News Archives:

1st Quarter 2003 January 1, 2003-March 31, 2003  

Quick Jump: 1st Quarter 20003: January February March

 

March 31, 2003   Day -2

 

5:50pm... We have had a wonderful day. Taylor ate his lunch that consisted of ravioli and turnip greens. No, he didn't eat the turnip greens. He didn't even let them stay on the tray. We had to throw those away before we could eat anything. Dinner was pizza and rolls. He ate the rolls, but the pizza was to brown for his royalties taste. Mrs. Kimberly, the child life assistant, came by and brought him some play dough and a magna doodle. They made a duck together. Taylor was very impressed with the glue stick. We have glued everything in sight. He has been so funny today. He took a great 3 hour nap with a bed full of stuff. He woke me up by strumming his markers across the bars of the crib. It was like he was saying "let me out of jail. " He also wanted to make hearts today while we were doing art. We made a big blue heart that he has had to listen to with the stethoscope.

 

Dr. Sande came in and looked him over. She ordered another respiratory panel test which is where they swab the back of the nose. He hated it. She said he looked amazing, no mouth sores, ear is clearing up and he is eating somewhat. He does not look like someone who just had 4 days of lethal chemotherapy. Praise God that he is doing so well and pray it continues. He has been weaned off of the dopamine. It will not be a shock if he has to go back on it while he sleeps, but he has done fine without it this afternoon.

 

Taylor's counts:

Platelets: 70,000

PCV: 30.9

HGB: 10.7

RBC: 3.59

WBC: 2.34

 

Taylor had a pretty good night. He did the routine 12:45 vomit and then went back to sleep. He didn't vomit much but it got on his shirt sleeve and he kept rubbing everything, so by the time it was over he had clean everything. He went back to sleep pretty quick as did I and we got up at 7am only to get clean everything again due to a leaky diaper. His breakfast came and he ate the half piece of toast on the tray and we ordered 2 biscuits. He ate one of them and lost interest. He would have eaten them, but he was interrupted to change a diaper and weigh. I hate that up here they do it on their schedule sleeping or eating doesn't matter. I know things are different up here and things have to get done, but you would think he could at least finish eating. They left his dopamine at .6 all night. He did fine throughout the night at that number. It has now been dropped to .5 and it will go down throughout the day. If it needs to go up when he sleeps it will.

 

Remember Nathan and his family. There was no change overnight. Remember Austin as he schedules surgery again, pray that he stays fever free and has his surgery. Pray for Morgan and her family as they fly to New York today to learn more about the antibody treatment. It is the same thing Taylor will get either here or New York. Please continue to pray for Taylor and that this is successful and he never has to face this disease again. He has a very green, runny nose today. Pray it clears up before counts drop and it doesn't turn into anything serious. The ear is looking better, but not healed continue to pray for that as well.

 

March 30, 2003   Day -3

 

 10:15pm... Mommy arrived back at the hospital around 5pm and I found Taylor playing cars in a tent made over the bed. He was glad to see me, but only because I had Wal-Mart bags. He thinks anything from there is going to be for him. Does that make him spoiled? His chemo finished up around 2:00 this afternoon. He is only on fluids and Dopamine now. He is being weaned off the Dopamine at .2mls per hour. He has been asleep since 8:30 and is staying in an okay range. It dipped to 87/17 and the doctor came in and took it again and it was fine. He didn't up the Dopamine yet. Hopefully he wont have to and he will be off that by about 1am. We did his mouth care. Even though he hates every minute of it he holds his mouth open for us. He is getting the hang of the spitting, now we just need him to get it in the bucket or chuck. I was wearing most of it after it was all over. We are on our rest days now. We are just on the countdown for day 0, transplant day. 

 

Please remember Taylor in your prayers. We need prayers that this is the last chemo he will ever endure and his transplant is successful and uncomplicated. Please remember Nathan Flemming in your prayers tonight. He is still in the hospital on a ventilator. He is not doing well. Check out his sight and offer his family encouragement. www.caringbridge.com/tx/nathan

 

Taylor's counts:

Platelets: 98

PCV: 32.7

HGB: 11.3

RBC: 3.77

WBC: 4.11

We battled low blood pressure throughout the night. Taylor woke up this morning and is in somewhat of a good mood. He let me do his mouthwash, despite a little resistance. He was so big about it, and it made him throw up a little bit. Right after we finished mouth care, they brought in breakfast. He actually started to eat a little bit! He ate all of his biscuit, and about half of a yogurt cup. I went ahead and had two more biscuits ordered since he was in the mood. He just finished (8:05AM) the insides of those two. Of course, he will not eat the top and bottom, but at least he is eating. I promised him some peet peet for lunch because he did so well with his mouth care. Mommy, if you are reading this, he also needs some more sweet tea. His last blood pressure reading was at 114/44, so the low blood pressure is just a problem related with deep sleep and the relaxation of his blood vessels while he is sleeping. This is a common side effect of the etoposide. He is on the last little bit of the chemotherapy and should be off by 10:00AM. He is currently leaned back in the bed, looking out the window at Cooper Green, our lovely view!

 

March 29, 2003   Day -4

 

Taylor hasn't gotten sick anymore today. He took a really good nap today. His counts are posted below. His blood pressure is also staying in a comfortable range for me. I will be glad when this chemotherapy has ended, and Taylor gets a few days of rest. He really needs it. Jeanna and Pa Pa stopped by today to visit with

Taylor. Taylor enjoyed the visit. Soon, he will be restricted to visitors, which will be very hard for him. He also got some new books today that he really enjoys playing with, and some room decorations.

 

Today, daddy and mommy went to the Ridge Park Red Cross to donate platelets. Daddy will be a direct donor for Taylor, but mommy is CMV positive, so she can not donate directly to Taylor, but someone out there still needs platelets. Unfortunately, mommy's iron was a little low, so she was unable to donate today. I was able to give platelets, and it was quite an experience. The room is very very cold. It only took about 2 hours total, and about 30 minutes of that was filling out the usual paperwork. Taylor has been sick three times already this morning, and it is not even noon yet. They have given him some more anti nausea medicine to hopefully keep him from getting sick. He is on the last day of his conditioning chemotherapy, receiving carboplatin and etoposide today, that should be through around 9am in the morning. Taylor is not eating much at all and is in a little bad mood right now, but it is understandable considering what he has been through.

 

Taylor's Counts:

Platelets: 116

PCV: 32.8

HGB: 11.3

RBC: 3.78

WBC: 4.93

 

March 28, 2003   Day -5

 

Taylor was in a fairly good and played for a little bit. He is only getting sick when the anti-nausea medicine starts to wear off. We would like to thank Gram for helping Kim this week during the day. It gave Kim a much needed break during the day, and help with throw up when the need was there. G-mom got to the hospital around 3pm and stayed the night. He slept pretty good during the night, and did not get sick one time. The have finally regulated his blood pressure  somewhat, but the bottom number still dips down into the 20's while he is sleeping.

 

March 27, 2003   Day -6

 

What a night!!  We had a running joke all day yesterday that Taylor was saving all the vomiting for late in the night when I was alone. Well, he did. At 1:00 in the morning he decided to it was time. They gave him some Zofran and that was it. Thank goodness. I couldn't sleep for fear he would do it and me sleep through it, so I stayed up until 3:00. Finally I was convinced he was fine. He slept until about 8:15. He wanted no part of breakfast today. In fact he ate very little all day. He has played well today. He feels okay I guess. He didn't do as well with the mouth care today. I have forced him because we hear autogolous transplants are worse on the mouth. He threw up a little while we did mouth care. I don't know if it makes him sick or if he is gagging due to the toothette in his mouth. We spent some time learning the things he can and can not eat now. For example, he can't have anything from a community serving line, or fountain drink machines. All ice and tea have to be made with distilled, reverse osmosis treated bottled water. No raw fruit or veggies and the list goes on. He threw up in his food tray at dinner. I guess that is proof enough that hospital food is yuck:) His blood pressure continues to be a problem when he is asleep. We had to wake him from his nap to see if it would come back up. I don't know what that means for tonight, I mean he has to sleep. They have one other med to try and if that doesn't work he will go to PICU. This is a know effect of the etoposide and it is expected to fix itself when chemo is over. His right ear also has puss. We had to start drops again. We still have all day Friday and Saturday for chemo and then we rest three days.  We should start to see counts drop by the middle of next week.

 

Pray that all this suffering is going to be worth it in the end with a successful transplant and to never relapse. Please pray that the ear infection clears up and does not pose a threat to his transplant. Pray that the blood pressure stabilizes  after chemo and is not an ongoing problem. Please remember Morgan as she prepares to go to New York for anti body treatments. Pray for Austin and that his fever breaks and he can have surgery soon. Pray that Alexis remains at home doing well. Please pray for Nathan as he continue to struggle. We met some new friends tonight that need our prayers as well. Brachston,3, has ALL  and Alexis was born with heart problems and had surgery. She is 9 weeks old and she will need our prayers as she heals. 

