Quick Jump: 2nd Quarter 2004: April May June
June 30, 2004 Day +455 Day #153 off treatment
Hello all. Here we are in the Big Apple just sitting around watching Nip Tuck. Excitement is in the air! No, really we had a nice day yesterday. We slept late then went to the 3 Star Diner for breakfast. Taylor was eating away at ham. He did a 24 hour urine collection and could not eat a lot of his favorite things and it made him want a lot. We decided to tell him he couldn't have things on the breakfast table then gave in to his begging. It worked, he ate bacon and french toast. After breakfast we just hung out in the play room of the RMH to kill time until we left for the hospital. We waited a long time for his injection and I must admit it has me nervous about tomorrow. We do not have time to wait, we have a car coming at 6:00 to take us to the airport. We went ahead and turned in his urine even though we did not make it 24 hours, but it was no fault of our own. Taylor peed so much that he filled the little thing they gave us to collect it in. He gave us 8 ounces first thing this morning. He has done great. He has had no accidents the whole time we have been here and he has pooped BY HIMSELF on 3 different occasions. It is so great!! However, there are new problems that come with being potty trained. He was in line with Jim for the ferris wheel at Toys R Us and he had to pee bad. I was waiting on the 2nd floor so I could take their picture when they went by. I had to run and catch the elevator and pull him out of line and run up to the 3rd floor and take him. The women's bathroom was full so I ran into the men's. He was crying and holding himself and I couldn't make him hold it anymore. We then ran back downstairs where Jim had made it to the front of the line and was waiting on him to get on. We decided against going to Planet Hollywood since they were having a Bar BQ at the RMH. We caught a cab back to the RMH. It was the worst ride ever. Taylor was even saying "whoa and whew" as we sped through the very crowded and crazy streets of NYC. Again, we just played until time to go to the terrace for the nights events. We had fun. They had carnival games and pictures. He won all kinds of junk, I mean goodies! He didn't eat much, but Jim and I enjoyed the burgers and fresh fruit. Taylor had fun playing with Morgan.
We are rapping up this trip. I have packed everything we do not need and put away all the dirty clothes and ready to wash the linens that stay here and pack up everything else. We have had an uneventful trip even though we were in the bad luck room. We are in the room that Morgan broke her leg in a few months ago. We are happy to report that Morgan is also having fun and no big events this week. We wish her and Levi luck as they finish up their 2 weeks here. We also wish luck to all our new and old friends that are still here for treatment and tests.
I talked with Meredith and she and Dr. Berkow will do all they can to scan us in Alabama, but it is up to Dr. Modak rather or not we can transfer care back to Children's. I have a sneakin' suspicion that he will not like the idea if for no other reason than they want to study him further for their research. I have no problem with them using him to learn, but I would rather mail him the stuff than fly up here. I don't know we will have to see. He is actually in India right now, so it will take some emailing and calling to get it all straight.
June 29, 2004 Day +454 Day #152 off treatment
Happy birthday Guh. This is the second year that we have spent her birthday in NYC. Taylor did buy her a football card a while back. He really just wanted it for himself, but he justified it that way and he did let her have it.
Well, every trip to NYC has had something happen to make it memorable. Taylor's inpatient stay, the black out, 9/11 anniversary and this time is no different. This time it has nothing to do with the city though. We found out this morning that Jim's grandmother died last night. I guess that will always be associated with this months visit to the big apple. We all went to see Peg last week. Jim and Logan went Monday while I was at my MK meeting and Taylor was at Guh's. I took both boys by on Friday, so luckily we all got to see her and she got to see all of us. She was watching a Braves game, her favorite team, so she did pass doing what she loved. We will all miss her terribly, but she was a strong lady. She had a massive stroke in 1982. She died several times on the operating table and was only given a small chance to live a month or so, but here it is 22 years later and she was full of spunk up until the last year or so. She relearned to write and walk and do things with one hand. She could wash dishes or make a bed better than any of us! Now we have her up in heaven with all of our dear friends and other loved ones and they are cheering on Taylor. If he has half the determination to live as she did, he will live to a ripe old age.
Last night we finally found Morgan. Taylor has decided that she too is his girlfriend. Look out Macey! He has gotten over Anna, the swimming pool girl, but I think that is because he hasn't seen her in a while. He still talks about Morgan and Madison, so I know he has been missing her. We are planning to North Carolina in a few months to do some of the free things he got with his world pass. Maybe while we are there we can visit with Morgan and Madison.
We had massage appointments, so we didn't go to dinner with RMH. It was worth it too. We got a 30 minute Swedish massage and it was great. It was hard to breath when they smashed your head into the pillow, but the massage made up for the lack of oxygen. Taylor was a good boy too and sat quietly eating gold fish while he waited.
We did get our flight changed to Wednesday night, so pray that MSKCC can stay on track and get his scan done on time, so that we get to the airport on time. That is always a stressor when you fly out after a scan. Pray that these scans and tests show NED status. Pray for all of our friends.
June 28, 2004 Day +453 Day #151 off treatment
What a day! As usual Monday was ushered in New York style, crappy. We got to the PDH at 11:00 and we didn't wait very long at all until he had a finger stick. He was upset that finger stick Fay wasn't there. I guess he didn't care that she didn't know his name:) We then played a game of battle ship which he loved. He was called back to see the nurse practitioner. He weighed 31.9 pounds and was 96 cm, I don't know what that is equal too, but he should be about 37in. He checked out fine and we were glad to see that his WBC is back down to normal range, so he must have been fighting off cold last week. We then went to wait to get his port accessed. That took about 45 minutes that was due to us just putting on the emla. He freaked out again. We had to hold him down to get it done, but he quickly calmed down when she let him draw his own blood and shake up the tubes. Then the real fun began. It took about another 2 hours to get called back for the marrows. It wouldn't be so bad if they were not taking back 12 year olds before him when they tell you they always do the smaller ones first. He was so grumpy and hungry as were we!! He did some mazes and he is good at it. After he got of that we went to the new playroom. He was happy in there playing cars and drums. Better here than home!
Finally, we got called back and it took about half an hour. He woke up happy and drinking and ready to eat. We were going to go to the toy store and to eat, but opted for McDonald's instead. We are getting free massages tonight and we didn't want to run late for that. We will go to Times Square tomorrow. Taylor ate all of his nuggets and asked for more. I went to get him some and Jim a cheeseburger. He ended up eating Jim's cheeseburger! Wow!
We have requested that all of Taylor's files since June 2003 be sent to Children's in Birmingham. We do not feel that is medically necessary to come here anymore. We will ask that he still get 4 biopsy/marrows rather than 2 and we will deal with the isotope that we have back home for the MIBG. It is too expensive and frustrating to continue coming here. If he ever needs to come back up here we know that we can, but right now there is no need.
We are now in the RMH playroom and having loads of fun!! Please pray that Taylor has clean scans and biopsies. Pray he is NED and that we will have no problems switching our care back to the south!!
June 27, 2004 Day +452 Day #150 off treatment
We have arrived safely in New York after a crazy landing. The pilot must have been a newbie, because it was a very fast wobbly landing. We are in Room 511 at RMH. We also found out Levi from back home should be coming in today. Maybe we will meet up with them. Morgan and her parents will also be here, so Taylor will have some friends to play with. We are going to leave to go out and get a bite to eat, so later!
We had an early start today, but we are here and having a ball. (please hear sarcasm). We left home around 6:00 this morning. Jim and I ate breakfast, but Taylor slept through it. We woke Taylor up in order to fold up the stroller and pass him through security. He hopped right back in the stroller and went back to sleep. We again woke him up to go down the stairs to get on the plane. These NYC flights are so small that there is no tamarack, we literally walk to the plane and go up the steps to get on. He, again, went right back to sleep on the plane. He woke up when we hit the runway at 500 miles an hour! Once in NYC we caught a cab to the RMH and checked in. We already had a message waiting for us. We are scheduled to be at the day hospital at 11:00. Taylor can have clear liquids up until 9:30 AM which means he is not scheduled for a bone marrow biopsy/aspirate until about 2:30. We will be 3 grump southerners. He is NPO until after this test and therefore we are too!
We walked to get some pizza, but could not find the place. We do not know if they closed it or if we just don't remember where it is. We walked on down to outback instead. Taylor had a rough moment in there. He didn't want to decide on food and got a little out of control and had to make a trip to the bathroom. It is so hard to take him in the bathroom to spank or discipline him, but to have to do it in NYC knowing that we are here to see if he is still NED makes it so hard. That has been a hard issue for many of is cancer parents with young kids. You want to discipline them and make them mind, but at the same time you want to let them live life they way they want. Anyway, he pottied while we was there and decided on mac and cheese. He ate pretty good. We walked back to the RMH and played. He fell asleep, but we woke him up at 7:00. We went to the playroom and made a bracelet and played cars. We went outside for a while. The weather is perfect, not hot or cold. We soon went back up to the room to wind down. I was getting ready to bathe Taylor when we realized there were no wash rags. We went to the desk to ask for some and we were informed that they do not provide that and that if we ever had them before someone left them. Well, we usually do bring our own, but there has always been some in the room and I remember having to call down to the desk on another trip to get a pillow and wash rags and I got them. Who knows! So, at 9:00 at night we were heading out to Gristedes to buy dish rags or something to bathe with. No luck there so we went a little further to a drug store and got bath sponges.
Taylor had a good day and seems to be feeling just fine. He loves it here in this awful place. We ran into Levi and his parents on our trip to the store. It was nice to run into a familiar face on the streets on NYC. We wish Levi luck on his first round of 3F8. We have not seen Morgan yet, but we will.
Please pray that tomorrow does not take forever. Pray that these scans reveal him to be NED. Pray for Morgan and Levi and the many others doing 3F8 and other treatments. Pray for Jay. I ran into his mom last night and he has had progression even through his arsenic trioxide treatments. Pray for all our friends back home and here in NYC and all over that are fighting cancer and other diseases.
June 26, 2004 Day +451 Day #149 off treatment
Today was a big day for Taylor. I called Guh's about 9:15 to see what time they wanted to go bowling and he was already outside playing. We all met at the bowling ally at 2:00. Taylor was a bit odd in the beginning. He didn't want to play. Soon he would go with each person and we had to hold him while we threw. The funny thing was, we were getting strikes left and right. Even me and I am awful! By the end he was rolling on his own. He ate almost a whole pizza too. He went home to Paw Paw's after bowling and rode his go-kart and played with Macey. He and Macey rode her Barbie jeep. He drove and she directed. A marriage made in heaven:) They are so funny together. We went to a neighbor of Paw Paw's after that. They just had a family member, a 2 year old, diagnosed with cancer. We are not sure if he has NB or not, but it is a nasty tumor that is rapped around several organs and his aorta. It will be a long road for this little fellow. Please pray for him and all of his family. We went to dinner and then home to pack. We are all packed and ready to go. Well, packed!
Last night Taylor stayed with Guh. He had fun. Guh got her front door painted red. She has a playhouse in the backyard that is painted like her house. When we got there and he saw it, the first thing he did was make a bee line for his playhouse to see if his house had a red door. It didn't and he was upset! Jim and I had a great time at dinner. It was so good. We did some shopping while we were there. I got the boys matching overalls for their next pictures. They are denim overalls and have rolled up legs that have palm trees on it. It sounds ugly when you write it, but they really are cute.
Taylor seems to be feeling fine. Of course there are 100 things that I can find to worry about, but I think that is just me. Please pray that all is well and all scans reveal him to be NED. Pray for us to have a safe and event free trip. Pray it flies by too!!! We will do our best to update, it may or may not happen. It all depends on what we have going on and if we can get into the computer lab. So, be on the look out, but be sure we will update as soon as we can.
June 25, 2004 Day +450 Day #148 off treatment
Taylor finally got to go back to school today. He was very ready to go this morning. He seems to be feeling fine. He is so bossy and grumpy. He loses his patience in no time flat and he gets so frustrated and upset at the drop of a hat. He has always been this way, but this week it has been awful. I hope it is his cold and the terrible threes and nothing more. He did not eat a very good dinner last night. I told him if he didn't eat he would go to bed. He ate all his french fries and some of his baked beans and that was it. He was poking at his eyes and I asked if they hurt or something was in it. He said something was in it and he came to let me look at it. I couldn't see anything and he just sat there poking it. He only sat there literally about 1 minute and he was sound asleep, sitting straight up. I guess he was poking at them cause he was sleepy. We thought he was playing and we moved him to his bed and he never budged even through putting a diaper on him. I figured he would sleep a few hours and then want to be up all night, but he slept until about 8:15 this morning. He ate pudding for breakfast and then ripped his clothes off because he didn't like what I put on him. He wanted to where his ball shirt. He did his breathing treatment and barely got it all in since he was so ready to go to school. We finally left and he was happy. He got all cracked up in the parking lot of the church because the truck next to us didn't have a tailgate, but a net instead. That tickled him! He was a little hesitant going in, I guess that week long break got to him. He finally went on in. I was putting his stuff in his basket and one of the kids laughed and told him not to bring a bottle to school. He was talking about the bottle that had tea in it. It isn't in any way a baby bottle in fact it is the very bottle that I brought to work with me everyday before he got sick. It hurt me to hear them be ugly even though Taylor was paying no attention. The teacher got onto the boys. I had to go out to the car and get Taylor $1.50 for the ice cream man. He is coming to school today. Taylor has never even seen an ice cream man, so I am sure this will be a fun treat for him. We used to do that when I worked and I do not envy those teachers today:) Boy it was a mess! When I came back in to give the teacher his money he was playing with the very group of boys that were being ugly. They seemed to be all getting along. He pointed out CJ, like I didn't know who it was. He is very proud of his friend CJ. Taylor gave him a fire hat to put on then corrected him when he put it on backwards. I would love to stay one day and spy on him to see how he really does all day. He missed the day they made stop signs and he is ticked off, he loves a stop sign! He is a bit ticked about missing next week too. I am glad to know that he likes it enough to get ticked, but I can't help it. I will be soooo relieved to be back here and taking him to school. That will mean the week of scans is over and he is all clean and we can get back to "normal".
Tonight Guh is keeping the boys while we go to eat at the Winfrey. A friend of Jim's at work gave us a coupon to eat free there. I have never been, so it will be fun. We will go get Logan, but Taylor is staying the night. Tomorrow we are going bowling to use the certificate that we won from the Camp SAM bowling event in February. We have had this long to use it and we wait until the last minute. It expires this week and we will be gone, so off we go to the bowling ally. Taylor is excited, he loves bull ball.
That is about it, I need to go get ready to get Taylor from school and run our errands that I didn't do yesterday. Please continue to pray that all is well and fine with Taylor and he is NED forever. Pray we have a safe and speedy trip to NYC. I can not believe it is time to go back. I haven't been since September and I told Jim he is going to have to throw me over his shoulder because I am dreading it like nothing I have ever dreaded before. I don't know if it is the anxiety of the scans or just the thought of how miserable we have been in the past, but I do not want to go. This is my first short trip, so maybe it will not be so bad. This time last year we were awaiting the results to start the antibody treatment.
June 24, 2004 Day +449 Day #147 off treatment
I swear I think a little woodpecker lives inside of Taylor and when it gets time for scans it pecks Taylor's brain and says "make your mom crazy, make your mom crazy"! He woke up at about 8:30 this morning and wanted tea. I got up to get his some and he asked to be carried and I told him no. He got up and walked to the kitchen, but wasn't happy about it. He likes to put the top on his cup himself and he did, but he didn't get it on tight enough so I gave it a few turns to tighten it. Well, he fell to the floor screaming and pitching a fit. I just left the cup there and told him I was not going to continue this fight into today. He laid there and screamed for about 5 minutes and I got up and went to get him. He was not crying anymore, but he would not walk. He said he couldn't because of his boo boo where he got his shot. He would hold his leg up and refuse to put weight on it. He would fall if I tried to make him walk. This is exactly what we went through for 2 months before he was diagnosed, so you can only imagine the hysteria that had set in at this point. I sat him down and told him that I had to know if it really hurt or if he was mad because he didn't want to walk. I told him that mommy and daddy have to know the truth to be able to tell the Dr. what he needs to know. He said he was mad because he didn't want to walk. We got back in bed to watch cartoons and in a few minutes he was jumping on the bed and doing flips. This is something we do not allow and he knows it, but he is smart enough to know that I am watching to see if he really hurts or not and that I would probably let it go on just to see if he was in pain. Little snot! Miss Christi, the clinic nurse, called just to check on us and she called in the midst of the mornings issues. I was so glad to hear her voice. She said that a Rocephin shot is like a flu shot or hepatitis shot and that they will cause the leg to be very sore. I guess his leg really did hurt, but that is all it was.
We went to his new friend from schools birthday party at McDonald's. He was shy at first and then he jumped right in. He was all over the place and no sign of pain was seen. He does still have red eyes, but he had some gunk running out of them the other day, so I will assume that is just the cold and nothing more. He came down and sat at the table with his friends and ate his nug nugs and fries. He then went off to play some more, but this time he was playing with just some kid that was eating lunch there, he was not in his class. I guess he is coming out of his shell. He didn't want to watch her open her gifts, he wanted to play. I think she did too, she opened all those gifts in record time:) They all had a blast and all us parents were dragging our kids out.
I had a few errands to run, but Taylor wanted to go home and I didn't want to push him since he had not been feeling well. It was also raining and I knew he didn't need to get in and out. So, the bank the stamps and my Mary Kay delivery will have to wait. Gam maw, if you are reading this we are going to try and come tomorrow to drop off all the MK. Taylor is now playing and watching TV. He stayed dry all during the party and we did not have to go to the nasty public bathroom. He was excited, okay, I was excited to show his teacher that he was no longer in a diaper. His teacher was at the party. Miss Shannon, whom we met before he started was there too. She is the teacher for his class, but took the summer off to be with her daughter. She will be back in the Fall. He loved her. He loves Lisa too and we will miss her when she leaves, but I was glad to see he liked her and would adjust well to the change.
Please pray that all our episodes of the last few days are just cold related. Pray that we have a safe and fast trip to NYC and we get scan and biopsy results. Pray for all our other friends battling this beast.
June 23, 2004 Day +448 Day #146 off treatment
What a difference a few hours can make. Taylor has done a complete 360. He went to bed at last night with a 101.2 fever. I checked it again about an hour later and it was 100.2. I woke up in the middle of the night and was going to take it again, but he was so wet with sweat that I couldn't get the thermometer under his arm. I knew he was finally breaking the fever, so I let him be. He woke up at about 10:00 and was fever free, in fact he has been at about 94-97 degrees all day.
Our instructions last night were to call clinic today to see if they needed us to come in. Well, I started calling at 8:00 when they open and finally got someone to turn off the answering machine and answer at nearly 9:00. She informed me that the nurses were to busy to talk and they would call me back. I know they are busy, but I am not calling to chit chat, I have instructions to call. Anyway, I left a message and after an hour of waiting I called back. I told her that I needed to know what they wanted me to do since I have another child who also had a dr. appointment and if we needed to come in, we needed to come on and do it. It ticked her off, but oh well. The wonderful Christi answered right away and went to talk to the other staff and they said since he did not have fever now and the x-ray and counts showed a viral type thing, to not come in. We were to call back if he got fever again. I guess that Rocephin kicked in and took care of it. He still has a junky cough and nose, but it is getting better. He did say a few times that his back hurt, but not often and he played fine, so I guess that one we will have to just roll off our backs. Easier said than done!
He ate fair today, but not real good. He went with us to see Dr. Petelos for Logan's 6 month check up. Dr. P checked Taylor out before he looked at Logan and Taylor didn't even have an appointment! He is very cautious and wanted to be sure he didn't see anything. Taylor did have fluid on the ear, not infection but fluid. It has been there a while now, so if it is still there in a month when he goes back for his next round of shots Dr. P will send us back to Dr. Hill, the ENT. I dread another set of tubes, but again, better safe than sorry. Who knows, maybe that is all that was hurting his hearing. Taylor is now pretty much potty trained. He has done so great. He has already been christened into the manhood club! Today he was jumping and he came down on the corner of the chair in the Dr's office. He did not have the padding of the diaper there to save him, so he got his first taste of a hard hit to the privates today. He actually did it twice! He cried and cried and grabbed etc. We felt so bad for him, it was pitiful! We met Guh for dinner and he ate some ham and good bit of noodles. He played outside on his gator and go-kart for a while. He seems to feel fine. He was very moody and his behavior is terrible, but I do not know how much of that is I am 3 and had no nap and how much is I do not feel 100%.
It is 12:30 AM as I type this and I am up because I am just now done dealing with yet another episode. Taylor has been in bed since 10:30 or so and at about 11:15 he came out and wanted tea. He knows that he can not have tea after he brushes his teeth and he always asks and always cries then gets over it. Well today he decided to make a production out of it. He ended up hitting me, throwing things at me and then running to his room and locking the door. He knew he was in trouble, but he opened the door and got mad because we told him he could not lock the doors. He got back in bed and a few minutes later he was back. He was demanding to have tea "NOW". Well, I tried to talk to him and tell him why he couldn't have it, but he got madder by the minute until I put him back to bed. He flew off the deep end and was gagging himself and coughing and going crazy. Well, needles to say after nearly an hour he is in his room in the floor with no covers. That is where he wanted to be so I left him there. I gave him a kiss and he wiped it off, so he is mad at me. Hopefully, this is all a 3 year old with no nap induced fight and nothing more. I have seen many 3 year olds go over the edge over the smallest thing, so I know it is normal. It is funny how much easier it was to deal with those situations when it was at work and someone else's kid. Everything is harder when they are your own.
As for Logan. His check up was great. He is 17# 2ounces up from 16# 12ounces a week ago when we were in for his ear infection. He was 27 3/4 inches long and had a 17 inch head circumference. When Taylor was 6 months he was 18# 9 ounces, 26 3/4 inches and a 17 inch head. There is not to much difference between them. He was given a clean bill of health as well as 3 shots. I was prepared for another horrid time like his last round of shots, but he surprised us all. He did cry and it was one of those long, silent, not breathing cries and then all of a sudden he let out a huge scream. After that he was done and he ate his milk and fell asleep. Taylor said "Aw, Lo Lo had to get a shot". He was so sweet or so we thought. We asked if he wanted to hold his hand and he said "No, I got one last night". It was like you dummy, I do this all the time, why should I worry about him getting one, it's about time".
I guess we are feeling a little better now and more confident that it was really just a viral thing. However, do still keep those prayers coming. God is listening and they are being answered. Pray that he is NED forever. As much as I hate these scares, I like them just fine as long as they come out okay. I can handle those small hurdles in the road. Coming up our street last night, well after midnight, all the lights were off in all the houses except ours. I know that they all have problems too and I know that someone was laying in bed staring at the ceiling and wondering how it would all turn out. However, it was still very hard to see that and see all the peacefulness and know that inside me, our family, our house, it is hectic, chaos that centers around the health of a 3 year old. It is so unfair, unfair to Taylor and us. He is 3 and has endured more than many elderly people have or most of us ever will and yet he has no idea that his life is any different than any other 3 year old. We are 26 years old and have already had the challenge of a life time and have faced cancer and the realities of death toe to toe. We are not alone in this, we have many family and friends with us as well as all the other cancer families that have fought the fight, but last night on that dark road, it sure felt lonely and scary. Okay, I apologize for the little emotional outburst. You guys know this is my outlet and vent area, so you are my proverbial shoulder to cry on. Thanks!!
Please pray for Taylor and his continued success against this disease. Pray for all the other NB kids Levi, Morgan, Trey, Sarah, Chris, Madison, Courtney, Cami, Brandon, John, Jay, Sophia, Tyler, Jaydon and many more. Also remember all our other clinic friends and caringbridge friends that fight cancer too.
June 22, 2004 Day +447 Day #145 off treatment
Well, this day ended with a big ole bang. Taylor played fine for the most part today. He was not his usual crazy self, but he played and ran and giggled. However, at about 6:00 he decided to go crazy. He started saying that his back hurt and that it hurt to breathe. He started coughing a dry cough and couldn't stop. He tried to poop and puke and neither happened. We tried to give him his neb, but he couldn't stop coughing and was getting hysterical. We finally calmed him and down and he fell asleep, so we decided to let him sleep. Well, he woke up a few minutes later screaming in pain in his back. Well, that added to the still 101 fever, we took off towards Children's. Gam maw came over to keep Logan. Half way to the hospital Taylor started talking about going home to play a game with Gam maw and was giggling and talking about a vroom vroom and big trucks and signs and on and on and on. We pulled over and tried to talk to him and couldn't get a straight answer on rather or not he was in pain or not. I called the Nurse practitioner on call and talked to her. At first she said go home, but after a few minutes and she realized he still had fever she sent us on to the ER. We were taken right back, that is the only perk to being a HEM/ONC patient. We went over everything 900 times, I hate to see Dr's that don't know the history and we know more than they do. Anyway, they did a CBC and all was normal, but his WBC was at 25,000 higher than yesterday, so he is still trying to fight something. He did not have any bands which is the part of the white cell that is indicative of a bacterial infection, so that was a good sign. I was a little confused as to rather it was bad that his WBC had risen, so I asked for clarification. He said no, that he only did a CBC because he was an ONC kid. They do not routinely do a CBC on "normal" sick kids, but if they did they would see an elevated WBC. They checked his urine, but I have no idea what for. It was not his VMA/HVA, just a normal test. It was clear, but I would like another one since his last levels were slightly elevated. We also did x-rays. He had a chest and tummy x-ray. He had clear lungs and a little poop in the belly. He may or may not still have a little constipation. I am glad to see his lungs looked good, but I am not satisfied with an x-ray, I want a CT. That x-ray isn't going to show why his back hurts or any tumors, God forbid, they are there. I am still fairly positive that we are just a little jumpy due to the timing of it all, but still, we are upset and not really feeling any better now that we are back home. He ended up getting a shot of Rocephin, an antibiotic, to help combat anything in there. We have to call clinic tomorrow and see if they want to see him again or do anything further. I am not sure what I want. I do not see the point in going and just letting them do another CBC and have another Dr. give him the once over. I would like to have a scan of some sort and it wouldn't hurt my feelings if we were told to just do them all here:). We do them in NYC because they have a more sensitive radioactive dye that can detect NB better, but still I wouldn't mind staying here at least some months. I will be sure to let you know what they say we have to do. Taylor was very upset. They wanted to draw blood from his port, but I had to say no since they had just drawn cultures yesterday. We didn't have any Emla and I wasn't going to make him go through that. He did have to have his arm stuck, but it is less traumatic. He didn't think so though, he went crazy. That too scares me, he has never reacted that way. I guess he has just been off treatment for so long, but I mean he still gets scans and sticks and it has only been May since they used his port, so it hasn't been that long. I guess he is at that age. Every time I tell him he will get his port out, or try to brush his teeth or anything like that he will ask if it is going to hurt. He is anticipating it all now. He flipped out over that BIG ole shot too. It was a big needle with a lot of meds in it and the meds stung worse than the needle. He fell asleep very soon after the shot, he couldn't stay awake anymore. Finally, at 12:30 we were ready to go. I must say that we are still a little uneasy about it all, but we are okay. I will do my best to update tomorrow, but it will be a busy day. Logan also has an appointment and will need shots. I am sure that Taylor will be ticked that he has to miss school again, but it can not be helped.
Please pray that all is okay. Pray that this is all a big coincidence and he really does just have a viral infection and nothing more. Pray that the back and tummy pain is constipation or a fall that we didn't see. Pray there is no cancer or tumors anywhere in his little body. Pray that he never goes through cancer again. Please pray that he is okay. Pray for us too. I can not go through it again. Okay, I know that I can, but I don't want to. I also know that this is all far fetched, but again, it is just so hard to not be able to know what is going on in that little body of his and it is even harder to decipher what it "real pain" and what is 3 year old "attention getting" pain.
Well, we are still staying home since Taylor is still running fever. He woke up at about 5:30 with a 100.8 temp and I gave him Tylenol. I went to change his diaper, he still sleeps in them, and he got mad and told me "I don't wear diapers"! So, we put on underwear. He ended up going back to sleep and wet the bed, but that's okay. Ghen Ghen came to get him to go to the movies, but he was still asleep and had fever, so he didn't go. I hate he missed that too. He had so much fun last week at Garfield. He was dancing in the aisles. He ended up cuddling in his sleeping bag most of the morning. He has had several neb treatments so far today and his nose is not near as green as it has been. He does still have fever and has had several doses of Tylenol. I must admit that I am still nervous. He usually only takes one dose of Tylenol and he is fine and he has had it for the past 2 days around the clock and can't keep that fever down. He did finally eat 2 biscuits and some cheese rice with ham in it. He has drank fair. He is playing and acting like he feels better, so maybe we are about over it.
Logan has been rolling all over. We were worried about him for not rolling over a few weeks ago and now he is all over the house. He was on his pallet this morning and when I came back from helping Taylor in the bathroom he was all the way on the other side of the room looking down the hall. He is gonna be a sneaky one and a fast one!
That is about all there is to tell today. We are just hanging out and doing nothing until Taylor feels better. We have to get him better to get him to NYC, so we will not be getting out and running the risk of him getting sick again. We do have to take Logan to the Dr. tomorrow for his 6 month check up that he missed due to his ear infection. I will probably let Dr. Petelos check Taylor out just to be sure he seems to be clearing up.
Pray that he is fine and this is all a cold. Pray the he will be NED forever. Pray that Logan never deals with anything close to what Taylor has gone through. Pray for all of our friends that are fighting this or other illnesses.
June 21, 2004 Day +446 Day #144 off treatment
I am glad that today is over. Taylor woke up with a 101.9 fever. You know what that means, a call to the clinic. Since he still has a port we had to go have cultures drawn. Of course I didn't mind this since I always feel better about having him looked at. He felt awful and you could tell. He didn't want to be weighed or play or anything. He cried and pitched a fit and it took 3 people to hold Taylor down to have his port accessed and deaccessed. He has never in the nearly 2 years of dealing with this, acted that way. He is so laid back when it comes to all of this medical stuff. He had great plt count of 372,000. His HGB and all was fine as well. His WBC was very high at 21,000 and this is a sure sign that he is trying to fight off infection. He had 77% neutraphils, so he is not fighting with a 100%. He wouldn't give her a good, deep breath, so she couldn't hear his lungs very well. He is wheezing and rattling, but doesn't sound like pneumonia so we did not have to do any X-rays. Dr. Hilliard put him on Zithromax, an antibiotic and Zyrtec. He took Zyrtec last year for the same thing and was taken off of it when he cleared up, but that was winter and he no longer went outside. We have decided that he has outdoor allergies and the only thing to fix it is stay inside and that will not happen, so we started back on Zyrtec. It is stronger than the Brovex that he was on. She thinks that the Zyrtec would take care of it all on its own, but since we have to be in NYC Monday and be sedated for testing she gave him the antibiotic to go ahead and knock this out. She also put him back on his nebs.
We met daddy for lunch and Taylor did not eat. By the time we got home it was time for me to get ready to go to my Mary Kay meeting. I took the kids to Guh's and Jim got Logan and left Taylor there to play. I went to dinner with Temperance and Nicole and then we went to play makeup. We had fun. We went back to get Taylor who seemed to be feeling better. He had gotten another fever and didn't want to play. He ate his mac and cheese and he pooped on the potty. He has to feel better after that foot long poop!! He still wasn't done and couldn't finish eating due to running to the potty. Guh knew that he was miserable, so she told him to just get it all out any way he could. He did too, he pooped in his pants, but he felt so much better. He fell asleep in the car and slept all night long.
