop by and leave them some encouraging words as they go on 6 weeks in ICU.
May 9, 2005 Day +768 Day #466 off treatment
You all know how I like to look back to what I was doing in years past. I am a goof ball like that. I dressed Logan in the same clothes that Taylor wore on his first trip to the zoo. He wore the same pj's the other day for his tube surgery that Taylor wore when he got his tubes. I am just goofy that way. I am looking back today to see what I was doing on May 9th. Last year it was Mother's Day and we went to eat with Guh, the same as yesterday. Do you see a pattern, I am a creature of habit:) The year before that we were in clinic at the stem cell unit and I was mad at eh ENT clinic. I wont go into that, but the point is May 9th tends to be a day worth updating about and today was no different. It started like any other day. We went to school and my class practiced their program and then played in the gym. I went with Shannan to get chairs to set up on the stage for the big event tomorrow night. We had to bring 20 chairs down so we loaded them up on the elevator. We got all loaded up and started down, but the elevator didn't go down and the door wouldn't open either. We were stuck! We were beating on the door, but everyone was downstairs and we were upstairs and no one heard. We pushed the call button and got some lady in Ohio at the dispatch center. She called the church and told them that we had called from the elevator and to go get us out. How funny must that have been! Joy came to talk to us as much as she could while she tried to work too. Everyone thought it was funny and it is now that we are out:) Luckily Bro. Bobby was in today and Joey, a fireman, was there too. It took about 40 minutes to get out. When the alarm sounded and they cut the power we got a little freaked out. When Joey told us that the power coming on would "drop" it to the bottom floor we were very scared. He then rephrased that to "lower". They finally had to call in a repair guy, but the door opened about 10 minutes before he got there. He said it had something to do with cold oil in the hydraulics, but I don't know. All I know is I am out. I have never had a fear of elevators and I don't know that I will now, but it was a little un-nerving. Shannan is claustrophobic, but she did fine. We just talked about anything other than elevators! I took Logan and Taylor up to my class the other day and Taylor wanted to ride the elevator down. I really would have freaked if we had gotten stuck then. Once we were out we went on with a normal day. Thanks Joey and Bro. Bobby for setting us free.
We met Jim for lunch after school and then we went to the mall. Note we never stepped foot on the 2nd floor:) I had no real reason to go up stairs, but I don't think I would have today. Taylor built a build a bear. That is not something we do often, in fact, we haven't been in there in 2 years since we built his Nikki bear. We were just killing time today and saw that they have Nikki bear II. It is another purple bear and proceeds go to cancer research as well as other child wellness programs. I allowed him to get that one since it had a benefit behind it. He was so cute stuffing it and preparing the heart to go in. He typed his own name on the birth certificate and he named it Spider man. We tried to get him to name it spider bear, but he wouldn't go for that. It is all dressed in its very own spider man suite. We also found Taylor some sandals like Jim's. We have found several brands that do not come in his size, but the Gap had them in his size. He was so excited. We made a few stops to play around, but we didn't buy anything else.
Jim and Paw Paw and Taylor were going to go play golf, but it is raining so I don't know if they will get to or not. That is about it for today as if that wasn't enough! I just wanted to be able to give you an exciting up date for a change. Please keep praying for Taylor's continued success. Pray for all his little friends and big ones too that are fighting cancer or some other disease.
Taylor's school program is tomorrow, Tuesday, May 10th at 6:30. It will be in the gym at Pleasant Hill UMC. We would love to have you there.
Blood drive is Wednesday, May 18th from 2-7pm. We still need volunteers to work the registration and snack tables. We would love to have you help us work this event. We also need you to all come out with a friend or two or three and give blood. Remember, it is 30 minutes of your time to save a life.
Build-a-bear workshop has Nikki bear II that benefits children's wellness programs. Next time you build a bear, build a Nikki bear.
May 8, 2005 Day +767 Day #465 off treatment
"God Could not be everywhere and therefore He made mothers." -Jewish Proverb
Happy Mother's Day! We started this day by going to church. Taylor went to Children's minute by himself. It helped that we sat behind Griffin and they had been talking and writing notes on the offering envelopes. Jim had to go with him, but he went to Children's church. He said, rather loudly, "I don't want to go". Soon Jim was back. Taylor had the time of his life and tells us he will go back next week without daddy. HMMM...I knew he would love it, but I just couldn't force him to go. Maybe that is it and he will go. We will soon be working on Sunday school. He is going to church with Gam maw next week for her Birthday and then we are off to Disney World. Once we are back and settled we will start that. I know he will love that too.
We went to the mall afterwards. Jim says I am hard to shop for, so I got a shopping spree for Mother's Day. I got some shoes and clothes. It was fun. We went to Guh's house after that. We had a cook out. Taylor and Logan had a blast playing outside. They played in the sand box for a long time. Taylor wanted to wash Logan's hair and he did so by dumping a shovel full of sand all over his head. We had to put them in the tub before we put them in the car. Guh's tub looks like the beach.
After Guh's house we stopped by Gam maw's. The kids played for a bit and then we took off for home. It was another long but fun day. Logan went to bed as soon as we got home. He still has sand all over him, but he will live. After washing his hair a dozen times, it still has sand falling out all over the place. Taylor fell asleep while he did his breathing treatment. He needed those shiny silver teeth brushed, but again, he will live. I think I am about to hit the sack myself.
I hope that all you Mother's had a wonderful day. We deserve it, we are super gals! Don't forget that Taylor has a program Tuesday night at 6:30. Don't forget the Blood Drive is May 18th 2-7pm. We look forward to seeing you all there!
Please pray for Taylor's continued success against this disease. Pray for all of our friends who are still battling disease. Pray for those who are NED to stay that way. Pray that a cure is found and soon.
May 7, 2005 Day +766 Day #464 off treatment
We had a long night last night. We went to Gam maw's to get her tables and she volunteered to help us set up. She may wish she hadn't now:) We were there until 11:00 setting up. Jim took Logan on home so that he wasn't pulling out faster than we put it up. Taylor stayed and played with the big guys. He was so tired, but he kept going. He fell asleep on the way home.
I left at 7:00 this morning. We had a pretty good turn out. Taylor and Logan sold their baby stuff and made money for Disney World. Taylor had a ball game. They tell me he did pretty good. After the game the boys came over. Taylor had so much fun playing on Blake's drum set. He has a little rhythm in him. He looked so cute banging away and tapping that foot. However, he was not cute enough for us to want to buy a set, so no one out there go getting any bright ideas:) Logan had a good time walking around and chasing the dog. He was so tired it was insane, but he was not going to take a nap. After the yard sale Jim and the boys went on home and I went to Wal-mart with Guh to get stuff for out cook out tomorrow. The boys went swimming in their new pool. Logan had no fear. He was dunking his head and splashing. He loved it. Taylor loved the slide. The video is funny.
Once I got home Taylor and Jim went to play golf. Logan and I cleaned house until about 7:00 when he just couldn't hold that head up and I put him to bed. Taylor and Jim got home a little later and we just hung out. It was late when we went to bed. I am not sure how we were all still awake, but once we did get in bed we were out.
May 6, 2005 Day +765 Day #463 off treatment
Welcome back. It is Friday, finally! It hasn't been a bad week, but Friday is always good. We have been getting ready for our yard sale. I could get a ton more if I dug through that play room, but I just can't bring myself to do it anymore. We have so much stuff to sale. Come out and check it out. Logan took a long nap and I loaded up what we had not done last night and I did get some stuff from the play room. Taylor was right on my heels checking it out. A few things I asked if I could put in and he said sure, but I don't think he really meant it. Oh well, it is gone and trust me, he will never miss it. We are going to set it all up and price what hasn't been tonight. That will be great fun and very time consuming. It is an understatement when I say we have a lot.
Taylor has been singing to me. He attempted his ABC's backwards and it sound like this "CAIJKL" It was so funny. Logan screams to sing along. He has a little piano in the car and he will just sing his heart out.
We are home just waiting on Jim to get home. I will not even attempt to pull that Trailer to Mary's house. That would be oh so scary for all the other drivers on the road:) Taylor has a ball game in the morning at 9:00. He only has 3 left, so if you want to see him play you better hurry. He is doing so great this year. We got his ball pictures back as well as their school pictures. The school ones of Logan are awful, but I knew that just by watching. Taylor has a few cute ones. I don't know if we will get them or not.
That is it. You can tell by the above that I am just grasping at straws here for a topic. I guess that is a good thing. I really should start doing a weekly or monthly update, but it is very therapeutic for me to sit here and let it out even if it bores you all to tears.
Please pray for Taylor's continued success against the cancer that ones consumed his little body. Pray for Bailey who is waiting on an answer to why his stem cells didn't engraft and where is back up is. Pray for Emma Grace who is still in ICU, but is improving. I learned this morning that a local child whom I did not know, passed away last night from NB. Please pray for this family as they start the next phase of the journey. Pray for all our friends who are battling cancer and other illnesses.
May 5, 2005 Day +764 Day #462 off treatment
Welcome to Watts world. We have had a good day. We went to school. Paw Paw and Daddy came to see Logan's program today. He did the same as yesterday and ran around screeching. He got to show off his boo boo on his eye. He fell last night and hit the part of the bubble mower that holds the bubble stuff. He has a perfectly round cut on his eye. He didn't care. He was real good today when we all had to leave him. He was also good when another child beat him to his beloved police car. He made a face, but he just walked away. Other than that it was an average day. Taylor didn't even know that Paw Paw and Daddy were there. Taylor had a huge package in the mailbox and he tore into it like it was gold. It was to him, it was an Incredibles skate board. He was so excited. We had ordered it off the back of a pop tart box long before Christmas. We have gotten several back order notices and I had forgotten all about it and he never knew about it. He loves it and took it and his spider man skate board outside to play. He has since played with play dough. He has a Shrek head that you fix his teeth. He loves that.
I took a little break from updating when Logan woke up. He now has a matching boo boo on his right eye. He was in the bathroom while I did laundry and he tripped and fell and slammed into the laundry room door. He has a nice bruise on his face and it is very tender as he jerks away every time I get near it. He also had a line across his ear where he hit. It has gone away. He has a lot of drainage in that ear. I hope that it is from his drops and he didn't do something to it.
We went to Wal-mart. We needed a fix since we haven't been in a while. We got some Mother's Day goodies and Teacher appreciation week goodies. Did you all appreciate your teachers this week? We certainly appreciate Taylor and Logan's teachers. We are so blessed to be part of such a special place.
You all will not believe this. I was typing the stuff below and Taylor was watching Clifford and Logan was playing on the bubble mower and fell again. He now has added yet another bruise to his left side on the cheek. People are going to think I beat him. I really don't! I wonder if the tubes have his balance off. Who knows. He is just goofy I think!