 

March 26, 2003  Day -7

 

Chemo was started around 9:10 this morning. The Melphalan was finished by 10:10. We had already had a long morning. We have a lot of getting used to up here. The nurse came in and changed his diaper every 2 hours. She talked to him. I know she was just comforting him, but it was a little annoying to keep getting woke up. I guess he got tired of it to because by 4:45 he had no desire to go back to sleep. He finally did, but only until about 6:00. He got up and was fairly chipper to have had such a rough night. I on the other hand could have slept for much longer. He has eaten like a pig and pizza was not on the menu. He ate eggs, sausage, pop

 tarts, granola bars, vanilla wafers, and drank plenty of tea. He is now hooked to so much stuff. Bells are dining and whistling all the time. If his finger isn't straight his O2 machine goes crazy. He has probes all over his chest monitoring pulse, heart rate, respirations and when he gets wild they bing. The drugs often cause low blood pressure and we are seeing those effects. He did fine awake, but it dropped off while he slept. It was a long nap time dealing with it, but we thought it was over when he woke up. Wrong, as soon as he went to sleep tonight it all came back. He is now on dopamine to keep it where it needs to be. It will be adjusted as needed when he is awake and asleep. Other than that he has done wonderful. No vomiting so far!!! I hope it continues that way. He has to have a bath every night and change the bandages over his central line every night. I think our most challenging times are mouth care times. Every 4 hours we do mouth care. He is great about letting me do it. I guess it doesn't taste to bad. The idea is to swish and spit 3 different medicines. Well, Taylor swallows the medicine then just spits to spit. I have swished and spit a gallon of water trying to show him, but it didn't work. I finally quit trying and we are just doing it with toothetes. He is doing great. He still spits for the fun of it, but as long as he keeps doing it, I don't care if he spits.

 

He has flirted like crazy and already learning names of our new nurses. Look out 4-tower, we have new women invading your territory!! He was funny last night when we were getting ready for bed. Since he is in a crib I get to sleep on the hospital bed rather than the fold out chair. He was so upset that I wasn't in the chair. I let him pitch that fit because I was not choosing the chair over the bed. You have to choose your battles you know:)

 

Please remember Austin (surgery postponed again), Nathan (still critically stable) and everyone else dealing with cancer both young and old. Remember The troops and their families as the war continues. Please pray that Taylor continues to tolerate this chemo and continues eating this well. Pray this is the last chemo he ever receives. Pray that the transplant is successful and we never face relapse and we put this trying time behind us. I know all of these things are possible through God and prayers.

 

Don't forget to sign the guest book. Taylor and I really enjoy reading them. Since we have a computer in the room he thinks he has to be on it all the time. Father like son!!

 

March 25, 2003

 

Today starts the beginning of a long battle. Taylor was admitted to the stem cell floor at Children's Hospital. Taylor will be in room 659, and will be there anywhere from 1 month to 3 months. It all depends on how his transplant goes, how his body's immune system rebounds, and other things that will go into how soon, or long it will take before we can return home. Another hard part for us, is the fact that only one parent can spend the night in the room. It is very hard to be apart from each other at a time like this. The house feels so lonely tonight as I type these words you see before you. I pray for a safe and quick recovery so that we can all be reunited together again. I fear the worse, but know that with God's will, Taylor will be just fine. Taylor's kidney test that was run yesterday turned out great, and this means Taylor will be receiving the full amount of chemotherapy. The schedule is like this: tomorrow he starts chemotherapy, which will run through Saturday night. It will be a continuous, extremely high dose of melphalan, etoposide, and carboplatin. The protocol can be viewed here. He will then rest Sunday, Monday and Tuesday, and on Wednesday April 2, they will infuse Taylor's frozen stem cells back into his body, like a blood transfusion. The idea is, the chemotherapy, because of the high amounts used, will kill everything in his body. His body will have no means of growing new bone marrow (bone marrow in return creates white blood cells, red blood cells and platelets, and without these, he would die). On April 2, they will give him back his clean stem cells to "rescue" his body from the lack of bone marrow. His stem cells will filter back into his body, finding their way into his bone cavity, where they will take root, and engraft, where after about 10 days, they will start producing new white and red blood cells and platelets. During the time after transplant, Taylor's immune system will be wiped out, and his body will not be able to fight infection. His body will be open to infection, which would be deadly. He will be isolated, until such time that his body has started creating new cells that will be able to fight off infection. The overall goal of this procedure is to kill off any remaining "hidden" cancer cells that may be in his body hiding. Taylor's cancer often lays dormant for years, with these hidden cells just sitting in wait, and then awaking for some unknown reason, and then multiplying spreading the cancer back throughout his body. The goal is to wipe out all of these cancer cells so that there is nothing there to create a relapse of cancer. Please pray that this is a safe procedure and that Taylor's cancer cells will be killed off 100%. I also changed the picture page for all of the Auburn Pictures. It will make it a little easier to view all of them.

 

March 24, 2003

 

Today we went to UAB for the blood/kidney function test. Of course nothing goes as planned. We got there at 8:00 and they finally called him back at 8:50. The plan was to put in an IV for the dye and then draw blood from his central line. I had him ready with Emla on both hands. What does she do??? put the dye in his line and tell me they will draw blood from his arm. We questioned it and her answer was if the IV was not straight in the vein it would lose some dye and we couldn't have that happen. So, he had his blood taken out of his arm at 9:50 and 11:50. The first hour we spent at the cafeteria and he ate 3 biscuits. We went in the lab and did the first draw. He went crazy! It took 2 of us to hold him down and he was thrashing all over. It took a long time to draw it because the needle was so small. He was now very tired. WE pushed 2 chairs together and he slept until I woke him up for the second draw. This one was much smoother. I sat him in my lap and we counted and played I spy while she did it. He never knew she stuck him. He did look at her once and got upset, but we just distracted him and he was fine. It was much shorter than we expected. We were gone by 12:15 and headed for pizza. Of course there was no nap since he slept in the waiting room. He played outside again. He was filthy, but he had a blast. I am so glad.

 

We go in tomorrow at noon. We will not start chemo until Wednesday. I am so afraid. I am not afraid of this procedure, but the complications that could arise. Please keep us all in your prayers. Pray this is complication free and successful for Taylor. Pray this is the last chemo his little body will ever have again. We want this monster gone for good!!! Pray for Austin, who should have surgery today. Pray for Nathan who is still in critically stable condition. Pray all the doctors and doctors and nurses have the wisdom to care for all our children. Pray for all the troops and the families they left behind. 

 

March 23, 2003

 

Wow, what a day. Taylor had an absolute blast. He woke up very early, but he went to bed early last night. We ate some of our Easter eggs for breakfast. How many of you are going to use nursing tape to make designs on your eggs? I can certainly see that was a first for me, but it made great stripes. I put Taylor on my bed to watch Elmo while I got ready. When I got out we discovered he had a very loose diaper and it leaked out all over our comforter. So, I had to clean that up and it is ready to be sent to the cleaners. He got dressed and ready to open his Easter Basket. He was only interested in the tootsie rolls. Gram arrived with all the pizza. He ate the cheese off of 7 pieces before everyone else even got here. We all ate and headed outside to hunt eggs. He loved it. He found a lot all by himself including the grand prize egg worth $20. Easter is a blast at our house. We hid 166 eggs. Each color was worth a different prize. WE come in and count them and trade them in for the goods. Taylor won 5 cars and over $40 plus a ton of candy. He put his eggs in the hood of his jacket to go swap them for the candy. He did great until he had to give up the blue eggs. He also got ticked when he won a Hershey bar and wanted a resse cup. It was so beautiful outside and we all took full advantage of it. We sat outside while the boys rode the gator and played golf. Taylor had the time of his life and I am so glad. He will have quite a while that he is in isolation. He has been back inside for about 10 minutes. He was trying to eat a tootsie roll but he couldn't stay awake. He spit it out and was asleep before I could even throw it away. I will probably pay for this late nap later, but it is okay. 

 

Please continue to pray for all our friends dealing with cancer. Austin will be having surgery tomorrow morning. Please pray he come through it fine and this help him blow that popsicle stand, again. Please pray for a internet friend of mine. He is a 17 year old boy named Nathan. He is really struggling right now and could use your prayers. www.caringbridge.com/tx/nathan Please pray that we have no more delays and Taylor has his transplant as scheduled. Pray that it is complication free and we never have to fight this monster again. Pray for all the brave men and women who are fighting for us and there families who are missing them.