He was upset that he missed school. I hate that he missed it too, but it couldn't be helped. He will go Wednesday as long as he is clear of any fever. Who knows, he may have gotten something from school.
Pray that this really is only a viral infection and allergies and nothing more. Pray that he is still and will always be NED. Pray for a safe and uneventful trip to NYC. Pray that all our friends are doing well today.
June 20, 2004 Day +445 Day #143 off treatment
Happy Father's Day!!
We went to church this morning. Taylor went to Children's Church, but I had to go with him. I don't know why, it is in the gym where he plays at school and most of the kids are from his school too. He enjoyed cutting and making a family tree. He also enjoyed that sucker he got for doing a good job. I just don't think he is old enough yet to sit and listen like that and that is why he doesn't want to go. He has to sit in big church too, but he at least is with us and not the big kids that intimidate him. Pop, Pippy and uncle Gary were there today. I think Taylor enjoyed that too.
Taylor played outside today. He has complained of a tummy ache all day. Of course this sets off alarms in our minds since he also has a HUGE bruise on his leg that we have no idea where it came from. That is the thing about school, we do not see falls and such that might justify these new bruises. I am sure that is all it is, but as usual we worry. He is eating like a horse and playing fine. He is mopey when he gets up, but perks up after a little bit and he is tired when he comes in, but he goes full blast while he is outside. He also has not pooped in 3 days. I don't know how you go from 5 or more mushy poops a day to nothing. I guess he is holding it since he is in underwear. So, hopefully that is all the tummy ache boils down too.
We had some watermelon out on the deck and that was fun. The yard is a big mess. Jim took the swing set a part to move it so that we can get the ground leveled out and fix up a play area. If anyone does or knows someone who does bobcat work, let us know.
That is about it. For the first time in a long time, we stayed home. I guess we all needed it. We didn't lay around, but it was nice not to be loading up the house to take two kids out. Wow, that is some work.
Please pray that Taylor is fine. Pray it is just parent paranoia that has us up in arms. Pray that our trip to NYC is fun, safe and reveals no surprises as it usually does. Pray that we hear very soon after our return that Taylor is still NED. Pray that he is just being a 3 year old boy. Pray that all of our friends are feeling well tonight. Pray for all of those in our cancer fight or other diseases.
June 19, 2004 Day +444 Day #142 off treatment
I didn't get much sleep last night. I didn't go to bed until about 2 and Taylor woke up at 3:30. He was burning hot with fever and saying he was cold. He got in our bed and eventually went back to sleep. I couldn't sleep for the worry that sat in. I knew that something had to make me worry before it was all over with. He has a very green and yucky nose and a nasty cough. He always does, so we don't worry too much, but it is still a worry. He never did take Tylenol and had no more fever, so who knows what it is. I swear, I think he knows when it is scan time and he starts acting up on purpose.
I had a pottery party today, so we hung out at home while people came and went. Taylor had a blast with all the kids coming. He took Macey for a ride in his gator. They had so much fun that they both got upset when she had to go. Taylor and Logan both did great painting on their pottery.
After the party was over Gam maw and Paw Paw came over with a surprise for Taylor. It was a little bitty go-kart. It is tiny and only goes 3 miles an hour. He was so funny riding it. He is a great driver and he can dart in and out of the lights around the drive way. I guess al that gator riding was good practice. It only had one pedal. If you let off the gas it stops, so there was no teaching how to use the brakes. He jumped right in and took off. He was laughing the whole time. The only bad thing is that he is used to being in the gator and he will get in and out and play. He wants to do that in the go kart too. He will ride a few minutes then turn it off and play then ask you to start it again. We called Pippy and Pop and they came over to watch for a while. I had 2 go karts when I was little, so we got a kick out of watching him. Jim and I wanted to ride too, but I mean it when I say it is little bitty and we don't fit.
After all that excitement we went to run some errands and get some dinner. Both boys fell asleep, so I did the errands while the guys slept in the car. We all went to Wal-mart together. Taylor got to get a prize since he has been in underwear and dry all day long!! We have been going to school in pull ups and wearing underwear at home. Well, today we went full underwear. He wore them all day, inside and outside, at home or in public. He was dry all day. He came in from playing, he told us in the store or in the car. He is even using the big potty rather than his potty chair. He has to have help getting up there, but that is no big deal. He got a Blue's Clues ring to go on the big potty to keep him from falling in. He loves it! I am so excited about him getting it. I don't know if it is school or he was just ready, but I am so glad. I bought diapers at Wal-mart and only bought Logan a pack!
Please pray that Taylor is fine and that we are just paranoid since it is scan time. Pray that he just has a cold or something simple. We will have to do nebs again since he is so congested and snotty or they will not put him to sleep for scans, so pray that he will clear up this week.
June 18, 2004 Day +443 Day #141 off treatment
Today was a long one. I took Taylor to school and dropped him off and then headed to get a hole in my tire fixed. Two and a half hours later I finally paid and left. I went ahead and picked Taylor up since it was 12:45 and I didn't want to go home and leave again in 30 minutes. Well, Taylor did not much care for the idea of leaving early. I was very glad to know that he has so much fun at school that he doesn't want to leave, but I didn't care at that point, I was ready to go. I went with him to the lunch room and was just going to wait it out. He had a sub and she didn't know that he drank tea and she gave him kool-aid. He took one drink and wanted to go home. He was very excited to tell me all about Macey being at school and dressing up in a tiger mask and a bucket on his head. We came home and cleaned up and I mean it this time, I really did clean. We went out to eat with Chris, Temperance and Christian. Taylor ate 3 plates of ham at Ruby Tuesday. We get our monies worth at that salad bar! We went back to our house and watched 50 First Dates, it is so funny. By the time it was over Christian and Taylor were both slap worn out, so we all went to bed and they went home. I actually stayed up and finished cleaning.
I know this is a boring update, but I am so late in finally updating that I didn't go into details. I will tell you that (thank God) Logan liked Big 10 Tires a lot more than I did. He was good as gold and talked and slept and ate. Hey, when you are there over 2 hours you do it all, but he never got fussy.
Please continue to pray that Taylor is NED forever. Pray for all of our friends that are fighting this battle.
Check Our stand total has been posted at Taylor's Stand. Pictures have been posted from the Lemonade Stand here.
June 17, 2004 Day +442 Day #140 off treatment
I lied, I didn't update any better. We had a nice Thursday. Taylor thought it was pretty cool that we had daddies car, but I didn't. It is a hassle to get him in and out of the car seat in the backseat of a 2 door car. We had lunch with Guh and her work girl at none other than the Olive Garden. We went to Walmart to kill time before his Dr. appointment. He got shots only, no check up, so it was a very short visit. He only got one shot, the Hep. B shot. He was very ticked off at her for hurting him. I do not think it hurt all that bad, but he was mad none the less. He limped all day until he got outside and ran like a mad man:)
Logan went to Nana's and did fine. I can not believe he is 6 months old. He gobbled up a jar of squash while we waited on our dinner to come. We went to eat with Gam maw and Paw Paw. After we got home Taylor helped Ca Ca cut grass.
Not a very exciting day. However, a fairly good one.
June 16, 2004 Day +441 Day #139 off treatment
Sorry the last few days have not been updated. I have been lazy. Today was pajama day at school. Taylor wore frog pj's and frog slippers. He brought his purple frog and his pooh bear sleeping bag. He was so excited he couldn't stand it. He was running around and playing when I got there to get him. He cried because he didn't want to go home. His girlfriend, Macey, is going to start going on Friday's, so he will have a friend there. They are not in the same class, but they will play in the gym together. He is very excited about her going to his school. He is learning the kids names, he is talking about people more everyday. He wore a pull up to school today, but we are going to start going in underwear very soon. I am going to give him a few more days of "practicing" at home especially outside, so he can learn to stop what he is doing and go. Add this to your prayer list.
We had a lot of confusion, but we have our tickets for NYC. We will leave at 8:15AM on Sunday, June 27th and come home at 8:30PM on Thursday, July 1st. We will try to get home on an earlier flight if possible. Please pray that this is an easy and safe trip that shows Taylor to still be NED. I can hardly believe we are a little over a week away from scans and I am not nervous. That in itself makes me nervous. Seems like everyone we know that has relapsed did it when they least expected it. However, God is in control and I can not change it if I worry about it. Wow, those were the very words another parent wrote before getting the bad news. Please pray that Taylor is fine and pray for those who are fighting relapse.
Tomorrow Taylor will go for his next round of shots. He will only get one shot this month. He will get the same 5 he got last time next month. Hopefully, he will not be too mad at me and the nurse. We are still waiting to hear if he will try to harvest stem cells in early July. We should hear soon. I have mixed emotions on that. I want them just in case, but I do not want to put him through all that he will have to go through to do it.
I will try to update better from now on. Be sure to look at the new photos. Pray that Taylor is and will remain NED. Pray for all of our friends battling cancer and other disease. Please donate blood and platelets!!
June 15, 2004 Day +440 Day #138 off treatment
Hi all! Today we hung out at home and cleaned and played. Do you see a pattern?? All we do is play and clean the living room, we never get past the living room. Taylor drags it back in before I get to the next room. Oh well, I guess it is okay. I did go give blood. I am 0+ and that is what they depleted with the weekend trauma. There is always a shortage of blood in the summer, so please call 1-800-GIVE-LIFE and make your appointment to give blood or platelets. You will feel like a hero and you will be a hero to the person who gets that blood!
Guh came over and played outside and ordered some Mary Kay. She and Ghen Ghen have gotten many compliments on their new looks. Wouldn't you all like a new look? I can give you one!! Just let me know!! I can mail you a catalog or come and demo our products for you.
After Guh left Taylor and I went to the grocery store. This was a very stressful trip for me. Want to know why? Because Taylor went in his underwear!!! We have taken the advise of our dear friend Alison (Morgan's mom) who is also potty training her son. We have been letting Taylor run naked from the waste down. He, just like Holden, will not wet if he is naked, but boy as soon as you put on underwear he wets in them. It is so frustrating to see him go to the bathroom all day then boom go outside and he is wet. Well, he wanted to go with me and I wanted him to stay home and stay dry. I told him to go get a diaper and he could go. Well, Jim asked him if he wanted to go to the grocery store in his underwear. Yes, I could have smacked him for that one. However, we gave it a try and he made it. We were gone about an hour and he stayed dry. We were so proud of him. We made a huge deal out of it, so maybe he will get the hole potty training thing down pat soon.
Please pray that he is still NED and will be forever. Pray for our friend Levi who is in NYC now being tested to see if he is eligible for the 3F8 treatment. Pray for all of our friends who are battling this disease.
June 14, 2004 Day +439 Day #137 off treatment
Please pray for our friends the Slater's from Children's Hospital. I just found out today their son/brother passed away 3 weeks ago. He was a sweet boy and we loved him and his family dearly. We had a wonderful time bowling with him at the Camp SAM thing a few months back. We love you Slaters, call us if you need us!!
Taylor went back to school today. He did fine as usual. He was on his scooter, where he always is when I get there. I thought it had 3 wheels, but it doesn't. I let him play today for a while and he was so funny riding it or trying to that is. Miss Joy said he stayed under the table today and they had to keep getting him out. She also said that someone had said something about his teeth and he growled at them. She said she didn't stop him from growling since he was responding to their comments. I hate that he even has to hear the comments. He is only 3 and kids are already saying things, how will it be when he is 6 and kids know how to be mean? It is so unfair! He is now eating, so I guess that means he did not approve of the ravioli that I sent in his lunch.
Logan and I went on a road trip this morning. We went to Aubie's house to give him a video Jim made for him and to pick up some photos they had for us. They were great. Taylor loves his autographed photo of Aubie. Thanks to the entire "Aubie family". Taylor will be mad when he finds out I went with out him even though I didn't even see anyone.
You all should see my fridge. It has about 8 gallons of tea left over from the other day. Taylor is in heaven every time he opens the door:) He was furious last night after he brushed his teeth and wanted tea and we said no. We gave him water, but he didn't drink it.
There is a national shortage of blood right now. Also, there was a trauma this weekend at an Alabama hospital that almost depleted their supply. Please go out and donate blood or platelets. You are using a little of your time to donate the gift of life to someone. Like I have said before, you never know when it will be you or your family that needs that gift. You can call the Red Cross at 1-800-GIVE-LIFE.
Pray that all is well with Taylor and he continues to be NED. Pray for all of our friends.
June 13, 2004 Day +438 Day #136 off treatment
Today was a lazy rainy day. We slept late since we were all dead tired from yesterday's festivities. We heard that Alex's first national lemonade stand raised over $300,000 and counting!!! That is awesome!!
Taylor is eating like a horse and Logan too. He had sweet pees for the first time and loved them. I have two kids that love sweet pees, yuck! We ran some errands today and just hung out at home. Not very much to tell you about.
Pray that Taylor continues to do well. We got word that our plane tickets for NYC are almost final. Pray that that trip brings continued NED results and the news that Taylor's port can come out. Pray that we have a safe and uneventful trip. Pray that Logan feels better soon. Pray that all our friends are doing well tonight.
AP News Story: http://www.al.com/newsflash/national/index.ssf?/base/national-25/108693984783680.xml
June 12, 2004 Day +437 Day #135 off treatment
Congratulations Deidre Downs!! Deidre is the girl that is responsible for the car tag and that has appeared with us on several news segments. She was crowned Miss Alabama last night and will compete in Miss America in September. We are so proud of you Deidre!!!
Today was the big day. We had a lot of fun. I will say that the week leading up to today did not go as planned in fact it did not go at all. I will not go into detail, but I will say we were upset and disappointed. However, today was great. We were out in that heat from 9-4. We had a blast. We saw old friends and new friends. We had Big Al and Aubie there and both were great. We got some great photos and video of them. They stood IN the road and tried to get people to turn in. It was very funny. We raised $588 dollars and sold 7 car tags. I wont try to mention names because I will miss someone, but thank you to all who came out and helped us sale lemonade or came out and bought some and supported our efforts. Thank you to NBC, CBS, and ABC for coming out and getting some footage and putting us on the news. Thank you to Life South, Buffalo Rock-Pepsi, Milo's tea, and Krispy Kreme. Thank you to everyone that came out and donated to the stand. Thank you to Aubie and Big Al and your families for coming out. Thank you Justin fro coming out and singing for us. THANK YOU EVERYONE!!!!!
We will try and get some photos of the stand up very soon.
After the lemonade stand we went to Gam maw and Paw Paw's to swim. Taylor is turning into a little fish. He still doesn't want to go under, but he will jump off the side and let us catch him. He has a new airplane float that he loves to float in. Logan had fun sitting in his bouncy seat out on the deck. We didn't get him in since he has an ear infection.
News: NBC 5:00, ABC 6:00 and CBS 10:00. Story in Saturday's morning paper.
AP News Story: http://www.al.com/newsflash/national/index.ssf?/base/national-25/108693984783680.xml
June 11, 2004 Day +436 Day #134 off treatment
Last night was worse than the one before. Logan was up from about 4:00 on. I took him to the Dr. while Taylor was at school and he has a double ear infection. No wonder he was so grumpy. He seems to feel a tad better with the numbing drops, but he is still grumpy and not eating and sleeping well. He weighed 16# 12oz. Taylor was 20# at his 6 month check up, so I guess he isn't as fat as he looks!
As for Taylor, he did great at school and was riding a scooter when I picked him up. He cleaned up just like Mrs. Lisa asked and he had fun showing me his bird he made at art. I am loving getting art again! He is so excited about next week. They get to wear their pajamas and bring a sleeping bag to watch movies and eat popcorn. That was always my favorite day when I was teaching. I have missed getting to do those things with him. I am just as excited as he is!
He is gone with Paw Paw to pick up a bunch of Milo's tea for tomorrow. Thanks a billion Milo's!!!! Sorry we waited so long!
Pray that all goes well tomorrow. Pray that Logan is feeling better soon. Pray that Taylor is NED fovever!!!
June 10, 2004 Day +435 Day #133 off treatment
Check out this website to learn more about the curing childhood cancer car tag and how to get yours!!
Today was not a good day, but I am not ready to discuss that yet. Taylor is fine, so don't worry. He went to McDonald's with me and he played in the play area all by himself and never begged me to go with him. School has done him a world of good. We both got a hair cut. Taylor had his washed since he was so sweaty from playing and lets just say he did not like that!!! He jumped up and water went every where. He had to change clothes and she had to mop! We went to get crab apple Logan from Nana's and Taylor actually played with her kids and didn't cling to me. We went to Gam maw's for dinner. Taylor had fun playing outside with Pippy too.
Logan had a terrible night last night and I have made him an appointment for tomorrow. I think he may have an ear infection.
Pray that all continues to go well with Taylor and that Logan just has a simple problem that we can take care of. Pray for all our friends fighting this battle.
June 9, 2004 Day +434 Day #132 off treatment
This morning we went to Children's to see Dr. Fellers and get a check up on Taylor's teeth. They were a little yuck since he had eaten his cereal in the car. I was embarrassed that I brought him to the dentist with dirty teeth, but he got up and I threw him in the car, I had to feed him. Anyway, they looked fine and the spot where he pulled teeth is healing fine. We made an appointment for Dec. 1 for a 6 month check up and cleaning. That should be fun! After the Dr. we went to school. Taylor was of course late, but he walked right in and put his stuff in his basket and went to the table to color. I had to go back and bring his tea and I peaked in and saw him sitting alone at the table. I am guessing he was being shy and not in trouble. He wasn't crying, he was coloring and looking around.
I picked him up and he was running around with his lunch box. He wanted black ice cream, so we went to Sonic. Of course the fun was only beginning. He wanted to eat outside at Sonic. Well, we have moved Logan to a big car seat and I didn't have anything to put him in, so I decided not to try and fight him and eat too, so I said we would just take it home. Taylor was mad, but he got over it. We got home and I brought the kids in and went back out to get all the stuff. I had my drink and his shake stacked. Taylor held the door open for me, but as I stepped up into the house, I dropped the shake. Well, I didn't think too much of it. I put everything down and went to pick it up and give it to him. Wrong, the entire bottom of the cup had broke off and the shake just flopped out and hit the ground, carpet and everything in between. Yuck! Taylor cried and cried and so it looks as though we are having Sonic for dinner.
Tomorrow we will be going to the lemonade stand for a while. I will have Logan so we will not be able to stay too long. I will do my best to get a round about number on how things are going. Please come out and support us. Remember all the weekday totals stay in Alabama and the Saturday totals go to Alex. Either way we are helping the pediatric cancer research efforts, so come out when you can!!!!!
June 8, 2004 Day +433 Day #131 off treatment
Good day to you all. We are busy little bees around here. We have cleaned out the garage, but made a bigger mess in the playroom. I threw all the toys and such that needed to go back in there in the floor, so now we will have to conquer that room. I will think about that later. We cleaned up the basement and that was about it, nothing else got cleaned. Jim and Taylor took a trip to Taylor's favorite place, the dump!! We went to eat dinner at Guh's house. Taylor had a blast going over to Garret's house and playing on the swings and riding bikes. He took off playing and never gave me a second glance. He also let me go back to Guh's house and he didn't cry or try to leave. He is getting so big!! On the way home we spotted our friends, the Plunkets, outside, so we stopped. Once again Taylor was off and running with their little boy. It was dark, so all we could see were their light up shoes going by. Thank goodness they were home since it was then that we realized that we left night night at Guh's house. Since they live so close by it was no big deal although we scared Guh by coming back an hour later.
Logan has been a pill. He has not felt well and has whined and cried and been a butt all day. He is eating okay, so I am not worried about it. Taylor will go to the dental clinic tomorrow to get a check up on his capps. He will go to school after that appointment.
Pray that all is well and continues to be well for Taylor. Pray he is NED forever. Pray that all our friends out there are feeling good today.
Don't forget to buy your car tags, we are getting very close to that July 31st deadline. We will have forms at the lemonade stand and you can pay that day and we will get it all taken care of for you!!
June 7, 2004 Day +432 Day #130 off treatment
Taylor went back to school today. He started Parent's Day Out at our church. He will attend Mon, Wed. and Fri. from 9:30-1:30. We have talked about it all day yesterday and this morning. He would get whiney and say that he didn't want me to leave him. I told him that I would be back and that he would have friends to play with and toys. I told him that Will and Braxton went to school. I think he thought I meant his school, but it perked him up. We got to the church this morning and walked to his room. He wore his back pack and carried his lunch box all by himself. He put it all in his basket that had his name on it. He didn't want to give Miss Lisa his lunchable. She takes all the refrigerated stuff to the kitchen and he didn't want to hand his over. He eventually threw it at her and then laughed. He was talking to me and showing me all the toys. One of the kids asked him his name and he held up 3 fingers and whispered Tay Tay Watts. I told him it was time for me to go and that I would be back in a little bit. I gave him a hug and a kiss and headed for the door. He stopped me and asked for another hug and kiss and then walked over to the toy area. I went out and paid his fees and turned in his paper work. We did this at the sitting area right outside his door and we never heard a peep. Miss Joy went to get him a hand book and she had to go in his room. She said he was playing. I went to peek in the window before I left and he was in circle time listening to a story. When Jim and I picked him up he was in the gym running around and having a good time. His teacher said that he did great and had fun and ate real good!! He didn't eat the banana they gave him at snack, but he ate all his goldfish and ham and spin wheels for lunch. She had to change a poopie diaper, but hopefully him seeing the others go to the bathroom will make him get it!! I am so glad he had fun and he is already asking if it is time to go back. I hope that means that he will go to children's church or the nursery on Sundays.
Jim and I cleaned out my car while Taylor was gone. It was a mess. It is now all clean and we will see how long that lasts. We looked all over the place for my keys. We tore the house, garage and yard apart and didn't find them. We finally did, but we are both very puzzled as to what happened. Our best guess it that Taylor got them and tried to use them to drive his gator and laid them back on the car, but who knows. Jim found them when he got the mail. They were in the mail box. They must have been ran over because most of the keys were bent and the key chain and remote were broke. Needless to say, I was not very happy about it. We took off to Wal-mart to replace the keys that were messed up. Anyway, life happens I guess!
Pray that Taylor has a wonderful summer with his new friends and pray that he has perfect scans in NYC. Pray that he continues to do wonderful. Pray that all of our friends do great too!!
June 6, 2004 Day +431 Day #129 off treatment
June 6th is National Cancer Survivor Day!!!!
I am happy to say that on this Cancer survivor day we are in that group. Taylor is a survivor and we know that he will be forever! He has been through so much and has overcome it all. He is now a happy, healthy, normal 3 year old. Praise God!! However, this day also marks the one year anniversary of our dear friend Austin's passing. Austin was with us for most of our treatments and he was a joy to be with as was his wonderful mother, Tina. Tina and I shared many fears and joys during our stay in the "Gated community". I miss her dearly as she lives far away and I miss Austin. Please pray for her and her daughter Meagan as they get through this last first and probably the hardest. Stop by Austin's page and leave them some kind words. www.caringbridge.org/al/austin
Today we went to Home Depot and got some land scape timbers to put around the swing set and Taylor picked out a trapeze type bar to add to the swing set where we took down the broken rocking horse swing. Jim and Taylor have been outside all day staining and hanging things with the occasional pass through the sprinkler. Taylor continues to eat like a horse and poop just as fast:) I have been cleaning the never ending mess and trying to unpack and wash clothes.
Logan finally rolled over from his tummy to his back, so now I don't have to go get him when he gets tired of tummy time. He has been talking up a storm. He bababas and mamamas all the time. He is so funny. Taylor was so very late to talk that he never did any of that cooing and babbling, so it is funny to us.
Taylor will go to preschool tomorrow. I have not decided if I will stay with him for a while or leave him and let him tough it out. I can't decide what will be worse, the trauma of leaving him or me staying tomorrow and then not the next time. I am a preschool teacher, I should know this, but it is harder to answer when it is your own child facing the trauma. It doesn't help that I had to leave him screaming every morning when he was in obvious pain and illness that no one would take serious. I hated leaving him and then coming to pick him up and he would still be crying and sitting in the same bean bag I left him in. That is all he did. If they went outside he sat in his teachers lap, he never played. He never ate. He was carried to his cot and he slept until he was put back on the bean bag chair. It was so sad and everyone though that he was just being a baby. Well, he showed them didn't he. He has proven his is nothing but strong!! I know he will be fine once he gets into the swing of things, but it will be an adjustment. This is not the norm to us anymore, it is like starting over, but after what we have been through, we can do anything.
I didn't mean for that to be long winded, but you know me. Anyway, we are back and settled in for a while and I am ready to give some of you lovely ladies facials and pedicure parties. Please let me know if you are interested in a party of your own, attending a Monday night class with me, or an on the go appointment on your lunch break. I will let you sample things on your hand. I would never send you back to work with a naked face or a half done face:).
Pray that Taylor does well in school and that it isn't too much of an adjustment. Pray that all goes smoothly in NYC and he is still NED.
June 5, 2004 Day +430 Day #128 off treatment
Today started with a bunch of sleepy heads rolling out of bed to get ready for Taylor's team party at Chuck E. Cheese. We all made it on time and just in time for the pizzas to come out. Taylor ate great. Even though all the other boys took off to play he sat at the table and ate about 4 pieces of pizza. He had so much fun playing in the tunnels with Braxton. He never does that because he wont go alone. He jumped right in with the other boys. I was so glad. It helps ease my mind about school starting Monday. I know he will cry, but he will enjoy it too. Anyway, he and Braxton had some funny face pictures made and they laughed at them. Taylor cried when Braxton had to leave. He played with Ca Ca and Coach Curt after Braxton left. We stayed just a little over 2 hours and Taylor barely touched his tokens. Jim and I ended up playing ski ball to spend them and he got a squishy screw driver with our tickets. After the party we went and had all our DW pictures printed off and put them in our new DW album. We went back home and hung out until 6:00 when we went to the ball park to the trophy ceremony. Taylor got to go up with his team and have his name called out. He got a cool trophy. Several people commented on how cool it was and much better than the gold plated plastic they use to give out. We went to dinner with Gam maw and Paw paw and then headed to the hospital to do the Children's Miracle Network Telethon. We visited 4 tower and had a blast visiting and Taylor and Levi pulled wagons all over. Levi was not there when we were and Taylor didn't have anyone to play with. We had to pull him away from there last night and had to go back up after our turn on TV. Taylor did great on TV. He could see himself on the monitor in front of us and he was show boating. He stuck his tongue out, made funny faces and yelled "Go A's". He is slowly coming out of that shell! We had to take him to Paw Paw's to spend the night after the hospital. We had to promise him to get him to leave them at dinner.
We had a long day and came home and crashed. Logan has stayed with Guh while we were gone. He had a rash. It is just his eczema reacting to the heat. He is fine. He is still coughing, but seems to be feeling better. He has started some sweet potatoes and he loves them!!! Those were Taylor's favorites, so I see they have something in common.
June 4, 2004 Day +429 Day #127 off treatment
We are home!!! We were all up by about 9:00 this morning. We finished up all the last minute packing and then set off to take a walk around the village and get some video of all the buildings. We went to breakfast then to load up the car and check out. We received a photo of us all with Mickey and Minnie and some CD's of the village and music. We also got a year long world passport that will get us into tons of theme parks and state parks across the country. We will be burning up the roads this summer!! We headed towards that airport and we were sitting past E on the gas. We were told not to fill up because that is part of the GKTW deal with the rental place. I hope that they had on site gas stations or they will be pushing that gold Impalla down the road! We had a little trouble going through security. I dumped a handful of change into my book bag without even thinking about it and she had to take everything out to see what was there. All that trouble for some pennies. We didn't have to long to wait until we boarded and headed towards good ole Birmingham that only had a high of 76, what a welcome relief from that heat! Our flight was a little late due to our zig zagging through bad weather, but it still wasn't long or bumpy.
Paw Paw was there to pick us up and to help us get our now 5 checked bags rather than the original 3! We got it all loaded up and headed home. Lo Lo was all excited to see us, but he seems to have gotten Taylor's cold. He is all stuffy and coughing. We are treating it with Robitussin. Taylor showed Paw Paw and Guh everything that he had bought and told them all about it. He wanted to ride his gator, so off he went.
We went to dinner at the brand new Ruby Tuesday's that opened while we were gone. We saw tons of people that we knew and got to catch up with them. It was a nice evening out. Taylor has eaten like a PIG. We are convinced that his teeth truly hurt when he ate because he is eating like a mad man lately. Isn't it great!!!
We have not unpacked or done much of anything since getting home. We are still so tired.
Pray that Taylor continues to do as great as he is and that he is NED forever. Pray that all our friends are doing well too.
June 3, 2004 Day +428 Day #126 off treatment
Can you say H-O-T!!! That is what it is here, but we are having fun. We started today with a picture with Mickey and Minnie since we missed it the other day. We then had breakfast and headed off towards the Magic Kingdom. We got all the way in and ready to start the day when we realized Night Night was in the car. We knew that it would be bad when he was getting tired, so Jim went back to the car to get it and we headed on in to ride some rides. Of course that was not an easy task for Jim, he had to go back on the monorail, out the gates to the car then back through the ticket line and back on the monorail. We had decided to meet inside the castle, but once we got there we saw there was a show, so it was closed, so we had to stand guard and watch for him. Taylor was getting very antsy, so Gam Maw looked out for Jim and Taylor and I rode Dumbo two times in a row then the Carrousel. Jim made it back just in time to take pictures of us on the carrousel. We then headed towards the Pirates of the Caribbean where he finally got his sword that he has been looking for since we got here. We took a jungle cruise and Taylor enjoyed growling at the animals that popped up. He got Gam Maw to ride the Aladdin's carpet ride. He pushes that lever up to the sky and keeps it up. He doesn't like to be low, he gets that from me!! We rode Pooh's hunney pot, Peter Pan's flight, and Snow White's ride. Taylor didn't really care for the Snow White ride because it was dark and spooky. We did the Peter Pan ride twice, he loved that flying ride. He did the Buzz Lightyear ride 2 times again and the Blue line. He enjoyed telling me when it was going to get dark since he and Ca Ca did it yesterday. We rode the motorized cars that run on the little track. He is not tall enough to ride, so he and Ca Ca rode and I took pictures. Well, he wanted to go again, so I took him and the guy let him drive. He loved it. We went back and forth hitting that rail, but he had so much fun. He wanted to do it again and again, but I feel bad going over and over again. We do have special privileges, but I don't want to ware them out. He rode the roller coaster 3 times in a row and she was going to let him keep going, but Jim wanted off. I took him back to do it again. He got to meet Buzz in the flesh and of course he loved that. He didn't do any other characters today. He didn't want to, he is burnt out on that, so we didn't make him. He has had a real blast. He fell asleep on the monorail to the car and is still asleep. We are going to go back tonight to see the new Wishes firework show. He was supposed to be tucked in by the bunny, Mayor Clayton today, but he asked not to do it. He has cried and cried not to do it and we decided to go to the show at the park instead. He will also miss the Christmas party here at GKTW, but I know he will get Christmas in NYC, they usually do that and I know he will not get another chance to see a big firework show. We have to go back and get our packages anyway. Taylor bought a Buzz suitcase and a few other things and we had them sent to the front of the park, but they had not made it there when we went to pick them up. I hope this pouring rain is gone so that we do not make a trip to the Magic Kingdom just to pick up a few packages.