Blood drive May 18th 2-7. Pleasant Hill United Methodist church. Please come one and all to give blood and/or help work. Taylor will be there to meet and greet his many supporters and prayer warriors.
Taylor is having an end of the year school program. He will be joining his classmates in singing and showing off what they have learned this year. Please join us for Taylor's first school program this Tuesday, May 10th at 6:30, also at Pleasant Hill UMC.
Taylor only has a few ball games left. If you want to come check out the schedule at the top of the page.
Yard sale this weekend. Plenty of clothes especially baby clothes. Toys, bedding, baby goods and more. Email for directions.
Please pray that Taylor beaten the beast and that he never again faces cancer or treatments. Pray for Bailey as he fights this fight. Pray that an answer is found for his problems. Pray for Davis who is doing radiation. Pray for Emma Grace who is still in ICU. Pray for all the others, way to many, that still fight everyday. Pray for those who are missing loved ones. Pray for those who are just beginning.
May 4, 2005 Day +763 Day #461 off treatment
I have had a pleasant day. How about you all? We started the day with school as normal. Logan's class had their program today. His class didn't really do anything, but eat with mommy and daddy and then get a certificate. I didn't video much since he sat in my lap. He did get down and run around and yell while the 2 year olds sang. I am sure that every parent has a high pitched squeal in the background of all their video. He cried a little when I left his class to go back to mine, but not a lot. He has some drainage still from his ear, but that is normal. Other than that you would never know he has had anything done. Well, I think it made him mean. He was ugly today at school. He got out of his police car and another child went to get in and he ran and conked the other kid. I know he is just a baby and that they express themselves that way, but I hope he wont be mean as a bigger child. After school we brought some posters to Miss Cathy's house. If you are reading this Cathy, they are on the back door. Taylor told me that he had been there before when we pulled up and that there was dogs in there. He doesn't miss a thing.
As boring as this is there is no more. It was a normal day. We have ball practice this afternoon. Taylor doesn't seem to feel real good. He is playing and eating fine, but he is rather mopey in between. He is very snotty again, so he may be getting a sinus infection. I can't wait to go see Dr. Hill and see of he can fix this issue once and for all.
Don't forget the blood drive is Wednesday, May 18th from 2-7pm. Taylor's school program is Tuesday, May 10th at 6:30.
Please pray for Taylor's continued success against NB. Pray for all our friends that are fighting some sort of illness or injury. Pray for Bailey who is not doing well. His stem cell transplant is not working and his back up bag of cells has been lost. Pray that a solution is found soon for this little guy. Hang in there Bailey, we are praying for you.
May 3, 2005 Day +762 Day #460 off treatment
I have two little troopers. We arrived at the hospital at 6:00 this morning. Logan was ride open in that waiting room. He played and had a good time. In fact, he was a little ticked off when he had to go back to the back. He got over that real quick when he saw all the riding toys back there. HE got into his gown which he hated and kept getting caught up in. We had to tie it up, he looked crazy. Taylor came in shortly and played with him. We had a great nurse. We have known Malia forever since Nana keeps her kids. Thanks Malia for taking good care of us! The nurse took him back to the OR around 7:45. We just knew he would scream and cry. Nope, not one peep. He just went to her and went with her. I am not sure if that is a good thing or not! Dr. Hill came in about 3 minutes later. I promise it was really that short. They were already done and they had drained a lot of fluid from behind his ears. I guess he really did have some gunk in there. I asked how he would be for the plane ride. He assured me he would be the best kid on the plane. Ha, I told him he didn't do that kind of handy work. He will be fine, the tubes will keep him from getting the popping sensation that we get. Logan was back soon too. He was groggy, but took his cup and drank his juice and was ready to get down. Taylor was cranky and cried after he got his tubes, not wild man. We were gone by 8:00. We did not leave without calling Dr. Hill in again. I wanted to ask him about Taylor's sinus issues. He said that the head radiation could have something to do with his always present snotty nose but probably not since he is runny, it usually makes things crusty since it dries up the mucus membranes. He did say that it could be the cause for all the wax build up that he has in his ears. Radiation kills the membranes in there and I don't really know what all he said, but he most definitely has that going on. We will be getting a referral from Dr. Petelos and going to let him look at him. Maybe he can clear it up and we will not have to go to the allergist.
We also got to see Lisa, the nurse who knew Chet Williams and got him to get the Auburn football team to sign the football back when Taylor was still on chemo. It was so great to get to see her again and to let her see how great Taylor was doing.
Taylor went home with Paw Paw and still wanted to go to school. Paw Paw took him and picked him up. I got a call at 1:00 and no one was saying anything. I could hear snotty snorting and I knew it was Taylor. When I said his name he asked how I knew it was him. Goof ball! He wanted to stay with Paw Paw. He asked in a real sad voice then as soon as I said it was fine he said "okay, bye" in a wild man voice. He is so funny.
Logan napped from 9:20 to 1:00. Wow! I napped for a bit, but I couldn't sleep that long. Logan is fine. The only little complaint he had was when I put drops in his ears. The right ear is bleeding a little and the drops must have burned a tad because he cried with that ear only. I don't know, maybe he just didn't want to be still.
It is now 2:00 and we are just hanging out. Taylor is still gone and I am sure he will have a story to tell when he gets home. We don't have any plans that I know of for tonight. We will all go back to school tomorrow and Taylor will have ball practice as well.
Don't forget the Blood drive is May 18th 2-7 I need you all to come out in full force for that.Taylor's program is May 10th at 6:30. We are having a yard sale this weekend. We have a little of everything to sale. If you are interested please email me and I will get you directions. We will be in the Oak Mountain/Inverness area.
May 2, 2005 Day +761 Day #459 off treatment
How is it May all ready? I can't believe it. We have 20 days until Disney World. Yahoo! No one wanted to get up this morning, but we did. I was so late for work. I had to get gas and stop and get lunch for the kids. We finally made it. It was a wild day in my class, but Taylor's was a small group. He was heart broken that CJ and Ethan were not there to see his tattoo and play with. He was also heart broken when we had to leave early. He had his 6 month eye exam today. We got there a little early and luckily they took us on back. We did play in the waiting room for a little bit. Taylor then announced that he had to poop. I came out of the bathroom to see a nurse there asking if he was Taylor. We went to a room where they let him look at pictures with one eye and she took some notes. She then put us in another waiting room. There were other kids in there so they were both happy to play. It was a very tiny room and I was able to let Logan run around without worrying about him. Taylor got in big trouble in there. He pushed Logan several times and I put him in a chair for time out. He got up, so I put him in my lap. That is when the fun began. He hit, kicked, slapped and everything in between. If I popped him he would spit or hit me. I tried to calm him down and talk to him, but he wasn't having it. I had to hold him between my legs and grip his mouth so he couldn't yell or spit and talk to him. He finally calmed down and sat still. He was furious when I didn't let him get up just because he got quiet. He probably would have started again if she had not come in and told us to go to another room. The nurse told him to climb in the big exam chair and he thought he was still in time out since Logan was exploring the room. I didn't let him know otherwise since he was quiet.
Dr. Elsas came in soon and started the exam. As you may remember we went in November and Taylor did not see well with his right eye. Although we thought that it was only due to his attention span rather than actual vision loss. We were not concerned, but had to recheck to be sure. He passed with flying colors today, he is 20/20 in both eyes. He did get me and Dr. Elsas very tickled. Taylor tends to be very quiet if you do not want him to and he does not speak very clear. The Dr. was having a hard time hearing him and understanding him and I told Taylor to talk louder. He started to yell. The next picture was a cake and he yelled "CAKE". It was so funny! We will go back in a year to check, but he will not have to do more than an annual check up unless we see a problem.
After the eye exam we went and got Taylor some new shoes. We had gray New balance in hand. It was the same pair he had last summer, but it just like the pair that Jim, Logan and I wear, so I was going to get them. He did a 180 when he spotted a pair of gray and orange ones. We got those instead. There is a pair of sandals that he wants so bad, but they only come in size 11 and up and he wears a 10, it is making him mad. Taylor got a golf bag and his size clubs while at the outlets and he went out to practice until daddy got home. He and Jim have gone to play golf and we will meet them for dinner when they are done.
Taylor is spending the night with Gam maw and Paw Paw tonight since we have to take Logan to the ENT at 6:15 in the morning. He is getting tubes tomorrow morning. Taylor did fine and was at home playing that afternoon, so hopefully he will be fine. I hope that he sleeps all day! I have a ton to unpack and wash. Taylor will go to school if we get home in time and he wants to. We shall see how it all goes.
May 1, 2005 Day +760 Day #458 off treatment
Sunday turned out to be a prettier day. We went to the beach long enough to turn around and come back. It was down right cold with the wind blowing. We took Taylor to the indoor pool. Logan wanted no part of it today. Taylor swam a long time with his arm up so his tattoo didn't come off:) Gam maw and I went back to the room and cleaned up and packed while Jim and Taylor swam. Once they got back and got cleaned up we were ready to go. We had asked for a late check out, but we were gone an hour before check out. We stopped to get the boys some breakfast and headed to Alabama. However, we didn't head towards home. We went to Foley and hit the outlets there before heading home at 3:00. Logan took a nap while we shopped which made shopping a pleasure however he was not so pleasant in the car. Taylor fell asleep so we moved the DVD player to Logan's side of the car and that kept him happy for about an hour. We made a stop at Priester's and let them run and have a snack. Taylor got an ice cream cone that was as big as him and Logan had some divinity. Just what he needed, pure sugar! It was not real pleasant trying to get Logan back in the car, but he went and we headed on to home. We stopped for some dinner where neither boy ate very well, but I think they were going on pure adrenalin at that point. We got home around 9:00 and we all went straight to bed.