 

March 22, 2003

 

Today was spent cleaning and packing. We also got ready for Easter. Yes, Easter. We will be having a basket tomorrow as well as Easter dinner and an egg hunt. Taylor will be in the hospital on Easter Sunday so we are celebrating now. Our neighbors will probably think we are crazy, but that's okay. Our Easter dinner this year will be peet peet. I am sure all of the boys will be okay with that. Gram came by today and hid over 70 plastic eggs all over the yard and we will hunt for prizes tomorrow. We also dyed eggs. Taylor has never done that before and he really liked it. He would have made all blue if we had let him. Jim made an orange and blue egg and he screamed go, go, go!

 

Taylor still has a nasty cough. He is taking Sudafed and hopefully that will clear it up in time for Tuesday. After cleaning out his ear yesterday the doctors found that he did have fungus in the ear rather than a virus. They think it is from all the  antibiotics and drops we have been giving so they stopped all that. They put him on lotromin drops. Yep, it is the athletes foot medicine. It obviously burns the ear because he freaks out for a good 20 minutes after we put them in. I called the ENT today and he stopped them.

 

He is now playing, but he seems mopey and he has had 2 naps. I hope he is making up from yesterday and not getting sick or low counts. Tomorrow will be the last day we have at home for a while. He will spend Monday at UAB and be admitted to the stem cell unit Tuesday. We have packed lots of toys, movies, books etc for us to do. Hopefully it wont be to boring looking at those 4 walls for at least a month.

 

Please pray that Taylor doesn't have to delay transplant any further and that the delay will not hurt his remission. Please pray that he will have a complication free transplant and we leave in a short amount of time. Please pray that he never has to fight this disease again. Also remember Alexis, Austin, Morgan and all our other friends fighting cancer. Remember the men and women fighting for our country as well as there families.

 

March 21, 2003

 

We arrived in one day surgery at 7:00 for our 8am surgery that started at 9:00. That's just par for the course around Children's.  Taylor didn't mind that wait because there were several cars to ride on. I had to carry him to the hall way where the OR doors are and then the nurse took him from there. He cried, but I just walked around the corner. Literally the minute I was out of site he stopped crying. He has come so far since October. It is so amazing and sad at the same time. No child deserves to have all this be a normal part of life. He was gone about an hour and I went and got him so tea while he was gone. They brought him back on a stretcher. He looked so tiny laying there all curled up with Night Night and frog. He looked up and said "Mama, car." He immediately jumped in a car and took off down the hall. All this after they told me the medicine would make him very sleepy for several hours. We didn't have to wait the full hour after surgery to go since he was all over the place.  We left and went to Blue Cross to visit Gram and all her friends. Taylor was a show boat and ate all there tootsie rolls and ressie cups. We then went to get...... you guessed it, peet peet. He ate the cheese off 2 8" pizzas. We went by Salon Magnolia and got the goodies the girls got for him. Thank you all!!! He is having a blast with it all. Taylor finally fell asleep at about 3:00. He slept all the way home and for about 30 minutes once home. So, all that sleepy medicine and we got about an hour nap. Go figure!! We had a birthday dinner for me, Dugan, and Bob tonight. We ate pizza and cake. We had a good time and Taylor was a show off as usual. Well, I better go. Ya'll know me, I have to get the house clean before I can go into the hospital. I can't help myself:)

 

Praise God!! Morgan's CMV counts are coming down!! www.caringbridge.com/nc/morganbarnes Also, remember Austin who is still in the hospital, Alexis who has gone home and all the others dealing with this monster, childhood cancer. Remember our troops and their families.

 

March 20, 2003

 

Today consisted of a pretty pointless trip to the hospital. We arrived at about 12:30 and went to the ENT clinic to recheck his ear. We had no appointment so we had to wait on someone to come. They had to page the doctor because he was at UAB. After about a 45 minute wait, we went back. He looked at his ear and started to suction it out. He got a phone call from the doctor who saw him Monday and they discussed that it looked better, but was still infected. His culture did not grow anything therefore, he has fungus in the ear. Probably a yeast infection. Dr. Hill, the doc who put in the original tubes called as well. He said put a new one in. I was very glad, but a little ill too since we begged for one Monday. Taylor was excited because that meant he didn't have to suction it anymore. By now it was 2:00 and we should be at the stem cell transplant unit meeting with the doctors. However, I was being sent downstairs to start an hour and a half registration process for tomorrows tube placement. I finally had to leave and go upstairs. We filled out paper work and got vital signs. He was back at 25.2 pounds today up from 23 on Monday. We believe he was dehydrated from the lack of sweet tea in Florida. We also found out some news that was a little discouraging, but not to bad yet. His urine levels that were tested Monday and Tuesday were low meaning his kidneys are not getting stuff out of the blood stream fast enough. This is a side effect of chemo drugs. The doctors feel that because he was so dehydrated he may have just not had enough urine to work with. We will go to UAB Monday and have a radio active dye injected into his blood and then have his blood tested every few hours. This will show exactly how fast his kidneys are ridding the blood of the dye. They say this is the gold standard in kidney function testing. If this test also shows a low level he will get lower doses of chemo pre-transplant. This will not change the outcome of it all just lower the risk of further kidney toxicity. We wont get too nervous until after this test result is back. Taylor also has a bit of a cough and runny nose. They did a nose swab today and should know if it is growing anything by tomorrow. Because of these two factors we will be admitted to the ward on Tuesday rather than Monday. Our schedule will be pushed back one day for everything. We will get our transplant on 4/2. This is of course if the cold and ear don't hinder us any further.

 

Please pray that these delays don't hinder us to much and that the delay doesn't give his body time to grow new cancer cells. We need to stay in remission!!! Please pray for all the other children facing this and other cancers. Also, remember to pray for our troops and their families.

 

March 19, 2003

 

Today, we ventured to Auburn, and Taylor had a blast! First we went to my old work and walked around looking at all the fish in the tanks. Taylor enjoyed looking at the huge catfish. It was good to see all of my old co-workers, including Curtis. We then headed for the athletic complex and Taylor's tour of the football field and complex. First let me send a huge thank you to Sue, Caroline, Andy, Will, and Gloria for setting this up and taking Taylor around, he had the time of his life! I would also like to thank all of the coaches and players we met, in particular Coach Tuberville, Chette Williams, and the players that took the time to talk with Taylor before practice, you truly made his day! The pictures are posted above. Taylor got to tour the football stadium first, and despite the huge stadium and green grass, he favorite part of the tour was the men working on the west end zone, putting up a new wall. They had a bull dozer and back hoe, and were digging up the old wall. He enjoyed watching them dig and play in the dirt. He also enjoyed racing with ca-ca, Andy and Will across the stadium. Taylor then got to go see the press room, where Coach Tuberville addresses the media after games. He then got to see the huge locker room where the players dress and meet for halftime. He loved the huge AU in the middle of the locker room. We then got to tour the side rooms under the stadium where Tiger Walk ends, and some other rooms that had some neat stuff in them. After sitting on a tractor, we headed back to the athletic complex, in our golf cart, which he loved. He also enjoyed honking the horn at all the pretty girls, then waving at them. He loves to flirt. On the tour of the complex, Taylor got to see the weight room, the indoor practice facility and the practice fields. He loved the tackling dummies in the indoor practice facility, and kept asking to set them back up so he could run and tackle them. Meeting the players was a little intimidating for Taylor. They were of course, much larger than Taylor, but they also had their shoulder pads on, and it scared him a little. He did let Coach Tuberville and Chette Williams hold him. I really appreciate Coach Tuberville taking time out of his day to talk with us and Taylor. I would also like to thank Chette Williams for our prayer. What a great man and a true ambassador to Auburn and a man of God. Taylor then got to watch a little of the practice. He enjoyed watching the running backs catch punts while other teammates tried to make them drop the punt. He also liked watching the quarterbacks passing the ball. It was a special trip for Taylor and he really had a good time. He was very tired from his long day and was ready to go home, so we did.

 

March 18, 2003

 

Happy Birthday to Kim today!!! The hospital trip is over, and we finally made it home!!! Getting the catheter put in was stressful, but they finally were able to get it in yesterday. Taylor was grumpy because he had to stay in that be for 24 straight hours, plus he did not take a nap today, so he is out right now (8:16pm). We plan to go tomorrow to Auburn to tour Jordan Hare Stadium, the athletic complex and go watch practice and possibly meet some players. Isn't it great that his bone marrow came back clean? I can't believe Kim saved that little tid bit till the end yesterday. Basically, from all the scans and tests, Taylor is in remission, although he could have some cancer cells floating around inside him. We all need to focus our prayer to a safe transplant, and they this cancer does not relapse. There is a 70% chance he will relapse, but we have faith in God and know that Taylor will be in the 30%. We pray that the transplant will kill any remaining cancer cells that might be in his body, so that he will never again have to face this battle. We also pray for all the other children out there who are battling cancer.