Last night Jim and I went to 3 parks and rode all the big stuff. We went to MGM and rode the Tower of Terror which is my absolute favorite ride. We also rode the Rockin' roller coaster. We ran out of there and drove to the Magic Kingdom. We rode the monorail to Epcot and ran in to ride Test Track. We got to use his GKTW pass and skip the lines, so we were able to do a lot in a very short amount of time. We took the ferry boat out of Epcot back to the Magic Kingdom and we stayed there for a few hours. We rode Thunder Mountain and Splash Mountain. We had dinner at the good ole Harbor house, but they were out of sweet tea. We did space mountain which is my second favorite. By this time the park was closed, but it was E ride night, so it was open late. We went in to see a 3D movie and found out it was only for resort people, but they let us in. After the movie we just shopped and watched the fireworks then left. Taylor was still up when we got back and he loved the stop sign pin that we got him. We climbed in bed and drew with the new pin until about 11:00 and then we all fell fast asleep.
As for his night. He was still napping at 4:00 when we left to go back to the parks. He got up and went to play golf here at GKTW with Gam maw. He ate dinner and then swam. He played with Brian and Linda our new friends from NY. He was a very good boy. He didn't get his late night snack. The pizza that they ordered was burnt and they wouldn't let him get another one. He settled for rice krispy treats.
Pray that we have a safe trip home. Thank God for Taylor's turn around and pray that he is indeed still NED and will be for "Infinity and Beyond" I can not believe it is over. We can't wait to see Lo Lo, we missed him a bunches.
Taylor has one very small runny diaper and a much more normal poop later in the day. He ate very good today. He has been a ball of energy and has been pleasant all day. He had one small break down towards the end of the day and it was because he wanted to buy a buzz spinner thing just like the one he bought last year. He cried when we wouldn't get another one. He got over it quick though!!
June 2, 2004 Day +427 Day #125 off treatment
It was another hot one, but pleasant as far as Taylor was concerned. We went to the Animal Kingdom. We started out at Camp Mickey where you can get the autographs of a lot of the characters. Taylor's GKTW button gets him to the front of the lines and no one ever seems to mind except one lady. She made a few remarks about knowing how to wait her turn in line. Oh well, I would much rather have waited in line that get that button the way we earned it, but I can't help it and I will take the perks that come with the button. There are all sorts of people in the world and you just have to ignore the ones that are going to be difficult. Taylor met Lilo, Stitch, Donald, Minnie, Goofy, Pluto and Flick. We watched the Flick movie, It is Tough to Be a Bug. It again was 3D and Taylor is just not real sure of that. He watched parts of it, but it got real dark and smokey and he jumped in my lap. It was a good thing too because things started sticking you in the back like a stinger and spiders came out of the ceiling. He did like the part that the termite wet him and the stink bug stunk up the room. He kept his bug glasses, oops. He decided he was hungry at this point, so we went to get some pizza. He has been eating tons of pizza that we order by the pool, but this pizza had too much tomato sauce and he didn't like it. He ended up getting in trouble for throwing things and being ugly, but that was his only rough spot of the day. Not bad seeing as it is about a million degrees. After lunch we rode on the Kilimanjaro Safari. He liked that too. He didn't see a lot of the animals that were hiding or laying down, but he liked the big jeeps we rode in and going through the big mud holes. We went into Dino Land and he played some games and he and Ca Ca won a big colorful turtle. He ode the dino ride that goes up and down and back and forth. He loves that stuff and it cracks me up. He is so scared of the smallest things, but he loves the rides, the faster and higher the better. Jim and I rode the primeval whirl. It is a roller coaster that spins as it goes. It was kind of silly, but a good laugh. We went to the store and Taylor got all kind of goodies. He got a remote control car, a few pins, a canteen for his tea and who knows what else. He was allowed to spend his Disney Dollars any way he wanted, so we just let him have at it. He had a Winnie the Pooh movie and another race car waiting on him in the little bitty house.
Lat night we went swimming again. He is turning into a little fish. We have to drag him out. We were all exhausted last night, so we left early and ordered a pizza. He ate about 3 pieces and then fell asleep on the couch. We all went to bed by 10:00 and slept like a bunch of rocks.
Jim and I are going to go out tonight all by ourselves. It is E ride night at Magic Kingdom, so we will go there until midnight. We did that on our Honeymoon and it was great. We are going to go by MGM as well since there is really nothing there that Taylor would like. Tomorrow we are going back to the Magic Kingdome to do the things that Taylor liked the most. We may try and go back to Universal. We got another pass from the office, but it closed so early that we didn't get to go back. We do not know if it is going to work tomorrow or not. We will try and if it doesn't, oh well.
Taylor had another yucky diaper, but he ate some yogurt and fruit loops for breakfast and has eaten okay throughout the day. Hopefully, we just have a little bug in there and we will be over it soon. Please continue to pray that all is fine inside his little body and that he is NED forever.
June 1, 2004 Day +426 Day #124 off treatment
Last night we finally got Taylor calmed down and he ate his noodles and cake. He wanted to go play. We went to play golf at the GKTW Dinoput. Taylor had more fun dropping the ball into the hole to see what surprise would happen. One hole had a dinosaur that spit on you when put the ball in the hole. After golf we went into Amberville play area and looked at the train station and played some video games. The train was running so we took a ride on it. Taylor sat in the conductors seat and rang the bell and whistle to let people know we were coming. He loved it!! We went to have dinner and he ate a little ice cream and that is about it. He did eat a good bit of his noodles though, so he probably wasn't hungry. Our next step was the pool. There was a pool party going on. Taylor joined right in the kid games. He played 4 corners. He had to dance, dance, dance then run to a corner. The winning team got to go on stage and dance. Taylor's team won and he ran up there, but didn't do any dancing. He decided that he was ready to swim, so we jumped in the pool. He is getting braver and braver. He was pretending to swim on the wheel chair ramp. He likes the body boards. He is a little splasher too. A little boy came up to him and asked how old he was. They discovered that they were both 3. He was from New York. He is also a stage 4 NB survivor. He is much further than Taylor. He had his transplant in September of 2002 which was a month before Taylor was diagnosed. He is doing great and was fun to play with as was his big sister. We now know another survivor!!! After we drug the little fish out of the pool we ordered a pizza from the pizza kitchen here at the village and came home. Taylor took a bath in the big tub and played in his float for a while. I guess he had not had enough swim time already. He ate a piece of pizza and played. He had a pretty good day. If we can figure out where that on off switch is that triggers those fits we will be good to go. However, it was reassuring to hear that our new friend Brian has that same switch that can't be found. I guess it is the heat. He ended up falling asleep watching a movie in Gam maw's bed. He was laying in between her legs and they slept that way all night.
Today we made up for the late start we got yesterday. We were up and out the door by 8:00. We went to McDonald's for breakfast since it was not being served yet when we left. Taylor ate a hash brown. He actually ate pretty good today. He had several runny diapers today and has a raw booty, but otherwise he had a great day. I am going on the fact that he has a bug, but I am a little concerned still. Anyway, moving on. We went to the Magic Kingdom today. Taylor loved it. We started by sitting with the driver of the monorail who was less than friendly. I don't think he even cracked a smile. Taylor liked going through the Contemporary Hotel and he seemed to remember eating and shopping in there last time we were here. Once we made it into the park we headed over to the kid section. We rode the tea cups first. I have never ridden them either, so we did it together. He loved it. Jim doesn't like to go round and round and Taylor and I had a blast spinning it and making him mad:) Taylor and I rode the Dumbo ride next. He liked that too. He didn't realize that he could make it go up and down, but once he figured that out we went up and down a few times then we stayed as high as it would go. He is so my child, he is pure dare devil! We went to ride It's a small world and it was closed for remodeling. We were a little bummed since that is his favorite and he talks about it all the time since it is in the movie he has. He got over it thought and we headed to Mickey's toon town. We met Goofy, Mickey, Chip, Dale, Minnie, Eyore, Tigger pooh, and pluto. He got all of their autographs. He did real well with all the characters. We rode Goofy's barnstormer roller coaster a bunch of times. We went to ride the Haunted Mansion. He didn't like the few spots that were dark, but otherwise didn't bother him. He went to the Buzz ride and it was broke, we were getting nervous that all he liked was broke, but it opened back up. He rode it 2 times in a row and loved every minute of it. We watched the Philharmagic 3D show. Taylor loved it, but he is not a big fan of things coming at him. He jumped every time something flew by or at him. It was a great show. It blew air and water on you at certain spots to correspond to things in the movie and it had the smell of apple pie when Donald was eating a pie. It was very cute. By now we were ready for some lunch, so we set out looking for a good spot. We couldn't find anything so we settled for Columbia Harbor House (next to the Haunted Mansion). Guess what, they had sweet tea. No, not peach or raspberry, but good ole sugar sweetened tea. The cashier said that it was the only place in the park that had it!! That is the tip of the day for all you sweet tea lovers that will visit the Magic Kingdom. Go to the Harbor place by the Haunted Mansion and you will feel right at home. Jim and Taylor rode a few more things together and then we headed towards the car. We were only on the monorail about 2 minutes when Taylor fell asleep. He slept through all the changes from car to stroller and back again. We went to Down Town Disney and shopped for a while. We got a few goodies and post cards and headed for home. We gave Taylor the option of going home or back to Disney and he chose home. Thank goodness, we are all worn out!! We came in and got ready for dinner and a swim. Taylor had cake for dinner and then we swam for while. We are now back and just hanging out. He is watching his new video and playing with markers. Jim and I are about to look at all the new pictures and add some for your viewing pleasure.
Please sign our guestbook and tell us hello. I apologize for the craziness of this update, but I am so tired I am not sure what is straight up or sideways. Please pray that Taylor is only experiencing symptoms of a virus and nothing more. Pray that we continue to have a great trip and safe return home.
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May 31, 2004 Day +425 Day #123 off treatment
Today again has been full of crying, fit pitching and more. I am at my wits end and he is about to get it! Anyway, we slept late and missed everything. Breakfast is only served from 6-8 and he had an appointment to get a picture with Mickey and Minnie at 9, but we slept until 9:30. The power went out due to a squirrel in the power box and we all overslept. We can go back on Thursday to try and get the picture made. We went to the ice cream parlor where they have a continental breakfast, but of course we had ice cream! After breakfast we went to look for Taylor's star on the ceiling of the castle. He was the last one on the row, so he was pretty easy to find. He rode the carrousel 3 times and then we headed back to our little bitty house to get ready to go to Sea World. Taylor's GKTW button got us in front row parking and boy was that nice. We went to pet the sting rays first. He put his hand in the water, but pulled out when they came near, but he finally touched one, but I didn't! We went to look at the dolphins, but they were not feeding them yet, so they wouldn't really come to you, so we left. We never made it back since it was soooooo HOT and we were tired. We went to the dolphin show and Taylor seemed to enjoy it in the beginning, but before long he was playing with the pine straw and not even paying attention. After the show we headed towards the kids part and stopped in a few shops along the way. He bought several toys and a dolphin shaped rice krispy treat. He didn't want to play once we got to the water park for the kids, so we took a few pictures of him on the whale and headed on. We watched a boat show that really held his attention. He liked the kites and skiers that came by. They even had a dog that did tricks. He did get board with that a few minutes before it was over, so we left. He was ready to go and hungry, so we left. We had gotten more tickets to go to Universal again, but it closes at 7:00 and we didn't learn that until about 5:30, so we will try tomorrow. Anyway, after we left we went to get Gam maw and we went to the Olive Garden. Taylor had fallen asleep in the car and didn't wake up when we got out, so we let him sleep in the booth. He woke up when we were leaving and that is when the fun began. He wanted to eat then and there, but we needed to go. He pitched a fit for over an hour. He ended up having to be put to bed and left to scream, he just would not calm down. He attempted to eat once got back, but he was too ticked off. Jim went to the bedroom with him after he calmed down a little and soon we heard laughter, so I guess he is okay now.
As for the fever, he was fever free by the time I went to bed last night and has been fine all day. He has had more runny diapers and a very thick, green runny nose, so I assume he has a cold/virus, but it is scary!! I did not give him his Brovex since it causes him to be drowsy. He needed the med for his nose, but I would rather wipe snot than have him sleepy from meds in this heat. He is still whining and acting ugly, but he didn't get a very good nap and it is so very hot here that I guess that is the problem. All I know is that he needs to chill out! We have plans to play goofy golf here at GKTW and swim some more, but I am not sure if that will pan out with this attitude. He did do good today and seemed to have a lot of fun, so we can't complain.
Please pray that he will be okay and that he does indeed, just have a cold and nothing more. Pray that this attitude is sleepy and heat induced. Pray that he can lose this attitude for the rest of the week. Pray that he had clean scans in a few weeks and that he is NED forever. Pray for all of our friends that fight this and other diseases. Pray for all the kids down here that we have met. It is so wonderful to be here and to see the kids have a great time, but at the same time they are hear because of illness. Pray that one day this is not a necessity anymore. However, until then thank God for the man who thought it up and the many volunteers that run it. It truly is paradise!!!
May 30, 2004 Day +424 Day #122 off treatment
Today I am going to back track a little and tell you the ironic event that happened on the plane. We were sitting in our seats in the second row of the plane and we were watching people come on. Well, in walks Dr. Anderson, the very doctor that assured us a few days before Taylor's diagnosis, that it was not cancer. How ironic to be leaving for your wish trip and you ride on the same plane as the guy who told you is was not the very disease that got you that wish trip. He did speak and he was very nice, but it was weird.
Today we started off on a bad note yet again. He was so grumpy and whiney. We couldn't go 2 minutes without a melt down. We finally left and headed to Universal Studios. We went right to the kid zone where we spent the day. Taylor finally cheered up and played. He rode the Woody the Woodpecker roller coaster. He sat with me and Ca Ca sat in front to take pictures. However, the man running the ride told us via the intercom to not take pictures, oops! I thought he would be scared, but he was far from it. He cackled all the way through it. He must have ridden it about 10 times. He played in the water works area. He splashed and stomped through puddles and shooting water. He had a big bucket dumped on him. It startled him, but then he thought it was funny. He found the ball area and he was in heaven. This was the area that you used vacuums, bags, buckets, guns etc. to get balls into a huge bin in the ceiling. After about 2 minutes the bin dumped out all over your head. He loved it in there. Jim and I left Gam maw and Taylor there to play for an hour or so while we went to do some stuff. We didn't get to go to the head of the line without Taylor, so we only rode Twister. It took almost 2 hours to do that. We went back and found them and had some lunch. Taylor ate half maybe a whole chicken nugget. After lunch we went to watch the Shreck 4D movie. Taylor did okay for a while, but then he wanted the glasses off. He didn't like the stuff coming at him. He also got in my lap. The chairs were motion chairs and he didn't like that. He did think it was funny when Donkey sneezed and we got wet. We went to Nickelodeon and watched a Jimmy Neutron movie, but this time we sat in stationary chairs. We got autographs from a few characters and then headed home. He was asleep in the stroller before we even got out of the park. Jim went ahead of us and started the car to cool it off. The escalators that take you up the parking deck were broke, so me and Gam maw had to carry that stroller up 2 flights of stairs!!! Taylor slept through all of that, us putting him in and taking him out of the car and then slept over an hour in the bed. We finally woke him up at about 7:20 to go to dinner. He ate a tiny bit of English peas and macaroni and cheese. After dinner we went to ride the carrousel and to put his star in the star fairy box. Each child puts their name on a special star and leaves it in this box and during the night the fairy will put them on the ceiling of the castle. Tomorrow we can go look for his star. We also signed up for Mayor Clayton to come tuck him into bed on Thursday night. He says he doesn't want him too, but we will try. He saw him this morning and did fine. we went to the pool and water play area after the castle. Taylor and Ca Ca ran through the water spouts, but it was cold. We got in the pool that was warm and Taylor had a great time. He played ball and swam on Ca Ca's back. He liked the wheel chair ramp too. He went under water with Ca Ca and I took a picture with a water proof camera, but it was getting to dark and it didn't come out. Oh well! We came back to the room and again Taylor was grumpy. He laid on the couch to watch a movie and fell asleep. After a little while we checked on him and he was hot. He had a fever of 101. UUGH!!!! I know it has been a busy day and he is tired, but he has been so tired and grumpy. He had a nice and watery, leak all over clothes, poop today as well. He has not eaten enough to keep a bird alive in the past 2 days. He has a knot on his forehead that he has had about a week and we can not figure out where it came from. He whines and complains that he hurts here and there. Although those aches and pains go from spot to spot and seem to go away when he was having fun. I am so tired of living like this. I am scared to death!!! He was perfectly fine before the surgery, so it is hard to say is it related to that or something else. He has a horrible cough and snotty nose again, so is it that. Why does he stay sick? Why were those urine levels high this time? I could go on and on about everything going through our heads. Part of me knows that I do this every time he gets a cold or bump, but it is scary every time. I know that every time it is me over reacting, but again it is just so scary. I know you all are tired of hearing me act this way, but I know that you are all praying and that is what get us through.
Please pray that this is a cold or virus and that it is nothing more. Pray that we can get through this week with no more scares and just have fun. Pray that I can make it to scan time in 3 weeks with my sanity. Pray the scans are 100% clear. Pray that he is NED forever!!! Pray, pray, pray!!
May 29, 2004 Day +423 Day #121 off treatment
Update: We landed in Orlando! Give Kids the World is remarkable, and we have only been here a couple of hours. Taylor is having a blast. He ate two ice cream cones with cool whip in them. He didn't want ice cream in them, go figure! He loves his "little bitty bitty house" as he likes to call it. He even has a HUGE Jacuzzi style tub in his private room (mom and dad are jealous, of course!). We are having a blast and look forward to the week ahead and all the fun things Taylor will get to experience. On a side note, another child was being checked in at the same time we were, and they were from Alabaster, Alabama! Check back late tonight or tomorrow to see if another update or pictures are posted. As soon as we are able to post pictures, we will. When we do, you will be able to view them at:Wish Trip 2004 Pictures
This morning started out on a bad note. Taylor was in a fowl mood. He was so grumpy it wasn't even funny. He did great at his game though. It was his last game and we almost got it all in before the rain hit. We were soaked as we tried to hurry and cover all the luggage that was in the back of Paw Paw's truck. We all crammed into to Guh's car so that we could go home and try to figure out another way to get to the airport. By the time we got everything situated it quit raining, so we all climbed out and got back into the truck and covered the luggage with a tarp. It was all fine seeing as about a mile down the road, it had not rained at all.
We got to the airport and got checked in and then had some lunch. We went back to our gate and got settled in and heard Taylor's name over the speaker. It was his wish coordinator bringing him a goodie bag. She must have studied him because that bag was full of things he loved. Such as frogs, gum, ball, silly putty, tootsie pops and more!! Thanks Shannon and Billy!! Finally, it was time to board. We got on and settled and Southwest doesn't mess around, we were taking off in about 15 minutes after we boarded. Taylor went right to sleep and the time flew. It took right at an hour and we were landing in sunny, HOT, Orlando. A Give Kids The World person was holding a "Welcome Taylor Watts" sign and she took us to get out luggage and to our rental car. It didn't take too long to get to the magnificent GKTW village. We checked in and had to sit through a little meeting to get oriented with all of our surroundings. We were given the keys to our villa. Wow!! This thing is almost as big as my house. It is a 2 br/2bath villa. Taylor's room has a huge Jacuzzi tub in which he spent about an hour in. He spent part of that time in a float!! Yes, it is big enough for him to float around in. He is loving it. The villas are little duplexes and he calls it his little bitty house.
We got unpacked and settled in our "little house" and we took off to explore. We started at the ice cream parlor where you get all the free ice cream, banana splits and snacks that you want. After Taylor ate his 2 cones full of whipped cream we went to Amberville. There we played video games and made a dream pillow. Taylor drove a remote control boat and played with a cool train. After all that excitement we went to eat dinner. Taylor was very tired at this point and just wanted to go to his little house. He finally ate a little rice. After our dinner we went to Mayor Clayton Bunnies birthday. He celebrates his birthday every Saturday. Taylor colored a picture and danced a little. He spent most of his time on the riding toys that are all around the village. Gam maw and Taylor went back to the little house to swim in the tub while Jim and I went to the orientation. This is where we got all of our tickets and info for things around town and the village.
At about 10:00 we set out for Wal-mart to buy tea and snacks. That was a mistake. I have never seen a store more packed, it was a mad house. We made it out with everything but our DW tickets. You can buy them there discounted. We need some for Gam maw since we only get 3 from GKTW, but Magic Moments is paying for those. What a wonderful set of wish granters!!! Thanks to all involved!!!
We are now in our room and settling down. We will have a full day tomorrow with all kinds of activities planned both in and out of the village.
Pray that all is safe and fun here and at home. We miss Lo Lo!!! Pray that Taylor is NED forever.
May 28, 2004 Day +422 Day #120 off treatment
1 more day, Yahoo!!!
I am packing today and getting ready to go to Disney World!! We are so ready. Taylor seems to feel much better today. He is playing and running around, but he will not eat. I think it just tastes bad rather than hurts. He is drinking fine. He ate a few green beans and a bowl of applesauce last night, but nothing at all today. I think he will be just fine. He keep his tongue in the hole from those front teeth, but other than that he doesn't really seem any different.
I of course have to let things seem bigger than they are. He has complained of a head ache and wanted to be held because his feet and legs hurt. He was 100% energy before surgery, so I know he just isn't feeling right, but I still worry about it and let it get to me. Please pray that all his symptoms disappear when we get to DW and he is having loads of fun and let my fears disappear too.
We are going to attempt to go to Wal-mart again. Taylor didn't want to go last night so he has not spent his money. I told him to just take it to DW, but today he wants to go to WM, so we probably will. I need to go to the post office and bank anyway, so why not. I also need to clean out my car. My gosh, it is amazing how much junk can pile up when you load up 2 kids and half the house everyday.
Congrats to nurse Rhonda. She had a little boy yesterday afternoon. Landon weighed in at 8# 1oz. We are going to go see them tonight. I can't wait. She did not find out what she was having and I think the 9 month wait was harder on me than her:). I doubt that, but it was tuff for me, I always had to know, so I don't know how she did it.
We will be taking the computer with us, so we will update if we are able to. We do not know if there will be anywhere for us to get internet access. If we can't then you will get a huge update when we get back on June 4th. Everyone have a safe and fun Memorial weekend!
Pray that Taylor is soon back to his normal self. Pray that his many complaints over the last few days are surgery related and nothing more. Pray that we have a safe and wonderful trip. Pray that all my fears are unfounded and that we forget about all of that once we get to paradise! Pray that Logan is a good boy while we are gone and doesn't change too much:) Pray for all of our friends that are dealing with this and other illnesses.
May 27, 2004 Day +421 Day #119 off treatment
We are finally home, but not for long, we have ball practice in 2 hours. I don't expect Taylor to do very much as he still is not feeling up to par. He is a little mopey at times and other times he is full blast. He fell asleep in the Galleria, so I suppose he may still be tired from all the heavy meds he got yesterday. He has not eaten very well, but he has had some food and drink. We are going out tonight with Gam maw and Paw Paw, so maybe he will do better then.
He got home today and had $20 from the tooth fairy. He was going to spend it at the toy store, but he fell asleep. I guess we will be going to Wal-mart tonight after dinner. He was pretty excited about that money!!
Hold on to your hats as this is going to be a long and confusing update. We met with Dr. Sande this morning to go over the harvesting issue. We are going to attempt it wither when we get back from Orlando or in July. The G-CSF will interfere with his bone marrow biopsy. It will make them look odd and I do not want any odd results!! Therefore we will wait until after scans if we can not be worked in for the week of the 7th. We will have to give him about 4 days of G-CSF. He will get 15 micro/kilo rather than 10 since he already has high counts and we just want to boost them up to get more stem cells. He will fee bad from that. Yes, usually G shots make you feel better since they are raising the counts, but since he has normal counts it will kind of bog him down and make him fell kind of blah. After the G shots have gotten his WBC over 30-40,000 they will draw labs and check his CD34 count. That is a marker on stem cells that will tell them how many stem cells have made their way into the blood stream. After chemo and transplant and all the beatings that the marrow took, it is hard for the stem cells to get to the blood stream. If he has a high number we will attempt to harvest if he does not have a high number then there is no point in trying to harvest. If this method does not work there is another option, but we will not be going that route and you will soon see why. The other option is to give him a round of Cytoxin or Cyclophosphomide, chemo drugs. This would not totally wipe his counts out, but drop them enough that the G shots would help produce more stem cells. It would probably not make him sick or lose any hair, but it is more toxic chemo that will go into his body and could cause damage to internal organs, hearing etc. It is not worth the risk. Yes, we may kick ourselves if we ever find ourselves in need of stem cells again, but we are not going to put him through that at a healthy point in his life. If the G shots work and he can do it the other way then we will try and that way will be hard enough. Since he does not have his hickman (noodles) anymore he would have to have surgery to place a hickman in his groin. Due to the placement we would have to go inpatient until it was removed. They will have to prime the machine with blood since he is so small and that would be like getting another blood transfusion. There is a risk of infection from the blood and the new line that is placed. They have to watch the calcium levels very closely and replenish as necessary. It would probably be 2 nights and 3 days inpatient. He would go in late to get the line in and start aphaeresis the next day. He harvested in one day last time, but he had a lot of stem cells since he had not had as much chemo at that point. He will probably not be so lucky this time around. One good thing that we talked about was since the other method seemed so harsh, I asked if it was really worth it at this point. Dr. Sande said no because. Most kids that make it one year post transplant do not relapse. The first year is the most critical time. That does not mean that he can't or wont. some kids have been 3 years out and relapsed. Neuroblastoma has a mind of its own and does not follow rules, so you can not go by that, but it was still good to hear that he had beaten the odds so far.
We also talked about why he no longer gets 3F8. I knew it was due to HAMA, but really didn't understand it all. Dr. Sande did a great job explaining that. I will try to tell you all just as good. An antibody looks like a "Y". In the GD2 or 3F8 it is all mouse cells and a human can not take that in there body, so they take it apart and keep the part in the middle mouse cells and rebuild the remainder of the Y shape with human cells. It keep a very potent part of the mouse antibody and that is enough to destroy the NB in his body. His human cells slowly build immunities or HAMA against that mouse cell. If he gets HAMA there is no point in giving the 3F8 because it will not work and it could finally lead to a severe allergic reaction (anaphylactic shock) due to the constant building of his immunity to the mouse cells. You got all that right:)
Anyway, we are all very excited about Disney World. Taylor knows there are 2 more sleeps and we go. I hope and pray that he feels better by the time we go. Pray that all his aches and pains today are from his teeth hurting and his just not feeling well and wanted to be loved on. Pray it all goes away when he gets ready to play and he forgets about it. Pray that no one makes fun of his new teeth. We just keep telling him how cool they look and hope that he does not get upset over it. Pray that we have a safe and fun trip and that Logan is a good boy while we are gone. We are going to miss him!!!
May 26, 2004 Day +420 Day #118 off treatment
Sorry that we are so late in updating, but as you can guess, it has been a busy day. We were up and gone by 5:30, we had to be at One day surgery at 6:00. We were in our room by 7:00 and he was playing in a police car. They gave him an albuturol treatment before he went back just in case. Our nurse, Loriee, whom has been keeping up with us for sometime came and gave him some Versad (sp) to keep him from getting upset when they took him from us. He was so loopy. We were laughing so hard. He was grabbing at stuff and looking at the imaginary things he caught. He could have cared less when they wheeled him back to the OR. He was gone about 3 1/2 hours. It was only expected to be about 2, so we were getting antsy. He came through with flying colors it just took so long since every tooth had to have something done to it. He had the back one on each side of the bottom filled. He had the front, top 2 pulled completely out. He had all the rest capped in silver. There is no white since there was no point in trying to make the top teeth pretty with 2 of them missing. He was a bit sore when they brought him back to the room. He cried a little as did I:). He soon calmed down and watched cartoons. Jim went back to work and Taylor and I hung out about another hour then we were discharged. He fell asleep in the car and slept until about 3:00. He has had so much IV fluid that he is leaking out of every diaper. He has wet everything in the house. Once he woke up he wanted to eat. He ate tater tots and tea. He then asked if he could go swing. He had no where to put his tongue, so it just went through the gap and he didn't get swing out very well. Dr. Fellers said that the front teeth can be removed without causing orthodontic problems or speech problems. We shall see. We have to go back June 9th to have a follow up visit with them and we will discuss a Pedi bridge. It is for cosmetic purposes only, so unless he just freaks out about no teeth we will not get it. He has asked for them back and he told us he didn't like his new teeth. I think it all just feels funny and it has to taste bad. We could smell the metallic smell when he came back from recovery, so it can't taste to good.
He did fine during the night. He ate a little and drank normally. He had a bit of a fever, but they said that was normal for healing. He has a nasty cough from the anesthesia. He looks pretty cute actually!! I guess it will just take getting use to. They are not big though like we thought they would be, he still looks the same just silver.
I had my first facial last night. It was a lot of fun. Taylor played with Paw Paw and Ca Ca while I was gone. He begged to go to Paw Paw's house, so he went. I didn't want to tick him off and he felt fine. He left a note under his pillow to the tooth fairy about where he would be. He also brought one with him to put under his pillow at Paw Paw's. I don't think he got what was going on, but he will when there is money under it in the morning.
Tomorrow will have a late update again. We have to go back to the hospital and run some errands. Pray that Taylor feels well for the trip.
May 25, 2004 Day +419 Day #117 off treatment
Hello all. I am so glad that today is over. Taylor slept until 9:00 when I woke him up to get dressed. We were out the door by about 9:20. We arrived to the hospital right on time, but as usual the Dr. kept us waiting 45 minutes after our appointment. She does it every time!!! Anyway, finally at 10:45, 15 minutes before our hearing test, we went into a room to get the results of Taylor's developmental tests. On the matching, recognition, and vocabulary tests he scored a 53 and the average is 50, so he is a little above. On the motor skills tests he scored an 88 and average is 100. That test consisted of stacking blocks and drawing lines, circles, and x's. We think that a lot of that is behavioral rather than ability. Those were the first tests done and he had not warmed up to her yet and was barely cooperating. He will be retested on just that part to be sure, but we know that he can do all of that. His score of 88 is in the low end of normal, so either way, he is fine.
We still made it to our hearing test on time. I had talked to him about his cooperation and that I really needed him to pay attention to Mr. Keith and Miss Caroline, so that we could be sure that he could hear. He started off kinda shaky, but he warmed up and did just fine. He played the games and pointed to the pictures. He got tired towards the end and started getting restless and kicking his feet and jumping around, but that was after about 30 minutes of testing, so it was to be expected. He had moderate to severe hearing loss in both ears in the high frequency range. Caroline said that average is up to 4000 and he could not hear the 5000 range, so he is not going to need hearing aids or anything, but he will have to be monitored now to be sure it doesn't worsen. This is a known effect of the cisplatin chemo drug. It takes up to a year to have its full effects. Accutane also has been known to cause hearing damage. He will be tested again in a month or so to be sure that he wasn't just goofing off. I am sure that he has some loss. most kids do. It shouldn't get any worse since he is no longer on any of the drugs that caused the damage, but he will still be monitored. He also had fluid on his ear and that too can effect hearing, so we were glad that he had an appointment today with the pediatrician, so that that could be looked at.
Once at Dr. Petelos' office we started the doctoring sessions all over again. He did not have any wheezing and was cleared for his surgery in the morning. He also did not see any fluid on his ear. He thinks that the tube is still on place and that it is causing the tympanic waves to look like he has fluid. However, he said that if there was fluid there it is clear and is not infection and therefore he did not start any meds for it. He will go back to Dr. Petelos on June 19th to get his next round of immunizations. He will only get one shot this time.