Back To Top
April 30 , 2005 Day +759 Day #457 off treatment
Howdy again. What a day. It started around 7:30 as usual. We went out to the beach and it was a little windy and the water was so rough. The kids played in the sand. Taylor loved it and was rolling and flopping all over the place. He was walking right along the waters edge when a big wave took him out. He was a little stunned by the surprise and how cold the water was, but he jumped off and went right back to what he was doing. I thought Logan would not like it, but I was wrong. He loved it. He was running as fast as those little legs would carry him through the sand and just falling in it. He even stuck his face in it. He didn't like that too much, but that didn't stop him from doing it again! He did not care for the water touching him. We will post pictures soon and maybe video. The sky soon took a turn for the worse and it got pitch dark out so we took it in to the indoor pool. Taylor was in hog heaven then. Logan is going to be the kid that gets on your nerves by sitting on the steps. His floatie was not doing him much good, he kept tipping over and falling in face first. We took it off and just held him. He liked it for a little bit then he had had enough. It took some doing, but we got Taylor out of the pool and back in the room. We got changed and went to Wal-mart. You know we have to have a fix no matter where we are! No, we needed chocolate milk for you know who. It was raining like crazy so we hung out inside for a while looking a beach stuff. Taylor got a spider man goggle and flipper set. It was still pouring when we left. Jim had bought an umbrella and put everything in the car and was going to pull up the curb to get us. Well, he realized he forgot something and ran back in. He told us to just go to the car. Where was the umbrella? In the car! Oh well, we ran for it and only got half drenched. We went for some lunch then we went back to the room. We played and napped .Logan had a good time cramming the cell phone in the VCR. Jim got it out, but it was not fun. It finally stopped raining around 5:00 and we went to the outlet mall. Taylor fell asleep, so we just took turns going in and out of stores while the other stayed in the car. Guh and Chuck had gone to the beach for some business so we met them for dinner at AJ's. It was real good and Taylor ate good once he finally woke up. After dinner we went to the parking lot and Taylor found a tattoo place. He got an airbrush tattoo. It is a spider of course! He was so excited. He wanted it on his arm and the guy in front of him got something on his back and that made Taylor want his on his back. He changed his mind once he realized he couldn't see it. He had wanted to go back to the hotel and swim, but after he got the tattoo he changed his mind, it might come off. We just went back and played. I managed to get Logan still enough on the bed to fall asleep. We left him there until we were ready to go to bed and then moved him to his play pen. Taylor had had that long nap and didn't want to sleep. He climbed up on our bed and watched Full House, his new favorite, and ended up falling asleep there.
It has been a wet day, but a fun day. We are so blessed to be leading a "normal" life and to have been able to have gone for a weekend at the beach. We thank God for that everyday. We look forward to many more weekends like this. Please join us in this prayer. Also pray for all our friends who are fighting NB and other diseases as well. Pray for those who have lost a loved one recently or any time. Pray for our troops as well.
April 29, 2005 Day +758 Day #456 off treatment
Howdy ya'll! We are on our way to the beach as I type this. We got a later start than we had planned, but this way daddy didn't have to drive by himself. Taylor is snoozing and Logan is fussing. I had to let him take a nap because he was so tired he was stumbling and I knew that if we let him sleep on the way after leave so late we would be up all night. We ate in the car on the way all of us but Taylor that is. He had decided to go to sleep. He woke up grumpy since he expected to get there in the blink of an eye. Logan got very cranky towards the end and finally fell asleep. It was very hard getting him back to sleep once we were in the room. We ended up hanging out in a dark bathroom until he cried it out and went to bed. Taylor thinks it is cool since it has a set of bunk beds rather than 2 queen beds. He has his own Buzz themed room. He was very excited, but he had to be still and quiet for so long for Logan's sake that he too went to sleep.
School was the same as always. They did pictures again. Taylor was not thrilled about that, but they say he did better today. Logan did not do as well not that he did well yesterday. I am sure they will be cute no matter who is smiling or making a goofy face.
That is about all I have. We will be home Sunday night and I will update again then.
April 28, 2005 Day +757 Day #455 off treatment
I Can't talk bad about Mrs. Janice anymore since she started reading. Just kidding Janice, you know I love you and don't talk about you. I will tell you War Eagle! We have a few new readers these days, we welcome you to Watts World. We have a lot of fun here in Watts world. Today was like any other day, but last night was interesting. Taylor fell off the bed at 2:30. I put him back in and he was all snotty and congested and shivering. I thought it a little odd since he was fine when he went to bed, but oh well. He fell off again at 4:30, this time I made him get in the top bunk so that he would not fall off again. Guh, if you are reading this we need that bed rail. Anyway, I kept hearing him make odd noises so I went to check on him and he said his back hurt and he was gasping for air. I don't know if he had knocked the wind out of himself or if his congestion was triggering an asthma issue or what. He got in our bed and shivered and trembled and labored for breath for about 15 minutes before finally falling asleep. Once he was asleep he was fine. He woke up and said he wasn't cold anymore and made no mention of his back hurting. I didn't mention it because I didn't want to remind him if had forgotten. He didn't complain all day at school and played as normal, so I am not sure what that was all about. He also ended up with a little bit if fever and I guess that is why he was so cold, but again he woke up fine. I did give him Tylenol for his back pain, but he did not have any fever during the day. He is full of green snot again, so I am chalking it up to sinus issues, he did play outside yesterday for about 5 hours.
After school we went to the shopping center across from the church and walked up and down and hung up posters for the blood drive. Most people were very glad to hang it a few didn't have the authority to say and others wouldn't allow it, but that is okay. I think we got enough in that area. I have some left, so if you are local and want one let me know.
Today was picture day at school. Taylor didn't really cooperate and then he got too silly and we lost Logan, so I am not sure we got any good ones. Logan wanted me to hold him, so he tried again with his teacher and though he was not smiling he wasn't crying and reaching either. We are due for photos again in June. If these are okay we will let that be it and if they are not good then we will try again. Logan just does no like it and will cry and reach and Taylor wants to be goofy or watch Logan and you can never get them both doing the right thing at the same time. They both did fine for the group shot. We will have the other group photos tomorrow. I am not sure if they will try individual again or not. I doubt it.
That is about all we have for today. Isn't it great that my biggest problem today was who smiled and who didn't. I love it! Don't forget the blood drive May 18th 2-7. Don't forget the school program May 10th at 6:30. Also, Mother's Day is coming up. Mom's love Mary Kay Satin Hands set or maybe a Time Wise set or a microdermabrasian set. Please let me know if I can help in your Mother's Day shopping!
Please pray that Taylor continues to beat this disease. Pray for all those who are battling this or other illnesses. Pray for the Flory family as little Alexia earned her angel wings.
April 27, 2005 Day +756 Day #454 off treatment
NOTE: If any of you notice any problems with the store page or paypal page let us know. We know that this morning the "pay" button was not showing up. We hope that that has been fixed, but please tell us if you see any problems. If anyone would rather send a check you can email us for the address.
Today has been a much better day. I did get a call this morning to discuss our posters and Mr. Ben should be hand delivering them this afternoon. Finally, someone who has stuck to their word! We all had a good day at school. My class practiced their program on the stage, lets hope that they do better at the real thing. They were wild as could be. It is hard when it is this time of year to keep them calm all of you teachers and mom's can agree with that.
We came straight home since Logan did not nap at school. I am glad that he didn't, I would rather him do it here. We will go to good ole Wal-mart later to pick up Taylor's meds. Taylor and Jim may go play golf, I don't know if they have decided on today or tomorrow.
As short at this is, this is all I have to tell you. Nothing is going on around here. Thank God! Please pray that Taylor is NED forever. Pray for all the kids and adults too that fight some sort of health battle everyday. Remember the blood drive May 18th 2-7. Remember the school program May 10th at 6:30.
April 26, 2005 Day +755 Day #453 off treatment
Today has been a frustrating day for me. It started with a call to the poster folks for my blood drive posters. They were to be made today, but after a trip all the way down town and a call at 5:30 they are not. Hopefully I will have them in hand tomorrow afternoon. Again, I need you all to come out in droves to make this drive a huge success. Don't forget you are welcome to come help! I also got a call from Meredith. I am starting to get a complex about this port removal surgery. He has to be rescheduled, but it is a legitimate reason. Dr. Kushner, one of Taylor's NYC docs, requested that a sample of the bone marrows taken in June at the same time as the port surgery, be sent to them. This is all for a study since he has reached the 2 year mark since he began 3F8. Anyway, the sample can not be sent on a Friday and that was the day that we originally scheduled. He will now do his bone marrow's and port removal on Thursday, June 23rd. Pray that this is it, the final change and that he is port free by July!
We shipped off more bracelets today. It is an awesome feeling to know that we are raising money that we can give back to the wonderful charities that have helped us along the way. Don't forget to stop and get yours.
Other than school and a trip down town, we didn't do anything. Taylor was very mad that he didn't get to go outside, but he got over it. We stayed home and watched American Idol and House. Logan did not want to go to bed after napping to nearly 5:00, but he played in his bed for a bit then fell asleep. Taylor didn't want to go to bed either and had asked Jim to come sleep on the bottom bunk. Jim told him he would after he changed and took his contacts out. In the, maybe, 3 minutes it took to do that Taylor fell asleep.
Please pray that Taylor stays NED forever and never again has to deal with cancer. Pray for his upcoming scans (June 15, 16, 23). Pray that the blood drive is a success. Remember it is May 18th 2-7. Oh, that is the other change. The original guy who was helping us wanted to do it 2-8 to catch the people after the Wed. night supper, however, I have since been told by our new organizer that he had no right to do that and it must end at 7:00. I don't care either way, but it is getting old to keep having to change things. I feel as thought people will think I have no business trying to plan anything. Don't forget that Taylor's school program is May 10th at 6:30.
April 25, 2005 Day +754 Day #452 off treatment
The Chosen Mothers
by Erma Bombeck
Most women become a mother by accident, some by
and a few by habit. Did you ever wonder how mother's of
children with life threatening illnesses are chosen?
Somehow, I visualize God hovering over earth
selecting His instruments for progagation with great care and
deliberation. As He observes, He instructs His angels
to make notes in a giant ledger.......
"Armstrong, Beth, son, patron saint Matthew"
Forrest, Marjorie, daughter, patron saint Cecilia"
Rutledge, Carrie, twins, partron saint Greard."
Finally, He passes a name to an angel and says, "Give
her a child with cancer." The angel is curious. "Why this
one, God? She's so happy."
"Exactly," smiles God, "Could I give a child with cancer
a mother who does not know laughter? That would be cruel."
"But, does she have patience?" asks the angel,
"I don't want her to have too much patience or she will
drown in a sea of self-pity and despair. Once the shock and
resentment wears off, she will handle it."
"I watched her today," said God. "She has that feeling
of self-independence that is so rare and necessary in a mother.
You see, the child I'm going to give her has it's own world.
She has to make it live in her world and that's not going to be easy."
"But Lord, I don't think she believes in you," said the angel.
"No matter, I can fix that. This one is perfect. She has just
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child
occasionally, she'll never survive. Yes, here is the woman I will bless
with a child less than perfect. She doesn't realize it yet,
but she is to be envied. She will never take anything her child does for
granted. She will never consider a single step
ordinary. I will permit her to see clearly the things I see....ignorance,
cruelty, prejudice....and allow her to rise above them."
"And what about her patron saint" asks the angel, his pen poised in mid-air.
God smiles and says..."A mirror will suffice."
Isn't that a great poem? I just wanted to share that with you all.