 

Second Annual “Spring Into Giving Blood Drive" Set for April 4th, On Friday, April 4th, The Point 106.9 FM, Alabama’s ABC 33/40, and Colonial Brookwood Village will join with your American Red Cross by sponsoring the second annual “Spring Into Giving” blood drive. Blood donations will be accepted between 6 a.m. and 7 p.m. in the old Betsy Prince location on the upper level of Colonial Brookwood Village in Birmingham. Everyone attempting to donate will receive a Red Cross tee shirt and the good feeling of knowing you helped save a life. Please go out and give a pint of blood in Taylor's honor!

 

March 17, 2003

 

We made it home safely after a hectic morning. We started our day at MacDonald's. Guess who was angry with the menu? He stared at his biscuit until we were all done then he was ready to eat. We are already behind schedule, so we opt to bring it with us. What a mess!!! Oh well, it wasn't our car. It all landed in his lap anyway, so it was okay. We got to the airport and it was so busy. There was about an hour wait just to get to the x-ray machine. Thankfully we had a stroller and got to skip the line:) Jim set off the alarms again and I got stuck getting everything through the machine. We finally got settled in for our wait to bored and low and behold we ran into a friend from high school and his wife. We had a nice chat. Who'da thunk we would find a friend in Orlando??

 

G-mom met us at the airport and helped us get everything loaded up. She dropped Jim and Taylor off at the hospital to start his urine collection. I went home to get our car. I met them back at the hospital just in time to watch them put in the catheter. He was such a big boy. He did cry, but he didn't have to be held down. He is not giving them much since he didn't drink much the last few days. They are giving him IV fluids to help him out. Tomorrow we will get some more tests. He still needs a little more blood work, another EKG, and a dental consult. We will meet with the ENT doctors to schedule a time for the new tube.

 

Everyone was worried Taylor would be homesick since he didn't got to come home first. Whatever, 4-tower is home to him. He has already had his peet peet for the night. He has been showing all his Buzz toys to everyone and eating tootsie rolls. I am home washing clothes and unpacking before the king of destruction gets home.

 

GOOD NEWS!! WE already reported that Taylor's bone scan came back clear with the exception of one spot on his skull that we think is uptake and is still healing. His bone marrow biopsy results were in today. We have been very anxious to get them since we left. His marrow is 100% clean. Praise God!! We know all your prayers and support have gotten him this glorious news. Keep those prayers coming as we head into the hardest phase of this journey.

 

March 16, 2003

 

Well we had a total change in plans today. We did go to Universal and we all had a blast. I watched the Twister movie, it was fun. While I was gone Taylor bought some goodies. After viewing Twister, we took off in search for Taylor sized rides. We took him to a play ground that he loved. He was mad when we finally picked him up and made him leave. They had a lot of water games and such for kids, but Taylor can not get his noodles wet, so that was all out. We didn't even attempt any shows. I think he would have liked the Barney and Play house Disney once it got going, but because of the long waits to get in, he is bored before it starts. There were a lot of things Jim and I would like to have rode or seen, but Taylor gets bored while he waits for us to take turns riding things and since this is his trip we just didn't do it. Taylor had a blast posing by all the cars and chairs outside Margaretville. We ate at Hard Rock and he enjoyed the cars and such in the building. The kid's menu was all pictures, so he pointed and ordered his own food. You guessed it, he pointed to peet-peet. You would think he would be tired of it, but he isn't. We were done by noon, so we decided to go ahead and bite the bullet and go to the Animal Kingdom. We got there around 1:15 only to find out that it closes at 5pm, not worth the $100 admission. So, we went to MGM. Taylor fell asleep in the car and thank goodness, didn't wake up when we put him in the stroller. We shopped and mapped out our time while he slept. We went to see a sound effect show. It was all done through head phones, so it wasn't noisy enough to wake him up. It was however pitch black. I couldn't see him and I knew if he woke up he would freak. I couldn't have gotten out if I wanted to. I was a nervous wreck all through it. He woke up about 2 minutes before it was over and by the grace of God the lights came on at that exact moment. He never made a peep, just reached for Ca-Ca. We took the back lot tour and he was mesmerized by the planes and the special effects water shows. Taylor got to spend his Disney dollars any way he wanted. He spent just about all of it on Buzz stuff. His favorite, the very annoying laser gun or maybe the bag full of tootsie rolls. I think the highlight of today was going to Pizza planet. For those of you who aren't up to speed with your cartoons that is the pizza place in Toy Story. It really is a pizza place, but we had already eaten. We did play in the arcade. We met Lilo and Stitch, and Shreck. We saw a bunch of characters, but the lines were so long. We ended up missing our reservation for the Rainforest Cafe, so we went to Downtown Disney to the other location. It was a 2 hour wait and it was raining, so we left. We did, however, stumble upon a toy store that had Buzz and Mr. Potato Head outside. We even managed to come out with nothing!! We went to the old stand by, Golden Corral, for dinner. We thought maybe he would eat some corn, but we were wrong. He still managed to eat the tops off of about 8 pieces of pizza. After dragging him out (he wasn't finished) we went back to the hotel and packed.

 

We will be arriving in B'ham around 12:30 tomorrow and going straight to Children's Hospital. We will be spending the night for a 24 hour urine test and several other procedures including getting a new tube in his right ear. I am not looking forward to keeping him still while he is catheterized. Last time we did this test was right after surgery and he couldn't move. This should be very interesting. If all goes well we will head to Auburn on Wednesday.

 

March 15, 2003

 

Today has been a shorter day, despite the early, early wake up we had this morning. We all got up at 6AM Orlando time (that's 5AM Birmingham time). We went to eat at Chef Mickey's, located in the Contemporary Resort Hotel (the A-framed hotel that the monorail runs through). Taylor got a kick out of watching the train come in and out of the hotel every few minutes. He also warmed up to the characters, but not before being scared to death, literally. The first character to come through to visit, was Dale from Chip and Dale. He snuck up from behind on Mommy and Taylor. Taylor turned to see this large stuffed animal right in his face, and he jumped clean out of his skin. It really did scare him. But after that frightful encounter, he did really well with all of the other characters, especially Goofy. Goofy actually had the nerve to take night night and blow his nose with it! Taylor then grabbed it from him, and blew his own nose. I think Taylor has a favorite now with Goofy. After the breakfast, we took off in search of dauphins and sharks at Sea World. It did not go as well as expected. Taylor got another break in line pass (so that he could remain in his stroller and not have to leave it at the gate of each attraction). We visited Dauphin Lagoon first, and got to see some real life Dauphins close up, and even fed a couple of them. Taylor was leery of touching the dauphins, so he nominated daddy to pet the dauphins. Taylor was more of a director, than a hands on kind of dauphin watcher. After petting the dauphins, we went to see the dauphin show. Taylor enjoyed the first 5 minutes of the show, but then got anxious and did not want to sit for the rest of the show. Those dauphins sure can jump! After leaving the show a few minutes early, we took off to see the sea lions and penguins. After that, mommy and daddy went to ride Kraken, a bottomless roller coaster. They both had a blast! After ridding the roller coaster, we took off for the Shamu Adventure Show. We got there about 15 minutes early. By the time the show started, Taylor was ready to go, so we watched the first 10 minutes of the show, and then Taylor just couldn't take anymore, so we left. Taylor was already drained from Magic Kingdom, so we decided to go eat lunch and then take a little nap. I bet you can guess what Taylor had for lunch, you guessed it, peet peet from Olive Garden. Our waitress actually took the time to hand make Taylor some sweet tea. He has been deprived of sweet tea for 2 days now, and when he tasted it, he took about 20 big gulps, then let out this sigh, like thank you sooooo much. After eating, we returned to the hotel to take that little nap. The little nap turned into a 4 hour nap, which Taylor really needed.

 

After our much needed nap we headed back out. We went to an outdoor mall that had an FAO Schwartz toy store. It wasn't nearly as big as the one in Vegas, but it still blew Taylor away. He didn't quite understand that we have to take everything we buy back home on a plane. He was picking huge cars and train kits. Finally he found just what he wanted. His very on pack of "my sticky" which would be gum to the rest of us. No matter how we tried we couldn't keep his mind off it, so he ate (literally) the hole thing of bubble tape. We didn't see much else there that was note worthy. We decided to head out and play a little goofy golf. Taylor did much better than last summer in Gulf Shores. He did really well with waiting his turn. He hits his ball a little closer than us. He goes to the hole and pushes it in or just drops it in. He had a blast. He tried to go in after the ball on the 18th hole. Gave us all a scare!! His foot fell right in and he almost fell over. We went to a late dinner at Outback. We were pleased to see they had sweet tea on the menu. Although it wasn't Alabama sweet. There is no peet-peet on the menu at Outback. We ordered a grilled cheese. When it first came out he just looked at it and said peet-peet. We decided when we finished we would stop and get a personal pizza for him. However, he decided to eat it and ate bread and all. He then fed himself an applesauce cup we brought with us. He got a little restless waiting on us to finish, but we occupied him by making a bridge with the bubble tape box.