I just opened the door to the Fedex man who had our tickets for Disney World!! Yahoo!!!
Please pray that tomorrow's surgery goes smoothly and that he looks ok when it is over. I am so worried about that. Pray that he has no complications and that he is not in pain on our trip. Pray we have a safe and wonderful trip.
May 24, 2004 Day +418 Day #116 off treatment
Today is Monday again. I hope this week flies by, we are soooo ready to get to Disney World. I know it will go fast with all the appointments we have. Guh is coming today and we are going swimming again. I think I may just send Taylor. I have got to clean this house so that I can pack and know that when I leave I will not be thinking of the mess I will have to clean when I get home. There are no plans for today other than that. I have my meeting tonight at 6:00.
I will be sure to log back on if something happens. Tomorrow will be a late update. We have a 10, 11, and 2:00 appointment. Please pray that Taylor is cleared for his surgery so that we can get it done and out of the way. Pray that he cooperates for his hearing test and that he gets good results on his developmental tests.
May 23, 2004 Day +417 Day #115 off treatment
Well, today was another fun day. We missed church. I don't think any of us even rolled over during the night. We were all dog tired. I think I will have to put my choir on hold and start back in the fall. We are going to be out of town for so many Wednesdays and Sundays that it is crazy. Anyway, we slept very late then went to lunch and to Wal-mart. We got our film and travel things for this weekends trip to Orlando. We were not gone too long and we were back home. I stayed inside with Logan and cleaned all though you can not tell I did a thing. Taylor and Jim went outside and cut grass and played ball. Jim turned the sprinkler on and Taylor got closer and closer until he got in it. Sneaky devil!! He would run through it and then run back to us with this crazy look on his face. He had so much fun. We had a blast just sitting on the deck watching him. It is the little moments that are so special. The ones that you would have enjoyed anyway, but not put much thought into them, now they are forever cherished memories.
While swimming yesterday we met a little girl who had open heart surgery as a baby. She also had her teeth capped. She looks fine and is loosing them just fine. Her mom did warn us that they will look huge when he first gets them since we are used to those teeny little rotten teeth. I guess we will look at his Disney pictures for years and laugh at his big teeth, but at least they wont be brown! I am still a little nervous about it, but it will be fine.
Not to much to report on today. We just hung out around the house. Please pray that Taylor is cleared fro surgery. We do not want to cancel it. Pray that he is NED forever.
May 22, 2004 Day +416 Day #114 off treatment
What a day we had today!!! It was fabulous!! We started it bright and early at the "Fun Run" at Centerfest. It was hot as blue blazes, but we did our mile in memory of Janie and to raise money for the car tags. There was a great turn out. We saw many familiar faces, saw some new faces, and ran into hospital staff, as well as put faces with names of people that keep up with this web site. It was a great start to the day. After the run was over or walk in my case:) we went to the "fun zone". Taylor got in the huge hulk slide and climbed up it all by himself and went back down it and yes, there were kids in it. Yahoo, go Taylor!!! All too soon we had to leave to head to his ball game. We had to drag Taylor out! He rode with Guh in her car and he did it with no shirt since he had dumped his tea all over himself. He thought he was cool.
We registered for the run outside the Rave theater where Taylor went the other night, he was so excited to show us that he went there and to point to the Shrek posters.
We just knew he was going to be in a pain in the you know what at the game since he was tired all ready. Well, he proved us wrong. He cooperated better than he ever has. He hit the ball both bats and ran all the bases. He did it with a cup in his hand, but it was so very hot. He didn't do to much outfielding, but oh well. Coach Curt was very nice and changed his ball game next week to 9:00, so Taylor will not miss it or at least not all of it. We have to be at the airport at 11:15, so we may have to cut out early. He gave Taylor his team ball just in case we miss next week. It has all the kids names on it and a big green A. What does Taylor do with the pretty ball? Throw it in the red dirt:)
After the ball game, we went home and Taylor went swimming in his pool. He was having the time of his life, but we were still hot, so we packed up and went to Jimbo and Joy's pool. It was so much fun, thanks guys, for letting us come over!!! Taylor was a little skittish. He liked being on the steps. He did let us take him out further a few times. He loved watching Jim jump off the diving board and splash him. He thought it was so funny that he even gave it a try. He geared up in his life jacket and ring and let Jim hold him while he jumped in. He didn't care to much for going under, but he didn't cry. Jim had told him to hold his nose and he reached over and pinched it and said "like this". Well, Taylor reached over and pinched Jim's nose!! We laughed and laughed. Logan got in his little boat. He just laid back and chilled. He loved it. Taylor liked it when he was little, but he didn't just lay back and relax like Logan did. After we took Logan out, Taylor got in his boat and that was the ticket. He was all over the pool. We bought him a little ring with leg holes and we are taking it to Disney World. It was very late when we left there and we headed to Ga-maw's to visit for a while. It was about 10:30 before we talked to Taylor into going home. He knew he would fall asleep in the car and he didn't want that!
Taylor told me that Macey wasn't his girlfriend anymore, Anna is. Later he changed his story, he now has 2 girlfriends. He is cracking us up. He can not remember Anna's name, so he says "May May my girlfriend and big pool is gurl"
It was a fabulous day, it was great to do normal activities and not worry about anything else. Thank you to everyone who came out to the Centerfest activities and helped out with the tag efforts. Don't forget to keep spreading the word on the lemonade stand, it is only a few weeks away!! I am having a facial on Wednesday night, if you want to attend please email me by Tuesday morning, so that I can give a total of people. The more the merrier. It is a free facial and you will get to test out all of the Mary Kay Miracle set products. email@example.com
May 21, 2004 Day +415 Day #113 off treatment
I have a prayer request to add to our usual list. Jim McKinnon, the principal at C. F. Hard Elementary, where Ghen Ghen teaches, has discovered that his Lymphoma came back after 5 years remission. He is a possible chemo and stem cell candidate. Please pray that what ever treatments are done, they cure of his disease.
Happy Friday. This has been a busy week. We have been on the go all week. I think we will do a lot of nothing today and start again tomorrow with an even busier week. Last night was Justin's high school graduation. It was a nice ceremony with a few parents who couldn't follow the rules of being quiet throughout the ceremony:) It was downtown at the BJCC. It was a pretty big group of kids. It was kind of funny to sit and watch, I felt old! I also thought about those 200 kids down there that had thoughts of the future running through their minds. It was not until college started in the fall, that I felt different, the summer felt like any other. They probably do not realize how different life really will be. I also thought about how none of them were thinking how in just a few short years they would be married and have kids, kids that may or may not be healthy. I know that the thought of me being married with 2 kids, one with cancer, was not going through my mind way back in 1996. I do not say that to be negative or anything, just that it is funny how life throws you curves that you didn't plan for. It is going to sound crazy, but I wouldn't trade anything about my life. I have met health care professionals, children, families and all of you who look in on us because of this ordeal. Yes, I do wish I could have met you all by some other means, but yet I am so glad I have found you all. Thank you all for all you have done for us!!!
I do not know what we will do today other than the normal clean up time and lounging. I am sure we will have to go to Wal-mart, we have not had time to do that this week. You know you can not go a week with no Wal-mart.
We will be sure to update you again if anything good comes up. Until then, we will plan to see you all at 9:00 tomorrow for "Jogging For Janie" and then at 11:30 for Taylor's ballgame.
May 20, 2004 Day +414 Day #112 off treatment
I must apologize to you all that probably missed the news segment last night. We did not find out until we got ready to shoot it that it would air on the 10:00 news. We did not get home ourselves until about 10:00, so we didn't get to tell everyone. Sorry!! It was Channel 42 and it was a good one. Of course I am a goof ball and set up the VCR for 10-10:03 rather than 10:30, so we didn't get it on tape, but Guh did, so we are ok.
Taylor, Logan and I met Guh and her "work girl" for lunch. Then we headed to the hospital to do the news story. They asked the same old questions and talked about the car tag and Center Fest that is going on this weekend. We will be there for the "Jogging For Janie" event and we hope to see you there. We will have to leave after that to go to Taylor's ball game. It is his LAST ballgame, so if you want to come to one this is your last chance!!! 11:30, on field 5!!! Taylor yelled into the camera that he was going to Disney World, she said she wanted to come see us off next week, but we do not know if she really will or not. She also said that she would be back to do the Lemonade stand story a few days before it started.
Last night Taylor went to the movies with Ghen Ghen. It was his first time to go to the movies and he did great. He sat quietly with his popcorn and m&m's and watched the movie. He occasionally let out a giggle if it got too quiet. He had a great time, thanks Ghen Ghen. We hate the Bob had to miss it.
Jim dropped me back off at Nana's and then he headed for Taylor's ball practice. I went to Justin's graduation. I didn't get home until late, but Taylor was still up and was telling me about practice. He played football with Braxton and he lined up all the bats and balls. While Curt was doing infield, Taylor would hit him a ball "golf" style so that he could hit another one. He is so silly. I guess we will go to practice next week even though he will miss the game. He has fun even though he is not doing what he is supposed to do.
All my Mary Kay came last night. I was so exited, but too tired to go through it all and try to put it away, so that will be tomorrow's adventure. You can check all of our products out at www.marykay.com/kwatts20 and you may email me at firstname.lastname@example.org
May 19, 2004 Day +413 Day #111 off treatment
What a fun night we had at the ballgame. We got there very early at about 5:45 or so. Taylor got a floppy hat and a t-shirt. He ran up and down the bleachers and climbed and romped like every other little kid was doing. As nervous as I was watching it, I was so glad to see it. We went to the ball park on May 13th last year and Taylor threw the first pitch out. He wore a mask and had to leave once the pitch was thrown. We stayed and watched the game with out him. It was a great night and the Red Cross rolled out the red carpet for us, but tonight was better. Tonight was also the Red Cross night at the Met. We saw one of our good friends, Keith, that works there. He is working on getting a news story done with Andrea Lindenburg and Taylor. I will keep you posted on that as I hear more. He also told me that the Red Cross is the only place that is providing platelets to Children's Hospital and they are tight now due to summer anyway, so they are really in a crunch. Please, go give platelets at the Red Cross. It is a long process, but worth it!!
We got our quarter hotdogs and Taylor's pop corn and sat down to people watch for a while. The man a few rows over just kept staring and smiling. I was about to throw my hotdog at him when he got up and came over. He was the photographer from Camp SAM last year. He remembered Taylor from his pictures he took. WOW!! He was very nice and even offered to get us a copy of the montage he made for a camp function. Soon I heard another familiar face. It was Drew and his mom that used to be in my class when I was teaching. It is always so great to see my kids. Taylor stood with them while I went to get his hat to let the Rugrats sign that was a huge step for him.
It started to rain on us, so we ran up and stood in the tunnel for a while. Well, while we were standing there Patti and Dollar Bill came up. We gave Patti some flyers and talked about the Lemonade stand. We are working on getting them to come out one day. She was really nice. Dollar Bill was off doing something, so we didn't get to see him.
The rain slacked up so we went back to sit in the stands. Well, our new seats were right in front of Beth, Taylor's favorite stem cell nurse. She made him cheese toast about 10 times a day, but he never ate it. He turned into a little show boat then. He did his loudest "GO A's" for everyone to hear. He was racking us up. Finally, Chuckie and Angelica came out and we went to meet them. He took a picture with Chuckie and he signed his hat. Angelica didn't have a pen, so she didn't sign it. They were only there about 10 minutes, so he didn't have time to get a picture with her, but we got a few shots of the two characters, so he can prove he met them:)
It was the top of the 2nd inning when he was ready to go, but it was 8:00, so we left. Nana had given us some free tickets, so it didn't really matter that we left. He had done a lot already. We went and got Lo Lo who was sound asleep at Nana's. She gave him a bath and he smells so good.
Today Taylor went to the Dr. and had a recheck for his cough and runny nose. He is still coughing, but not as bad and his nose is drying up. He is wheezing now, something he was not doing last week. We are now on nebs of Pulmicort and Zopenex every 4 hours until Tuesday when we will go back to Dr. P at 2:00 and be checked again. If he is wheezing then they will cancel the surgery, so pray!!! He got 5 shots today. He didn't cry until the 4th one and he jumped, so I think the jump made it hurt more than it would have. He cried just a minute then ran off to get stickers. Dr. Petelos asked if he had had the shots yet, he was shocked at how well he took it all.
Taylor took a ball!!! We went to Hobby Lobby and he took a ball off the shelf and I didn't know it. We were half way home when he asked me to take the tag off of it. I was so upset. I told him that he had to tell mama that he had a ball so we could pay for it. I told him it was not nice to take things that do not belong to us. He was scared, I could see it in his eyes. I didn't mean to upset him, but I don't want him to think that he can do that.
Well, we will go back to Children's and Greenvale on Tuesday. We have to let Petelos clear him since we have been using him with this cold even though we will be going right by clinic 5 where Dr. Berkow is. Oh well, it is just $2 per gallon gas that I am using up:)
That is all we know. We are home now and just hanging out. Taylor says his right leg hurts and she said his right leg that got the Tetanus would be sore. He laid down for a minute, but he got right back up and is playing, so it doesn't hurt too bad.
Pray that he is not wheezing when we go back in on Tuesday. Pray that he never again has to fight this disease. Pray for all of our friends that battle it with us.
May 18, 2004 Day +412 Day #110 off treatment
Hi all, we are at Tuesday again and today we have lots of news to share and lots of plans for the week. This morning Dr. Austin called and set up an appointment for us to go over Taylor's results. We will go in at 10:00 May 25th which is the day we will have his hearing test, so hopefully he is going to cooperate for that. We also were contacted by the media relations department at the hospital. We will be doing a story later this week to air on the news. I will get you all the info once Patrick emails me back. He also wants us to do the Children's Miracle Network Telethon in June. Taylor will be coming straight from the ball park in his ball uniform. Patrick thinks that will be a great way to show just how far Taylor has come with the help of the wonderful staff at Children's Hospital. We are looking forward to both events. We will be so busy the months of June and July we will not know what is straight up or sideways, but we wouldn't have it any other way.
Tonight we are taking Logan to Nana's and we are going to the Baron's game where we will se the Rugrats and Patty and Dollar Bill. Taylor is more exited about it being hat night. He has already said he wants a new shirt and hat and that he does not want a hot dog, instead he wants pop corn.
Jim took the boys to the Galleria last night after we made the swap. Taylor got him a Buzz outfit and shoes to take to Disney World. He thinks he is one cool guy too. He also ate all of his dinner!! Way to go Taylor! I had my Monday night meeting. It was customer appreciation night and we played Bingo. I won two times and got a necklace, bracelet and earrings. I ordered my inventory last night also, so I am officially ready to sale, so let me know. I am ready to do some facials or pedicure parties, so again please let me know if you want one or would like to have a party. We will be out of town from May 29-June 4, so not those days.
Kids must be born with that sibling rivalry, nagging thing. Taylor was asleep on Jim's pillow and Logan was in the middle. Logan kept jerking his shirt and scratching Taylor's arms. Taylor was flinching and jumping. I put a wad of the covers in between them thinking he couldn't move them. Well, he worked with the covers until he moved it and then went right back to messing with Taylor. I finally had to put Logan sideways so that he could not reach him anymore. Boys!! How will we ever survive when they are bigger!
Pray that Taylor is NED forever. Pray for all those that have been in this fight with us. Pray that all our friends are doing okay today. Pray for those families who have lost their loved ones. Pray for us to have a safe and fun trip to Disney World and NYC.
May 17, 2004 Day +411 Day #109 off treatment
Today has been like every other day. I am cleaning and Taylor is dragging out faster than I can clean up. We will be heading towards Hoover tonight to meet Jim, so that I can go to my meeting. Both boys are in a great mood and playing. Logan had a bowl of oatmeal cereal and I couldn't feed him fast enough, he was sitting up and lunging at the spoon. He spits all the time eating or not eating therefore I was wearing as much cereal as he was. He also had a bottle of diluted apple juice. He loved that. It will only be a special treat that he gets when he is constipated as he is now. I can't have two rotten teeth kids!!
That is really all there is to tell. I have put in a call to Kay, our social worker to see about our NYC trip and to Dr. Austin, who did Taylor's developmental testing. I will let you know what we hear.
Please continue to pray for Taylor and his success against the beast that once consumed his body. Pray he never again endures treatment again. Pray that Logan never endures anything close to that. Pray for all of our friends that are in this fight with us.
May 16, 2004 Day +410 Day #108 off treatment
Another wonderful day!! We were all up early getting ready for church. Taylor loved having so many familiar faces at church this morning. He was able to sit with Pippy, Pop, Pam, Guh, Nana, Gam-maw, Paw-Paw, Jeanna, Bob, Joan, and Melba. Thank you all for coming and helping us celebrate our big day. Taylor and Logan looked very nice in their matching outfits. Logan fell asleep just before we went up for the baptism. Rev. Scales did Taylor first. He did just fine. We had talked to him about it and what all he would do. He asked if it would tickle when he put the water on him. I told him probably not, but if it did just smile at him and not to cream at him! He followed directions. Logan jumped a little when he touched him, but did fine. He got a little whiney towards the end, but he was just mad that he got disturbed. Rev. Scales walked Logan down the aisle for all to see him and by the time I got him back he was already asleep again. He slept through all but the last 2 or 3 minutes of the service. I was glad he was good, but my arms were killing me!
After church we headed to Golden Rule to have some lunch. It was pretty darn good! We just happen to run into the preacher and his family and the choir director and his family. I told them I wanted to join the choir. Do I sing you ask? No, I answer. No, really, I don't sound like a dying cat, but I am not the next American Idol. I am good enough to blend in with the others:) I think it will be fun and a chance to get out some, if Taylor will let me.
After lunch we rushed home and changed clothes and then rushed to Jackson's party. We were a little late, but that was okay. Taylor had so much fun!!! Lou Lou the clown, from the hospital, was there. She did some magic and then painted their faces. She made Taylor a dog. It was really cute. He made himself right at home by going to the play room and getting toys. He remembered from the pottery party just where everything was. He ate most of his cake and Miss Lynn made him some tea. I was holding his plate and Logan kicked it and icing went everywhere. Sorry Lynn!!!! Jackson got some cool gifts and Taylor joined in the fun of watching him open them. Taylor really liked his swing set. We will have to go back to play sometime.
We went to Pippy's house to drop off some flyers. We sat there and talked a while and played. Taylor played hide and seek and drew some pictures before we left. After that we headed to Gam-maw and Paw-paw's. Perfect timing too, she had just cooked dinner:) Taylor had a blast climbing through the open window into the computer room and running into the living room and going back out the door. It took me and Gam-maw a minute to figure out how he kept getting back to the living room without us seeing him come in the door. He was laughing so hard!!
When it stopped raining we went down to Jimbo and Joy's and played. He wanted to jump on the trampoline, but it was wet. He played Frisbee with Anna instead. He had so much fun. He wants to go back next week and swim. I think we may just do that and let him get used to a big pool before Disney World. He has no fear of his pool, but it is only a foot deep.
By now Logan was getting fussy, so we headed towards home. Logan ate and went right to bed. He was so tired, he hardly napped at all with the days excitement. Taylor was tired, but fighting it. He eventually fell asleep in the chair and Jim had to move him to his bed. I don't think we will hear a peep out of wither of them until morning. I would say that Logan wouldn't get up as early to eat, but he must be on another growth spurt. We can not feel him up. He had 11 ounces the other night in one feeding, PIG!!
Please continue to pray for Taylor and his continued success against this disease. Pray for all of our friends that battle the "C" word everyday.
May 15, 2004 Day +409 Day #107 off treatment
What a day we had today! We started the day early with a 9:00 ballgame. I had a tanning appointment, so I just dropped the guys off and left. Well, of course that was the game that Taylor hit a ball the Coach Curt pitched and not off the tee. Once I got back he started his normal whiney routine. He ended up in the bleachers crying and refusing to go back out on the field. He finally did and hit his ball of the tee with the wrong end of the bat. He hit it though! After the ball game we came home and I cleaned up and Taylor and Ca Ca cut grass. We left around 1:00 and went and got Logan a matching Christening outfit for tomorrow. Taylor got a haircut and he looks very handsome. We hung some flyers around town and went to Toys R Us. Taylor got a Cailou video and we have already gotten our money out of it:)
As if that wasn't enough excitement it was now time for the real fun, Chuck E. Cheese. We met Jane and her grandchildren there. We all had a wonderful time. Thank you Jane and Lifesouth!!! Taylor ate 3 pieces of pizza, that was worth the trip right there!! He played so many games and won 397 tickets. Chandler was sweet and gave him all her tickets, so he got to cash in 532. He got an airplane, chap stick, a lizard, candy and a few other little things. I felt bad for him. He was pointing and yelling he wanted the box the box. Well, she gave him a box of candy and he was so frustrated because that was not what he wanted. Finally we figured out he wanted the little box that said how many tickets the prize in that area was worth. He couldn't get the one thing he wanted. He had a blast thought!! He got a picture made and it is cute. We have 2 more from trips we made a long time ago. We will have to post them all. The last time we went was June 29, 2002, 4 months before diagnosis. I know that because we took him because he was so good at his trip to Children's due to an eye injury. They had to put this thick dye in his eye then look at it with a black light to see if any damaged areas lit up. It didn't, but he still had a nasty looking eye. When you go in Chuck E Cheese they stamp invisible ink on you and you have to go under a black light when you go out to make sure all parent and kids have the same stamp. Well, we got some mighty strange looks when Taylor's eye was glowing! We got home just before the rain hit and it was time for me to start ironing and getting ready for tomorrow's big ceremony.
May 14, 2004 Day +408 Day #106 off treatment
My little tid bits of info are starting to take up more space than the actual update. Cool, huh!! All the centerfest and lemonade info are at the bottom of the page. Please feel free to email us any questions you may have about either event. You will be able to sign up for tags at either place. We are still working on a Notary for the lemonade stand, but we will have the forms regardless and all you have to do is fill it out, sign it, notarize it at your bank and mail it and a check to the address listed. Simple as pie!! We only have a little time left, so don't wait!!
Yesterday Taylor and I went to Wal-mart, the standard of Thursday. We also went to the Galleria, but the round and round was broken. Taylor was a little upset, but he did fine. He had an explosion is what he had and not over the round and round. We were waiting on Ca Ca to get there and I noticed that Taylor has pooped. I checked it out and it wasn't much, so I told him I would change him when Ca Ca got there and could hold our table. Well, we all got so caught up in getting lunch in the forever long lines that I simply forgot about it. After we stood in 3 different lines to get everyone's favorite foods and we all ate, I took him to the bathroom only to discover that it was all over his pants, shirt and body. Of course he had no other clothes. It was not on his clothes bad, so I cleaned it with a wet wipe and let him go. Well, he was mad because he was wet and he stunk the rest of the afternoon. He decided he wanted to go to Guh's house early and not go to practice. That was fine by me since I didn't want to go in the rain and play in the mud and clean up another mess:) So, we played hooky from practice yesterday, but he doesn't participate anyway, so I figure it is okay.
Taylor went to Guh's and the rest of us Watts people stayed home and did nothing. Taylor was a very good boy and had quite an adventure. They had a pick nick in the back of the car because that is where Taylor wanted to eat. They played "work" on the deck and he got a new stuffed puppy from Mr. Bill and Mrs. Shirley. He named it Bozo, but he says Bobo. Bozo had a hole in his foot and all the beans were coming out of him. He was pretending with him. He would throw a ball then hop Bozo over to it to fetch it. He was leaving a trail of beans, so Guh knew to look for a hole. Once she found it they sewed it up. That upset Taylor. He kept asking if it hurt and why Guh was hurting his dog. She assured him that it was a magic needle and it didn't hurt him. How sweet!
Taylor got home around 9:30 this morning and brought breakfast with him. He ate a fair amount and he let Guh go with out and tears. He was waiting on Pop to bring the golf cart. He played outside with Pop for a long time. We took Logan for a ride around the block. He wasn't so sure about that. He did look around and talk, but he didn't like the wind blowing his hair.
Logan also had another fist today. He had oatmeal cereal. He ate the entire bowl, but he looked at me strange the entire time I fed him. He was upset and getting fussy and as soon as I walked in with the bowl and bottle he just grinned and started kicking. He is so silly. He is now asleep and I hope it is a long nap since he has been up since 6:00 and has had a busy morning.
Mrs. Jane from Lifesouth came by today and dropped off some flyers and a few posters. We will get them to those of you who have asked for them this week. If you would like to have a few to hang and have not talked to us, please email me and I will get them to you. We will be going to Chuck E. Cheese tomorrow with the Lifesouth crew to get to know all the great people who have put this event together. Taylor is excited. I do not recall seeing a commercial for Chuck E. Cheese in years and now they are on all the time and he gets so excited every time.
Well, I guess that is about it for this installment of the Watts news. We have a very busy weekend planned, so expect a long update Sunday night. Please pray that Taylor can remain cancer free forever. Pray that he is cleared for surgery Wednesday and that he does well with the shots. He is doing so well, it is kind of scary to have to give him something. Pray that Logan never has to face anything like this and that Taylor never again faces it. Pray for all of our friends that are battling this disease with us.
May 13, 2004 Day +407 Day #105 off treatment
Kalie from Greenvale pediatrics just called and the results of his titers are in. He had negative titers meaning that it is if he never had an immunization as a baby. He will start over from scratch, wont that be fun. He will get all of his shots over a 7 month period the same ones it took 2 years to get the first time:) He will not get a shot on the 4th month. On the 7th month they will check the titers again and see if they worked and if he is okay to get the MMR vaccine and live vaccines. He will get up to 7 shots at a time on some visits and less on others. I know it will be great fun. Remind me not to make an appointment for both boys on the same day or I will be crazy with crying kids. He will start them Wednesday, May 19th when he goes in for his re-check for surgery. He will also be given a special note to get him into school without an up to date blue card.
Last night we met Guh at The Olive Garden. Taylor ate great, but his behavior was a little off. He was being wild and loud. He rode home in Ca Ca's car, he thinks that is the coolest thing. We came home and did a lot of nothing until bed time. Taylor lost his balloon and had a falling out, but other than that it was a good night. He was getting too loud and rough, so we told him to put it away and we would get it back out when Lo Lo was awake. He refused to put it away. I took it away and told him to take it to his room or pop it and he said pop it. I went to the kitchen and still gave him the option of putting it away or popping it. He gave me this awful, I dare you, you crazy lady face and I popped it. I hated to do it, he has been playing with that balloon for months, but his little attitude has got to go. He cried and cried and then the attitude came back. He told me he would go get another one from downstairs. Well, the gate was locked and he couldn't get down there, so he was mad again. He dug the other one out of the garbage and again was in trouble for being in the trash. He is a mess!!! I can see my conversation with is teacher the first day I pick him up from school. She will tell me he has been in time out for saying "butt crack" over and over. He got his mouth popped numerous times yesterday for that.
Well, we are about to venture out into the lovely weather to get some things done. We may or may not have practice tonight and he is going to spend the night with Guh. He has an 11:30 ball game Saturday. He only has 2 more games, so if you haven't seen it yet, you better come on out.
Please pray that he can be NED forever. Pray that our other cancer friends are doing well today and will also beat their disease.
May 12, 2004 Day +406 Day #104 off treatment
Well, yesterday called for more talks with Dr's and more appointments. I will be putting some miles on the car the week of May 24th. W were already going the 25th to do a hearing test, the 26th for his teeth and now we are adding the 27th. We will meet with Dr. Sande in the stem cell unit to discuss harvesting some cells just in case the need ever arises. It will be difficult to get stem cells at this point, but we are going to meet with her to discuss our options anyway. Most of the relapse treatments and trials call for you to have stem cells on hand and the only bag we have saved is the first bag he harvested last December and we know it has Neuroblastoma cells in it.
I also got Taylor's urine results back. They are VMA 8.5 and HVA 24.1 They are higher than last months, but both Dr. Berkow and Dr. Modak are not worried. They say that is small enough to be a lab error or day to day fluctuation. It is in the high end of normal, so we will not be retesting until his next scheduled test in July.
Taylor spent the afternoon mesmerized by the fact that each room has an air vent. He made me walk around and count them all, there are 9 if you are as excited about it as he is! The cable guy finally came. It was just our house that was out and all it was was a cable connection outside had come un hooked. It took him 2 seconds to fix it.
Today we are just hanging out until tonight when we meet Guh at The Olive Garden. We have to take him once a week. Every time we walk out the door he asks if we are going to the Olive Garden, tonight I can answer yes. He and Logan are being very good boys today. Logan is on his tummy playing and Taylor is watching cartoons and playing cars. He wrote all over his hand with a purple marker. He said he was writing his name. He got a squishy football and I am not sure what prompted him to do this, but he keeps putting it in the freezer then rubbing his hand with it. He says "get it real cold and wipe that off". It isn't working, but he keeps trying. This morning we were all in my bed. I was awake, but both boys were asleep, so I stayed put. I was peeping out one eye and once they both woke up Taylor inched over and laid on Jim's pillow that was sideways to keep Logan from rolling over. He laid on it and put his finer in Lo Lo's hand and talked to him in a whisper. It was so sweet. Of course, Lo Lo squealed a very high pitched, not so much a whisper response, but it was sweet all the same.
Logan ate his cereal like a pro. Tomorrow we are going to start oatmeal for a few days then venture into our yellow veggies. Should be interesting. Taylor ate a few Ravioli squares, but decided he didn't like it. He is eating Ritz crackers now. I didn't worry to much about his eating today since we are going to the Olive Garden and he will eat there.
I got my May Kay starter kit today. I have been playing in make up like a little girl all morning. I have catalogs and a few samples that I can share. I will be ordering my inventory soon, so let me know what you would like to try or need.
I think we will try to go to a Baron's game Tuesday night. He saw the commercial that the Rug Rats would be there and he has already been wanting to go to a game, so what better night than Tuesday. He also got his first ever party invitation yesterday. He is so excited. He has had his own parties, but only a few kids were there, so he is ready for his turn to go to someone else's party. I think he might be scared when we get there, but he is at least wanting to go at this point. He has talked about Jackson ever since they came over a week or so ago to drop something off, so he knows who it is and is ready to see his "fwend" again.
Please pray that Taylor has beaten this monster named cancer forever. Pray for all of our friends that are battling this as well.
May 11, 2004 Day +405 Day #103 off treatment
Last night I met Jim and gave him the kids and I went on to become an official Mary Kay consultant. The boys had a boys night full of toys and cartoons. Taylor was still full of energy at 9:45 when I got home, but Ca Ca was running low. I finally got Taylor in bed around 11:15. He appeared in my bed at 4:30. I left him there until about 6:00 when I got up with Logan. It was then that I found out why he had come to my bed, he had wet his bed. I was to lazy to change the sheets then, so I just put him back into our bed.
Today has been a lazy day thus far. Taylor is sitting and watching cartoons on the DVD since the cable is out. Usually he wants to watch a movie, but today he would rather watch what is on TV, go figure. Logan is being a pill. He is not happy anywhere I put him and he will not go to sleep. We have no plans today other than cleaning up and going outside.
I have been on the phone all day with Dr. Petelos' nurse. They never faxed APASS with the info that he had been seen, so she called me this morning looking for the info she needed. I have to take him back to Petelos for a re-check on the 19th before they will clear him for surgery. I hope this Brovex is doing the job because I will be ticked off if they cancel his surgery. He was born snotty and ahs always been snotty! We will go in at 9:00 on the 19th and they will refax his info to APASS and we will go from there.