We have miracles taking place in this house today. I knew that Taylor was in his room and Logan had just been with me in the living room. I got up to look and see where Logan had run off too and couldn't find him. I looked in Taylor's room last since he does not allow Logan anywhere near his room. There they were sitting in Taylor's room playing. Taylor looked up at me and said, "I'm not mean anymore, I let Lo Lo come in and play". I helped him clean up later since he didn't make the mess. I think he liked that deal. I am the mean one now, I put Logan to bed so that he could get a nap before we go to the ENT office. Although if I were smart I would let him stay up and hope he fell asleep on the way there and maybe sleep while we waited. However, I just don't think it would work out so we will stick with the first plan.
On a sad note several NB friends have lost their battle this week. One of them being little Tyler. We met Tyler in NYC when we roomed with him doing 3F8. His mom had just had a baby and was very helpful in getting us in touch with the right people to get Logan's cord blood banked. It is hard to hear that any child has died, but when it one that you got to know and kept up with, it is very hard. Please stop by and leave Tyler's family some kind words. www.getwelltyler.com We went to the funeral home tonight for Ben's visitation. It was hard to see him after just sitting with him at church and talking with him. He will be greatly missed by many. It was so good to see so many familiar faces, but I wish it could have been on different terms.
Any encouraging words will be passed along.
We had an adventure at the ENT office. Logan is so different from Taylor. Taylor was always so easy, he just sat and waited his turn. Logan was all over. I had to drag him from under people chairs, I had to run down the hall and catch him. I was exhausted by the time it was over. It took about an hour and a half, but it felt like it took about 5 hours. We got called back fairly quickly, but only to get weighed and told to go down the hall. He weighed 23.7 pounds, but I guess that could be a little off since it is a different scale, but it looks like he is on the upward swing. We went to take a hearing test. It went okay. Logan has some hearing loss in his right ear. I was shocked, I thought the whole trip was going to be a waist since he never had many ear infections. He has had fluid build up for months and some of the hearing loss is from that, but not all of it. I do have a theory on that. Dr. Hill didn't seem to agree, but it makes since to me. I held him in my lap and the lady would make sounds from outside the room. He had to look towards the speaker that made the noise and a figure would light up. To his right a duck would light up and flap its wings. To his left a dog would wag its tell and bark. He laughed at the dog and made barking sounds. He just looked at the duck. He had loss in the right ear. I think if we turned my chair around and put the dog that he liked looking at on his right he would pay more attention to that rather than the duck and in conclusion seem to have more hearing loss in his left ear. What do you think? I know he has fluid on that right ear and that he will have some hearing loss due to that, but not as much as they are saying. That is just my motherly opinion, but it makes since to me. Anyway, he will get tubes put in his ears Tuesday, May 3rd.
The visit was fine. The nurse practitioner that examined him was Dr. Berkow's wife. She got to see Taylor in full swing and now she can tell Dr. Berkow that he has the same behavior everywhere not just at his office. Taylor thought it was pretty cool that he and Logan both have a Dr. Berkow. After the doctor we went to the Red Cross to pick up our posters. Guess what? They are wrong. It has the wrong church and time on it. I have called to have it fixed. I am getting frustrated with this thing. My point is, please come out and bring all your friends so that it turns out great and was worth all my worry. I let myself get way to worked up over things and worry about it. You guys know that, you have been reading about my worry for 2 years:)
We went by the camp SAM office today too. We gave them some pictures of Taylor at the zoo. He liked seeing the office. I guess he thought they all lived at camp. Logan enjoyed running around too. Taylor got to see his picture on the flyer for the motorcycle ride. If any of you are riders and would like to participate in the ride on June 11th you can go to www.campsam.org and look under events to get the info on it. It starts at the Barbar's motor museum and goes to Camp SAM in Alexander City. We will have a lemonade stand set up at the Texaco where the riders will make a stop. We will be packing up and leaving with them, so we will only be there about an hour. If you are interestfed in stopping by you will have to come quick. However, you can donate anyway and we will be trying to have another, bigger, stand on a different weekend. If you know of a place or would like to help contact us.
Please pray for Taylor and his continued success against cancer. Pray that he is
NED forever and never again faces cancer. Pray for the Parson and chiou families
as they start life without Ben and Tyler. Pray for all the other kids that are
fighting this fight.
April 24, 2005 Day +753 Day #451 off treatment
We had another busy day. We went to church this morning. Taylor went down for children's minute all by himself. As soon as it was over he ran right to us, but we are making a step in the right direction. We are going to start going to Sunday school and sitting with him for a few Sundays and seeing if we can ease him into that. I just can't force him into Children's church because I know it is the bigger kids that scares him. He sits quietly so I am going to let him stay in church, he will go when he is ready.
After church Logan and I went to Guh's. Taylor, Jim and Paw Paw went to play golf. Taylor had a good time. He is a trooper, just like his 6 hour fishing trip, he patiently went through 18 holes of golf. I would have been complaining. He claims he won, but I am not so sure. We are going to the beach this weekend with Gam maw and he is ready to play goofy golf to practice his putting.
We hung out at home the rest of the night. Taylor went to bed around 9:30, I knew he was tired. Logan went around 8:00, he was very tired and getting on my very last nerve. He had been a good boy and took a early nap that was fairly brief and it didn't hold him over.
We learned this morning that our old family friend, Ben, had earned his angel wings. Please remember his family in your prayers as they start the next part of the journey. Remember all his friends that are going to miss him so. Any encouraging words you would like to leave in our guestbook, we will be sure to share with them.
Please pray that Taylor is NED forever. Join us in thanking God for the miracle he has performed in his little body. Pray for all his friends that are fighting a battle of their own.
Reminders: School program May 10th at 6:30 at Pleasant Hill UMC. Blood drive May 18th 2-8 at Pleasant Hill UMC. Lemonade stand June 11th, Sylacauga Texaco. Fight Neuroblastoma bracelets are available now!!
April 23, 2005 Day +752 Day #450 off treatment
We had a lovely day today. We started the day with a ball game. It was a bit brisk out there, but the kids did good. Taylor played the circle today. He thought he was cool stuff. He did pretty good at it too. He hit good today and did it a few times right handed then a few times left handed. Maybe that will make us money one day:) Logan ran all around trying his best to get to a mud hole. He was mad that he got caught every time.
After the game Guh and I went shopping and the boys went with Gam maw and Paw Paw for lunch. We were all back home by 2:00. The boys went outside for a while. Logan is now asleep and Taylor is back outside playing with side walk chalk. We are going to Pippy's house tonight for Pop's birthday party. I wrote To: Pop From: Taylor on a piece of paper and then let him do it on the gift. He did it very well. He writes too big and he got his name in the word from and got mad, so he turned the gift over and wrote his name on the back. I was very impressed with him writing it.
I just took a peek at Taylor and he is crawling in the grass like a soldier and it looks as if he is sneaking up on his scooter. He is a goofball.
We went to Pippy's house for a cookout. The boys did good. Taylor was fine running all over the place. Logan wanted to go down the stairs and it was hard to keep him away. I brought them both some food and they ate way before us, but they both still managed to eat again. It was a late night for them, so they went to bed when we got home. We were not far behind them. It has been a busy day.
April 22, 2005 Day +751 Day #449 off treatment
We are going to go ahead and open Taylor's Store so that you can purchase Taylor's Fight Neuroblastoma Bracelets. You also have the option of purchasing a Green CureSearch "Reach the Day" Bracelet and a Camp Smile A Mile Red "Keep on Smiling" Bracelet. Payments are accepted through paypall and are 100% safe and secure through their secure servers. If you have any questions or if you are in the Birmingham Area and would like to purchase a bracelet, please email us and we can arrange to meet you somewhere. To go to Taylor's Store, click the link above.
Taylor came home from the stem cell unit 2 years ago yesterday. Can you believe the miraculous transformation that he has made. Yesterday he went fishing and now has a 6 pound bass to show for it. Did you ever think 2 years ago that you would read that? I praise God for this miracle child. I praise God for the work he has done on Taylor. I can't believe that it has been 2 years since we went through the hell of transplant, 2 years since he was bald and not eating and 2 years since we found out I was pregnant with Logan. I told Jim that the other day, but I worded it wrong. I said "I found out I was pregnant 2 years ago today rather than 2 years ago I found out I was pregnant". You should have seen the look he gave me until the rest of the sentence caught up to him. It was priceless!
We went to get my drivers license renewed this morning. Logan took off in the 2 seconds it took to snap the photo. After that little stop we went to get the boys a much needed haircut. Taylor did great as always and sat perfectly still while she did her thing. Logan was the opposite. I ended up having to hold him and he had a sucker and we were both sticky by the time it was over and covered with hair since he wanted no part of the cape. It took forever and bless her heart she had to get in some crazy positions to get it done, but she did it. We took a short walk to the toy store after that. The boys got a 4 pack of spider man cars and split it. Taylor wasn't real pleased with that idea, but he got over it. We then went to McDonald's for lunch. Taylor ate okay, but was to worried about getting to the play area. He finally got in and a school field trip group came in. I thought he would flip out, but nope. You would have thought that he was part of that group. He was running and playing and pulling on kids. He was talking to them and calling them to come over. I would have sat and watched that forever, but Logan was afraid of it. Go figure, he is a wild indian, but he is afraid of the simplest things. We got home just before the rain. It is making Taylor nuts. He told me over and over that the rain was not coming and he could go out. It was thundering and he still wanted to go out. Finally it was raining and he was content, but now it is bright and sunny. I don't want him in the mud and he can't wait to get out in it. He finally won the battle and he is outside. He is dressed in the most smashing outfit I have ever seen. He is in an orange spiderman shirt, camo shorts, spiderman shoes and no socks with a toboggan and a rake. Sounds snazzy huh?
It was a great day off for us. We got to get out and about and still relax at home too. I don't know if we have any plans tonight or not, but I am sure we will figure it out. Please pray for Taylor's continued success against cancer. Pray he never again faces cancer. Pray he has minimal late effects as well. Pray for all our friends that fight this fight too.
April 21, 2005 Day +750 Day #448 off treatment
Taylor was up at 6:45 this morning. He jumped right up with no problems. He was already dressed seeing as he wanted to sleep in his clothes:) He threw on shoes, brushed his teeth and did a breathing treatment and he was out the door. They fished until 2:30! Wow, what a trooper to hand out that long. That is pretty impressive for a 4 year old. Thank you Pippy and Pop for taking him and thank you to the Gilmore's for allowing them to come. He caught a 6 pound fish and Pippy is having it mounted. I asked him where he was going to hang it. His answer, "on the wall". Duh, dumb question huh. He is so funny telling us about it. Those arms spread a little wider each time he tells me how big it was. That is the sign of a true fisherman! He went back to Pop's for a while then to Pippy's until Jim could get him after work.