 

Highlights of the day..... Making a Buzz Lightyear pressed penny, Taylor's characture drawing, the safari car at the toy store.

 

March 14, 2003

 

Hello!! It's Kim, Jim and Taylor reporting to you live from Orlando. We have had a blast! Taylor didn't eat very good this morning despite us going to his favorite place. We got to the Magic Kingdom shortly after it opened. We rode the train first. Taylor enjoyed the scenery along the way. We got off at Mickey's toon town. We met Mickey and Taylor even gave him five. He still isn't tall enough for a lot of things and if he is tall enough we were afraid it would scare him. He also came here with low platelets so we are not chancing anything rough. We went from there to ride Buzz Lightyear's ride. The line was long and the very rude man refused to allow us to bring the stroller through the line because it was a fire hazard. (Remember that fact for later) After an hour in line we got on the ride and he LOVED it. You shoot at Zerg and score points and you steer it. He had a blast doing it and he and daddy had 300,000 plus points.

 

Once that ride was over we went to guest services and got a pass to use our stroller as a wheel chair and we no longer had to wait in line!! That is where we met the security guard who had leukemia when he was 3. He gave Taylor some stickers and that occupied him for the longest. Now we were ready to conquer the park. We went in the exit of It's a Small World and got right on. Taylor really enjoyed this ride. He was pointing at the girl dolls and blowing kisses. He pointed out hearts, swings, frogs and cows. After this ride we went and got a drink and Jim and I took turns going to ride Space Mountain. Once again there is no sweet tea here so we got milk. He didn't want it at first, but he eventually gave in and had an entire pint. We rode The Pirates of the Caribbean. We forgot it had a small drop in it and though Taylor never cried or acted like it bothered him, he did cover his eyes the rest of the way. We caught him peaking out to see what was going on.

 

Bet you can't guess what we had for lunch?? Peet peet! He lapped it up. We had to take off his ace bandage and re-apply it. We have never seen so many people starring before. They were shocked and amazed at his noodles. Taylor finally sacked out and we shopped while he napped. When he woke up Jim took all our packages to the car. While he was gone Taylor and I rode the train around the park, twice. He was bored by the time we got off. We headed back to do the things he liked one last time. When we got to the Buzz ride and showed them the pass she told us to go on through the regular line. We had no problem waiting, but we were a little miffed with the guy who earlier refused to let us through even though we explained why we needed to stroller. (Chemo makes you sensitive to sun, so his bald head needed to be covered). At the end of the day, we rode the monorail all the way to Epcot, so that Taylor could see the "big golf ball." He really enjoyed riding the monorail.

 

We came back to the hotel after a long day and ordered pizza, who'da thunk it? We bathed and changed our dressing over our noodles. He did much better than expected with all the excitement of it all. We are  having a blast. We can not thank you enough, Sherrie. We have to go to bed now. We are eating with the characters tomorrow at 7Am, that is 6 our time. YUCK!! After eating, we plan to tackle Sea World. I have never been before, and the last time Jim went, he was 10, so it will be an uncharted experience for all three of us.

 

March 13, 2003

 

Tonight, we went to Downtown Disney to eat some dinner and look around in a few of the shops. Taylor had a blast, but was a little cranky at the restaurant. After we left, he seemed to settle down, while still carrying the roll around, and devouring the middle of it. For some reason, they do not have sweet tea down here. What's up with that? We went to Wal-Mart to get some cookies and possibly some tea. The only tea we could find was some small bottles that, when we returned to taste test it, we found it to be terrible. We took a few more pictures, which can be found here. I will put a temporary link at the top of this page to access these pictures.

 

We have arrived in Orlando. The flight down here was smooth. Taylor was awake for take off, then fell asleep. He awoke in time to see us land in Orlando. Trying to figure out how to carry him, plus all of our bags has been the tricky part, but we have managed so far. We are in our hotel room now and plan to drive to Downtown Disney in a few minutes to eat and look around. The hotel room is awesome! Thanks Sherrie. We will update this page throughout Taylor's vacation, sometimes 3 or 4 times a day, so stay tuned!!! Pictures that we take will be posted as soon as possible here. This will be the fastest and easiest way for us to post pictures while we are away. We will post new pictures 3 to 4 times a day also! Bye for now, Taylor is ready to eat some peet peet.

 

March 12, 2003

 

It is only 3:30, but it has already been a long day. Taylor is sacked out on the couch. We got up early to have blood drawn. His counts are as follows. WBC: 9,900, RBC: 3, 210, HCRT: 26.9, PLT: 28,000. He will get a shot tonight and tomorrow and we will be done with those. That should be the last shot for a while. He will receive Neupogen through IV on the transplant floor. After his nurse left Taylor and daddy rushed me to get ready. We went to the mall and rode the frog on the carousel. We had to have a blue balloon. The balloon turned out to be a problem. Our xterra has no air right now so we had to roll down the windows. This made the balloon bounce off Taylor's head making him very angry. We went to everyone's favorite, the Olive Garden, for lunch. As usual Taylor ate like a pig. He ate all of his cheese peet-peet and a lot of mommies noodles as well as salad and bread. We also stopped by Amsouth to visit daddy's friends. Taylor was hammin' it up. He made out like a bandit. He had to get a sack to carry all the candy, pens, beads etc. he snagged from desks.

 

We will be heading to Orlando tomorrow. We will still be able to update the webpage daily, and also add pictures each day. More to be updated later...

 

Second Annual “Spring Into Giving Blood Drive" Set for April 4th, On Friday, April 4th, The Point 106.9 FM, Alabama’s ABC 33/40, and Colonial Brookwood Village will join with your American Red Cross by sponsoring the second annual “Spring Into Giving” blood drive. Blood donations will be accepted between 6 a.m. and 7 p.m. in the old Betsy Prince location on the upper level of Colonial Brookwood Village in Birmingham. Everyone attempting to donate will receive a Red Cross tee shirt and the good feeling of knowing you helped save a life. Please go out and give a pint of blood in Taylor's honor!

 

March 11, 2003

 

Today was a fast day. I guess it was because yesterday was so long. We spent the day packing our bags for Orlando. We also had to call the airport and see how to travel with all his meds, needles and syringes. It doesn't seem like it will be that big of a deal. We shall see!! Taylor got a kick out of watching Uncle Dugan blow leaves. All my blinds have a single slat at his eye level turned up. He took a good nap after pitching a fit over tookies or cookies to the rest of us. He woke up to find Gram here and had a nice time playing and he was determined to keep her here. He has shown her everything including how he rocks out with the American Idol singers.

 

We will have Home Health come tomorrow and draw blood. There is a possibility he will need a transfusion before we leave. We don't want him tired while we are gone. Jim is off so we are going to enjoy the nice weather and get out some. On that note, I better get off this computer and finish packing and cleaning ( a never ending job around here).  Remember Austin, Sophie, Liam, James, Deanna, Meagan, Dillon, Jeremy, Aaron, Tyler, Sean, Zoe, Ashton, Ally, and Alexis. Alexis is going home tomorrow!! Way to go Alexis. Also remember all our friends battling Neuroblastoma.

 

March 10, 2003

 

Today was the longest day in the history of all days. we arrived at clinic at 8:15. By 8:45 we had done all the basics of weight, height, temp, and blood pressure. We had also had blood drawn from his central line and had Emla cream put on his hip bone and arm. Emla is a numbing cream put on the site several hours before a procedure. Now the waiting began. At about 11:00 we had to go draw a little more blood. This was to send off with his bone marrow sample. I felt awful at that point. I had been telling Taylor all morning that as soon as Miss Meredith was finished with him he could eat. Miss Christy drew his first labs and Meredith drew the second set. As soon as she was finished he said "okay, eat". We both felt awful. He still had a while to go before he could eat. Finally around 12:00 he was taken to Simon Sedation. It didn't take much for him to be sedated since he was already so sleepy. He was finished in about 30 minutes. He took another 30 to wake up. We finally roused him enough to be able to leave the sedation room. We went back to clinic and waited some more. Not to bad this time. While we waited I took a sneak peak in his ears myself and determined that the right one was indeed STILL infected. When Dr. Castleberry came in I told him of my diagnosis. He told me one seminar didn't make me a Doctor. I beg to differ seeing as I was correct. He gave us more drops to get us through the vacation and said we will get another tube in that ear next week. That simple infection could prove disastrous during transplant, so we need to get it taken care of now. Now it was time to eat, Taylor scarfed the cheese from a grilled cheese while we waited to see the dentist. You want to talk about traumatic!!  Taylor was so tight lipped that she couldn't look. She had to get this contraption to pry his mouth open then lock it open. He was gagging and going crazy. I was nervous that his gums were bleeding and we only have 22,000 platelets.