I am official now with Mary Kay. I should have brochures and some product by the weeks end. Let me know if you need anything or would like to have a facial, skin care class or pedicure party.
May 10, 2004 Day +404 Day #102 off treatment
There were 150 tags sold on May 2nd. We do not know the exact number of April sales, but we hear they were good. There will be a "Centerfest" May 21 & 22 at the Vestavia Hills City Center (where the Rave theater is) and it will help with the tag efforts. We will keep you updated as we hear more about the event.
Today has been an easy/busy day. Logan and I played a little before Taylor got up this morning. I made about 5 different breakfast plates before Taylor decided on a ham sandwich for breakfast. I had to wait for Logan to go back to sleep so that I could take a shower. Speaking of showers, I almost had a heart attack in the shower Sunday morning. I got in, got my rag, wet it and rung it our, put it over my hand and got the body wash and squeezed some out and then looked down and I had poured red apple scented soap all over a wasp! I threw that rag across the tub and drowned him all while trying to be quiet since all 3 of my guys were still sleeping. I was not a happy camper!!! I think there is a wasp conspiracy to try and get me.
We finally were all ready and headed to the church to sign up for Parent's Day Out. Taylor did well with the other kids. He stood by while I talked to miss Sharon, who will be his teacher this fall, but she is off for the summer. Anyway, he slowly inched towards the table and played blocks. He was mimicking everything one of the other boys did. We have decided to go ahead and go 3 days a week, but start him at only a few hours at a time rather than one day a week. That is just too much time in between days and he needs the routine. We went to buy him a lunch box because we have to send a lunch, but they didn't have one. He already has one, but he said he wanted to pick his own out, so I took him hoping that would make him want to go. I told him I would take him back when school starts in the fall and look at all the back to school stuff. He agreed, but is little confused as to why he is going to start school in June, but the school stuff isn't out. I told him the big kids are going to take a break then go back, but he didn't get it. Oh well!! I think he will do just fine, eventually!! They all know why he has not been in school and that he is not potty trained and they were super nice about it all and are going to work with him. He will start June 7th.
Logan liked it there. He looked around and laughed at the kids. He is so silly! I could have left him with no problems. Logan also liked Wal-mart. I didn't take his car seat in because he hates it. I was going to buy him one of those tings that goes in the buggy to help him sit and keep him clean and go ahead and open it up. Well, I bought it, but there was no way to open it up with out a huge hassle. He sat against my purse in the seat and I held him under his arms and pushed the buggy. He loved it. He just looked around and never made a peep. He never goes shopping because he hates it so, but it looks like now he can start going. Once home Taylor went to sleep and Logan ate then got in the floor to play. I can not keep him on his back. He rolls to his tummy then gets mad. He finally fell asleep on his tummy. He looks so cute all snuggled up.
I go tonight to officially sigh up for Mary Kay. If anyone would like to get a catalog in the mail email me your address and I will get that to you as soon as I get them.
Please continue to pray for Taylor and his NED status. Pray that all our friends fighting cancer can win the battle. Pray that the school experience is a good one for us all.
May 9, 2004 Day +403 Day #101 off treatment
"God could not be everywhere and therefore He made mothers."
- Jewish proverb
Happy Mother's Day! Well, we had a wonderful Sunday and Mother's Day and we hope all the mom's did. We started the day today with church. Taylor stayed in big church and though he was not loud, he was not good either. He was wallowing all over and getting up and down. He was bored, but he didn't want to go to Children's Church. He had a diaper full of the first of 4 poops and now has a raw butt since he had to sit in it for an hour. Oh well, maybe he will learn to go in the potty. I doubt it, he does not care. Taylor tripped while walking to Children's minute and fell head first into the kneeling bench up front. He didn't care though, he went on about his business.
After church I told Rev. Scales that I would come in to talk to him about Christening both boys. I will also be going to the church this week to register Taylor for Mother's day out. He will start in June going Monday, Wednesday, and Fridays from 9:30-1:30. Logan is not old enough yet, but he may go one day a week late on. I think I may let him go on Fridays and use that as my cleaning day with no kids to "help" me. We plan to start Taylor at one day and move him to 3. He will like it if he will ever get into it. The teachers are going to hate me, but I am not going to stay with him, I am going to leave him or try to.
After church we went to Guh's for lunch. Taylor played outside on his vroom vroom most of the time. He ate very little, but he did eat some ham and green beans. Logan was a good boy today too. He laughed and talked to everyone and took a very short nap. After some outside fun at Guh's we loaded up and headed to dinner at Gam maw's. Taylor ate a little there as well, but still not a lot. He loves to go outside and watch the boy next door to her, ride his skate board. He loves skate boards in fact he thinks that his fire truck is a skate board although I think it is a bad idea. He will learn that lesson the hard way, I guess.
Logan had a ball in Taylor's old walker that is at Gam maw's house. He could swat at a toy on it where on ours, they are too far away fro him to reach. After a while in the walker he was tired of it and moved on to the pallet. He got ticked off there too, but it was his fault. He is the big roller over guy now:) He can go to the right from back to front, but can not get back over. He gets so ticked off when he gets to his tummy and realizes that he is stuck. However, as soon as we roll him back over he goes and flips right back to his tummy. I guess he will figure out how to get back to his back if he gets ticked off enough.
Well, I have news. You can all start emailing me your "ha ha's" and "I told you so's" (no, I am not pregnant). I have decided to give the Mary Kay thing a try. I have an interview Friday at Children's for the Child Life job, but I am not ready to go back to an 8-5 job. I am used to being at home and watching the kids and I am not ready or willing to pay for daycare and have the constant sick kids. I am going to the interview to be sure it isn't an offer I can not refuse, but I doubt it. I am going to try Mary Kay and hope that that will provide enough income to help us out without me having to leave the house everyday and send the boys to school. I am going to give myself at least 6 months to see how it goes. All of the lovely ladies that helped persuade me into it have done very well and some do this as a career, so I am hoping that I have the knack and can make it my full time job. I will be officially signing up and ordering things tomorrow night. I will have Jim put a link to my Mary Kay sight and there you can order over the internet, so any of you Taylor fans that are not in Birmingham or in Alabama and do not have a consultant, can still order from me. If anyone is interested in ordering or hosting a facial or pedicure party please feel free to email me and I will help you out. I am excited about it, but scared to death too! So, ya'll help me out!!
Please continue to pray that Taylor has been healed of his cancer forever. Pray that he never again has to endure treatments. Pray for all of our friends that are living with cancer in some way or another rather it be a new diagnosis, relapse, remission or they have earned their wings.
Tag update!! As of March 31 there have been 291 tags sold!!! April has not been reported and we know that over 100 were purchased last week at the party that Margaret Anne and Sean's families held. Yahoo, keep up the work!!!
May 8, 2004 Day +402 Day #100 off treatment
Well, hello there! How was everyone's Saturday. Ours was HOT!!! We started the day with a ballgame that was miserably hot and the kids behaviors showed it. Taylor was not the only one crying today. He did not participate in the first inning at all. He sat in the dug out mad about who knows what. He refused to bat and ended up in the bleachers with me. He finally agreed to go back out with Gam-maw. He played in the dirt and hit the 2nd inning. He ran to 3rd, but at least he did it. He finally made it to first and rounded out the bases at full speed and slid into home plate. He had a special snack from Coach Curt. Taylor cried at practice last week because by the time he got to the snack box it only had Oreos and he wanted animal crackers. He loves Oreos too, I guess he just wasn't in the mood for them that day. Coach Curt made sure that he had some animal crackers today. Thanks Coach!!
After the ball game we went home and played outside. We moved the pool out into the yard so that it could warm up in the sun shine. Taylor loved it today. He has a deep and shallow end since it is going down hill. He was sliding down the hill and jumping in the water. He got in his inter tube and floated around. He was real brave. I can tell it paid off, he did not mind me washing his hair today after going under a few times yesterday and seeing that he lived through it:) Chris and Temperance brought Christian over to go for a swim, but he wasn't so sure. It was still kind of cold too, so we will try again. They were so cute in there swim diapers that looked like Speedos.
The afternoon went by very quickly and before we knew it is was time to get ready for a wedding. Lori, one of my bridesmaids got married tonight. It was beautiful and great to see some old friends. Temperance, Chris, Jim and I went out to dinner afterwards and of course the usual stop at Wal-mart.
We came home around 11:00 and Taylor was still in full force. He did finally settle into bed to watch the Wiggle's. He gave Paw Paw and Gam maw an adventure while they were here. He jumped into the pool with his clothes on. Paw Paw was with him, but didn't think he would actually do it. The last time they saw him swim, he was afraid of it. Not anymore!
Medically speaking, he seems to be better. He still has a cough here and there, but not like it was. He is still snotty, but it is not as green and thick as it was. I don't know if it is the antibiotic or the Brovex, but whatever it is it is helping. He is off the Zithromax, but it will keep working for 5 more days. He will continue to take the Brovex for a few weeks and if it is helping he will be put on it permanently for allergies. I assume that will be the case. He takes it fairly well considering its looks. It is a thick yellowish brown goop that smells like bananas, but he is quick to tell me that it does not taste like them. He had a few poops today as well, but again we are just letting it go since the Dr. was not concerned.
Please continue to pray for Taylor's success in beating this disease. Pray that he never again faces the beast that once consumed his body. Pray for the families that are reaching anniversaries of deaths, parents that just lost a child, that were just diagnosed and those still fighting. Pray that those that are NED can remain that way forever. Pray for all of our friends that fight cancer everyday.
May 7, 2004 Day +401 Day #99 off treatment
Tag update!! As of March 31 there have been 291 tags sold!!! April has not been reported and we know that over 100 were purchased last week at the party that Margaret Anne and Sean's families held. Yahoo, keep up the work!!!
Well, he cooperated somewhat at today's testing. It took a little coaxing and bribing, but he slowly got into it. He started out by using my hand to point out the pictures she was asking about. Then he got tired of that and started crying and being ugly, so she got out a box with a car, pencil, cat, dog, horse, button and a watch in it and asked him things like which has fur, which do you raw with etc. He did very good and then after a few tries, he was bored and starting being silly. We decided then to let him play while she asked me some questions about his speech, social skills, independence etc. We did that for about 5 minutes then we worked with a puzzle. She would tell him to get the tree and put it behind his back or put the child on the bridge. He did that well. He did miss put the child between the trees. He put the child next to the tree, but he did not move the other tree on the other side of the child. I was impressed with this one. She said after you touch the truck hand me the tree and he did it. At that point we went ahead and let him play some more while I answered more questions. He looked at her book while we did this, so she stopped and moved to the book since he was interested. He did very well at this one. He would look at a picture of 4 things and then she would ask a question. You are supposed to go until he misses so many in a row, we finally had to quit because he was bored. He never missed more than one. He did call a window a door, but he balanced it out by knowing what a bow and arrow was, what peeling was etc. He played a matching game with her too. She would show him four pictures then give him a card to match to a picture. It started with looking at 4 shapes and matching a shape to it, but it got harder. He had to match a square with 4 dots in it to a circle with 4 dots. He had to match a half triangle with a half square. I was very shocked that he didn't match it to the other triangle. He said a few words for her even though a lot of it had to be whispered or interpreted by me. I think he did pretty good. It was about a 2 1/2 hour test, so it was only natural that he get bored. We were going to try and shorten by having one person do him and another one do my part, but we all know that wouldn't have worked, so we just had to stretch it out and do what we could. He did very good though.
Once we got home he went to the bank and to Don Don's with Paw Paw. Now we are all fed and we are waiting on Paw Paw to come back. Gam-maw, Paw Paw, me and the boys are going to the Galleria and then to meet Ca Ca at, you guessed it, the Olive Garden for dinner. We just had to call Pippy and tell him to bring Taylor some paper when he gets home from work. He specified pink paper. That is what was in a board gamed that he was playing with that had been there for years. I explained to him what it was, but he may not can get the same paper and we are just hoping that he doesn't get ticked off when it isn't the same.
Taylor has a ball game tomorrow at 11:30. It will be nice and HOT for us, but he is excited. Practice got cancelled last night and you would have thought that he participated and loved practice the way he reacted. He cried and cried and yelled at me "but it is my ball time". He is his own person, that's for sure!! Hopefully that means that he will participate tomorrow. He doesn't have, but 3 games left. There are 4, but he will miss the 29th due to us going to Disney, I think we can handle missing that one.
Please continue to pray for his success against this beast. Pray for all our friends that fight with us!!!
May 6, 2004 Day +400 Day #98 off treatment
Wow! Day +400.I know I say it every time, but I can remember how long 100 days sounded this time last year when we were on "lock down" until he had a chance to recover some from transplant and now in almost no time it is day 400. It blows me away to think of what he has done. He has lived more in 3 years than a lot of 70 year olds have. It is so sad, but uplifting at the same time. Uplifting in that he is a walking miracle that has endured what he has with a smile and no cares.
Happy Nurses Day!!!! We love all of our nurses. Thank you for all you do for us.
Well, the walking miracle and I made quite a few discoveries yesterday afternoon. The first being that our house is haunted and whomever haunts it does not care for certain things being hung on his or her walls. In the kitchen we have a little rack with 4 hooks on it with a few nick knacks hanging from it. Occasionally it will just jump off the wall and hit the floor. Most times in the middle of the night, we have never been in the kitchen when it happened. In my bedroom there is a shelf with 4 candles sitting on it. It also jumps off the wall occasionally. That one I have always explained away since it is next to the bathroom door so maybe it was jarred off or we hit it when we put clothes in the hamper that is under it. Well, today Taylor and I were watching George Shrinks and we heard a crash. I knew what it was when I heard it and ran to the bed room. Sure enough there was the shelf and all the candles all over the floor. This time one of the glass holders broke, so I had to make Taylor step back and clean that up. It should be fun to get the laundry out of the hamper this week since I am sure there is some glass in it.
Our next adventure was another bug vs. vacuum adventure. There was a bee in here. I am not sure where they are getting in at, but I am not too happy about it and neither is Taylor who freaks if any sort of bug dead or alive is spotted. I immediately got the good ole vacuum out to suck him up. I got out all the extensions so that I was in no way close to it and sucked him right off the blinds. Well, the dirt chamber was empty since my house is so spotless that when I vacuum there is no dirt to pick up. Oh. excuse me, I drifted off into a magical fairytale of cleanliness. Anyway, it had been emptied the last time we used it and so Taylor could see and hear the angry bee flying around. He started to cry for me to let it out, he who was just screaming to get it, wants me to let it outside cause it wants its mama and ca ca. Oh, the drama!! Well, mama is not letting that mad thing out drama or no drama, so Taylor settled in to just watch it flutter around in there.
Speaking of bugs we have been watching those darn cocoons for weeks now. Last Friday Taylor was out on the deck alone and told me that he saw "sumpin". I went to see what it was cause it was freakin' him out. It was a cocoon that was made on his play house door. I told him it was like the ones in is bug jar and it would make a butterfly. Once inside he kept telling me to look at his butterflies. I kept trying to explain that it was not a butterfly yet and that it would be soon. He argued, but I just assumed he didn't understand and didn't worry about it. Well, later that night I was looking at it myself. The jar has been on the counter and he is short enough to be able to see the underside of the lid that we can not see. The lid had dead moths all over it. I don't know how they get out of the cocoon because they are all still in tact, but they did there jobs and made ugly gray moths rather than pretty butterflies, but still did its job and we missed it and killed the things. Hmmm, how do you explain that. Luckily, he just thinks I am crazy and I guess he decided not to worry about me not understanding that he did see butterflies just like I didn't worry about explaining it better. He never asked about it again. It is still sitting there and he keeps looking at it. I guess he wonders what is going on and I just don't want to open it and get any surprises, so it sits until someone dumps it out.
Taylor ate a fair dinner. He had one chicken finger and a little pancake and some fries. Nice combo, huh. Both boys slept fine until 3:30 when Taylor woke up the house because his tea was cold. Logan didn't get upset, but he got fed anyway just in case. That kind of threw him for a loop and he was up early and wanted to eat again. I may have to tick him off and hold him off for a while at one feeding to keep him on schedule today. I don't want him to think we are going to eat at 3:30 every night.
This morning the adventure continues. I don't know if any of you watched Nashville Star, the country version of American Idol, but we did and a good ole Auburn, Al. guy won. We mailed a letter to him and his dad to see if there was anyway he would like to come to our lemonade stand. We figured it was a long shot, but worth a shot. Well, this morning the phone rang and it was the Rev. Greg Cotter, Brad's dad. He said that he got the letter and Brad would love to do it or anything to help, but it is no longer up to him. It is up to Sony records, so we have to contact them. It still is a long shot, but it was so nice to actually get a call from him and know that he read it and took an interest in our story. Thank you Rev. Cotter!!!
I also spoke with Lifesouth and we are ready to sell some lemonade. She is bringing us some posters and flyers tonight. Cindy and Debbie, I will get them to you tomorrow. If anyone else is interested in having some to hang or pass out just let me know. If you live far away from us, but think your friends and family would like to mail in a donation then you can print the flyer we made from the lemonade link and it has an address to mail donations to. Be sure to put that it is for the lemonade stand since it goes to the same address as his fund money. Also, leave your return address so that we can get you a receipt, all money is tax deductible to the fullest extent of the law.
Well, not much going on here. We are looking forward to some outside time today and ball practice this afternoon. Please continue to pray for Taylor's complete healing of this disease. Pray for those who lost a loved one recently. Pray for the Garners today is the one year anniversary of Deanna's passing. www.caringbridge.org/al/deannagarner Pray for all of those still fighting or recently or soon to be diagnosed.
May 5, 2004 Day +399 Day #97 off treatment
Another doctor visit down! Today we went to see Dr. Petelos about Taylor's congestion and snot. I told Taylor we were going to the Dr. and he got mad when we pulled up at the pediatricians office and not Children's Hospital. He said, "No, this is Lo Lo's Doc Doc". I told him that he and Lo Lo shared this doctor, but he wasn't so sure about it all. He did fine and let him listen. He acted goofy like he used to with Dr. Berkow. He was breathing real fast and coughing fake coughs while he tried to listen. Dr. Petelos thinks it is mostly allergies as did we, but put him on an antibiotic to help kick it since he has surgery coming up. He suggested that we see an allergist if it persists. He said that his ears were not clear, but not infected. They do not look any different than they have in months to me and my mini flashlight, but who am I to say. Dr. Berkow did not look at them yesterday and neither did the audiologist, so I can not compare. The antibiotic will kick that before it starts too, so no biggie. He also said we may need to go back to the ENT to talk about the tubes that will not fall out as well as new ones. Oh, how I hope we do not have to get tubes again. They are not a big deal, it is a simple surgery and you don't even know they are there, but he does not need to be to sleep all the time. Taylor will take a 5 day course of Zithromax and he gave us a few samples of Brovex for his allergies. If it helps we have a prescription to fill if not we will try something else. They drew blood to do a Diphtheria and Tetanus titer. That was done since he had an autogolous stem cell rescue meaning he used his own blood products. Even though he was wiped out the blood could still hold that immunization and he will not need to get it again. If he is immune to it then he will not get shots again until kindergarten like all other kids. All he has missed getting as far as regular shots was MMR and he can not have that this soon after transplant anyway. I am not sure I understand it all, but that is the gist of it and hopefully he will not need them and we will not have to put him through the pain of 7 and 8 shots at a time us through the worry over what it could do to him to get them. I didn't even think about putting Emla on his arm for the blood draw, I guess not going to Children's made me lose my train of thought on that stuff. He looked panic stricken when he realized she was going to do it with no magic cream. He looked at me and said "what is she gonna do to me". He never cried and I think pulling that tegaderm off the skin is equally as bad if not worse than the little prick of the needle. He told me several times on the way home that it hurt real bad, but I think he was just talking.
Logan has been so funny today. He lays in bed and runs. He kicks those feet ninety miles an hour and then he will lift both feet up and then slam them down. He looks like he is jumping hurdles laying down. He also has his own music. He will kick his feet alternating them to make a thud thud sound then he will scratch his finger nails on the sheet a few times, so he has a nice thud thud scratch scratch beat going on. He has been squealing in the car and in the house. Taylor and I could hardly hear to sing our songs in the car or to watch Ruby and Max.
Taylor ate all 6 of his chicken nuggets and most of his fries today. I think he likes to do things to me when it is time for a monthly check up and once it is over he goes back to normal. He did have a very runny poop today. Much runnier than the norm, but again I am letting it go and we will see what comes of it.
Well, that is about it on the Watts family. We are all good and glad that the warm weather is back. I think I hear 2 boys about to get ready for a nap and I think I will join them. Please continue to pray for Taylor's success against this disease. Pray for all our friends that battle cancer too.
May 4, 2004 Day +398 Day #96 off treatment
Many things to tell you about today. Let me start by asking for prayers for Rachel and Kyle's families. Rachel Green whom we have all been praying for, for some time now passed away this morning. She had a lung infection that would not heal. Kyle who was a 22 month old with Downs Syndrome and ALL passed away this morning. We did not know them other than from passing in clinic, but he was precious. Please pray for both of these families.
We got to the hospital around 7:30 and went to clinic, but we sat with no secretaries until 7:45 and then went upstairs and registered. Today went so smooth up until APASS, but that is another story. We always have to drink the contrast first and that is a huge chore. He hates Apple juice anyway and then you add the nasty contrast and you have a nasty combination. We usually fight longer drinking it than he has to wait to let it do its magic in his body. They have told me several times that we can put it in tea, but I was always afraid that that might make him not want to drink tea anymore, so I didn't do it. Well, today I brought 2 cups of tea and explained that one was for after the test and one for the medicine and he agreed. When she came out to get the cup rather than telling him it was for meds she acted like he looked thirsty and she was going to get him a drink. It worked, he had all the tea gone within 15 minutes. Yeah!! We ran down to clinic and got accessed and had his blood drawn for his CBC and then headed back upstairs. We waited about 20 minutes and we were called back. We did not have to do a CT of his head, so it was very fast. He was still for the most part, she did have to tell him to be still over the intercom once, but he was just moving his head to look at a sticker that was stuck to the machine and when she moved him up to get a look at his pelvis he went to far to see it and moved to see it. No big deal. While we waited to be called for CT he went to the potty in his urine cup and we got that out of the way on the first try. Way to go Taylor!!!
After the scan we went back to clinic and I didn't get sat down in my chair good before we were called into to see Dr. Berkow. We did wait in there for a bit, but that was fine since Taylor was doing "his business" in his pants and I wanted Berkow to see that anyway. I was in the middle of changing him when the Dr. walked in and he laughed when I told him to look. He said that he just had soft poop that it was not diarrhea and he was not concerned that they have been that way for over a month and that he has around 5 a day some days. Okay, if you don't worry I wont worry. He had perfect counts and a great check up. His CT scan was CLEAN and CLEAR!!! Praise be to God!!! I knew it was just me making a mountain out of a mole hill, but it is still worrisome. I was a lot calmer last night and during the scan today than I thought I would be. I told the radiologist doing the scan that I hated CT's because I couldn't see and I didn't like the way he looked at me through the window. He laughed and said that the image on the computer screen is so small and fuzzy that he doesn't know what he is looking at either, so when he looks out the window it means nothing. He could be making that up, but I bought it:) I was packing up to leave clinic when I realized that half of what we had to do was not done. We had not filled out the surgery folder, seen cardiology, or been de-accessed. Halt, back up, start again. Meredith got a surgery folder since Dr. Fellers had not sent one, Dr. Berkow filled out the physical portion and took car of that. Of course there were no orders in the computer for the surgery and Dr. Fellers had to be paged to get that done, but it was all taken care of very fast, so no big deal. Cardiology thought the CT would take a lot longer than it did as did I, so they had gone ahead and started rounds before coming to do Taylor. They said to wait in the waiting room and they would come and get us when they were done. Miss Ruth de-accessed Taylor and put us back in the waiting room and by the time I could hang up some flyers for the Lemonade stand and make an appointment for our next visit the cardiologist was there. We went across the hall to their office and did that. Taylor didn't mind it at all. He did squirm a little when he pushed on his port, but due to the placement of the port there was no way around it, he had to push it to see the chambers. This was the first echo he has had with the port rather than the broviac. It is also the last. He will have his port removed when we return from NYC and see Berkow again. Yeah!! That was the step that made it all real in the beginning and here we are taking the same step, but as a finally to it all. WOW!!!
After that we headed to APASS the most dreaded of all hospital procedures for me. It took from 10:20 until 12:30 to get it done. All it is, is repeating yourself 100 times to 3 different people then going home. I started with the lady who looked at my insurance card and told me to bring it back the day of surgery. Then she insisted that I go get my parking card and let her sign it even though clinic 5 had already signed it. Then I waited about 45 minutes to see the RN who just went over his history and did vitals and explained to me about NPO and how surgery would go. The same routine we have had 4 other times. She also made me call and get an appointment with Dr. Petelos to get some antibiotics to clear up his snot and congestion and have it all faxed to her tomorrow so that she can clear him for surgery. That is why I see no point in doing that process 22 days before the actual procedure. He may be sick again by then or could have gotten well on his own. I want him to get the meds because I have tried it all and nothing has worked, but it was still kinda pointless to me. Anyway, after we saw her we waited 45 more minutes to see the anesthesiologist to go over how that would work. Anyway, we had 30 minutes to eat and get to the hearing clinic.
We ran to the cafeteria and ate and Taylor had almost all of his grilled cheese and 3 cups of tea. Not to bad! We finished up right at 1:00 and ran to clinic. Taylor decided to do his business in his pants again right about the time she called us back, so we had to hold off a minute and change his pants. We went in and they checked the fluid in his ears and there was none. We have never had a hearing test that didn't show fluid on his ears, so that was good. It shoed that the ear drums were moving, I didn't know they moved, but they do and that is good. It also showed that the tubes were not in the drum, but we knew that. He said they will fall out in due time. I disagree since they are stuck in all the gunk that will not come out, but since several Dr's have seen it and not said anything then I will let it do its thing and we will see what happens. Well, now it was time for the real fun. In the past he has done the baby version of the hearing test. He just sat in my lap and looked at a toy when he heard it. Well, today he was to wear head phones and put a toy person into a school bus when he heard the noise in his ear. He would not even hold the toy. He would let it fall, so we never knew if he could hear it or not since he didn't cooperate from jump street. We tried several games, several toys, several sounds and with me in and out of the room. As you can imagine, me out of the room was not a good choice. After I left and came back in he was so ticked off that there was no reasoning and we just gave up. We have rescheduled it for May 25th at 11:00 and we will see if an earlier appointment on a less hectic day will help. If not, I guess we will never really know if he can hear. I mean, we know he can hear, but we need to know if he had slight damage or no damage. If there has been some it will need to be monitored to see that it does not get worse or require hearing aids. I guess there are other ways to test it, but he did not mention it, I guess we will wait and see how he does next time before we go into that.
Last stop 4-tower. We went to see all our old friends. Taylor acted shy at first, but he broke loose soon and went crazy. I asked him if he remembered how he used to sleep and that others were resting and to be quiet, but I was soon reminded by some nurses that Taylor did exactly what he was doing today even when he was a patient on 4-tower! It was very obvious that Taylor was tired and he soon asked to go home. He was asleep before we hit the interstate. He woke up as soon as we got home, but he was mad because Guh was leaving to go to eat with friends. He had to Call Paw Paw and get him to go to Don Don's. He is still off playing now.
As you can tell, I am feeling much better and we are all glad that today is over. We do still have very important scans in June, but it is good to know that nothing showed up today and that everything else looks good too. We have a full plate with doctor visits, but our next clinic visit is not until July 13th, WOW!!!
Our schedule looks like this: Tomorrow at 9:30 we will go see Dr. Petelos for the congestion that we can not get rid of. He will also run a Diphtheria and Tetanus titer to see if it is necessary to give the DTaP shots. I do not know if Taylor will get any of his shots tomorrow or if he will wait until the titer results are back.
Friday we will go see Dr. Austin to see where he stands developmentally and I am wondering now if he will cooperate for this one or not. May 25th we will try the hearing test again. May 26th we will have his teeth capped. May 29-June 4th is Disney World and that week can not get here fast enough!! June 7-12th is the lemonade stand, don't miss it!!! June 14th Logan will have his 6 month check up with Dr. Petelos. June 28-30th we will be in NYC. July is equally as busy, but with fun stuff such as Kenny Chesney concerts, Chicago trip and Camp SAM.
I forgot to mention who we saw this morning, first thing! Good ole, Dr. Mayberry, the Dr. who continually sent us home, shrugged us off and misdiagnosed Taylor. She spoke and I ignored her. I admit that that was the childish route, but I can not honestly say that I could speak to her without letting her have it. I am a mother, I know my child, I knew there was something wrong and she refused to see it and I do not consider that good bed side manner. I knew that before I had even come in contact the WONDERFUL staff at Children's and so I know I wouldn't like her now. So, even though I was rude and didn't speak to her, I didn't slap her either:)
Please thank God for the clean CT and for a good day overall. Pray that Dr. B. is right about the poops and we will not worry over it anymore. Pray that Taylor will cooperate for the developmental and hearing tests so that we can get him the help he needs if it is necessary. Pray that all our June scans and other appointments go well and have great results. Pray for the 2 families that lost their loved ones today. Pray for the Garner's as they approach May 6th, the one year anniversary of Deanna's passing. Pray for all the children that were at the hospital today and that they may overcome whatever obstacle has been placed before them. Pray for all our cancer friends all over the world. We thank you for the prayers you send up on our families behalf, they are being felt, heard and answered.
As of February 29th there have been 192 curing childhood cancer car tags purchased. The state has not updated the site of March or April sales. Hopefully there have been more, a lot more. Please DO NOT wait until the last minute to buy this tag. We need the 1000 pre-purchases NOW!!! I know it is a hassle to go to the tag office, so if you are not going to have to renew your tag in the next few months and do not want to go to the tag office an extra time then visit the above site and read the instructions for filling out the form, notarizing it and mailing it to the address shown and our friend Dan will do the leg work for you. Please do it for the children!!!! Our friends the Fredella's had party this weekend to help promote the tag and signed up over 100 people!! Yahoo, so we know we are getting closer, but keep passing the word!
May 3, 2004 Day +397 Day #95 off treatment
Well, here we are at Monday again. Today Taylor and I slept late since Logan was at Nana's and Taylor thought it would be fun to stay up until 4:00 this morning. Taylor ended up falling asleep around 8:00 last night after many more fits and a few green beans. He woke up at 1:30 when we were getting in bed. He laid still for a while then wanted in his bed, so I tucked him and turned on a movie. A few minutes later there he was in our bed again. He went back and forth a million times. All I know is at 6:00 when Logan woke up Taylor was in my bed and I don't honestly remember when or how he got there the last time.