Logan and I went straight from school to Nana's to watch her kids. They were all good and played well. I just hung out and looked at a magazine. Logan was so tired and grumpy by the time it was time to go. He fell asleep on the way home. We stopped by Bob Sykes. Thank you Bob Sykes for allowing us to put a jar there. It is getting full!! Thank you to everyone who has dropped money in. You can no know how appreciated it is. Logan was still grumpy and didn't eat anything. Taylor ate fine. We came home and played. Logan took a bath and went to bed by 7:30. Taylor is playing cars and had to call Guh to tell her all about his fish.
Our bracelets shipped and UPS is scheduled to deliver them tomorrow, so let us know how many you want. I have asked for more NB magnets and I will let you know when I get more in. Thank you all for your support in that. We will be holding a lemonade stand on June 11th. This one will be at the Sylacauga Texaco station. We will only be there briefly as we are doing it in conjunction with the Camps SAM motorcycle ride. We will have a stand here locally on a different weekend. I will keep you posted on that. If you know of a great place to have it or have "connections" let us know. There is a yard sale at our church this weekend, it is a youth fundraiser. If you are out and about stop by Pleasant Hill UMC and shop around. Don't forget the blood drive is on May 18th!!!
April 20, 2005 Day +749 Day #447 off treatment
Wednesday is here. It is Thursday for us since we are off Friday. I told you we would be ready for it by the time we got here and we are. My pocket book may not be ready for 2 off days, but I am. We had a busy afternoon. Daddy took half day off to go with us to get tires for my car. Thanks Paw Paw! We ate at Sonic while we waited and the boys enjoyed sitting outside. After that we went home and Logan took a nap and Taylor and daddy played ball. Taylor had ball practice this afternoon. He did good, but it was kind of different since Coach Johnny is sleep deprived right now. Congratulations on the new baby boy! Guh came over and visited with Logan while Taylor was gone. Pippy and Pop took Logan to Tannehill for a bit while Guh and Taylor visited. Taylor is going to have Pippy and Pop all to himself tomorrow when they go fishing. He has been sitting on go since Monday. Every morning he asks "how many sleeps" or how many times do I go to school until I go fishing"? He even told Miss Shannan that he would not be at school Thursday.
Logan had a good time riding his 4 wheeler at Tannehill and just running around getting undivided attention. He cried and cried when Pippy left. He was sound asleep as soon as I put him in bed. In fact I had to dress him in his bed because he wouldn't lay on the changing table, he was reaching for the bed. Silly guy! Taylor stayed here and played with Guh. They played ball then came in and did a hidden picture game. Taylor loves those and he is good at it too.
Taylor has been sleeping on the bottom bunk lately just because he has been falling asleep on the couch and we can't get him up on the top. He fell off the bed the other night. I don't think he would have even noticed had he not hit the step stool that is next to bed. He did that becasue Guh has a high bed that has steps that goes to it and he had to be like her. Anyway, he slept on top last night because I was able to get him in bed since he knew he was going to leave early. He was excited to be up top. He was so funny fixing all his pillows and animals just the way he wanted them. I think it took him longer to get it all situated than it did to fall asleep.
I am sure am thankful that the exciting part of this update was Taylor falling off the bed. Please continue to pray for his success against the beast that once ravaged his body. Pray for little Emma. Emma was diagnosed the same day as Taylor and she is having a hard time. Stop by and visit her at www.caringbridge.org/ar/emmagrace Pray for all our friends that are fighting diseases.
April 19, 2005 Day +748 Day #446 off treatment
Another day down. It was an average day. No news to report. Logan is pitching a fit because he is tired and doesn't want to believe it. Taylor is outside riding his gator in the front yard. He is fully dressed as Spider man. I know he is sweating in that suite, but he insisted on wearing it. I am so sleepy I can hardly hold my head up. I took some sinus meds and I am about to fall over. I have absolutely nothing to tell you all and I guess that is a good thing.
Please remember to mark your calendar for May 10th at 6:30 is Taylor's school program. Wednesday, May 18th is Taylor's blood drive at Pleasant Hill UMC from 2:00-8:00. If you are interested in volunteering to register people or give out refreshments please let us know. Bracelets are due in Friday. We will be selling them for a minimum donation of $5. You will also have the option to by Taylor's bracelet and a Camp SAM or a Cure search bracelet for $7 or all 3 for $8. Jim is setting up a store page where you can by then via Paypal or if you are local you can contact us directly. I can't wait to get these bracelets out and start raising awareness for all of these things. Please email us if you are interested, sales will begin as soon as Taylor's bands come in and we are expecting them Friday.
Please pray that these boring, no news updates continue. Well, maybe some funny stuff to tell you would be good, but no medical issues. Pray for all our friends that are battling one illness or another.
April 18, 2005 Day +747 Day #445 off treatment
Another wonderful day. We went to school as usual. I was by myself and I have a horrible sinus infection, so I was a little "mean" so I was told. I don't think I was, but they told me otherwise:) My kids were good. We met Jim for lunch after school. We never do that anymore since he eats at 1:00 and we don't leave school until about 1:15. The kids didn't eat since they had just eaten at school, but they enjoyed themselves anyway. We went straight home after that since Logan fell asleep. He slept until nearly 4:30. I laid down since my head was about to explode, but I never went to sleep. Taylor kept asking me questions and coming to see if I was done sleeping so that he could go outside. I finally got up at 3 something and let him go out. He caught a caterpillar and put it in a jar. He is a little to rough, so they wont last long he tends to squeeze to hard. I cleaned out Logan's closet. It better not get cold again since I put all the winter stuff in the yard sale pile. I pulled out all the summer stuff and packed up all Taylor's too small stuff. We are having a yard sale in Sunny Meadow's subdivision in the Oak Mountain area on May 7th if anyone is interested in clothes adult/baby, baby stuff, toys, bedding, you name it and it will be there. Come out and take a look.
The boys played outside until nearly 7:30 last night. Logan went right to sleep after eating the best dinner he has had in some time. He ate over half of a jar of baby food green beans. He also ate some cheese and cookies. Taylor ate okay as far as real food goes, but then ate a lot of snack food. He scared me to death. He asked to go play downstairs around 9:00 last night, so he went down. I never heard or saw him come back up. I cleaned up the living room making several trips to his room to put stuff away. I put away his laundry and that meant opening and closing the closet and drawers several times. I was not quiet and obviously not paying much attention to the things around me because I went to throw a stuffed animal on the bed and there he was sound asleep. I jumped about 3 feet when I saw him.
Please pray that Taylor is cured forever of this disease. Pray for those who are just starting or who have lost a loved one to cancer. Pray for all those who are fighting some sort or illness or injury. Pray for our troops and the family left behind missing them.
April 17, 2005 Day +746 Day #444 off treatment
Another busy day. We went to the 9:00 church service today since we had to be at the zoo at 1:00. That was early for us to start moving on a Sunday. After church we played outside for a bit until time to go. We had so much fun at the zoo. We saw familiar faces. We saw kids that looks so great and others that looked as if they didn't feel well or not as well as last time we met. It is so heartbreaking to see those kids suffer, to remember what it was like to be at that point, to think it could be us again in the blink of an eye. Oh, how I pray to never walk that walk again. I want to stay on this side. I want to show people Taylor and let him be a shred of hope, to lead them to Jesus with our story, with our miracle. However, every kid there had a terrific time and we thank Camp SAM so much for what they do for our kids. If you would like to help Camp SAM you can go to www.campsam.org to donate. You can also buy a wrist band. We have them to sale with our wrist bands. If you are interested please let us know. Taylor's bracelets are due to be here on Friday, April 22nd. We are so excited about them, let us know if you want one of his too. I know you all want one:)
Taylor played at the play area for the longest. He would have been happy right there all day without ever seeing an animal. Logan on the other hand could have done without the entire trip. He screamed even heading towards the swinging bridge. He screamed getting near any cages or tanks or anything zoo related. He screamed as we inched closer to the carrousel even though he did enjoy waving as Taylor went by. He was so funny, he would watch for him them wave and say hey. He did sit on the play frog and kiss the turtle. He enjoyed the train ride too. The monkeys were not active at all and that was disappointing. Last time they were so funny. Taylor touched a snake. Crazy boy! He loved it even though the picture shows a little fear in his eyes. He liked looking in the small windows at spiders. We made a quick stop okay so a long stop at the gift shop. Taylor got an alligator truck and then we were on our way. We stopped by Lowe's for weed stuff and then we went home.
Guh came over shortly after we got home and we all played outside for most of the afternoon. Guh, Logan and I went to the Waffle House for dinner. Taylor wanted to stay and help daddy "work". They did some yard work while we were gone. It is now 9:30 and we are pooped. Logan is in bed and has already woke up crying. I guess he is just so tired. He may even have cramps after so much activity this weekend, he isn't used that much going on in one weekend. Taylor just got out of the tub and got new Ninja Turtle band aids on all his boo boos. He looks like a walking ad for band aid companies. It is nice to cover a real boo boo rather than a needle poke. I was also thankful for a normal platelet count!!
That about does it for this weekend. It was very busy and we loved every minute of it. Please pray that we continue to have these fabulous days. Pray that Taylor is NED forever. Pray for all our friends that are battling diseases. Pray for our troops. Don't forget the blood drive on May 18th 2-8pm. Pleasant Hill United Methodist Church.
April 16, 2005 Day +745 Day #443 off treatment
What a day we had today! We went to the ballpark and as we were pulling in a parking spot Jim remembered that Taylor's ball bag was in his jeep. I went back to get it and got back at 9:00 on the dot. I was so glad not to have dug out duty today and I got to sit and watch. We had made Logan a "Taylor's Bubba" shirt that matched our shirts. He was cute as pie in it. He fell and scraped his knees first thing, but he didn't care, he just kept on trucking. Taylor did great!! He hit 3 for 3 coach pitch. He never even used the Tee today. You go boy! He played first base and he gets distracted to easily there, but he still did good. He was cracking us up with shades on and his hat backwards. He was cool as a cucumber! After the game we went to Tannehill with Gam maw and Paw Paw. The boys loved it. We will have to go back when trade days are not there and let them really play. It was so crowded that they didn't do a lot. We saw a ton of familiar faces and it was a lot of fun. Taylor rode the ponies all by himself. Logan got his money back, he balled up and wasn't even going to attempt to sit on the horse. We went and sat by the creek for a little while. Taylor was running and jumping and tripping over roots and I was a nervous wreck. When we left we just drove around for a while and let the kids rest. We stopped by "miss Cath Cath's" house and played with the dogs. Logan and Taylor got a real kick out of that. We all went out to eat too. Logan had a little melt down then, but he was just tired. Jim and Taylor went home and did yard work and the rest of us hit the mall. We got some cute clothes for the boys and us. We had fun just sitting and chit chatting and people watching. That was very interesting! Logan was gone for the night and we brought him home and put him to bed. Taylor came out to say hey to everyone and was running around the drive way in his t-shirt and undies. He fell and skint both knees and ankles. He is going to hurt when he walks and he is going to be sure to let me know about it. He cried for a bit, but we pulled out the spider man band aids and got him all fixed up.