 

We met a 5 year old boy today who was diagnosed at 13 months with Neuroblastoma. He had a stem cell transplant at 19 months. He was fine, no hearing aids or noticeable problems. It is always encouraging to see that. We hope and pray that his yearly check up was good.

 

We may have to miss Auburn due to our schedule. He will need to draw labs Wednesday and possibly get blood before leaving so that day is out. We scheduled it for the 19th, but that is the day that we are doing his 24 hour urine sample and possibly getting the new tube. We will just have to play it by ear. I know I have made Meredith crazy trying to arrange everything around our schedule, but it is very much appreciated. We love you Meredith!!

 

You think the day sounds long so far, well think again. Jim went to pick up our prescriptions from Rite Aid and they didn't fill the ear drops because the prescription was for eye drops and he wasn't smart enough to know that eye drops can be used as ear drops, but not vice versa or to just call the Dr. to verify. He waits to ask us at 5:30 when all the doctors and nurses are gone and we can't call. He finally filled that. To top it off they did not refrigerate his Neupogen, that is the 400 dollar per shot dose he gets nightly. It took over 2 hours to find out if it was ruined or not. Luckily it is not.

 

Remember to  prayer for Austin, Alexis, Sophie, Liam, Aaron, Tyler, James, Ally, Deanna, Ashton, Jeremy, Dillon, and Zoe. Remember Chris and Morgan and the others who have Neuroblastoma.

 

March 9, 2003

 

Not much to report. Gram came and of course had all kinds of goodies. Taylor refused to take a nap so we headed to McDonalds. Taylor was asleep before we got to the interstate. Mommy and Gram ate while we drove around and he slept. We knew he would wake up as soon as we pulled in the driveway and he did. We will go in tomorrow and get lab work. If his platelets are low he will get a transfusion then go to the OR. If his platelets are okay we will go strait to the Operating room for his bone marrow biopsy. That will take about an hour and then a little while in recovery. Taylor usually doesn't hurt to much afterwards. I hope he doesn't tomorrow because his next stop will be the dental clinic. He will have a full exam o make sure there are no problems that need to be taken care of before transplant. I think he will have several blood tests done and if all goes well that will be the last visit until after our trip. He will spend one more night on 4 tower when we get back. He will get a 24 hour urine test and have to get catheterized for it. He could do it at home, but I have no desire to collect tt and monitor the cath. After that we will try to do as many fun things as we can before the 24th when we admit to the stem cell unit. We will have some hard days ahead of us, but with all your support and prayers we will get through them. If you have not read the history page, you can do so by clicking here, it was just added last week.

 

Speaking of prayers, remember to pray for a clean bone marrow biopsy and no cavities. We also need prayers for Austin, Alexis, Sophie, Liam, Aaron, Tyler, James, Ally, Deanna, Ashton, Jeremy, Dillon, and Zoe.

 

March 8, 2003

 

Today was fun for everyone. We slept late since Mommy and Daddy were out so late. We went out to eat and bowling with Chris and Temperance. We wont mention my bowling score!!! Today Taylor played with Papa and G-mom while daddy and mommy got out. Daddy went shopping for stuff for the room and mommy went with Gram. It was a beautiful day to be outside. Taylor is not acting like he feels really great, but his counts are still low. Plus, he is worn out. He is finally drinking!!! He has only had about 10 oz in the past week.

 

We need lots of prayers now. We need for Taylor's tests to all be positive and clean of cancer. We need his counts to rise and him to stay healthy, so we can have a great trip to Orlando next week. We need to give a HUGE thank you to Sherrie for arranging our trip. We will leave Thursday and fly directly to Orlando, and return on Monday. Thank you to Sherrie and to the other person who helped make this possible for Taylor, you do not know how thankful we are for what you did. Please remember all our friends. Austin is back in the hospital with fever and some bleeding. Alexis is doing great. She had an MRI Thursday and it was clean, no cancer!!! Morgan has gone home from transplant and  doing great. We have met some new friends at Children's who need our prayers. Please remember Aaron, Tyler, James, Ally, Deanna, Ashton, Jeremy, Dillon, and Zoe.

 

March 7, 2003

 

We got some very, very good news today. Dr. Berkow came by to give us the results of the Bone Scan and the CT Scan. The CT Scan was completely clear, no signs of new tumors anywhere in his body. The Bone Scan, which is the second most important test behind the Bone Marrow Biopsy, also came back with positive results. If you will remember the last Bone Scan, Taylor still had some uptake, or residual cancer on his forehead/skull. The Bone Scan showed a huge improvement over the last scan, and while there was a small spot still on his forehead, Dr. Berkow thinks the spot is not cancer, but just healing of the bone. It takes a while for the skull bone to heal. We have some many people to thank, who have prayed for us, and these wonderful results, but most importantly, God. He has answered our prayers, and while this does not mean Taylor will be cancer free forever, it is a step in the right direction. The Bone Marrow Biopsy, which Taylor will undergo on Monday, will also be a very important test, to tell us if Taylor has any tumor cells within his bone marrow. In October, Taylor had 50% cancer in his bone marrow. This percentage improved down to 20% in late November. We hope Monday, it will be do to 0%. As many of you know, these results are a step in the right direction. Neuroblastoma is a very difficult cancer to beat. The reason is, very often (70% of the time) children relapse within 2 years of being in remission. This is due to Nueroblastoma Cancer Cells that lay dormant within the body, as if they were healthy cells just sitting there sleeping. They are not prone to chemotherapy, or any other drugs. They just sit in the body, and usually within 2 years, they turn on, and relapse occurs. This is why after Taylor's transplant, he will be taking other drugs to hopefully wipe this hidden cells out of his body for good, so that he will not relapse. He will have a chance to get on another study where he will receive an GD2 Anti-body treatment, that is part mouse cells, that if works properly, would go into his body, search out the hidden tumor cells and attach to these cells. They can then train the body's own immune system to attack these cells because they would be a foreign object (the mouse cells). He will also be taking Accutane, which is another drug that hopes to break down cancer cells, and keep them from growing and dividing. Taylor will be randomized for the Anti-body treatment, but if for some reason, Taylor is chosen not to receive the treatment, we do have other options, such as the Anti-body treatment that Sloan Kettering Memorial uses up in New York City. We should know soon if he will receive this in Birmingham, or not.

 

March 6, 2003

 

Today was a busy day, but not as busy as we have had lately. He had an x-ray and some blood work. He had to get some blood drawn from his arm for the first time in a long time. He did good with all his tests. He feels much better today than he has the past few days. His counts are still very low, but they are finally moving a little. Hopefully he will continue to feel better daily. He has eaten a good bit today. It was all junk, but it was food. He ate an entire bag of cheese puffs and then asked for more. I went to get him some more and the machine took my money, but didn't give me any cheese puffs. We finally got them!! He ate 2 of them! He did drink about 4 oz. of tea. He has had about 4 oz in the past week, so we are pretty excited. Mommy went to talk to Anna's 6th grade class. I talked about Taylor and his cancer, and answered all their questions. They had some great questions. I really enjoyed it. Anna did a great job on her posters. She had a graph done that looked very similar to the one we were shown in a conference the other day. Great job Anna!!

 

March 5, 2003

 

Taylor had his MIGB Scan this morning. The dye they inject him with for this scan had to be in his body for a full 24 hours. Pa-Pa came and took him to the scan, while Kim and I went to hear a lecture by Dr. Castleberry on Nueroblastoma. Dr. Castleberry is one of the leading researchers in the world on Nueroblastoma, and it was very interesting to hear what he had to say. It is truly a blessing that we have such an esteemed doctor that specializes with Taylor's cancer right here in Birmingham. Taylor should also have his hearing tests today. His counts still have not improved, with his WBC at 130. Dr. Crawford said as soon as his body starts producing some infection fighting cells, that he will let us go home.

From Jerry H. Cotney: I am writing you to ask for your support on behalf of an AmSouth family and the Leukemia and Lymphoma Society. Specifically, I am training for a 100 mile "century ride" on June 1 as a member of the Society. The ride will be with cyclists from all over the country around Lake Tahoe, NV. Training and fund-raising necessary for this event are in honor of Claire Collins, wife of fellow AmSouther Kevin Collins. For those who haven't met Kevin, he is as friendly and genuine a person as you will find. Claire was recently diagnosed with acute leukemia. Together, they are the parents of four children. If you would like to help Mr. Cotney and his efforts, you can contact him at 205-581-7350, or by email jerry.cotney@amsouth.com for more information.