The first thing he said when he woke up was "mama, I don't want to eat green beans". I made him a bowl of oatmeal and he ate every bite. We met Guh at The Olive Garden. He ate fair, but not like I have seen him do in the past. He couldn't have cake due to a urine test tomorrow. After lunch we went to Wal-mart. He started to get ugly and I had put film in for one hour service. Since we were in separate cars she and Taylor went on to her house and rode the vroom vroom and I hung around Wal-mart until the film was done. We stayed at Guh's for a while until he was begging to go home. Very unlike him. He fell asleep in the car and woke up when I took him out of the car. He is now watching George Shrinks while laying on the couch. He is very snotty again, he has lots of green goop running out as well as that nasty cough. He has not pooped so far today and it is 3:40. I am still a little fearful, but tomorrow will answer it all and I can not change it one way or the other, so I am not going to allow it to consume me. I can tell you that that is easier said than done, but I am doing my best. He has been very moody. He is fine one minute then flipping out the next. We had to buy him a new shirt in Wal-mart because he "dooled" on the one he had on and it was wet and he wasn't having it. He has drooled since the day he was born, he is used to being wet, but today he wanted no part of it. I know he must not feel well with all that gunk in his head, but I hope that is all it is. I have such a hard time with the discipline part. Am I disciplining an over indulged, spoiled to the point of no repair, child or being harsh to a child that has deadly disease running rampant thru his body? That is the hell we live in. We being all cancer parents. We are so sure and hopeful that they are better now and we can move forward, but at the same time it is hard to be the "bad guy" because that will be part of our memories if anything ever happens to our precious angels. So, if you ever see us let Taylor get away with things he shouldn't now you know why. It isn't that we don't want him to behave, but we have to really pick our battles, more so than most, and some things tend to go over looked. Not that I feel we should have to explain why we do what we do, but I hear people talk and I know people think that he gets away with too much or he is too wild or bad, but he isn't always and sometimes we jump all over him and other times we are just thankful he is here good or bad.
Okay, enough on that, I am not even sure how that all got started. We are back home. Guh is spending the night tonight so that she will not have to get up so early since Taylor and I have to leave here at 7:00 tomorrow.
I had a nice chat today with Todd's mom. Todd is a fellow cancer patient who is in remission. We had a long chat and I am so glad she called. Thank you for thinking of us and praying for us. It is nice to talk with someone who knows exactly what all these "crazy" feelings feel like. You can read about Todd at www.caringbridge.org/al/todds I heard that Rachel is off the ventilator, but she still needs lots of prayers. Pray that she can continue to get stronger and fight off that nasty lung infection. May God grant her a miracle.
Pray that tomorrow will show that Taylor has a cold and poor diet. Pray he has a clear CT scan and great results from his hearing test and echo. Pray that the APASS process goes smoothly. That is my absolute least favorite thing about Children's hospital. Pray for all our friends that fight this disease with us.
May 2, 2004 Day +396 Day #94 off treatment
Well, today has been different! We missed church. I guess we were all a lot more tired than we thought. It was nearly 10:00 before any of us woke up. Logan did eat at about 5:30, but I got back in bed. We do not even set alarms anymore since we know Logan will get up around 8:00 which would have been plenty of time to get ready for the 11:00 service. Oh well! We went to breakfast and on the way home Taylor asked why we were on that road. That road being the road that goes into our subdivision. I told him we were going home. He started to cry and said he wanted to go to church. I felt like crawling in a hole. I am glad that he wants to go now if we can just get him to join in with the other kids and not want to cling to us.
He has not had the best of days. He ate green beans and a few bites of bread and a pudding cup. He has had about 8 ounces of tea all day. He has cried and coughed and pooped and snotted all day. We tried to talk to him about why he didn't eat, if he was sick or mad or not hungry. We got a different answer every time, so we don't know what is going on. He said he had a boo boo on his tum tum and when he pointed it out he pointed to his chest. Well of course I had to get all upset that he has pain there and has a cough, what does that mean? He refuses to eat dinner or drink anything else. He has played, ran, jumped, laughed and everything in between all day, but no eating. He has only had one poop after he ate what little he did this morning. All I know is that Tuesday can not get here fast enough. Sitting in that CT room, wondering what they see on that screen in the other room is going to kill me. I always hate when they stare. What are they thinking? Are they looking at how good Taylor is doing lying there with no sedation and not moving a muscle? Are they thinking how bad I will feel in less than an hour when the results are read to me because they can already see what is there? Are they thinking how wonderful it is to see him still clear of cancer? I hate that 30 minutes in that room. I hate what this disease has done to me and my family. I have no idea when the fear goes away, I guess it never does. I coped so well, I have yet to call Meredith to bombard her with questions, but the closer we get the worse I get.
Anyway, it is now 6:30 we are having a dinner war. I cooked Taylor food at 5:00 and he refuses to eat it and I refuse to let him snack until it is gone. We are going to the Olive Garden for him tomorrow and I told him if he didn't eat his dinner I would pack it up and take it to the Olive Garden and he would eat that while we eat noo noos and salad. He doesn't care. I don't know what to do. I just know that I will be so happy to see Dr. Berkow and Meredith!
Please pray that my patience to not totally give way. Pray that we are just going through a phase, a terrible 3's thing. Pray he will get over all of this soon. Pray there is no spots of concern on this CT and that we can make it to NYC and the rest of the scans with out sanity. Pray that he is still NED and that he remains that way forever.
May 1, 2004 Day +395 Day #93 off treatment
Did you all see on the news that they may have reached a huge break through for Sickle Cell? Wow!! We have several friends with Sickle Cell since the Hematology and Oncology patients are all seen in clinic 5. For those of you who may not know the difference, I didn't before Taylor's diagnosis, Hematology is study of blood disorders such as Sickle Cell and Oncology is the study of cancer. It would be great to see our friends that are often in tremendous pain get relief or cure. Way to go UAB researchers.
Friday night we met Gam maw and Paw Paw for dinner. Taylor didn't eat to much, but he had had a late lunch and he had eaten 5 chicken nuggets and half his fries, so we let it slide. They kept the boys while Jim and I went window shopping at the Galleria and to Nana's to pick up Jim's Bruno Memorial Classic tickets. Thanks Jimmy!!! Jim and Paw Paw now have a parking pass, a VIP ticket and a hospitality tent ticket.
We got home around 10:30 and Logan was out like a light, but Taylor who had had a 2 hour nap due to a fit he pitched, was not ready for bed. Taylor had 5 poops yesterday. UURGH! He ran out of diapers at Paw Paw's and had to put on a pull up. That ticked him off to the point of falling asleep pitching his fit. He did ask for biscuits at 11:00 and he ate 3. He played in his room until well after midnight. He was coughing and every time he did my stomach tightened. I am bothered by all these little things, but then again I keep telling myself, it has been 2 months since scans therefore it is time for me to start nick picking everything. Tuesday will be a hard day for me to sit in the CT and wait on results, but I will feel better when all that is over.
Okay, now to Saturday, be ready to read because I can tell you now this will be long. I had an early start, I was awake at 6:30 and could not go back to sleep, I hate when that happens. I went ahead and got ready and went to the tanning bed. I came back home just in time to get the guys and head to the ball park. Taylor did not really care to play today. He just stood at the plate and looked at the tee, Jim and Coach Curt had to hold his hands and make him hit the ball. As a teacher, I truly believe that kids are affected by the weather and it showed today. The kids were doing cartwheels into home plate, Taylor took off running across the field in the middle of the other kids turns, it was kinda crazy today. As long as they have fun that is all that counts. After the game Jim and Paw Paw headed to the Bruno's Memorial Classic. They had a blast! Mark Prater signed a picture for Taylor. He was very understanding of Taylor's treatments since he himself has had some harsh treatment recently for his own illness. Taylor, Logan, Guh and I went to eat lunch. We took the real long way home and let Taylor get a little bit of a nap then we headed home and dropped Guh and Logan off. They stayed home while Taylor and I went back to fun day.
We got to fun day about an hour before I had to work a booth. The first thing inside the gate was the dunking booth. Taylor was infatuated. He didn't try it, but he stood and watched for a long time. He cracked up at the guy every time he fell in. We had to go back and watch several times. We bought some tickets and started out to do all the activities. They had a strong man thing where you try and ring the bell. Well, Taylor as all about that. He stood in line patiently for a long time and kept getting passed over, I am sure because he was so small, but finally got his turn. I had to help him since the hammer weighed more than him:) Together we hit to 100, I know that is awful, but true! He got to pick a prize and again, that was cool. We then ventured into the land of blow up toys. They had slides, ball tosses, jumpers, a caterpillar you climbed in etc. He went to the obstacle course first. He paid his ticket all by himself. He is too smart. This was a jumper that had several things to climb over or under or through before climbing a rock wall then to a jump area. The rock wall had fallen so no one could get to the back part. Well, Taylor paid his ticket and then went around back and jumped all by himself! He did join the other kids up front soon after and played in the tunnels for a while. Now it was time for the big slide. You had to go up a set of blow up stairs then down the slide he chickened out, but that is not the funny part. He asked the lady for his ticket back! I am not sure how he knew to ask for it back or where he got the courage to do so, but it was pretty funny. He then headed to the space toss. This one had balloons that floated over air and you had to hit the balloon with a ball to knock it down. Well, Mr. aim hit 2 and knocked them out of the air, he was so excited. He then headed to the basketball area. It was so big that we had to pick him and out him in the net area and let him throw from there and after about 20 shots (there was no one at that booth) he rang one. He was done then! That was the booth I was supposed to work, so we hung out there, but I ended up getting moved to the duck pond. That worked out better anyway since Taylor would rather play in the water than watch others throw basketballs. We did that for 30 minutes then turned it over and headed out to go home or so I thought, Taylor thought otherwise. We had to get in the regular "bounce thing" as he calls it. He did fairly well with the other kids. He wouldn't go very far from the entrance and he went in and out a lot, but at least he did it. He then got in the fire truck, but didn't last too long in it since big kids started getting in. We left there and got a cupcake. That baseball cupcake gave him the strength he needed to go back to the strong man thing. We tried to do it by himself, but couldn't even pick it up. We did it again and this time we didn't even do well enough to talk about. We then went back to the dunking booth and watched for a while. We then headed to a booth set up for a local church. They gave Taylor a lot of goodies and I started to fill out the Bible School form, but we learned that Taylor was not old enough. One of the ladies looked familiar, but I didn't really thank too much if it then at the same time we realized who each other were. It was one of the Sunday School teacher that came out to the house in December 2003 bearing a lot of wonderful gifts for Taylor. That was a truly magical night for him and he still plays with everything that he got that night and knows where it came from. She was amazed at how different he looks now from that night well over a year ago. It was very good to see someone that has been praying with us all this time and let her see that God is listening and working miracles in Taylor's body.
By now it was nearing an hour after my shift in the booth, so my plan to come early and leave on time didn't work, but it was so wonderful to see him have fun I didn't care. Finally, we were both in agreement that it was time to go. We passed all the left over tickets to our friend Braxton and left them to enjoy their time at fun day. As soon as we were in the car he asked to go swimming, we attempted it and Guh even put a lot of hot water in the pool, but it was just too cold, so we gave up. He came in and played then went back out later. We watched Remember the Titans, a "pootball" movie and prepared to see if our fellow Auburn man won Nashville Star, but wouldn't you know the cable went out! Oh well, we had "ficnic" dinner in the living room and watched the weather man on Logan's monitor that is also a TV. Taylor thought that was cool and will probably want to watch TV on it all the time now.
Please pray that Taylor is getting over whatever this is that is ailing him. He is coughing and snotty, he has had no poops today, but he has also eaten very little, so I really am at a loss now as to what this is. He ate a ton Thursday and had none, so who knows. Lets just all continue to pray that it is poor diet and allergies. Logan's eye is still looking yuck, so continue to pray that it gets better without a trip to the eye Dr. Pray for the Lindsey's as they start the 2nd week without Lexi. Pray for the Garners who will reach the one year anniversary of Deanna's passing on May 6th. Pray for Rachel who has better counts today and is alert, but still very critical. Pray for all our friends who are battling this disease and others too.
Pray that Taylor is fine, he just has a poor diet and a terrible case of allergies. Pray that he has a clear CT that can be read immediately. Pray that all the tests that day are fine. Pray that Rachel gets her miracle. Pray for all our friends fighting cancer.
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April 30, 2004 Day +394 Day #92 off treatment
Taylor's game is at 10:00 tomorrow for anyone planning to come!!! It is also fun day, so plan to play. There will be zoo animals at the Hoover Toys R Us tomorrow from 2-4. Money raised will go to Children's Hospital, so take the little ones or big ones out to visit the animals and support a good thing!!
I know you all get tired of hearing "one year ago", but it is a good reminder to us of how far Taylor has come. No matter how bad he has been or what he has gotten in trouble for, when we see what we did a year ago we are so thankful for the healthy, trouble making 3 year old we have today. April 30th was a Wednesday last year and it was a clinic day. We had to take Ca Ca because Taylor was in a Ca Ca clingy state of mind then, it is my turn this year. I need his help in the potty. Anyway, Jim rode with us since we are normally done in no time and he would not be to late for work. Well, Taylor and Dr. Lucas had other plans this time. Taylor spiked a fever while we were there and we were admitted. Gam maw had to come get Jim and take him to work while Taylor and I stayed and did a chest x-ray and nose swab. I knew I was pregnant, but no one else did, so I had to tell the nurse to keep it a secret, but she would have to go with us and hold him on the table. I felt awful leaving him alone, but I couldn't help it. It showed he was retaining air in his lungs and needed nebs. We only stayed 2 days in a teeny tiny room, but it wasn't too bad. Also, we were praying hard for Morgan's bone marrows that had shown disease. Praise God both Taylor and Morgan are now over a year past transplant and NED. God is good.... all the time!!! Speaking of Morgan pray that her trip home tonight goes smoothly. She is finishing up round 8 of antibodies in NYC.
Taylor had practice last night for a little bit and then it started to thunder, lighten and rain, so we all packed it up. We went to the grocery store and got some goods to cook and headed home. Taylor had a mac and cheese and pizza dinner. He ate the mac and cheese. He has never before or after chemo liked mac and cheese. I don't know why he loves noodles and cheese, but not together. Well, we have a new rule. If you do not eat at meal time you do not snack and if you do not finish or at least try all the food you get no snack. He ate all the mac and cheese just mm mm mming all the time. He tasted the pizza rolls and didn't like it so he ate some lettuce from our tacos and a taco shell. He still didn't get a snack because it took over an hour of fussing to eat what he ate. We are sticking hard to this rule. He eats all day long, but it is junk. Prime example at the store last night he picked rice krispy treats, oatmeal cream pies, ice cream cones, fruit loops, blue's clues snacks and cheese and celery. He will tell us an hour after we eat that he is hungry. Well, we will fix that. We are starting strict meal time rules. He didn't like it, but he followed it. We will see how it goes.
He went with Papa excuse me Paw Paw today, so I am getting a little down time. Well, not really seeing as Logan has no desire to sleep today. His little eye is just nasty with goop. He will have to go to the eye doctor is it is still blocked at his next visit. We are doing the drops and massaging it, so hopefully it will fix itself. Taylor took until about 6 months to clear up as well, but Logan likes to stretch things out. If he goes to the doctor they will stick a tube in his tear duct to open it up. OUCH!!!
Derek, Dr. Modak's assistant emailed today with Taylor's scan schedule for June. Taylor will have bone marrow aspirates and biopsies under general anesthesia at Monday, June 28th. He will have an MIBG injection on Tuesday, June 29th and a MIBG scan on Wednesday, June 30th. We have put in a call to Miss Kay Free to arrange air line tickets, so we will see if we will have to go on Saturday or Sunday. We don't need any extra time really, we have seen it all. We do plan to go to the Statue of Liberty again, since she is operating to the full again. We were not allowed to go inside of her last year, so we are looking forward to that. I need to take Taylor to Vulcan, he will think it is her boyfriend:) We will be back home for the 4th of July this year. Thank goodness, we got more fireworks than we bargained for last year!!
Please pray that Taylor who again is snotty and had 2 poops by 11:00 this morning, only has a cold and poor diet and nothing more .Pray that Tuesday's tests show great results with no problems to worry over. Pray that Logan's tear duct will open on its own and not require an eye doctor's help. Pray for Rachel, she needs a miracle! Pray that Morgan and her family have a safe journey back to North Carolina. Pray for all our other NB and cancer friends. BUY A CURING CHILDHOOD CANCER TAG!!!! PASS THE LEMONADE STAND NEWS TO EVERYONE YOU KNOW!!!!
April 29, 2004 Day +393 Day #91 off treatment
Taylor continues to crack me and get in trouble and hurt himself and so on. Let's see where to begin. While I was in the shower I heard a loud boom then a screech. He had been jumping on the bed and fell off and hit the dresser. I had already told him not to do it, but he did it anyway and look where it got him. He hit his head or so he said at the time. Later he told me that his butt crack hurt. Here we go again, you know we played this game in February. He told me he hurt it in my room when he fell, but I looked at it and it is red and getting a touch of diaper rash. He is gonna rip a cheek off one day. He wants you to look at it and he just grabs and pulls, so it is real red now. Little boys!!
Okay, on with the day. He got in trouble for waking up Logan at nap and at bedtime. He was hanging on doors and very whiney every time he didn't get his way. He refuses to take a nap these days and boys does he need one. Guh called and was going to come over, but we almost had to call her and tell her not to due to his behavior. He ate a pretty good dinner of spaghetti noodles and garlic bread. He was eating on the fire place and he kept putting his hands on the hearth and jumping up. I told him 3 times not to do it again. Well, you guessed it, he did it again and his arms gave out and he fell forehead first into the bricks. He has a nice red mark that I am sure will be a nice bruise soon. He cried and cried, but it is so hard to have sympathy when you have asked him not to do it so many times. He went outside to see his friend aka the neighbors dog. He came in and woke up Lo Lo and got in trouble. He is just not listening. We have to say everything 10 times then yell to get him to cooperate. Luckily he will get a hearing test Tuesday, so we will know if he can't hear us or is just ignoring us.
I did forget to tell you that he had a classic kids say the darndest things moment the other night with Guh. They were getting ice cream in cones and she had fixed his and was fixing herself one. She had one scoop in her cone and he said "one more dig in my kind then no more". She had to top it off with my kind to get a full cone.
Thursday has been a good day. We went to Wal-Mart after a 20 minute hunt for Night Night. Then we did our usual Thursday date with daddy. Taylor ate like a pig. He started to break out on his chin and around his mouth while he ate, but I am not sure why, he was not eating anything that he has never had before. We had to get Lo Lo early because Nana has a dentist appointment. It started to rain when we were ready to leave, so I brought Taylor up first and was going to move the car to the drive way so that I didn't leave him in the street by himself. While I was doing that the phone rang and it was Children's Hospital. I did a phone interview for a job with the Sunshine School. That is the team of teachers that teaches school age children while they are at the hospital, so they do not get behind. This particular job would be on the Psychiatric unit. She said she would pass the info on and if they were interested they would call me back. I have no idea if I will really get the job. I want it due to the fact that we are so broke we can't pay attention, but at the same time I am not looking forward to putting the boys in daycare or having to pay for it. I am sure Taylor will hate it. We will cross that bridge when we get to it. The other job opening was for Sat and Sun only from 8-6, I had to say no to that, that would not leave me time to do anything. Again, we will see.
We are home now just killing time before ball practice. I hope it doesn't get rained out. It wouldn't hurt my feelings to bad, but it would Taylor's.
Please pray that Taylor who has barely coughed and not pooped is getting over whatever he has. Pray for Rachel. She really needs prayers now. She needs a miracle!! Pray for all our other friends out there!
April 28, 2004 Day +392 Day #90 off treatment
I have another prayer request. This request comes from one of our faithful prayer warriors. A friend of hers has a little boy named Jayden, who was recently diagnosed with cancer. He had surgery to remove pressure from a tumor on his spinal column and then they discovered he had cancer in his stomach. He will have an MRI soon to see where any other caner may be. Please pray that this family has God's hands wrapped around them as they begin the uphill journey. Pray this little boy beats his cancer.
Please print out the lemonade stand flyer and pass it around, give it to friends and family, hang it up at the office or on your car. (I did!!) Please sign the guestbook!
Yesterday was a little nerve racking for me. I think it all stemmed from a piece of news I got about one of our cancer friends. Both boys were good, but my nerves were a little frazzled. Christi has had a nagging cough for some time now and her latest scans show some new spots in her lungs, more than likely NB cells. Of course that makes me nervous about Taylor's cough that wont go away and the mushy poops that will not stop. He does have yucky green snot to go with it, so it is more than likely sinuses or allergies, but it has been 2 months since his scans and we will be pushing this round back 3 weeks, so it is only natural that I find something to worry about. We do have a CT scan on Tuesday, so luckily I will have answers then and not have to wait to long.
Last night we met Guh for dinner, but that didn't satisfy Taylor, she still had to come to our house to play. He has been cracking me up. He is into watching The Price is Right. That is fine with me since it is better than Dora and Blue's Clues. Anyway, he just screams "come on down" when a new person is called. He guessed prices, but since he doesn't know anything about money he guesses $5 and stuff like that. He has not eaten very good. He is eating all day, but it is junk. I cooked corn dogs and he wouldn't have it. He had chicken nuggets for dinner. Well, I should say we ordered chicken nuggets. He ate a few fries and a little rice, but no chicken. I have been keeping up with all his I&O's again. That is his food and drink intake and what he puts out aka poop and pee! We had to do it at the hospital. I am doing it now so that when we see Berkow he will see how many poops he is having and rather it is diet or something else. He really has slowed down on the number he is having per day, but they are still mushy. He did ask for a bowl of cereal this morning. He ate all of the frosted flakes and milk that I gave him. He asked for more, but did not eat it. He has had about 4 packs of Blue's Clues snacks. He has no more Blue's Clues snacks or rice krispy treats. I am not going to get him more since that is all he eats. Maybe if the junk he likes is not here, he will eat real food.
Taylor played Dr. yesterday. He had gloves and a mask, but he wanted to dig in my mouth. Two trips to the dentist with me and he is now a dentist. Goof ball! I asked him if he was Dr. Watts. He yelled "No, I am Dr. Berpow" We have a Dr. Watts too and I guess he thought I meant he was pretending to be that Dr. rather than his name being Watts. So, I just call him "Berpow" and we are fine.
Logan ate a bowl of cereal yesterday. Yeah!! He finally did it without getting all ticked off. In fact, I couldn't get it in him fast enough. I had put him in his car seat to do it, he hates the high chair. He kept raising that head up and either slamming into the spoon or stuffing his hands in his mouth. He didn't eat much because I didn't make much. I throw away every bowl I make since he always gets mad, so I just make a tiny bit. He ate all that I made then I gave him a bottle since it was almost time to go. He can start on his veggies at 5 months, so we are almost ready to start eating some food. Yeah!! It is so much easier then. I honestly do not remember how it all goes, but I am sure it will all come back to me when we start doing it again.
Pray that Taylor has a cold and nothing more. Pray he has a horrible diet causing his poops and nothing more. Pray for all our friends fighting this and other diseases. Pray that all can beat their disease. Pray that Taylor is NED forever!
April 27, 2004 Day +391 Day #89 off treatment
Today has been another normal, stay at home kind of day. Taylor was up by 8:00 and Logan had been up, he finally drifted back to sleep around 9:00. Taylor played cars most of the morning. He has his rolling suite case full of cars and planes and he is dragging it around and going places. He has only gotten in trouble for being loud when Logan is sleeping or trying to rather.
Jim called me and Taylor immediately starts asking who it is and can he talk. I told him it was Santa Clause and he freaked out on me. He kept asking if he was on the roof. I told him he was in the North Pole working on toys and he was just checking to see if he was being good. I was just playing, but I see a new tactic for when he is bad.
Last night Jim and I met to swap cars again so that I could go to the Mary Kay thing. It was fun again to get out for a while and learn some new stuff for putting on makeup. I learned that I have been doing it wrong all these years. No, not really! It was a lot of fun though. That was the last one, so no more Monday nights out. I will have to become the face for someone else:) I learned a lot about the perks of selling it and it sounds good, but I still just don't think it is for me. Not now anyway.
Taylor was a good boy for daddy and when I got home we had to sit in his room to play. Jim was leaning against the closet door and there is a growth chart there. Taylor ran and got a pencil to mark how tall Jim was. Since he was sitting down, Taylor's mark was higher than his and Taylor thought that was cool! He finally went to bed about 11:00 and Logan decided to wake up. He was wide awake, squealing and talking to us. He ate again and I put him in his bed. He talked to his fish tank for about 20 minutes before drifting off to sleep. He woke up earlier than normal. He always does that. If he eats at 6:00 and goes to bed he will sleep until 6:00, but if we feed him at 10:00 or so he will get up about 4 or 5. Crazy kid! He is getting to wear he is trying to raise up. He will have his head off the pillow or swing and just be hanging out, but still no rolling over. He had a few bites of ice cream the other night and he ate that like a pro, but cereal he spits out. Looks like I've got another sugar lover on my hands.
Well, again that is it, nothing to tell. We like it that way though. Please sign the guestbook. I know you are all reading since the counter is over 100,000!! We love to read what you write to us, so even if you just say "Hi, I was here", we want to hear from you. Please continue to pray that Taylor is cured of the beast that once controlled his body. Pray that he never again faces it. Pray that the poops and congestion goes away and it is just childhood junk and nothing more. Pray for all of our friends that are fighting cancer. Pray for those who have lost their children or other loved ones to cancer or other diseases and pray for those who will be diagnosed today. 43 children are diagnosed with cancer everyday. Please purchase a car tag and come support our lemonade stand and be a part of concurring childhood cancer.
April 26, 2004 Day +390 Day #88 off treatment
Today has been a normal day in the Watts house. Taylor slept until 9:30, I guess he needed to catch up. He has been up by 7 every day this week and a very busy weekend. He has been in a good mood and has not been in trouble all day. He has had a mooshy poop and eating is iffy. He has had about a cup of fruit loops, 1/4 cup of applesauce, a few Pringles, a few potato sticks, 2 packs of fruit snacks and the bread off of a corn dog. He is now playing cars and watching Rug Rats. Logan is doing fine. He has been rather whiney the last day or so, but we can see 2 little white spots in his gums, so maybe it is all teething. He is not bad, he just can't get comfy and wants to be a certain way at certain times. He just had his ears checked, so I am not thinking ear infection. Taylor said he had no boo boos this morning, so I guess last nights complaints were just from being so tired.
We had to change his appointment that he had this Friday for a evaluation of his speech and learning etc. The main lady that does the test got called out of town unexpectedly, so we changed it to May 7th.
That was the only plans we had for the week, so we are free this week. We have nothing to do today other than meet Jim at 5:00 to swap cars. I am going to the Mary Kay meeting again. This is the last one she has to do to be certified, so I guess I am done. We are learning cheeks and lips tonight. I am just no good at this game because I am not one of those people that has to have makeup to leave the house. I don't put it on to go to the store and stuff. Anyway, it is fun to go and see how to do it and what you have been doing wrong all these years.
Guess what we did on this day last year? We bought a potty chair and it sits unused one year later:) Maybe on this date next year I can write that Taylor is potty trained:)
Nurses Day is May 6th. Be kind to a nurse you know and think of what all they have done for us!!
Continue to pray for Taylor to be in remission forever. Pray that he is cured! Pray that this poop snot and cough that will not go away is all just normal stuff and nothing more. Pray for the Lindsey family as they begin a new phase of life without Alexis. Pray that God holds them as they go through this hard time. Pray for the Garners and Bakers as the one year anniversary of their angels leaving us approaches. Pray for all the other families that are still fighting this disease, have lost a loved one or have just been diagnosed.
April 25, 2004 Day +389 Day #87 off treatment
Let me start today by asking for some prayers. Our dear friend Alexis went home to Jesus Saturday night. She was just a few months older than Taylor and was the first person we met in clinic. Please pray for Blake and Alice and their boys as they start the next phase of their journey. Please visit them at www.caringbridge.org/al/alexislindsey Also say prayers for Rachel. Her WBC had risen a lot, but has started to drop and she has fever. Pray that she can keep her counts stable and fight off any infections. www.weloverachel.com
Today has been a long day for us. We went to the early service at church. It was the first service in out new sanctuary. It was beautiful. Taylor went to children's church today with Ca Ca. He is not old enough. Children age 3-9 or so are invited, but he is just not old enough to do the things they did. He would never make it. We are going to let him stay in the nursery with Logan next time. It may take a few Sunday's of one of us going with him, but I think he will like it there. He is pretty excited that Coach Shotts' granny is the nursery teacher.
After church we came home and changed and got ready to go see Thomas. We dropped Logan off at Guh's and went next door for a surprise. Mr. Bill had gotten Taylor a play 18-wheeler that does all kinds of cool things. Taylor acted shy there, but once we got home with it he went crazy with it. He took it to Paw-Paw's and played with it for the longest time. He held it in the car and it is huge. He loves that the lights come on when you crank it. Thanks Bill and Shirl!!
We went to lunch then headed to Calera for the Thomas events. Taylor had a blast. He got a Percy tattoo on his leg and bought a ball with all the trains on it. They didn't have any shirts in his size, but he didn't really care. He wanted an umbrella, but we said no, he wants an umbrella every where we go. I think he has about 4, how many could a 3 year old need? We went in some old train cars that were left like they were back then. It was interesting to see how the men lived on the trains. We went to the petting zoo, but we did a walk by, Taylor never wants to touch the animals. We looked at a fire truck and went to the corn maze. I think that was his favorite. It was only 1 bail hi, so he could see us and we did not have to go with him. Yes, you read that right, he did it all by himself. He followed some big kids the first time and didn't get stuck in any dead ends. He came out so excited that he ran back in at full blast. He did it several times and then decided to do it backwards. He did get turned around then, but laughed it off, he never got upset. He was laughing so hard, it was so great to see. There were kids running all over the place in the maze and he did fine. Maybe we are getting some where. By then it was time to line up to go on the train ride. We stood in line a while for an open air car. We got a nice look at the golf course and we all know Taylor loved that. He thought it was pretty cool to see the men play and to see there golf carts. However, I bet the golfers were not as impressed with the train going by every 30 minutes! After the train ride we left, we were all tired. Taylor somehow stayed awake on the way back to Guh's.
Once at Guh's Taylor wanted to ride his 4 wheeler. He is a dare devil and makes us all nervous. He had a fit to ride in the front yard, who knows why. He ran into the trailer hitch on my car and cut up the front of is 4 wheeler. He hit the edge of the sidewalk that is uneven and about flipped off. He rides standing, hanging off the side and many more crazy positions. Evil Canevil better look out!! After about an hour or more of playing there we left and headed to Gam-maw Paw-Paw's.
Taylor did pretty good at dinner. He ate a good bit of corn and several ice cream cones. Now don't get to thinking that he ate a lot of ice cream. He only wanted a thin, flat layer of ice cream over the cone and he kept filling up the same cone. He is having more and more pain from cold things on his teeth, so we had to melt the ice cream a little. He got carried a way at one point and had a cone full of milk. He got ticked off, but what else is new. After a lot of playing and eating he decided he was hungry. He and Gam-maw made oatmeal and he ate every bit of it. Way to go Taylor!! On the way home from there he got out his chicken he brought in the car from lunch and ate that. I wont think about how he probably shouldn't have had that piece of chicken rather I will focus on the fact that he ate, period!!
On the way home Taylor started to complain that he had a boo boo on his diaper. We discovered that he had accidentally been put in one of Logan's size 2 diapers. He didn't like it, but we got a good laugh out of it. We were home about 10 minutes when Taylor wanted another ice cream cone. Hey, at least he is getting some sort of milk product. He ate a little chocolate ice cream and a cone. He played a few minutes then told me he was ready for bed. He went right down, I know he is tired.
He is still having runny poops and I am still worried. However, I have to consider the fact that he eats a horrible diet, so until we see Dr. Berkow on the 4th I am not going to stress over it. He complained of his knee hurting, but before I could get upset it had moved to his foot. I think he is just tired and cramping.