It was nearly 11:00 when we finally got in the bed, but I don't think any of us budged all night. We had a great day and are so blessed to have had this wonderful day. I was glad that this biggest problems of the day were scraped knees, left ball bags and where to sit in the car. Those are problems I can handle!
Please join us in praising Jesus for the blessing he has bestowed upon us. Praise him for Taylor's success against NB and pray that he never again faces cancer. Pray for perfect scans in June and the port removal to be easy and pain free. Pray for all the kids who are battling cancer and other illnesses.
April 15, 2005 Day +744 Day #442 off treatment
Before I get into today's update, I need to make an important note. Please re-mark your calendars for the blood drive. Due to some scheduling and staffing issues at the Red Cross we have changed it to Wednesday, May 18th 2:00-8:00. This was an inconvenience since we had already made announcements and stuff, but it does give us more time to advertise and what not. Please let me know if you have volunteered to work and need to change your times due to this change.
Today was your average day. We went to school where Taylor immediately changed shoes. I keep a pair of tennis shoes in his bag since he often wears boots that may end up hurting his feet. This morning I put his blue tennis shoes on him. He doesn't like those because they are not spider man, but I asked him them to wear them for me. He agreed very easily and as soon as I left his classroom this morning he took them off. I guess he wore them for me as long as he could. Stinker! Right now he is watching cartoons. He never watches cartoon network, but all the other channels had commercials and he never believes me that cartoons are coming back so he chose the one cartoon he saw. It was not showing much when I turned it on, but soon he realized it was Ninja Turtles and he is so excited. He wants to go tell Ethan right now. He has no clue what Ninja Turtles is about he just knows that Ethan loves them and therefore he does too. Logan is napping. He did not want to leave school today. He was in Miss Becky's lap as happy as could be and he reached for her with every step I took towards the car. The boys are having an all boy night. I am going to Guh's for a candle party.
Last night Taylor had us cracking up again. I had bought an infant girl pj set for a gift. I was showing him his and Logan's new clothed and I told him that the pj's were his. His told me no they were too little and they were for Logan. I pointed out that they were pink and asked if he was a girl. He avoided that question and just kept telling me they were too little and I kept asking. He finally said with all seriousness, "no, I'm not a girl. I am a man". I laughed so hard.
Well, that is all I have for today. This will be a busy weekend with a 9:00 ballgame tomorrow and a trip to the zoo Sunday. We will update again on all that fun. Please pray that Taylor has beaten this disease and will never again face cancer. Pray for all our friends who fight this fight.
April 14, 2005 Day +743 Day #441 off treatment
We had a good night last night. We went to ball practice. Now that the time has changed we are able to have it a little later and I just have to get Taylor there and I can leave shortly after. I would like to stay, but Logan is not so cooperative, he wants to be in the middle of the field. Today we followed the smoke from the Tannehill General to practice. It had been burning for hours. It is sure gone and that is sad. For those of you who are not local "the General" is a gas station that everyone went to for everything from gas to dinner. Now it is a big empty spot. Maybe they will rebuild it. We met everybody at The Plaza for dinner. Logan ate pretty good considering he had already eaten at home. Taylor didn't do to good, but he came home and ate it. They had a good time playing in Gam maw's new car. Taylor is ready to test it out on another trip to the beach. I told Taylor that his shoes were on the wrong feet and he said his usual response to that "they feel better". I told him "whatever floats your boat" and he said, "that really does just float my boat". I about died from laughing! He kills me with the things he comes up with.
Today we went to school as normal. I asked his teacher and he did not sit in time out yesterday, so I guess he was just tricking me. He is so goofy! We had a good day and there is really nothing to report. We saved all the excitement for when we got home. I picked up the living room and got the vacuum out. I was going along about my business and turned to tell Logan to sit down. He was trying to jump off the fire truck bed that is still in the living room. Anyway, while I had my head turned I sucked something up. It made a horrible sound and when I turned to see what it was I about died. It was night night! I turned off the vacuum and tried to get it out, but it wasn't coming out. By now Taylor has spotted me and realized what it was and went into hysterics. He was covering his face as if in shock and just screaming. I felt awful. I didn't know rather to rip it out, pull gently or stop and console him. I finally got it out and night night is fine, a little dirty, but okay. Taylor calmed down after a few minutes of cuddling with night night. He has since put it in his room and has asked several times where it was and then says he will leave it in his room. Poor baby!
We went to Wal-mart tonight for a few things. You know how that goes, you go in for a handful of things and come out with a buggy full. Taylor slept through the trip as well as dinner and woke up as we checked out and wanted to eat. We had to stop at Sonic for him. He ate almost every bite, so it was worth the stop. He is doing his breathing treatment right now. He usually falls asleep, but I don't know if he will tonight. He had that long nap and he is itching to get to his legos. He has big legos and I pulled out a box of small, big boy legos as he calls them. I thought he had never played with them, but when I dumped them out some things were put together. He said "me and uncle Dugan did that". I have no clue when he and Dugan built with legos, but if he said they did I bet they did. He doesn't forget anything.
Please pray for Taylor and his continued success against cancer. Pray that he never again faces cancer treatments. Pray for Morgan and her family as they come home tomorrow from the last treatment. Way to go Morgan! Congratulate her at www.caringbridge.com/nc/morganbarnes Pray for all our friends who are battling some sort of disease.
April 13, 2005 Day +742 Day #440 off treatment
Welcome back to Taylor's page. We have had an average day today. Nothing special to report. Taylor was happy to get back to school and played great. He said he got time out, but then he said he was tricking me. I am not sure if was really teasing or if he thought he would be in trouble. Logan had a little melt down. Pop came by the church and he didn't want him to leave, so he came to me and then he was heart broken when I had to leave him in his class. He took a nap and got over it, but now he is in his bed screaming because he doesn't want to nap now. He will live! Logan is still not eating much at home anyway. He eats at school, so I guess that is all he needs. Taylor on the other hand is eating me out of house and home. I find it very amusing that the child that spent months on TPN (tube feeds) and a year of his life eating very little if anything, is the best eater in the class. He is still picky but that too is going away slowly. He is getting better at trying things and usually likes it. His nutritionist will get a kick out of that. Her little boy is on Taylor's baseball team, so I will have to tell her that.
We have ball practice tonight if the rain hold off. It is sprinkling right now but it is still sunny. Maybe it will pass on by and he will get to go. I am not looking forward to chasing Logan, but Taylor loves it. I got Logan up but he is so tired that he is just walking around crying, so he is back in bed. I think he will go on to sleep this time although that will make him a fireball at practice:)
I told you there was not much to tell. I am so thankful for that. Don't forget the blood drive 2-8 on April 27th. Please come give blood and help us run the show!
Please pray for Taylor's continued success against the beast that once ravaged his body. Pray that he never again has cancer in him. Pray for all our friends that are fighting this and other battles.
April 12, 2005 Day +741 Day #439 off treatment
Welcome home Taylor! He got home around 3:00. He had a blast. It has not been to the beach since he was 16 months old and I know that he would have lost the fear he had over time anyway, but to never have seen it again he did great. He was rolling in the sand and digging and splashing in the ocean. He didn't like the waves, so he was barely getting his feet wet. He had sand from head to toe. How great is that! He did some shopping and got a cool spider man fishing rod. He has been "fishing" in the yard. He was a good boy while he was gone and has been a good boy since he got home.
We played in the yard and Taylor was hitting great! He tried right handed and seems to be doing a little better. We do not want to confuse him, so we will see what he does. Isn't it great that his biggest worry right now is rather to bat left or right handed. Guh came over to visit. Taylor allowed Logan to come in his room and play. Gam maw and Paw Paw had to come back over because Taylor left Bozo and night night in their car. We had to sneak and go to the bath tub when they all tried to leave at once. Taylor is over the crying thing when they leave, but he has to watch and you have to scratch your wheels. Logan cried and cried so we took off the bathroom and distracted him. It worked okay. He was so ready for bed even though he had taken a late nap.
We had roast beef for dinner and I cut it up and told them both it was ham. Taylor ate 2 pieces and Logan had a bout half a piece. Yahoo, some new foods. Taylor is still rather snotty and coughing, but I am convinced it is pollen more than anything else. Logan is also snotty, he has not been coughing as much, but still has a little cough.
Don't forget the blood drive April 27th 2-8pm. Please come give blood and stick around to help out. We would love to have you!! May 10th 6:30 is Taylor's school program.
Please pray for Taylor and his success against NB. Pray for Morgan as she finishes up her last round of 3F8 and get her port out!! Pray for Cam has he heads to NYC and figures out what is going on with his platelets. Pray for Carter as he treats a suspicious spot. Pray for all the other kids fighting some sort of disease.
April 11, 2005 Day +740 Day #438 off treatment
Welcome back to Monday. It was not so bad, but we miss Taylor. I have not talked to them today, but I am sure they are having fun. Logan walked around all morning calling out "Bubba". He misses him too. We went to school where we had a good time. We were out of there fairly quick. Most parents were early, but it is much easier to get out when I don't have to drag Taylor out. He loves it so much and I am so glad.
We have no plans today other than I am going to try and get as much done as I can while Logan is asleep. The house is not really that bad other than the mountain of laundry that needs to be washed and then the other mountain that needs to be put away. I would rather scrub toilets than do laundry, anyone that wants to make that trade, let me know:) I do not know why I despise putting it away so much, but I do.
Taylor will be back sometime tomorrow. He will be back just in time for the weather to cool off again. I hope it doesn't get too muddy and cold again, he will be real mad if he can't go outside to play soccer. He is asking to play soccer so I guess that is our next adventure. We will see.
We will update again tomorrow. Have a happy week to you all. Please pray that Taylor is NED forever. Pray that cancer never again invades his body. Pray for Morgan as she does her last week of 3F8 and has her port removed!! Way to go Morgan! Pray for all our friends battling cancer and other illnesses.
Remember the blood drive on April 27th 2-8pm, Please email me if you are available to volunteer to work a 1 hour shift. Our 2-3 hour slot is nearly full. We hope to see you all there as donors and some of you there to work. We appreciate it. We hope to have Taylor's wrist bands in by the blood drive.
April 10, 2005 Day +739 Day #437 off treatment
What a dramatic morning we had. Jim left at 4 O'clock this morning to go to the hunting club and he didn't take Taylor. I got up and got in the shower this morning when I heard Logan start to stir. When I got out I heard no noise so I thought that Taylor was still sleeping and Logan was playing. I went to shut Taylor's door and then get Logan up. I saw that Taylor was sitting up. He was quietly crying because his daddy wasn't home. He thought he had left for work without him seeing him go. Well, when I told him he had gone somewhere with Paw Paw his little eyes got big. He knew where "somewhere" was. He was fit to be tied. He got over it and went on about getting ready for church. When it was time to go he wanted to wait for daddy to get home. He was okay though and he spoke to them when they got home, he didn't give them the silent treatment.