March 4, 2003

 

Taylor did very well during the Bone Scan and CT Scan. The Bone Scan is a very traumatic experience for him. He has to be awake for it, and they tape his body, arms and head down to the bed so that he cannot move, and he has to lie like this for about 30 minutes. He didn't scream as much as usual. Today he will have the MIGB Scan and hearing test. They have to monitor his ears, due to the chemotherapy that he gets. One of the drugs causes hearing loss of high pitch frequencies. Here is a great article on different types of scans that Taylor has had. A lot of people have asked us about these scans, and it is hard to explain what they do.

 

March 3, 2003

 

The Heart Test is completed, everything looked fine. They have scheduled his Bone Scan for 1pm today, and his CT Scan following that at around 3pm. His MIGB Scan will be done tomorrow. Please pray hard that all of these tests will come back, and no cancer will be present in his body. These tests will be very important, and tell us how far we have come since October. We hope and pray with faith that God has already done his work and there will be no evidence or sign of cancer anywhere in Taylor's body.

 

March 2, 2003

 

Taylor spent most of the day with Pa-Pa and G-Mom. After Pa-Pa went to work, Aunt Jeanna came by to stay, while we got some laundry done at the house. He had a very good afternoon nap, sleeping for almost 3 hours. After waking up, he was a little cranky, but finally got into a good mood. We walked back over to Children's Harbor and showed mommy how to count cars on the street. Every car that went by was number five. Tomorrow, we will find out if they will be able to do some of the tests that are scheduled for next week. They should be able to move the CT Scan, Bone Scan and MIGB Scan up, and also the dental and hearing tests. This will only leave us with the bone marrow biopsy and urine/kidney test for next week.

 

March 1, 2003

 

Kim and I went to give blood today at the Blood Drive Weatherly. Isn't giving blood such a wonderful experience? I always feel really great after giving blood (well, I usually always black out after giving blood, but then feel good about myself). After recovering from my blackout spell, we left to go back to the hospital. Thanks to Gram for keeping Taylor, and thanks to G-Mom for coming later in the day to help out while mommy takes another girls night out. Taylor also received a transfusion of platelets, which should help him feel much better, and help his counts rebound faster.

 

Taylor spent all of yesterday snoozing in clinic while we waited for a room. The hospital was full, but thankfully we made it 4-tower. Taylor was a little puny and slept a lot. He did however perk up when he caught a glimpse of a new riding toy. He has now taken of a one day surgery car, they can have it back in a week. We took off on a little adventure. The hospital was having a logo sale and it was across the street from the Children's Harbor. I thought Taylor would enjoy the walk and he did, but we never made it to the sale. As we went across the cross walk he noticed the men working and that is where we spent the next 30 minutes. They waved at him and pulled some buckets up with ropes. He was fascinated by it all. He loves to see  all of the dump trucks and back hoes that they work with.

 

Mommy had a girls night out with a few of the nurses. Thanks girls for the invite. I needed that!

 

Taylor received a unit of blood and the pre-medication knocked him out for the night. He was up early this morning ready to vroom-vroom. He seems to feel a little better already. If he eats and drinks enough he will not have to be hooked up to IV fluids all the time. We will also be doing most of the tests we had scheduled for late in March this week. Yeah, at least there is some good in this hospital stay. If you haven't yet, we added a history page, where you can read back all the way from August on our little journey to this point.

 

Back To Top

 

February 28, 2003

 

Taylor started running a fever last night around 9PM. The doctor on call did not want to bring him into ER unless necessary. He wants to hold off until this morning to bring him into clinic. We will monitor him throughout the night (today was updated late last night, fyi) 

 

We have added two new links to the front of Taylor's page. The first new link is an news article link, where you can find news articles that Taylor has been in. The second, is a history link, that will take you back to the first days, when Taylor started limping, leading all the way up to his diagnosis, and surgery. A lot of people who follow this page, don't really know the full story behind what we went through in order to get the correct diagnosis. I even sometimes doubted Kim for taking Taylor to the doctor so many times. I guess I doubted her due to the way the doctors treated us. They seemed to treat us like we were worrying too much over such little things. If not for Kim, it could have been months more before we learned of our fate, Taylor's fate. We sometimes get mad just thinking about how stubborn the orthopedic doctors were, and how they ordered the same three tests time after time after time. I glad she was so persistent. I hope you enjoy the little flash back, I know it was difficult for her to think back, and put into words what was so tragic for the both of us.

 

Weatherly Children's Learning Center in Alabaster will be having a blood drive Saturday from 10-3. It is also in Taylor's honor. Thank you Weatherly!!!

 

Please pray for Alexis , Austin, Sophie, Liam and the Bullion's. Please remember all the kids with Neuroblastoma too...Taylor, Sophia, Jackson, Morgan, Chris, Cam, Jacob, Grace, Sarah, Henry, Jake, Harrison, Rayshawn, Trey, and Jay. Also, remember the Harrison Family.

 

February 27, 2003

 

We just got Taylor's counts back. They are......... WBC-200, PLT-38,000, ANC-20, 10% neutrophils.  That means that he only has 20 white blood cells that can fight infection. That is not good. So, this will be a slow weekend. They expect to see him over the weekend with fever. I hope we can go tomorrow or Monday. I really do not care to ever see the ER again. I hope to prove them wrong and not get neutropenic, but I also want to get those tests over with now so we can go on vacation. Oh well, I guess we will just have to wait and see what happens.

 

Taylor has played pretty good today. He is slowing down some. At least he doesn't make such a big mess! He has wasted an entire pack of saltine crackers. He takes a bite and says "broke" and throws it away. What do you do? If you tell him to stop, he will get mad an quit eating. I guess we will have to just live with the wasted crackers. He is sleeping now and looking just as cute as can be.

 

Weatherly Children's Learning Center in Alabaster will be having a blood drive Saturday from 10-3. It is also in Taylor's honor. Thank you Weatherly!!!

 

Please pray for Alexis , Austin, Sophie, Liam and the Bullion's. Please remember all the kids with Neuroblastoma too...Taylor, Sophia, Jackson, Morgan, Chris, Cam, Jacob, Grace, Sarah, Henry, Jake, Harrison, Rayshawn, Trey, and Jay. Also, remember the Harrison Family.

 

 

February 26, 2003

 

 Today has been a restful day. It is so gloomy outside and I think Taylor notices too. He slept until 10:15 this morning. I guess his counts are beginning to drop. He is still playing and eating fine. He now knows how to put discs in and out of the DVD player, so we watch about 15 minutes of every movie we own. It's a blast!  Taylor has several new interests. He really enjoys matching things. If he sees something and he knows he has a toy that matches he runs to get it and screams "a match, a match".

He is also into fire trucks. He loves them, but it isn't making him want to sleep in his fire truck bed!!

 

Yesterday was a big day for mommy. She got her hair all cut off. It is the shortest it has ever been (at my ears). It will take some getting used to and some practice fixing it, but I like it.

 

Thank you to all the Amsouth employees who gave or are giving blood. We appreciate it and so do all the other families out there in need of blood. We apologize to those of you who past out:)

 

Please pray for Alexis (who is having surgery today), Austin, Sophie, Liam and the Bullion's. Please remember all the kids with Neuroblastoma too...Taylor, Sophia, Jackson, Morgan, Chris, Cam, Jacob, Grace, Sarah, Henry, Jake, Harrison, Rayshawn and Trey. New prayer request: Glenn Harrison (Kim's uncle's brother) had a stage 4 brain hemorrhage, and he and his family could use the thoughts and prayers.

 

Let me clarify who Glenn is, after writing that I realized it made no since. Glenn is My aunt's brother in law. That really is my uncle's brother, but that was confusing! Anyway, he past away last night after being in a coma for over a week. Please remember his wife and son, Cindy and Taylor, as well as the rest of the family in your prayers.

 

February 25, 2003

 

A new photo album can be viewed here, same pictures as above, just a new and different format!!! Please tell us what you think of the new photo album. Taylor's Protocol has been updated to include all the tests and dates that will be performed prior to stem cell transplant. It kind of killed any vacation chances that Taylor might have had.

 

February 24, 2003

 

The nurse came by to check Taylor's CBC (complete blood count). They should start to drop sometime during the first of this week. Pop and Pappy came by to visit, Taylor had fun running around the house showing who is in charge. We have updated the Special Thanks page (somewhat) and have added 18 new pictures. The last two pictures, we have gotten a lot of questions about his surgery and where the tumor was removed. The last picture is his scar from surgery. The second to last picture is a picture of his "noodles." These are his broviac lines, and these are how the chemotherapy drugs are delivered to his body, how blood is drawn from his body, and for other things such as IV fluids and antibiotics. The lines go into his chest and run up under his skin to his neck, where they enter the large artery in his neck.