Pray that Taylor is just having poops from his diet and nothing more. Pray that he is having cramps and growing pains and nothing more. Pray that Logan's fussiness is due to the 2 teeth trying to pop in:) Pray for the Lindsey family and for Rachel. Pray for all the children and families that fight cancer every day. Pray for the NB fighters, Levi, Morgan, Harrison, Brandon, John, Chris, Cam, Lexi, Sarah, Jay, Christi, Hannah, Carter, Alex, Trey and the list goes on....
April 24, 2004 Day +388 Day #86 off treatment
Friday was a good day. We hung out and did the same thing we do every Friday. I cleaned up and Taylor ran in and out or the house. He was playing on the back deck porch as he calls it. Both boys were very good and I was able to get a good bit done. I still have tons of laundry, but that seems to never go away. We met Gam-maw at Bob Sykes then went to the grocery store. Taylor and Logan went home to Gam Maw's for a little bit then she brought them home.
We have been back into the "normal" life lately, but Saturday we really got to feel like a "normal" family. We went to Taylor's ball game which he did good. He hit really well although he seemed to have forgotten where to run. He ran towards second rather than first. We got him back on track and he actually RAN the bases. He went willingly to the outfield however today he not only played in the dirt he drank tea and ate beef jerky while out there. He even crossed home plate with his cup. I guess you do what you gotta' to get him to play. He loved his snack today, an ice cream cone. We had to stand in the parking lot until he finished it.
After the game we headed to non other than Wal-mart, this time it was for Taylor. We bought him a swimming pool. He has not swam since he was 16 months old. He picked out a float, a ring and a beach ball to put in the pool. We moved the patio table and put his pool under the gazebo on the deck. He was in it before the water even got going good. He had a blast. He would not get off the float because the water was so cold. The pool came with a cover, so hopefully next time he swims it will be warmer. He fell off the float once and went under water. We got a picture of his ticked off face, but he got over it quick and never tried to get out. He threw the ball and let Ca Ca pull him around like he was skiing. It was so much fun to watch him. Logan sat in his exersaucer out on the deck. He loved it. Taylor splashed him once and he flinched, but then he laughed. If the water will warm up we will take Logan for a dip.
When Logan had had enough we went in and put him down for a nap and Jim and Taylor moved to the front yard to wash the cars. Taylor played in the sprinkler for a minute, but decided that he wanted to play with his riding toys more, so he gave the hose pipe to daddy to use for the cars. He did not like running around in his wet swim trunks. He walked spread eagle until he finally took them off and ran around in just a swim diaper. That was hilarious!! He eventually let me put on some clothes and he carried on with his outside toys. I was doing the dishes when I saw him dragging his trailer and wheel barrel up the front steps. Now I see how he could have fallen down them last week. I don't think I told you all that. He fell down the front steps and has a nice cut all the way from his knee to his ankle. It is not to a really bad cut, but he needs 2 huge band aids on it and with all that it does look bad. Jim went to drive the car around to dry it off and Taylor went with him and fell asleep, so he got on the interstate and drove a bit until he was good enough asleep to move to his bed.
When Taylor woke up we went to the Galleria. He wanted to ride the "round and round". He ate fair, but we had to sink to bribery. We paid him a dollar for every chicken nugget he ate. He knew the more dollars the more he rode. He ate 4, however he only rode the carrousel twice. We were there until 9:00 although we didn't know it was that late. Both boys slept good!!
April 23, 2004 Day +387 Day #85 off treatment
This has not been a bad week, but it is always nice to see Friday even for us stay at home people. Yesterday was a long one. We were up at 7:00, all of us! Taylor and I left a little after 9:00 and were going to Wal-mart, but I was afraid I didn't have time, so I went on to the dentist. I was way early, but he went ahead and took me back. We were out of there by 10:40. He was even done earlier than that because we had to potty and visit the treasure chest before we left. Taylor was an angel. He colored in a book for a while and ate some real sugary snacks. Dr. Moulton said he was just going to over look that going on in his office:) I kept hearing the garbage can and I thought he was kicking it, but he was throwing away all his paper. I guess he is listening to me even though he doesn't do things at home. I can't complain as long as he uses his manners out in public. He got real quiet and I felt bad thinking he was down there bored to death. When I was done and was able to look at him I saw the reason he was so quiet. He was sound asleep in the floor. He had night night on his bad as a pillow and he was on his tummy. He had his feet up on the garbage can since he didn't have much room. I felt bad, but he was so good. I woke him up and he was in rare form ready to go to the treasure chest.
After the dentist we went to Wal-mart and got a few necessities and a surprise for the big guy as he calls himself. He picked a "huntin' club" hat and a football shaped water bottle to take to baseball practice:) After Wal-mart we went to eat lunch which was interesting after 6 Novocain shots!! Rick of Rick and Bubba and Speedy were there. I was going to go talk to them about the lemonade stand, but when we went in to do it we saw that they were in a meeting of some sort. I didn't figure me interrupting a meeting would be of any help to my plea. In the meantime, the table behind me was about to get it. They better be glad they left when they did or I would have caused a scene!! They were talking about Rick being there and how they should go up to him and tell him how much they loved him, they were being sarcastic, they were not fans. Anyway, one girl said that she should go tell them how his humor got her through a rocky marriage and they all laughed. The other girl, who was laughing so hard she could hardly breathe, said "No, I should go up to him crying and tell him how inspirational he was to my child with cancer". It might have been funny to them and obviously it was since they were hysterical, but where I was sitting it was not funny at all!!! People should really think before they speak, you never know what the person beside you has going on in their lives. Rick and Bubba are very funny guys and love a great since of humor, but I bet they wouldn't have seen the humor in that either.
We then headed to Lifesouth, but due to Minor High School having a record breaking blood drive (nearly 400 pints) she had been called away. We will have to meet later on. Be sure to check out the lemonade link though, Jim fixed it up, it is snazzy!!
Then we came home and went outside for a while. We called Nana and arranged to have Logan stay while we went to practice and to the Olive Garden with Guh. Logan was a good boy with no complaints today after his yucky day yesterday. That's my boy!!
Taylor did great at practice for most of it. He got a little restless after about 45 minutes. At about 7:00 we left and it was still going on. It was getting to long and Taylor wasn't participating anyway. His game this Saturday will be at 9:00, so if you would like to come make that note!! After practice we went to the Olive Garden with Guh. Taylor ate great and even tried a new pie. They were out of chocolate lasagna, so he had chocolate mouse pie. He liked it, but not like the chocolate lasagna.
Rachel had 2200 wbc yesterday. She is still critical, but stable and making daily improvements. Keep those prayers coming!! Pray that Taylor can get all the snot out and keep it out. We are so tired of blowing his nose and all the coughing. Poor guy! Pray that he does well with immunization. Pray that Morgan has an uneventful week in NYC next week.
April 22, 2004 Day +386 Day #84 off treatment
Well, it is not exactly Thursday yet, but I know that tomorrow will be another busy day, so I am giving you an early update!! How kind of me:) Kidding! I forgot to tell you what was special about April 21, 2003. We brought Taylor home from the Stem Cell Unit that day. He was day +19. Look how far we have come in 366 days!!
Our day was good yesterday. We went to Formosa to eat with daddy. Taylor expressed his disgust with the decision all the way there. He wanted Sa Sa aka salad from Olive Garden. Well, once we got there and he got rice he was fine. He loves rice. He had my white rice and Jim's rice. Surprisingly he picked out all the sweet peas and ate them separately. He wouldn't try the chips or chicken. Oh well, one thing at a time. He ate a pretty good bit and he did have cereal for breakfast, so he did good. After the lunch we went to the Doctor. Taylor fell apart when daddy had to go, he had stayed as long as he could and he just had to go. Taylor fell apart. He cried and cried. Logan flipped out when he got his shots, so I was left there with 2 screaming younguns!!
Logan weighed in at 14# 12.5 ounces. He was 25 inches long. He is up from 11# 9.5 ounces. and 23 1/2 inches in February. His head circumference was 16.5 inches up from 15 3/4 inches. I did not get the percentiles, but he was in the 50th for weight and 75 for height last time, I am sure he is still in about the same spot. He checked out fine. He said that they would soon be changing the textbooks on the age for rolling over, babies just don't do it as early now. It is like Nana said, kids now have swings, walkers, bouncy seats etc. where as years ago there was a bed or a pallet on the floor. He said not to worry, he will do it when he is ready. He gave us a feeding schedule, but said not to worry if he doesn't take to it, he will when ready. He gave us 4 cans of liquid formula, cool, that is 4 I don't have to buy!! Thanks Dr. P!!!
After the check up he sent in his mean old nurse to give 4 shots. In February Logan didn't even flinch and Taylor always did fine as a baby and as a big boy on GM, so I did not expect the reaction I got. As soon as she stuck the first one in his little eyes got as big as quarters and he started to scream and he didn't quit. I held him, rocked him, bounced him, gave him a passy, a bottle you name it I gave it. Poor baby was pissed off!! He screamed while I paid, while I made an appointment and while we drove. I went to Nana's and passed him off to her. He finally calmed down and went to sleep. I felt awful. He woke up and ate at about 4:30 and then we met Jim and we swapped cars. He was still asleep when I got home and seemed to be feeling okay. Nana has him today, so I guess he is doing okay. We sent the Tylenol just in case. He is not going to have to experience that again until June 14th when he returns for his 6 month check up.
Dr. Petelos said to get with Dr. Berkow and be 100% sure there are no tests needed before he gives him his shots. He is doing to well now to make him sick from a shot. We did not make an appointment as of yet. Jim had Meredith re-fax the forms and to fax one to Dr. P as well. We will discuss it with Dr. B on May 4th in great detail then go from there. Still no word on the harvest idea. He looked in Taylor's ears again to be sure there was no lingering infection and there is not. He also listened to his chest since he is still coughing, but said it was clear. He said to try the Zyrtec that he had last spring to see if that helps. He was fine until he went fishing and now he is all yucky again, so we are fairly certain it is allergies.
I met Nicole and her mom for dinner at Jim N Nicks. Yum Yum!! We had a great time gossiping and catching up. We laughed until we cried all night. She really needs to move back to B'ham. Hint Hint Brian!! It was a great time out, but I missed my guys. I came home to Taylor standing in the door with his eyes covered, I guess he thought he was hiding. He helped me fold some clothes or roll them. He likes to roll everything up then pile it up. He does do well with wash rags, so that is his area, he even puts them away.
As for today. I have to be at the dentist at 10:00. So far no one has called to reschedule, so maybe I will actually get it done this time. I have been trying to get there since March. After the dentist we will be going to Lifesouth to meet with them about the lemonade stand. I will fill you in on all that we learn. Jim made a flyer that is really cute that we will be sure to get to anyone that wants to post them. Don't forget that if you are unable to attend you can mail in a donation to the Taylor Watts Fund C/o Xi Beta Xi. The address is on his "how to help" page. Be sure to have your address somewhere we can see it because we will send you a receipt. All donations are tax deductible to the fullest extent allowed by law.
Please pray that Taylor has finished his cancer walk. Pray he is able to be NED forever. Pray that he will not have problems from his immunizations. I do not want to hurt him by trying to help him. Pray that Logan does not react to his shots either. Pray for all our friends that fight this fight with us. Pray for Morgan who is having some excitement in NYC. She decided to get a 105 temp and go inpatient. www.caringbridge.org/nc/morganbarnes
April 21, 2004 Day +385 Day #83 off treatment
Not to much to tell you right now, but I know I will not get another chance to update today. I will update on the doctor visit tomorrow.
We are heading to the Doctor at 2:00 and I just found out that the appointment is in the main building not the well baby center like I requested. I am not so upset that we are not in the well baby clinic, but rather at how slow the main building is. The well baby clinic we are in and out in 30 minutes. I will probably have to sit in the waiting room an hour in the main building. Oh well. I am having dinner with Nicole, my old co worker at the daycare. It looks as though I may have to meet Jim at work and hand off the kids if the doctor runs too long. We may hang out at Nana's rather than come all the way home and then me go right back to Hoover. I know Logan will get some shots, but not sure how many. I told Taylor that Logan would get shots and he made an ugly face and said "in Ny Yuke it hurts real bad". He knows he no longer needs those, he will be real mad when he starts his immunizations again. I never got the fax from our docs here, so I will just talk with Petelos about it today and schedule a date to start and have Meredith fax it all to him later. No big deal.
We are doing nothing. Logan and Taylor are bathed. Logan is dressed and trying to nap, but will not. Taylor is not dressed since he is still eating rice krispy treats. Paw paw brought him some real jerky, but he will not eat it. He might later, you never know with him. I got a lesson this morning. I told him that Papa called and he was bringing him a prize. He got all over me that he doesn't say Papa he says Paw Paw. Excuse me!!
Well, I need to finish getting everyone ready so that we can meet Ca Ca for a quick lunch before the Doctor
April 20, 2004 Day +384 Day #82 off treatment
It is only 12:00 and it has been an interesting day. Taylor and Logan both slept until 9:45, but could I sleep? NO!! Of course not, the one day they both sleep late, I am wide eyed and bushy tailed ready for the day to begin. Oh well!! However, they both woke up screaming. Do siblings dream in unison? I had to get them both up and calmed down. I got Taylor some tea and beef jerky, what a breakfast, and turned on cartoons and he was good. I got Logan a bottle and he was good. After Logan ate he was laying in the floor talking and screeching as he often does. Taylor was playing and goofing off. Taylor has a tin bank that he keeps golf balls in. The golf balls were all over the place, but the can was laying on its side above Logan's head. Logan was swinging his passy and it slipped and flew right into the bank. Taylor saw it all and immediately got tickled. Logan got tickled at Taylor. It was so funny to see them both belly laughing at each other. Taylor thinks Logan did it on purpose and keeps telling him to do it again. I will die if it happens again:)
Taylor has typed some and has his car and hook all set up and is pulling his vacuum cleaner around the house. We have our vacuums out because wasps or dirt daubers, I can't tell the difference and I am not messing with either, are in the house. I will not try to kill it I just suck em' up. After we sucked him up, we watched him fly around in the dirt chamber. It needs to be dumped, but not until he is good and dead and forgotten about how mad he is that I sucked him up.
Ca Ca got to take both boys to the grocery store last night. I am sure they had great fun. I went to another Mary Kay thing. I learned how to put on eye makeup that suites my eye type. Guess what? I've been doing it wrong all my life, oops!! It was fun to get out and learn something new. They are still trying to get me to sale it, but that just is not something I am interested in. I do enjoy meeting all the ladies though.
Tomorrow we will go to see Dr. Petelos. He will see Logan at 2:00. I will be bringing the re-immunization info that Dr. Sande and Meredith got together for him and we will schedule his shots. The plan that Dr. Sande recommended was very similar it just called for more shots at once so that it didn't take as long to get it done. The MSKCC plan took 8 months to get it all done.
Please pray that Taylor is NED forever. Pray that he can get over this cough and soon. Pray for all our friends in this battle. Pray for Morgan who is in NYC for round 8 of 3F8. Pray for Rachel who is still critical.
April 19, 2004 Day +383 Day #81 off treatment
Good Monday to you all! Isn't it beautiful today? Do you know what you were doing this time last year? I do. April 19, 2003 was a Saturday. Guh, Mary and I spent the day cleaning EVERY toy in the playroom to get it ready for Taylor's return home from the stem cell unit. We had a disaster. We pulled everything out and threw it in my room and down the hall. We cloroxed every book, toy, block etc. and put it all back in the room neat and organized. How long do you think it stayed that way? I am sure not long. After they left I started on the basement. I cleaned and moved things all over the yard and then piled it all back in and looked no different from when I started, but I had a good yard sale pile going. However, I just didn't feel right, something was different. I took off towards CVS to buy a pregnancy test. Well, they didn't sale them, so I went to Winn-Dixie who sold them, but they were locked up in the pharmacy which was closed. So, I went to Wal-mart of the Eve of Easter and it was covered up with people buying last minute items. I ran in and grabbed the test and stood in line forever just hoping that I didn't see anyone that I knew. I was not embarrassed to buy one or be pregnant, I just didn't want people to know and go spreading the word before we knew for sure. Anyway, all was fine until I got to the cashier. She scanned it and told me my total then began to tell me how agonizing it was for her to wait the 5 minutes for the test to work as she waved it in the air for the world to see. I wanted to tell her to shut-up, but I politely smiled and took my package and ran. I came home and took it. It was positive. What? No way, how? I took the free one that came in the box too. It was positive. What? I couldn't believe it. I was so excited and scared all at once. I called Jim who was staying with the Taylor at the hospital and told him and I think we both just sat there in stunned silence. We didn't tell anyone until May 1st when I went to the Dr. and had it all confirmed. That was a tuff few weeks because ya'll all know I love to tell it all. Anyway, one year ago today as we prepared to bring home one miracle child we found out we were fixing to prepare to bring another miracle into the world. Here we are a year later with Logan Riley.
Now for April 19, 2004. It is a beautiful day outside and Taylor took advantage of that. He went fishing in the boat with Pippy and Pop. It made me laugh this time when he said it correctly because last time he went fishing he called it pishin' in the boot. He has changed so much in the last year. He had a slight melt down okay a major melt down before he left. We could not find his NY hat and he wanted that one and only that one. He finally calmed down and left. He had a blast, he didn't want to leave. He got home around 5:15. I asked him if he caught the big fish or the little one and he said the little one, so he still has lots to learn on the art of fishing. Pippy and Pop said he was very good and only got upset when he ran out of tea. By the way, he is now loving his statue of liberty hat that he had to wear in place of his Yankees hat. Go figure!!
We received the re-immunization schedule from NYC last week and Jim faxed it to Meredith. She is going to get with Dr. Sande from the stem cell unit and go over her schedule and NYC's and come up with a plan for Taylor's schedule. It was all Greek to us. It was all about PHA's and titers and blah, blah. blah. He had an immune function test in December and it was normal. Dr. Modak said he was fine to start his shots, but the paper said "IF" this is normal etc. , so I am going to let the doc handle it and let me know how to go about it all. Taylor was due for scans the first week of June. However, we will be in Disney World that week. The second week is the week of our lemonade stand and Jim also needs to work a few weeks before leaving again for NYC. So, we have discussed it with all the Dr.'s and we will scan the week of June 28th, 3 weeks late. I am sure I will be a nervous wreck!!! Look out Meredith and Heather!!! That will alter his scan schedule in that we will no longer due it in March, June, Sept., and Dec., but he will continue on his 3 month schedule for some time. He will still get his CT scan and a ton of others on May 4th, but will wait on the MIBG and bone marrows. We are all calm now, so hopefully he will not pull any tricks in June to freak us out. We are also discussing harvesting stem cells. Dr. Modak said it would be hard to get them at this point, but we are going to try. We pray and are faithful in that he will not need them, but should the need ever arises we would like to have some in stock. Most of the clinical trials call for you to have some on hand before you can start the treatment. Meredith is working with Dr. Sande on that as well.
Over the weekend we received the tickets to Kenny Chesney and the party afterwards. If you see the headlines the next day "Crazy woman attacks country star" that was me! We also got tickets to ride Thomas the train on Sunday. Thanks Ghen Ghen and Bob!!
April 18, 2004 Day +382 Day #80 off treatment
How do you like our new look on the front page?? Cool, huh? Be sure to look often as it is new picture every time you open it, well there are 7 new ones anyway. There is also a new link above and on the front page that will take you to the lemonade stand info. I got to meet Jane this weekend. She is the Earth Angel who is helping us to organize our week long event. Taylor and I will be meeting with her and several others Thursday to go over ideas. I will update the page then with anything new. Please print the stand news off and share it with as many people as possible. I will let you know as new info is added to that page.
For those of you who did not get to give blood last weekend there will be a blood drive at Pleasant Hill United Methodist Church this Thursday, April 22nd from
1:00-7:00pm. The Church is right off of Exit 1 of I-459 in McCalla. Please support the Red Cross in this event! You will feel so good knowing you just saved a life!
Today was a party day for us. We started the day by going to Church. Taylor did very good again, but still no Children's Church. Next week I am going to go with him to see if we can ease him into it. We showed him the room they have it in and he was all excited about it, so maybe if we do it slow he will get into it and enjoy it. He still sat very quietly. He even sang! We were singing and we could hear him behind us joining in. It was cute!
After church we came home and got the car loaded up for our day. We went to Lori's wedding shower first. Taylor had fun as did I since I got to see Lori who was in my wedding and I haven't seen her in about 3 years. I also saw several friends from high school. I would like to have stayed longer to see who all I could see, but we had another party to go to. I am sure I will see them all at the wedding. We left there and headed to nurse Rhonda's baby shower. Taylor really got wild there. He ate about a sleeve of Ritz crackers and the bootie icing off of several cakes. He saw some nurses that he has had, so it was another reunion for us. I like seeing them on this kind of day rather than a chemo or blood day. Congrats to Rhonda and Dueff on their new addition that is coming soon and to Lori and Brad on their upcoming wedding!
After all our partying was done we headed to Guh's. Logan and I hung out inside while Taylor and Guh did yard work. We finally got home around 8:30. Taylor begged for Don Don's so we got some on the way home. He ate 4 1/2 nuggets before falling asleep. He woke up in the house and finished it and some fries. Hopefully his lack of eating is just due to a 3 year old stage that will pass soon.
April 17, 2004 Day +381 Day #79 off treatment
Another fun filled day at the ballpark!! We were all up and at em' early today. We got ready and went to the ballpark for Taylor's game. He was a bit disappointed to see that the big boys were done with their season. He has no concept of the fact that they are in high school and it doesn't last forever. He got over it fast though. He did great today with his hitting. Coach Curt cut off some of the length of the tee and all the kids did great with it. Taylor was always hitting the tee rather than the ball, so now it is perfect for him. I had dug out duty, meaning I got to sit in the dug out and get the kids that are batting, on deck and in the hole ready to go as well as pass out hats and gloves when those were needed. Well, we could see right quick that my presence was not going to work. Taylor just wanted to be held. I gave the job to Papa and I manned the camera in the outfield. I am sure I will hear all about my non-photography skills once the video is viewed by all, but that is okay. I am a good sport! Taylor of course played in the dirt rather than watch what was going on, but again, that is okay. I panned across the field at one point and about 4 of the kids were laying or sitting in the dirt.
It was a rather interesting day for us in that we met a nice man who filled us with hope. The team that we played has a set of triplets on it, 2 boys and a girl. The boys sat on the girl in the womb and she was not able to kick and develop her legs muscles, so she uses a walker to get around, but with work and therapy she can overcome this. I should also mention that she is one of the best hitters on the team and she does it one handed. Way to go Hope!! Anyway, Jim and a family member of hers, we think it is her dad, but could be wrong. Anyway, he was telling Jim that he had Medulloblastoma (brain tumor) at 13 and relapsed at 24. He had about the same odds of survival as Taylor and look at him now. He had a similar story as far as treatments and drugs used. He had been at Children's and Duke. He filled us with hope that one day we will be helping Taylor coach his kids. We are so glad we met him and are pulling for him and Hope!!
After the game we all loaded up and headed to the Olive Garden and watched Taylor eat almost a whole bowl of salad by himself. He polished off some nuggets later in the evening as well. The boys came back home while us girls went shopping. Of course it was Logan and Taylor that ended up with all the loot.
Please pray for all our friends that battle this disease everyday. Pray that Taylor never again has to fight it!! Pray that one day I am updating on Taylor's kids having ballgames. Pray that all scans and tests that are coming up are clean and clear!!
April 16, 2004 Day +380 Day #78 off treatment
Good morning! Hope you are all well this nice Friday. We are well. Taylor and Logan thought it would be fun to get up before 8:00 and now Logan is asleep and Taylor is watching Dora. He will not eat anything but beef jerky, but he is eating so we will let it go. We have no plans today other than to go outside and wash clothes or Taylor will play ball tomorrow in the nude!! Taylor plays at 11:30 tomorrow on field 5 if anyone wants to come out and watch. It is always a good show, they are so cute!
As for the rest of the weekend, no plans. I am sure we will be outside in the 80 degree weather. Thomas the tank engine is in Calera, but it is so expensive, I doubt we will be going. We have not mentioned it to him, so he will never know.
I talked to Dr. Fellers yesterday. We have to be at Children's hospital at 6:00AM on May 26th for Taylor's surgery. He will be groggy and nauseous the day of surgery, but should be 100% by the next day. Any pain will be at the gum line from where they worked on him, so Disney here we come!! We will be going at the same time as a fellow Alabamian that is also treated at Children's. Courtney is a lot older than Taylor, but it will be nice to see some fellow sweet tea drinkers there!! We are all very excited. Taylor has been watching his Disney World movie and deciding what he wants to ride and I am afraid his 3 feet will not be enough to get him on a lot of what he wants or think he wants to ride.
Well, that is it, no more to tell. I am sure it will be late Sunday before this ever gets updated again, but no news is good news! Have a great weekend and enjoy this weather!!!
Pray that Taylor gets over this cold soon and is NED forever!!! Pray for Rachel as she continues to fight for her life. Pray for Deanna's family as her 1 year as an angel anniversary comes up on us. Pray for all the children that have, do and will fight cancer.
April 15, 2004 Day +379 Day #77 off treatment
Today was a fun day for us. Taylor and I went to Tuscaloosa and shopped at the mall there. It was nice to get a change of pace. He ate pretty good at lunch, but wanted ice cream, so we went to Sonic and he had some chocolate ice cream, We went by Pop's for a little while and then home. He didn't have ball practice until 5:45, so that gave him a little more time to play outside before having to leave. I went to get Lo-Lo and let Ca Ca go to practice. Taylor did good for the first 30 minutes or so then he was off on the football field and in Papa's truck. He just gets bored easily. He was still in La La land when Curt called huddle up and there he went straight to Curt's lap.
We went to dinner with Papa and Gam-maw. He didn't eat very much at all, but he did find a new food. Don't laugh, I know he is goofy. He is loving teriyaki beef jerky. Yuck! He has eaten nearly a whole bag by himself. Once home he helped Ca Ca plant 2 trees and he was filthy!! He came in and took a bath and I gave him some Benadryl and put him to bed. He was gone in about 2 minutes. Logan was out pretty fast himself.
As for the rest of our Wednesday. Taylor ate great at the Olive Garden and then went to Guh's to play. She brought him home later that afternoon. He went outside to play again that afternoon for a little while before coming in to watch American Idol and get in trouble!! He got a letter from Mayor Clayton from Give Kids the World that invited him to their magical place. We will all get a world pass that is good for a year to any theme parks and the such. So, we will be burning up the road this summer to different places. Fun!!
Again, their is just not much going on. Just normal life around here and like it that way.
April 14, 2004 Day +378 Day #76 off treatment
We have lots of news! Dr. Fellers called today and Taylor's surgery was moved up to May 26th. He will have his front 4 teeth capped white and the rest silver. He called to verify that we could be there that day and to tell me to set up a physical and APASS appointment for Taylor. We also got the news that Taylor's wish trip will be May 29 -June 4th. He is so excited. He will still have his port, but that is no big deal really. Unlike our last trip it will not require syringes of saline and heparin to flush it every night. He will have just used it for surgery, so he will not need to be flushed for another 6-8 weeks. I do have to call Dr. Fellers tomorrow to be sure that it will be okay for him to go only 3 days after his surgery or if he will be in pain. I hate to swap the dates on him after he worked so hard to get us in sooner, but I do not want Taylor to be sick or in pain during his trip. I will let you know how it turns out. Hopefully, he will not have to change his surgery date. He will arrive home just in time for his trophy day at the ball park. He will get his first trophy. All of our trophies are packed up, so I guess he has never seen one, but I know he will be proud of it.
I have left Dr. Fellers a message, but according to the person who answered the phone Taylor should be fine by the 29th to take his trip with no problems.
Taylor took a nap from 2-5 yesterday and woke up horrible. After about 30 minutes of crying and fussing he was fine. He ate a plate of spaghetti noodles, a few of his kind of noodles and a piece of garlic bread and who knows how many rice krispy treats. I suppose I will have to stop buying them if that is all he is going to eat. I went to tan and to buy Logan some formula. Taylor called crying because his cake from the party is stale (it is still on the counter b/c the box is too big for the garbage cans) and he wanted cake. He wanted me to buy a new one. I bought a small cake, but he was upset that it wasn't a big one. I had to tell him the bakery lady was gone home, she was, so I didn't lie! He did eat 2 pieces of cake not icing, so I guess he did want it. He also told me last night when he was supposed to be getting in bed that he had to go to the living room and see what the weather man said. I tell him that at noon so that I can change the channel from cartoons to watch the news. He is too smart!!
I gave him son benadryl last night and conked him out. He is still coughing, but it is productive now and he is still snotty, but it is clear. He is still having runny poops, I have changed 3 so far today and it is 10:45. I am still concerned, but I will continue to wait it out. We are getting ready to meet Ca Ca for lunch. Taylor has been begging for "Oligad" aka Olive Garden. Since he is not eating we will go there and see if we can get him to chow down on his favorite foods.
Please pray that Taylor does just have a bug and it will go away soon. Pray that he never has to face relapse or treatment again. Pray he is NED forever. Pray for all our friends that fight this battle with us.
April 13, 2004 Day +377 Day #75 off treatment
Please pray for Carter and his family. His bone biopsy results are back and it is neuroblastoma in his leg. www.caringbridge.org/pa/carterfinger
Today started off great. I got to sleep until 9:30!! Logan went back to sleep in his swing and Taylor played on my bed. It was great. We went to the living room and played for a while and then I went to the kitchen to do dishes. I heard Logan talking and playing, but I didn't know what he was all excited about. I peeked in to see and Taylor was on a pillow right next to him talking and showing him things. He is so sweet, but you have to catch him at it!
Taylor has been looking at his celery. We let him put the leafy parts into some food coloring and watch it change colors. He looks periodically at how they are changing. He likes the blue and green, but the red killed the celery, it is red, but dead! He thinks it is funny. That was our little science experiment for the week. Jim laughed at me, but that is what he would be doing if he were in daycare, so why not? He also has 5 caterpillars in cocoons to watch. These are the ones he collected at his party last week. He spilt the bucket several times, so now that they are doing their magic, we have put it where he can not reach it and we help him look at it. I have no idea what to do, if anything or how long it will take, so who knows if we will get butterflies or not.
Jim finally got the Eater Bunny pictures. We worked hard for those things. Today has been like any other. The house is a disaster, but Taylor's room is such a mess that I can not describe it. Every time he comes out he cries that he stepped on something and hurt his foot. It was clean as could be until the Easter Bunny came and left a mess or better yet left things for Taylor to throw all over the place. Oh well, that is okay.
Again, there is not much to report. We are all fine. Taylor still has his cough and snotty nose and still has his runny diapers. Yes, it scares me to death, but I have to deal with it. It isn't fair that these cancer kids or parents have to face regular childhood illness too, they are what scare us as they so closely resemble symptoms of their cancers. No, I have not called Meredith and have no plans too. I will just have to wait it out unless I see a valid reason to call her. See, my trip to Dr. Austin was productive.
Please pray that Taylor can get over the bug he has. Pray that he can be cancer free forever. Pray that Logan never endures anything like this. Pray for all our friends dealing with this cancer and others.
April 12, 2004 Day +376 Day #74 off treatment
I know you are all ready to shoot me and I am sorry. We have been so busy the last few days that we haven't had time to update. We are all fine though!!