We all went to lunch after the guys got home. Gam maw and Paw Paw were on their way to the beach and has asked Taylor to go. He said no, he didn't want to miss school. He changed his mind and was packing his own bags before we even had a chance to ask them if they still wanted his company. He will look like an orphan seeing as he did the packing himself and he picked some real pretty stuff:) For example, he picked some fluorescent green shorts with orange, yellow and blue sea creatures all over them with an orange shirt. That is just one of the many lovely ensembles he picked out.
Jim and I went to to some shopping and then we came home and did nothing. Temperance and I went out for a bit later on and then we were home by 8:00. We did nothing for the rest of the night. Logan didn't have a nap today, so he was out like a light. He has an awful cough and a runny nose. Taylor's nose is awful. I took him off the Singulair and now he is all snotty again. I put him back on it, but I am not sure if it is that or all the pollen, but he will stay on it for now anyway.
I stood up in church today and announced the blood drive. Please volunteer. Please email me the times you can work and I will be sure to get you signed up.
April 9, 2005 Day +738 Day #436 off treatment
Wow, what a ball player we have on our hands. We are so proud of him. It has been a long day. We started at 9:00 at the pottery party. We had each boys hand or foot painted on several plates, mugs and tiles. I can't wait to see them. We will have them by Mother's Day. Taylor is an old pro at doing that stuff, but Logan was too young to remember doing it and he wasn't real sure about it. He would not let her do his hand, so we did his foot and he cooperated, but he looked at her like she was crazy. We left there and headed to the ball park. Taylor did so good. He hit great and charged the ball every time it came near him. He was really paying attention and doing a great job. Logan was having a good time too. He was loving a real gator that was parked by the field. It was much warmer than it was last week and he was able to play outside rather than in the press box although he did have fun in there.
After the game we had lunch at Red Lobster. It sure was fun and yummy. We then had to make a hurried trip to Wal-mart and go to a birthday party. My kids had so much fun. Taylor played ball outside with the big boys and they went fishing at aunt Jackie's pond. Logan had toys all over to play with and all sorts of riding toys outside. Neither one wanted to leave, but they both fell asleep on the way home.
It was a lovely day full of normal activities and we loved every minute of it. Pray for Taylor to remain NED forever and that cancer never again invades his little body. Pray for all our friends that are fighting the fight. Pray for all our troops.
April 8, 2005 Day +737 Day #435 off treatment
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I can not believe it is already April. I know we are 8 days into it, but as I was calling roll this morning and getting the calendar ready for next month, I thought how in the world are we already preparing for May, for the end of the school year? It was just Christmas the other day, wasn't it?
Taylor woke up with an awful barking cough this morning. I am not sure why, he was fine when he went to bed. I gave him a Xopenex breathing treatment this morning and he did cough up a lot of gunk. He has not coughed since he has been home, so we will see how he does. Logan refused to eat last night and he didn't sleep well at all and I think he was just hungry. He didn't eat much breakfast either. I don't know what I am going to do with him. We all had a good day at school and we are looking forward to a nice, warm and rain free weekend.
Taylor and Logan have a pottery party to attend in the morning rather they want to or not. I need their hands to make my piece beautiful. After the party we will go to the ball park for a little batting practice since they missed practice this week due to rain. Their game is at 10:15. We then have a Red Lobster date:) I can't wait for that! Other than that we have no real plans this weekend. Taylor just wants to play outside. All this rain is about to kill him.
Please continue to pray for Taylor and his success against Neuroblastoma. Pray for all our friends that are battling cancer and other illnesses. Don't forget the blood drive April 27th 2-8!! If you are interested in volunteering for the blood drive please let us know via email. I need people to take 1 hour shifts, but you are welcome to stay as long as you want.
April 7, 2005 Day +736 Day #434 off treatment
We had school this morning as usual. We all had a good day. We left school and headed straight to Children's Hospital for Taylor's 6 month hearing evaluation. Paw Paw met us there to watch Logan so I could be with Taylor. The weather got really nasty right about that time and he got stuck. He made it though and I brought Logan out to him and by the time I got back in the audiologist room they had started without me, so he did it by himself anyway. He started out in the room by himself and the guy used a microphone to talk to him, but he got upset and started to cry, so the man went into the booth with him and he did fine. He has .5 decibels improvement in his left ear and .5 decibels increased loss in his right ear. It has to be .10 before it is considered significant enough to worry about. That small amount could be just him not cooperating this time or the past tests that he compared it with. We will not have another test until April 10th 2006 unless we notice a change here at home and want him checked out. He did notice that he had some speech issues. I have known this forever, but everyone always said he will correct it. He has corrected some of it on his own, but he still has trouble. For example, he say cruck rather than truck, sand rather than hand, cree rather than three. He will have that evaluated on June 7th. The week that we come back to school after being off 2 weeks. Figures huh, I told her if their is a cancellation the week we are out to let me know. I want to get it fixed, but I do not look forward to weekly drives to the hospital for therapy. We shall see how that turns out. We were headed back home by 3:00. I was going to stop and get my drivers license renewed, but it was raining and I didn't want to get them out and drag them in, so we will try again tomorrow.
Pray that Taylor is NED forever. Pray for all those battling cancer or other diseases. Pray for our troops. Pray for those who are just starting this journey or have just lost a loved one.
April 6, 2005 Day +735 Day #433 off treatment
Stormy weather, again. I know we need rain, but I am tired of it. I think we have had enough out yard has anyway. We are under water. Taylor wants to ride his 4 wheeler through the river in our front yard.
We have had an average day. Taylor wakes up every morning when Jim opens the garage door and goes coo coo trying to get in the living room to see him drive by the house. This morning he woke up at about 4:40 crying out for Jim and asking if he was home. I told him he was in bed and to go back to sleep. A few minutes later here he came to my bed and crawled in. Both of us parked outside last night rather than pulling in and therefore Taylor didn't get woke up when he left. Well that was good as far as I was concerned, but when he woke up and realized that Jim was gone he flipped out. I had to call Jim and let Taylor talk to him. He was fine after that. We all had a good day at school. Logan had on a t-shirt that said Everybody loves an Auburn baby. He was real fussy this morning so his teacher turned his shirt backwards so that he couldn't see it and he was happy then so she says. I guess you can tell she is a big Alabama fan. We all had a good laugh out of it and they put his shirt back. After school we went to CVS to get all Taylor's new meds. As usual we had trouble and didn't get it all and will have to go back tomorrow. Dr. Petelos tried on all the spacers for his inhaler and he needed a medium. He wrote that on the script. In fact, it was about the only thing on the script that was legible:) Well as things usually go after waiting 15 minutes on her she gives me a small. I looked at it once I was in the car and I wasn't going back in so I went through the drive through. They have ordered one and it will be in tomorrow. We shall see if it is there or not. Anyone care to place a wager?
We got home just as it started to rain, so luckily we stayed dry. I have been on the phone with the Red Cross. Mark your calendars. Wednesday, April 27th from 2-8 will be the 3rd Annual Taylor Watts blood drive at Pleasant Hill United Methodist Church. The times could be shortened, but I will let you know if that change happens. Please spread the word to everyone you know that is local and can come out and give blood. We know just how important those donations are. Taylor would not be here if it were not for the many people that donated for him or just donated and he got it. Please come out to help us help others.
Another date to remember is Tuesday, May 10th at 6:30PM is Taylor's end of the year school program. He will sing songs with his class members and show off some art. As of right now, I know of no limits as far as numbers of people that can come per child. I will let you know if that changes, but if not feel free to come see yet another milestone in Taylor's life. I know that this is the first school program for a lot of kids and that is special, but it is extra special when we were not sure Taylor would ever attend school. Logan's class will do it during the school day. I am not sure why since parents that work can't get to it, but what really can the infant class do?
Please continue to pray that Taylor has beaten this beast forever. Pray for all our friends that are doing good today. Pray for those who are not doing well today. Pray for my dear friend Sharon, she is just having a hard time right now. I am thinking of you Sharon. Pray for all the kids and adults out there that are fighting some sort of disease.
April 5, 2005 Day +734 Day #432 off treatment
Cat scan day. It sure did get here fast. We had to be there at 10:00 and we were a little early and got checked in. He weighed in at 34 pounds and 39 inches. After we weighed in we went to color and wait to have his port accessed. We sat there about 15 minutes and I looked at my watch and it was 10:40. I am not sure what I was thinking and I took off upstairs to the CT area. I was all a fluster thinking we were going to be so behind because we didn't get up there faster to drink his contrast. We had just gotten settled into the waiting room when the tech came out. I handed her the cup to add the contrast to and thought we were ready to roll when she told me the nurse called and said we were not accessed yet and to come back down. I have no clue why I missed that! We ran back down and had that done. We came back up and we had been pushed to the end of the line. It was about 11:40 when we finally got on the CT machine. Some good did come out of it. After she told us to go back down I went to ask if he could go ahead and get his contrast started and she said he didn't have to drink it today. Yahoo! Since he only had a chest CT the contrast that was injected into his port was enough. That also made the entire process about 10 minutes. We immediately got cookies and tea since he had been NPO all that time. We went back to clinic and hung out until he was called back. We waited a while in the room, but it was fine since we were reading a book. Dr. Berkow stuck his head in the door and asked if I wanted to come see the CT pictures. I have no clue what I was looking at, but I could see that it was cleared up. There is one small spot still on the bottom, but that is okay. We are sure it is atalectisis, reactive airways. His lungs sounded clear. We are setting up the next set of scans for June and also a port removal surgery!! This time we are getting it out! I hate he can't get it out before Disney World and ball season ending, but I do not want to have him sedated any more than needs to be. He will do his CT and MIBG injection on a Wed., his MIBG scan on Thursday and if all is fine the port will come out in the OR and bone marrow biopsy and aspirates will be done on Friday or Dr. Barnhart (our surgeon) has an available day. I am not sure yet of the dates, but I will let you know when we get it all figured out.