Taylor has decided that he likes celery, I don't know that he will ever gain weight eating it, but at least he has moved on to a new favorite and it is not full of sugar. Logan nearly rolled over back to front. He was in the playroom looking around and made it to his side trying to follow Taylor. We are getting close.
Today we went to Guh's house and played outside and ate lunch on her screened porch. Taylor helped Mrs. Shirl dig 6 holes to plant mums in. He loved it. He also loaded up some sand from his sand box to bring home and put in his basketball goal, it keeps running away. He had to haul it on his 4 wheeler because it was too heavy for Guh to carry. We went to Guh's work to visit, but Taylor fell asleep while Guh was carrying him. We left after a short time since he didn't want to visit and since his 30 pounds of dead weight was weighing Guh down. He, of course, woke up in the car and never shut up. He even burped and didn't miss a beat. We drove all the way to Target, again, to get our Easter Bunny pictures only for them to be closed for lunch. We will try yet again! We went back to Guh's to play some more. When it close to "off time" we headed to Ca Ca's work where we visited until closing time. We then swapped cars.
Ca ca and the boys went home and I met Mary to go to a Mary Kay thing. She is trying to get certified to sell it and has to have a "face" every Monday to work with and I am "the face". It was fun to learn new techniques or things I never knew and it is a different topic every week, so it should be a fun little course, but no, I shall not be selling it. I can get you in contact with her though, if you need anything. I just got home around 8:45 and Taylor scared me to death. He was in the playroom playing by himself. I came into the playroom from the garage and didn't see him sitting in the mound of toys and when he said hi about jumped out of my skin.
Today another family member got a name. Taylor had been calling Mary, May May. Today he kept asking to go see "Ahme" we thought he was saying Amy or Amen, but finally we figured out he was trying to say aunt Mary.
Well, that is all that is new here, okay so it was 4 days of new! We have been normal, on the go people and just didn't have time to sit and type. We are back to the slow pace again, so be sure to check in often. We thank you all so much for all your support along the way. Please continue to pray for Taylor's health and continued NED status. Pray for all our friends that fight this fight every day. Praise God for the miracles we have seen worked in our lives and that of others. He is good, all the time.
April 11, 2004 Day +375 Day #73 off treatment
We started the day around 7:30 when Taylor and Logan opened their Easter baskets that the Easter bunny left. Taylor got all kinds of goodies and trinkets to play with. He readily put it all down and got dressed in his "angel" outfit. He was in all white (scary) and looked like and angel. We went to church to church this morning for the first time in a long time. Logan went to the nursery and of course didn't care at all. Taylor went to church with us. He went to the Children's minute with Ca Ca and Mackenzie. Jim had to tell him to "huddle up" like Coach Curt does to get him to get into the circle with the kids. I am surprised he didn't shove someone out of his way so he could sit in the ladies lap. Mackenzie tried to take him to children's church with her, but he wouldn't go. Maybe soon he will venture out. It was so very nice to be back at church and what better than Easter Sunday to go back. So many familiar faces and new ones too, all of whom have been praying for Taylor all this time. It was nice for them to be able to meet him as well. He did very good in church until the very end and he didn't get loud he just decided to break all his crayons. Who knows why, but he was quiet so I didn't question it.
After church we headed over to Guh's house for our annual Easter dinner and egg hunt. We hid 177 eggs and found all but 3. Taylor (money finder) did it again. He found the grand prize egg and got $20. He had a lot of candy, but daddy lost it all in a game of poker:) That's okay, his rotten teeth didn't chocolate anyway. Taylor was very ruff and wild today, but hey last Easter we didn't know what our future held as we prepared for stem cell transplant. We are thankful for everyday, good or bad!
We got back home around 4:30 and both boys went to sleep. I tried, but then both boys woke up, oh well! We just hung around the house the rest of the night. We got in the bed and snuggled up to watch the Sand Lot. Taylor didn't make it through the entire movie, but liked what he saw, so we will have to try it again.
April 10, 2004 Day +374 Day #72 off treatment
Another very busy day! I had to be up and at Mary's by 9:00 to leave my car to have Andy fix the air and change the oil. Mama met me there and then we headed to the ballpark. It was very windy and dark when we got there and we were afraid the day was going to be a washout, but luckily it all blew over and got very sunny and hot. I had trouble in the blood mobile. I had been chewing gum and it made my mouth hot. You have to have a temp under 99 to give, but mine was 100. I had to spit out my gum and wait for it to cool down. It finally did, so I gave my blood and then headed off to watch Taylor throw the first pitch at the high school game. He had been telling me all day that he didn't want to do it, so we were afraid he was going to cause a scene, but he didn't. He loved being out on the filed with the big guys and coach "paughn". He waltzed out to the pitchers mound and threw that ball like a pro. After the game he had all of the team sign the ball he threw and got some photos. The hind catchers grandmother is in a chapter of Gam maw's sorority and they took some photos and will have it put in the Western Star, so be on the lookout!! He went down to his game after that, but it was the last inning, so he never got to bat. He didn't care. Guh had to miss the festivities because she took Logan home when it looked like it was going to storm and was left with no way to get him back up there. We got it all on video though, so she will get to see it. Thanks Guh for watching Logan. Taylor didn't want to go home after his game, so he hung around and helped us pass out the flyers on the car tags and on the blood drive. When I left I had had several people stop me to talk about the tags, so hopefully they will all go buy one. At 2:00 there had been 16 people give blood and we were told that 20 was about average for that type of drive. They stayed until 3pm, so maybe we got more. I will be sure to contact John and see how many people actually gave.
Thank you so much to the John and all the Red Cross employees that came out on a Saturday. Thank you to Dan and Diedre for coming out and setting up a table for the car tags. It was great to see you all and we appreciate you being apart of Taylor's day!! Thank you to all the people who donated blood or tried to anyway and for those who bought a car tag. We really appreciate it.
Lana, one of Taylor's Camp SAM councilors came to see him play ball. She brought the boys some Easter goodies. It was wonderful to see her, thank you for all the goodies and for driving such a long ways to visit with us. Lana is a cancer survivor herself, so she is wonderful to talk with as she understand every aspect of what he is dealing with. She has been cancer free for 6 years, Praise God! Pray she is cancer free forever!
After the ball park festivities we went to get my car only to discover it needs yet another part, uurg! We are working on getting that and we will venture back to Andy's for another tune up day. Taylor played in the ditch again and showed Ca Ca how cool it is. After begging him to leave, we headed for home. He played outside until it started to rain and then he moved into the garage. Papa and Ca Ca sat in chairs while he rode his bike and played in the garage. He loved it. I cleaned up some while he was occupied. When he came up we dyed our Easter eggs. He had fun, but it was short and sweet. He didn't care for all the artsy aspects of it like Jim and I did. We were going to make Easter cookies, you know, the ones that you mix as you tell the story of Jesus' crucifixion then tape the oven up and go to bed. When you wake up they are hollow, like the tomb. However, I put all the eggs in to boil before reading the ingredients for the cookies, so we did not have 3 eggs for our cookies. Oh well, next year. Taylor would not have understood anyway at this age.
I was finally able to get Taylor in bed and do the baskets. He left celery for the Easter Bunny. we do not like carrots and I knew the bag would go to waste. Anyway, he opened the fire place doors. He asked if the bunny would come down the chimney like Ho Ho did. I suppose that he does, so we opened the doors and left the celery on the hearth.
April 9, 2004 Day +373 Day #71 off treatment
TGIF!! It has been a long week. Today Guh was off and she came for a visit. She got to see the real Taylor, she was even getting irritable with him. He is sick and not feeling well, so he is even worse. We fought tooth and nail for a bath then shoes. Once he was finally dressed we went to eat where he ate fair and was pretty good. We had to go to Wal-mart and Taylor was acting up and as soon as he was quiet, Logan started. I forgot half of what I needed. We went home then and everyone took a nap, but me and I went to the tanning bed.
Papa came over to play which allowed Guh to sneak out. Taylor went out to play for a while before we headed to a birthday party. Brianna is the big one today!! Happy birthday Brianna! Shy Taylor didn't come, he brought his alternate personality. Taylor was all over the place and loud as could be. He had a blast. He went to Jackie's and fed her horses and patted it. He liked that part best, I think. He helped Brianna open all her gifts. He did very good with that many people and very few of them he really knew.
Chris, Temperance and Christian came over after the party. Temperance and I took the boys to Wal mart. They did fine together. We took Taylor's new big boy car seat in her car. He liked having Christian to talk to. I hope that means he and Logan will get along in the back seat later! Taylor finally went to bed around 11:30 or so.
Not to much to report, but that is always a good thing.
April 8, 2004 Day +372 Day #70 off treatment
Call the Red Cross at 1-888-905-3344 to make an appointment to direct donate A- plts. for Rachel Green.
April 8, 2003 is a day that will be burned into my memory for the rest of my life. It was a bad one for Taylor and I up on the stem cell unit. He felt awful, he was at the point that his counts were bottomed out. He was in pain, just started morphine, vomiting from mouth care and mucous. I was on edge, scared, tense, angry etc... We were only day +6 from transplant and we had so far to go on an unknown path. Gam maw and Paw Paw came to the hospital and let me escape, I went to good ole 4 tower and sat and complained. Before I knew it I had a dinner invitation from my dear friend Tina. It was her birthday, Happy birthday Tina!!! I headed for the showers and got all spiffed up for my girls night out. We had such a nice evening and it was much needed. I was able to go back fresh. Good thing since he started his Ableset and no, I still do not know how to say nor spell it. It was the mother of all fungal meds for his ear and it was a nasty one to take. He had a horrible reaction to the 2 hour infusion that did not start until nearly 10:00. That was very scary since he never reacted to things. God was there again, waiting in the wings to show me it would be okay. He sent me Rookie, a nurse from 4 tower, who was filling in up there that night and was able to calm both me and Taylor. I loved the nurses on stem cell, but we were not there long enough to get as close to them as 4 tower, so when I was scared I wanted those 4 tower guys and gals. God put one right in front of me at just the right time. He continued on that med for some time and always reacted, but we knew how to manage it.
Although today is much different that one year ago, Taylor still felt the need to throw in a little excitement. He went to bed feeling very bad last night. He could not sleep from all the coughing. I snuck in and gave him some Triaminic, he cringed, but never woke up. He soon seemed to be doing better. Around 12:30 he wandered into our room and was burning up. I took his temp and it was at that magical, Oncology number of 101.5. I did not call since I had no intentions of sitting in the ER all night and I did not give him Tylenol since I had just given his the other med. He woke up again at 2:45 and was still at 101.5, so I gave him Tylenol anyway. He was very talkative and seemed to be fine, just hot. He fell back asleep and Jim moved him this morning when Logan woke up. He woke up when Jim left, so he came back to my bed. He was fever free at this point, but since he hit the magic number I knew we were in for a clinic visit to draw cultures. As long as he has a port he will always draw cultures if he runs fever. Any foreign object could cause infection.
So, off we were to clinic 5. He was 36 inches tall, 30 pounds and 98.2 degrees. Figures! They drew cultures then asked us to sit in the lab waiting room just in case he was contagious. So, we did for aver an hour and I went back to the clinic waiting room so they knew we were still there. We waited there another hour and we finally got a room after one of the nurses came out and saw Taylor trying to sleep in the stroller and me stretched across 3 chairs. We were so board!! We sat in the room about 30 more minutes and finally Dr. Watts came in. We have not seen Dr. Watts since February of last year. It was a nice visit. Taylor's counts were perfect and he just has some viral thing that will have to run its course. We do not expect to see anything grow from the cultures, but they will continue to watch them for 3 days and let us know if anything shows up. He was not given any meds. He does have a nasty ulcer on his "goat" which has been hurting him "real bad". Just for those who didn't get it goat is throat. Both ears look fine, but the tubes are just sitting in the canal doing nothing, but wont fall out. Maybe they will soon. He has had a few really loose stools and has not eaten real good, but other than that is fine. He was not happy with Kelly or Ruth for pulling the tegadrems off. He told me tonight, "it not hurt to put it in (the needle) or come out (the needle), but it hurt REAL bad to take ban ban (band aid) off". I asked him if he cried which he didn't and he said "no, well, a bitty bitty bit I want to". Poor baby shouldn't have to go through all that. I told him I needed to get his Emla this morning when I was getting him ready and he said "it's in the kitchen, get a band aid too". He knows the routine!!
We got a little of our shopping done, but not all. We just ran out of time. Our Easter Bunny pictures were not in and we went all the way to Target to get them. Turns out the girl put the wrong due date, they will be in the 14th after Easter. I don't know why because it wasn't like I was late, it was a planned day for the bunny to be there, the only day it was there. Oh well!! We will try again next week. We should be getting his ball pictures this weekend too. Those should be real pretty!
Well, I am sorry this is so very late, but it has been busy since we had ball practice too. He did pretty good. He hit great!!! He got a little board in the outfield, but all of them did today. Please pray that nothing grows in the cultures and whatever this is goes away and doesn't cause any trouble. Pray he can remain caner free forever. Pray for all our friends that fight cancer everyday!!
DON'T FORGET THE BLOOD DRIVE AND TAG SIGN UP ON SATURDAY!!!!
April 7, 2004 Day +371 Day #69 off treatment
Here are the answers....
If you give blood on Saturday, how many days must you wait until you can give again? You must wait 56 days. It will take that long for your body to replenish what was taken out. That means you will all be eligible again by the week of the lemonade stand!!
If you were to give platelets how many days would you need to wait to donate platelets again? You must wait 3 days.
Is there a type U blood? yes, it is very rare, but it does exist. It just means that the person must have u blood transfusions and that will be very hard to find.
How long does it take to give platelets? 2 hours and it is very cold!
What are platelets for? They are what clot and make bleeding stop. That is why it was so dangerous for Tornado Taylor to have a low plt. count.
How many did you get right? I have another favor to ask. Rachel Green, a 16 year old local girl who has relapsed AML is in PICU at Children's Hospital. She has pneumonia and is to sick for her transplant. She is in desperate need for prayers and A- platelets. That is a rare type, so if you are A- please call the Red Cross at 1-888-905-3344 and make an appointment to direct donate some platelets for her. The apheresis process is about 2 hours long, so you can not do this Saturday at the blood drive, you will have to go to the Red Cross. It is not painful, just cold and long. You may visit Rachel at www.weloverachel.com
As for us, we are all fine, sorta. We had some tress cut down yesterday and we sat on the deck to watch and now both of my allergy ridden children are sneezing and yucky. Taylor was fine until bed and he coughed so bad he couldn't sleep. He is all stopped up and has a horrible croopy cough, I assume it is allergies since he was fine until bed time. He keeps telling me his throat hurts, but I can not convince him that drinking will help, so we are not getting anywhere. He did eat 2 bowls of Honeycomb cereal though. Logan is cooing and gooing and eating fine. He still has a goopy eye, but not near as bad and he is sneezing. I know it is allergies for him. Poor baby, he wasn't out there 10 minutes and I could see his eyes watering and puffing up. I hope he grows out of that. I gave Taylor a neb treatment with Albuterol, so hopefully that will help him out a little. About 2 minutes into the treatment he coughed up a big green thing, so I guess it was loosening it up. I know you probably didn't need to know that, but that is the excitement for the day and trust me, he thought it was funny.
Taylor loved watching the tree guys. They cut 3 trees. One was over our shed and the neighbors fence so that did it with a rope and boom truck. He thought that was awesome. The one in the front yard was out in the open so they just cut and let it fall. He thought that was pretty cool. we were in the house watching now. He jumped about 3 feet when it hit the ground with a huge caboom, but laughed. He went out on the swing set and rode his gator while Pop and Ca Ca cut them up and piled them up to take it off later or use for fire wood.
He finally came in about 7:30. He ate a fair dinner and was in bed by 9:15. You could tell he was sleepy. He came into our room around 9:45 and by 9:46 he was asleep. Logan went to bed around 9:00 too. Pretty late for him. He had been playing. He is getting those legs and arms up in the air at tummy time, he looks like he is flying. He still can't roll over on his own, but he is getting there. He sat in the chair a long time and played with a light up stacker. He loves it. He has been sitting in the high chair too and slapping at toys. We tried cereal again, and he still didn't care to much for it. He goes to Nana's tomorrow and he will probably come home loving it.
Please pray for Taylor and that is cold or allergies clears up soon. Pray that he is able to remain NED forever. Pray that Morgan's BM's are clear. Pray that Carter gets good news from his bone biopsy. Pray for Rachel Green and all our other friends still fighting the battle.
April 6, 2004 Day +370 Day #68 off treatment
Since we are gearing up for a blood drive, I thought we would test your knowledge of blood a little? You can email your answers if you want to know if you are right or you can wait and I will post the answers later.
If you give blood on Saturday, how many days must you wait until you can give again?
If you were to give platelets how many days would you need to wait to donate platelets again?
Is there a type U blood?
How long does it take to give platelets?
What are platelets for?
That is all, I will have to search for more. Lets see what you all know? Now for the update...
Yesterday did not get any more exciting than expected. Taylor had a great day. He pooped bright green from all the cake he has had, but other than that he was perfect. He didn't get into any trouble. Okay, there was a little excitement when he dropped the bug box and all the "snakes" as he calls them fell out. Luckily they were all clunked together and I was able to scoop them up without touching them. Oh, I would have died. Again, I tell you this with no shame:)
As for Logan, he did have a little excitement. He still hates to be on his tummy, but if I tuck his arms under him he can get to his side. He has rolled several times with help, so maybe he will soon do it on his own. He also had a little rice cereal today. Yes, it has been in his bottle for months, but today we tried it with a spoon. He did not much care for it. However, I tried it when he was ready to eat and he just wanted to suck on the spoon and when nothing came out he was ticked off. I fed him a bottle and tried again. He did fair. He actually swallowed a few bites by accident, but most of it was spit back out while he made a sucking motion with his mouth. Our peds both here and Taylor's ped when we lived in Auburn did not recommend starting solids until 4 months and preferred you wait until 6. I did wait with Taylor and he had the worse time transitioning, he did not know how to deal with anything other than liquid. Thinking back on it, he probably had trouble controlling his tongue. He does not and that is why he is so drooly and has trouble saying some words. Anyway, I was waiting patiently until he was 4 months to start, but I gave it a try today. It looks as though he had a better grasp of it than Taylor did, but he still was pretty angry with me. We will keep trying.
Taylor has been pretty funny. He watched his baseball video over and over, I am so tired of seeing it. He has tried jumping on the couch and bed. I got on to him and he told me he needed to bounce and we took his bouncy thing (moonwalk) away. Sneaky little booger!! He also told me that the next time he bought a lawn mower he was going to buy green. I am not sure what that was about. We have a green lawn mower now and his gator is green. He saw a commercial with a guy cutting grass and he informed me of his plans.
I also talked with Dr. Austin again. She is the psychologist I spoke with last month and she is now going to run some tests to see if Taylor is where he should be with language and colors and that sort of thing. He had this done by her when he was 2 and was right on track with exception to his speech. He is now talking a blue streak, but has trouble with articulation. According to his speech teacher from the ARC, he will not qualify for anything in that area, but this is a different test and a different group and so it could be different. Since he is older than 3, we will have to pay for the test and any assistance he may need. He will get the half-a-day long testing done on Friday, April 30th. That is also a few days before his May 4th CT, urine, hearing and ECHO tests, so it will probably be good for me to see her too.
Again, not much to report today. We will go outside in a little while if it warms up enough for Logan. I hate keeping Taylor in when it is so nice, but Logan is already so wind chapped and all. We will see.
Please pray that Taylor is able to remain in remission forever. Pray for Carter who will have a bone biopsy tomorrow morning. Praise God for Morgan's good results, but keep praying her bone marrows are clear. Pray for all our friends who are battling relapse and other cancers.
April 5, 2004 Day +369 Day #67 off treatment
Today we have no plans other than to rest from our busy weekend. Taylor is playing and watching TV and Logan is asleep after his bottle and cleaning his goopy eye. Everyone is fine and dandy. Taylor is in a good mood, but getting frustrated with a piece of tape he is playing with that keeps folding up. Logan's cheeks look better and nose too. His eye is still yuck. He is eating and sleeping fine, so I guess he is okay after his weekend outside.
We really have nothing all week. No appointments or things to have to buy, so we will be hanging out at home until our Thursday outing. I will keep you all posted on our boring week that we wouldn't trade for the world. I will also keep you up to date on the Lemonade stand as it comes along.
Please pray that Taylor is done with his journey in cancer other than to help others. Pray that all our friends can beat it too. Pray that we have many more anniversary parties. Pray for all our friends that are fighting childhood cancer.
April 4, 2004 Day +368 Day #66 off treatment
What a day we had!! We started it early again. Way to early due to the time change. Ca Ca cut grass, sorry to the neighbors that it was so early. The moonwalk was delivered at about 9:00. Taylor went out to jump for a while before coming in and getting a bath and getting dressed. He went with me to get the cake and boy was it big. I was having a real good time trying to balance it on the edge of the buggy and push it around with Taylor in it. We managed to get out of Foodworld and home without hurting the cake.
We came home and started setting everything up. Thank you to all of you who came out to help Taylor celebrate his big day and those who did call us to say if you were coming or not. We had a blast. Taylor even jumped in the moonwalk with the kids. They played baseball and blew bubbles and played on the swing set. I know about 9 kids who are sure to sleep good tonight. Everyone left messages for Taylor and got to look at pictures of him along the way. He sure does look different now than he did then. It is amazing to look at the difference. He looked sick compared to other kids, but to us he just looked like Taylor, but to look back now that he is healthy, he really did look sick then. He about killed himself getting to coach Curt when he got here. He immediately went to get his baseball and bat. He talked about his girlfriend Macey coming all day and is still talking about her now. Mackenzie left her coat and he is very concerned about it. He is keeping a close eye on it, so that it gets back to her safely. Christian liked bubbles, well let me re phrase that, he liked his hands in the bubble solution. By the end of the day the kids were collecting caterpillars and they got about 10 of them in a bug box. Taylor has them in the house and just let it be known that if they get out, I will run out screaming with no shame.
Guh stayed way past her bed time and kept the boys and Jim and I got away for dinner. We had some scrumptious Red Lobster. Yum Yum!! Taylor was still full blast when we got home. He finally conked out about 10:30. He had come into our room to say he was scared and Jim put him back in his room and he was gone before Jim got out the door.
Logan has had enough. He is going to be another allergy kid in the house. He has a goopy eye and a runny nose. His little cheeks are red and wind chapped. poor baby. He has had a pretty busy weekend himself.
Please pray that Taylor remains in remission and we get to celebrate again next year. Pray that Morgan gets an all clear report on scans soon. Pray for Carter and his family. Pray for Chris, Jay, Madison, Alex, Trey, John, Brandon, Christi, Levi, Morgan, Carter, Tyler, Jaydon, Sophia and many others that fight NB and other cancers everyday.
April 3, 2004 Day +367 Day #65 off treatment
Saturday was a busy day for the Watts'. We began the day bright and early as usual. Ca Ca was outside by 7:00 and working in the yard. Taylor and I were up and getting everyone ready to head to the ballpark. Taylor did very well at his game today. He hit both times and "walked" the bases. He is not going to run, period! He caught or chased one ball and threw it to third rather than first even though he was trying for first:) The next time they were out on the field he was in the dirt and didn't even have a glove. I think 2 innings is a bit much for his attention span. After he crossed home plate he stayed with coach Curt behind the plate. He loves Curt. He is so excited that he is coming to his house tomorrow. He never ate breakfast, so he was starving. I had chicken, but it had cheese on it and he wouldn't have it. I bought him a chicken finger basket and he didn't touch it.
After the game we came back home. I did more laundry and Taylor played outside with Jim while he did more yard work. I called him in around 3 and we got ready for the Easter Egg hunt that Maw Maw's sorority had. Leave it to my little money lover to find all the money eggs. He did share his money with the others. He had a green cupcake and he was looking like a leprechaun when he was done. He had a blast playing with May May (Macey) whom he tells me is his girlfriend.
After the egg hunt we all and I do mean all of us, went to dinner. Logan was in hog heaven with his aunt Kathy and Uncle Rusty taking care of him. No, they are not really his aunt and uncle just really good friends that seem to have a nack with babies. Logan had a long day too. He went to the game and the egg hunt and it was cold and windy. He did very well staying all covered up. Taylor was going to spend the night with Maw Maw, but by the time we ate, he was so tired that he was getting whiney and upset. He only wanted to go if I spent the night too. He fell asleep on the way home so we just kept him at home. Both boys were out for the night by 8:00.
Once home we did nothing. We were both in bed by 10:00. It was a long and busy day.
In the midst of all we did, we did get several pieces of good news. A very special friend put us in contact with her special friend at Life South. Life South has teamed with the American Cancer Society and Buffalo Rock to do the entire lemonade stand. They are also going to it June 7-12th. It will be at Life South on the corner of Oxmoor Road and Lakeshore. Since it is a week long event for us, we have decided to donate the weekday totals to Alabama, to places such as Camp SAM, Children's Hospital, Magic Moments and the National Childhood Cancer Society. That is not strictly Alabama, but the NCCF has been so wonderful to us in helping to get us to and from NYC. We will donate the June 12th, the actual date of the Alex's lemonade stand, to the Alex's lemonade stand fund in Pennsylvania. I will post times for you all as soon as I know. Hey. you can all stop and give blood again too, I do believe those who give on April 10 will be eligible again by then. I will certainly find out!! Thank you a million times over to Jane, Peggy, Cindy and Debbie for all your help. I counted up the days and if you give on April 10th your next eligible day is June 7th, how appropriate!
The other good news is really only good to me! I have tickets to the Kenny Chesney concert in July. I also have tickets to the WZZK party after the show. We do not know if Kenny Chesney will be at the party or not, but you better believe if he is, I will get to him:) Wow, he is a nice looking thing!
Please pray for Carter. It looks as though his neuroblastoma has returned in his leg. He will have a bone biopsy this week to know for sure. Please visit him at www.caringbridge.org/pa/carterfinger
Pray that Taylor is able to remain cancer free forever. Pray that all our friends can stay NED or reach NED status and stay. Pray all our money raised will help find the cure.
April 2, 2004 Day +366 Day #64 off treatment
The blood drive will be 10-3 on Saturday, April 10th at McAdory ball park.
1 year post transplant!!!!! Yahoo!!!! Can you believe it? I think today is more exciting that one year ago. It was all rather anti-climatic last year. It was just a 30 minute drip of blood, life saving blood mind you, but still a very simple, routine process. He slept through it and we struggled to breathe through the stench of creamed corn. However, today, one year later, he is a walking miracle. He is full of energy and life and no signs of cancer are in his body. Praise God for the miracles he has performed in his little body and the blessings he has bestowed upon this family. We thank all of you who have followed this journey and laughed and cried with us. We couldn't have done it without you. The days that followed were definitely filled with tears due to frustrations. Luckily we did not encounter very many problems. He did have blood pressure issues and then a reaction to a med, but other than that he really breezed through it rather nicely and quickly. I remember thinking that the 30 days of "lock down" would be a lifetime and now here it is a full year later and he has a normal immune system, on no meds, no special diet, can return to normal activities including school and church. Easter Sunday will be our first trip back to church.
Taylor wants his Ca Ca home and real bad. I told him it was his special day and we would go out to eat tonight anywhere he wanted and get the rest of his party stuff, but he is demanding it be now. He just doesn't understand that Ca Ca has to work. He is not to upset though, he is playing. Logan is squealing like a little pig and laughing. We again have all been up since 7:30, I hate when they do that:) We are spending the day cleaning up and making last minute lists of party goods we need to get. Taylor is excited and we are sad the weather is going to cool down so much that day. Oh well, they will be running around and playing and be to busy to worry about the temperature.
That is really all we have to say today. I am sure Taylor will prove to be entertaining today as always, but I will fill you all in tomorrow. We will be busy busy this weekend. Saturday we have an 11:30 ballgame and a 4:00 Easter Egg Hunt. Ca Ca has to do yard work and I have to clean since I am sure whatever I do today will be messed up again by tonight. Sunday we have Taylor's transplant party, so if you don't see an update for a few days it is because we are on the go. We are normal again!!
Please pray that we have many more transplant anniversary parties. Pray he is NED forever. Pray for Morgan and Carter's scans. Pray for my friend Amanda who is having surgery today. Happy Anniversary to her and Dale too!! Love you guys!
April 1, 2004 Day +365 Day #63 off treatment
Hello there! We had a very busy day today, so we apologize for the late update. Logan and Jim left to head towards Nana's and Taylor woke up at about 7:30. I went ahead and got ready since we knew how much we had to get done. We were driving out of the driveway by 8:30. Our first stop was McAdory High school where we hung up some blood drive posters. Taylor got to meet another one of Jim's old coaches. He was looking the part too, it was practice day so Taylor was decked out in full baseball cleats included. We then headed towards Bessemer Academy and Dunnam's to leave some posters. I went to all of those schools so it was a little walk down memory lane.
The dentists office called and had to reschedule my fillings AGAIN! I was waiting on Jim to yell April fools, but he didn't. It was annoying to reschedule, but it did clear our day some. We went to Target to pick up our family photos and we shopped a while to kill time. We left there and Taylor fell asleep, so I just parked and read a magazine for a while then headed down town to the Sparks Center for his dental appointment. That was a waist of time. All we did was fill out paper work and leave. I had an appointment for an exam, but since it is the same Doctors that are at Children's they didn't look again. It was fine that they didn't bother him, but that was a long drive just to fill out a form. We have tentatively set the date of June 9th to do his teeth. We will get all the paper work in about a month to get him a physical and go through APAS which is Children's surgery prescreening. It is the most horrible process. It is about 2 hours of sitting around and then they take his vitals and fill out the same paperwork you already filled out and then they will do it all again the next day at surgery time. UUGH! The real crazy thing is that his surgery will be at Children's. We just had to fill out the form at the Sparks Center to get a new chart, but now everything goes to Children's. Whatever!! He has recommended to only cap the front top four. He said the bottom gets to much wear and tear and will crack and require repair and he grinds his teeth so that is a real reason not to. He also said not to do the canine teeth due to the curve in it as it will crack as well. So as of now it looks like we will do the top 4 in white and all the others in silver. I have not decided about the bottom 4, we have a month to decide and let him know so he can order the right number of white caps.
After that little pit stop we headed to Angel Hair and got mine and Taylor's hair cut. He was getting very wooly! He looks much better now. By then it was time for ball practice. It was not a very pleasant experience. He got to bat first and was happy doing that even though he never hit one ball. He soon went to the outfield, but discovered that he had taken his glove out to play over the weekend and didn't put it back. We borrowed a glove, but he didn't like it so it went down hill from there. He did chase one ball and throw it to 1st base, but then it was over. He laid on the ground and cried and kicked until I just walked off. He then really fell apart and made a nice show for all to see. It was so cold that they were all losing interest fast. We didn't practice long. He got his snack and we were off. He did manage to go to the circle after practice and as usual he was in coach Curt's lap. He has pretended to be coach Curt. He loves ball, but he acts up so at practice. Oh well, he will get it.
Guh came to see him yesterday. She stayed here with the boys and Jim and I went to eat. We all went to bed early. Taylor went back and forth between his bed and our bed, but ended up falling asleep in our room. He stayed there all night.
Please pray for Taylor and that he may be NED forever!! Pray for Morgan as she gets her scans and for Carter as he and his family wait on the results of yesterdays MRI. Pray it is all clear. Pray for all those fighting relapse and those newly diagnosed. Pray that all those in remission remain there.
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