After our stuff was done we had lunch outside on the hospital patio. Guh then took the boys for a stroll around the lobby while I went to see Davis. Davis is a fellow NB friend who has just had his transplant. Keep up the good work Davis! I saw while I was there that another NB friend, Bailey, was on the transplant floor. Keep him in your prayers as well as all the cancer kids. We ran by Guh's for a while. She got Logan a cozy coupe, but we could not get it to snap together no matter how hard we tried. So, rather than a cozy coupe he had a convertible with no door. It was funny. We left there and went to see Dr. Petelos, the regular pediatrician. Logan was due for an ear re-check and Dr. Berkow had told us to see Dr. P about an asthma routine since we now know for sure that is the issue here. Logan still has fluid on his ear and it has been infected or had fluid since December, so we are going to see Dr. Hill the ENT. I hate for him to go through a surgery, but I am so used to all the big stuff that this will be a breeze. However, they have not made mention of tubes, just that an ENT needs to take a look. I remember when Taylor got tubes. He was 10 months old and everyone took off work and came to the hospital. I was in tears when they brought him back and he was all groggy from the sedation. Now I am so used to it that we don't even think about it. Kinda sad, huh? I am also glad to say that he weighed in at 22.2 pounds, finally we got past the 21 pound mark. Anyway, as for Taylor, we have that all figured out. He will stay on the pulmicort via the nebulizer twice a day. He will keep the xopenex for when he is really thick and yucky basically when he is sick. He has written a script for an inhaler that he can use before his games or strenuous activities or if he has an attack and needs a "rescue". Taylor was pleased with not needing 5 nebs a day and I was pleased not to fight him on it anymore.
We met daddy, Gam maw and Paw Paw for dinner. The guys all went back to our house and Gam maw and I went to her sorority meeting and a baby shower. It was fun. We got home around 9:30 and Logan was gone to bed, but Taylor was up. He is in bed now on the top bunk. Logan is coughing like crazy. I just snuck in and gave him some medicine, so maybe he will stop and sleep okay. I better go get in bed. I wanted to be sure that you all knew how the day went. Praise be to God for the good news. We have been so blessed throughout this entire journey. Please pray that Taylor is NED forever. Pray that Logan never faces such things. Pray for all our cancer friends.
April 4, 2005 Day +733 Day #431 off treatment
Back to school today. Logan was still up at 6:15 even though that is really 5:15. His little body must think it is law to get up at 6:15. Neither of them were ready for bed last night. That time change got to them. I had no trouble going to bed right on time. Taylor got in bed and then got up to potty. He went to "check" and see if daddy was down stairs and managed to stay down there until nearly 11:00.
We had a good day with no excitement. Taylor drank all his tea so I had to get him a coke out of the machine. He ate noodles with butter on them a first for him. That isn't any better than the macaroni and cheese, but it is a slight change. He also ate some onion ring potato chips another first. I am going to the grocery store tonight and it will be nice to make a few changes in what we buy. He has been on an eating rampage these last few days. He had 2 bowls of oatmeal this morning and then ate his crackers at snack and asked could he have CJ's because he wasn't eating them and ate those too. He ate all his lunch then came home and ate graham crackers. Pig! I am not sure how Logan did at school, but he didn't it any breakfast. He has just lost interest in eating these days. He has gotten better at drinking his pediasure, so maybe he is getting what he needs there.
Again, I give you a boring update, but that is okay. Please pray for tomorrow's CT scan. I am a little scared just because I realize that the results could change out lives, but at the same time I am calm. I am watching him eat like a horse and run wild all day and night. I know that kids have been active and relapsed, but he just looks too good to be sick. However, pray that the spot has disappeared and it was only reactive airway and not in anyway cancer related. Pray for Morgan who is in NYC for her last treatment. Pray for Davis who is recovering from his stem cell transplant. Pray for all the other kids out there that are fighting diseases.
April 3, 2005 Day +732 Day #430 off treatment
Today spooky things have been going on. I told you a few days ago about us thinking that a power surge had hit Taylor's DVD and CD players since neither would work. Well, a few days ago Taylor, Guh and I were in his room playing and all of a sudden music came on. The CD player was left in the play mode when we were trying to get it to work 3 days before. Whatever, I turned it off and just wrote it off as odd. Well, today, 6 days later the thing came on again. I am going to assume that Taylor played with it even though the toy I sat on top of it was still there. It took me a minute to figure out what it was. Logan is asleep and he has his radio on, but this music was very loud and then I realized it was a Blue's Clues song and figured it out. I am not sure why it did it. I turned it off again and we will see when it comes back on.
Working the nursery this morning was fun. Logan could have cared less that I was there. He played by himself, but he was the oldest one there, so he didn't really have anyone to play with. He played fine. He climbed on everything and ate cookies. He sat in my lap about 2 seconds, but that was after I put down someone else.
Once we got home we had some lunch and then Logan took a nap. I cleaned up and did laundry. Ghen Ghen and Bob came by to see Taylor's new bed and they brought Logan a truck. He loves it. Taylor does too. They did pretty good with it. Taylor can drive it and Logan sit in the back, but Logan can't move it when Taylor sits in the back. They still had fun. Taylor and Jim got home around 4:00. We went outside and played for a while. Pippy and Pop came to see Taylor's room and Logan's truck. They boys showed them all their tricks and acted like goof balls.
The time change has us all crazy. Logan isn't ready for bed, but it is time. Maybe it wont take him too long to get back in the swing of things. I guess I better go. I have a mountain of laundry to fold and put away. Logan is finally in bed and quiet. Taylor still needs a bath. As you can guess after a day at the hunting club he is filthy.
Please pray for Taylor's scan on Tuesday. Pray for him to be NED forever. Pray for all of the kids and adults that are fighting cancer. Pray for those who are facing difficult times. Pray for our troops.
April 2, 2005 Day +731 Day #429 off treatment 2 Years Post Transplant!
TWO YEARS POST TRANSPLANT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! What a wonderful achievement for Taylor! We can not believe how far we have come since October 10, 2002. For someone who was given a 30% chance to live, here we sit today watching a true miracle play baseball and go to school. Who would have thought it? ALL OF OUR SUPPORTERS! Thanks goes out to everyone who donated blood, said daily prayers for Taylor and helped us get to where we are today. We could not have done this without everyone's support and prayers. I have put some pictures below to look at what Taylor looked like 2 years ago, and what he looks like today, enjoy! To look at all the transplant pictures, click here.
What a day we had. It started early. We had to be at the ball park at 7:45. Taylor's team was the first in line for photos. We did much better this year. He smiled, a fake smile, but a smile none the less. He did great with the group photo where as last year he was looking down. Logan on the other hand wanted to be right in the middle of everything where as last year he slept through it all in his stroller. We left the picture area to go to the field and play his 1st game. It was so windy it was insane. We played the entire game, but the boys were in coats and gloves and snotty noses. The still did great. Taylor is doing so much better from last year. This year he is really playing ball. He even yells time when he gets to first base. That was his position today. I had dug out duty today and that was no fun. It wasn't bad, we had it all under control by the end of the game:) Taylor brought rice krispy treats and chocolate chip cookies and everyone got their choice. After the game we went to the Olive Garden for Taylor's celebration lunch. He ate great as has been the norm lately. Logan didn't do too shabby himself. About half way through lunch Taylor realized that he didn't get to play at fun day, we had skipped it since it was so cold. Well, we got to go back. I couldn't deprive him of something that this time last year he was scared of. We went back and paid $5 for about 15 minutes of playing, but it was well worth it. He had a blast and not only was he playing in the moonwalk/obstacle course, he was in it with much older boys that were being way to rough and he was loving it.
We finally made it home around 2:00 and we just hung out for a bit. Guh got here around 3:00 and Jim and I left to go to a wedding. That was fun. It was a high school friend and it was great to see so many familiar faces. It was a beautiful wedding. Once we got home from that we went to the mall just to get out and about since we haven't done anything today:) We are now back home and Taylor is helping Jim put something together. He is cracking me up saying "sure, no problem" every time Jim asks him to do something. He did say a bad word today. Hmmm.... I do not remember what it was that happened, but he said "oh d---". I didn't make a big deal out of it since I know that would just cause a bigger issue out of it, but we did talk about it not being a nice word to say.
Tomorrow Jim and Taylor are riding down to the hunting club and doing a few things. Taylor is excited. I am going to work the nursery at church, so I will get to see how Logan does with other kids. I only get to spy on him briefly throughout the day at school. I have a feeling that the clings to me rather than plays. We will find out.
I guess that about does it for today. It was a fabulous day and we are so very thankful to have spent it doing the things that we did. Don't forget to set your clocks ahead. Please pray that Taylor has a good report on Tuesday when he has his CT scan. Pray that he is NED forever. Pray for all out friends fighting diseases.
April 1, 2005 Day +730 Day #428 off treatment
April Fools Day. I have no tricks up my sleeve so read with no fear. I do have some news to share though. We have purchased silicone wristbands (like the Livestrong bands) for Taylor. They are orange and say Fight Neuroblastoma on one side and www.taylorwatts.org on the other side. They will be in soon and ready for purchase. They will be a minimum $5 donation, but of course you may give more. The money raised will go to local charities such as Camp SAM and Magic moments as well as Alex Lemonade stand and the Children's NB Cancer Foundation. There are others that will benefit from this and you may read about them on the "Taylor's stand" link. Those of you who are not local who are not local to us can purchase them via paypal if you would like. More info will be shared on that when we get the bracelets in and are ready to sale them. I will keep you posted. Also, Bob Sykes Bar BQ has generously offered to let us put a jar (a huge jar) in their restaurant and they will collect any loose change for the same charities listed above. So next time you are looking for a place to eat, swing by Bob Sykes and have some yummy food and drop your loose change in the jar. We are currently looking for a few more places to leave a jar, so if you know of a place or you own a place and would like to help, let us know.
As for today's news, there is none. We went to school where both boys had a good day. I didn't see much of Taylor today as my class was running behind and we got to snack and lunch late and his class was already gone. He did finally take the band aid off the carpet burn boo boo and it is a pretty good one, so I guess it did hurt. Although now that the band aid is off we have to be even more cautious and not bump it. Logan fell asleep in the car, so when he gets up we have to go to the bank and to Wal-mart. Tomorrow is Taylor's day to bring snack for the ball team. He has made 10 changes in the menu since he found out he was doing it. It started out as Spider man gummies then changed to gold fish and now cookies. Who knows what we will end up with once we finally buy it. Taylor is in his room playing cars. We had to bring his car rug upstairs. His room is still clean, it has been clean for a week. Wow! He has messed it up, but he cleans it up with no complaints. I think it is due to moving so much out and it isn't so much to do now. Who cares why as long as he keeps it up. Logan is still napping and even though I really need to get to the bank, I hope he stays there a while.
That is it for now, I told you there wasn't much to share. Please pray that Taylor is NED forever. Pray for his CT scan to be clear and whatever it was not to be cancer related. Pray for all out friends that fight cancer and other illnesses. Pray for Morgan and her mom as they head to NYC on Sunday for the LAST 3F8 treatment. Pray that his trip is fast and they are home soon. Pray for those who are newly diagnosed or missing a loved one. Pray for our troops.
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