 

My work (Amsouth Bank) will be holding a blood drive (for Amsouth Employees to donate) in honor of Taylor on February 25 & 26. The times are as follows: February 25th - Downtown AHP-UL Auditorium 8:30-4:30, February 25th - Op Center 10:00-3:00, February 26th - Riverchase Private Dining Room 9:30-4:00. For more information, or to schedule a time to give blood, you can contact Julia Gordon. Here is an article the Red Cross did about Taylor: (http://www.redcrossalabama.org/news/news030116.htm).

 

February 23, 2003

 

Wow!!! What a turnout today! The goal for today was 30 people, and I believe 45 people were able to give today, and they turned away 7 people. They were able to meet their two-day goal of 70 people. Thanks to all the people that took time out of their day to come out and give blood. Taylor got to come out today for about an hour, and then went home with Gram. I would like to thank Eastern Valley Church and Brad for sponsoring the blood drive in conjunction with Xi Beta Xi, and I would also like to thank Xi Beta Xi for the volunteers that were there to help out. Thanks goes out to everyone that donated blood, and I would like to point out a few people. To all the men from US Steel that came out Saturday to give blood before you had to go into work, thanks! To Sonya and her mom, for driving all the way from Springville to give blood, thanks! To Dennis and Leigh, for driving all the way from Calera for Taylor and to give blood, thanks! To Jessie, who drove all the way from West Blocton, thanks! To all the people who came out, to learn that you could not give for various reasons, thanks! To all of my old classmates that came out (Jessie, Blake, Dennis, & Wes) it was great to see you, and I really appreciate all the thoughts and prayers. I would also like to thank all of the American Red Cross workers, we appreciate what you do on a daily basis.

February 22, 2003

The weather had a damper on the blood drive today. But it did not damper the mood that Taylor was in. He stayed for all of the blood drive, and we appreciate all the people that came out to give blood. They had to turn away about 17 people today, including Pa-Pa and G-Mom. They went on a cruise and spent 2 hours in Honduras, and can not give blood until October. A couple of other couples that went with them also could not give blood. Hopefully the turn out will be better tomorrow. The goal for today was 40 people, and while 28 people were able to give blood, they turned down 17 for various reasons. Thanks to all the people that did come out today and give!

We were discharged around 10AM. We had a nice talk with Dr. Lucas and got all the details of the drugs Taylor will receive before transplant. It doesn't sound as scary and hard as we thought, but I know we have some rough days ahead.

 

February 21, 2003

 

Today was a very fun day. Taylor was feeling great and running like a mad man. His LAST bag of chemo finished up around 7:00 and we headed to the Children's Harbor to play. He had a great time stacking blocks. Taylor enjoyed his peet-peet in the family lounge tonight. I guess he needed a little change. We were at the nurses station until almost midnight. He was a showboat, flexing muscles, making faces, wearing daddies glasses. He finally had to give in and go to bed. He slept very good. We had no interruptions since he was technically done with treatment. Taylor's dare devil attitude finally caught up with him. He decided to stand up while riding his bike and went right over the side. He ripped the tape from his line, but thank goodness for stress loops, his lines are still intact.

 

Don't forget the blood drive tomorrow 1-6 and Sunday 1-4. Taylor will be there Saturday!!

 

February 20, 2003

 

Still no problems with the chemotherapy. He will finish his last bag of cytoxan tonight, and should be through with doxorubicin and vincristine tomorrow night around 9pm.We also have his stem cell schedule. He will have some tests run the week of March 9 (Bone Marrow Biopsy, Bone Scan, CT Scan, MIGB Scan, and 24-hr urine/kidney test). If Taylor goes back into the hospital with fever, they will try to schedule the Bone, CT and MIGB scan then, that way he will only have the 24 hr urine and bone marrow biopsy during the week of the 9th, and it will not cut into our vacation that much. He is scheduled to go into the stem cell floor on March 24. Chemotherapy will start March 25th and run through March 28th. He will then have 3 days of rest, with the transplant on April 1st. More about the transplant and drugs he will be taking will be posted later.

 

February 19, 2003

 

Taylor is doing great with this round of chemotherapy. While he hasn’t gotten sick from his chemotherapy, he did throw up earlier today. As everyone knows, Taylor loves cheese, so Kim and Gram ordered Taylor a stuffed crust cheese pizza, which to him is “peet peet”. Well he was so excited to be eating peet peet, that he was stuffing cheese into his mouth faster than Gram could rip it into small bite size pieces. Well a piece got stuck in his throat, making him gag, so up came all that cheese. After that, he laid down, but when he realized there was cheese in the crust, he jumped up, yelled out “cheese” and proceeded to stick his finger into the crust and waive it around in the air!

 

February 18, 2003

 

It is very hard to see your son so full of energy and feeling so good, lying there in bed getting all these terrible drugs that will make him sick again. He is such a little trooper. His chemotherapy started last night at around 9PM. During this cycle (cycle 6) Taylor will be getting Vincristine, Doxorubicin, Cytoxan, and Mesna. He usually gets sick about 9 hours after starting which will be sometime tomorrow morning. Because of the late start, this will push us back to Saturday before we can go home. Taylor will also be getting a transfusion of blood tomorrow morning because his hematocrit is so low (Don't forget the blood drive Saturday and Sunday, a map and information are posted on the "How to Help" page). NBC-13 news called the hospital yesterday and want to do a news segment about Taylor. They are coming tomorrow sometime around 3PM. We are not sure when it will air, or what it is about, but we assume they will be covering the blood drive this weekend. After this last round of chemotherapy, after his counts rebound back up, Taylor will be admitted back to the hospital to run every test that they did when he was diagnosed. This will be important, very important, and will tell us if there is any cancer still present in his bones or bone marrow. No matter what the outcome of the tests, he will still go through with his Stem Cell Transplant and radiation treatments. If you would like to see the rest of his protocol, you can do so by clicking here. We are planning to take Taylor on a trip before his transplant, but we will have to sit down with our doctors and nurses to see if we can push those tests back a few days. We were looking to go March 7-16, but Dr. Berkow wants to run all those tests (CT Scan, Bone Scan, MIGB Scan, Bone Marrow Biopsy) on March 11 &12. Hopefully we can push those back to March 17 & 18, but we will see.

Please remember Austin, Alexis, Sophie, Liam, Nathan and the Bullion's. Please remember all the kids with Neuroblastoma too...Taylor, Sophia, Jackson, Morgan, Chris, Cam, Jacob, Grace, Sarah, Henry, Jake, Harrison, Rayshawn and Trey. New prayer request: Glenn Harrison (Kim's uncle's brother) had a stage 4 brain hemorrhage, and he and his family could use the thoughts and prayers.

Don't forget the blood drive Saturday (1-6) and Sunday (1-4). If you wish to give platelets, you will need to call the Red Cross to make an appointment. They won't have that machine at the church. Also, my work (Amsouth Bank) will be holding a blood drive (for Amsouth Employees to donate) in honor of Taylor on February 25 & 26. The times are as follows: February 25th - Downtown AHP-UL Auditorium 8:30-4:30, February 25th - Op Center 10:00-3:00, February 26th - Riverchase Private Dining Room 9:30-4:00. For more information, or to schedule a time to give blood, you can contact Julia Gordon. Here is an article the Red Cross did about Taylor:(http://www.redcrossalabama.org/news/news030116.htm).

February 17, 2003

 

We spent a fun day at home playing. Ca-Ca was off and he helped us make a mess in the living room. We had lots of people come over today. Miss Tammy came and drew labs and pop came over to play for a while. Papa and G-Mama brought dinner and helped Ca-Ca work on the room. We cleaned up the house and  packed for the hospital. Taylor's counts were... WBC 3,600 and PLTS 90,000. His hematocrit was only 21, so we will more than likely get a transfusion tomorrow. We are off to clinic tomorrow morning and we expect to come home on Friday. It is very odd, but I am sad that this part is over. Not sad that treatment is over, but sad because now this is my "normal" and now I will have to get a new routine. Plus, we have made so many wonderful friends with the staff and families on 4-tower. I guess we have one more neutropenic visit to look forward too:) We hope to find out which way we were randomized for the antibody treatments and a more detailed schedule for the stem cell transplant. We will pass all of that info along as soon as we know. We will also be scheduling a lot of testes tomorrow. After this round of chemo Taylor will get a day of tests like the day he was diagnosed. They will compare all these test results to see how far he has come since October.

 

Please remember Austin, Alexis, Sophie, Liam, Nathan and the Bullion's. Please remember all the kids with Neuroblastoma too...Taylor, Sophia, Jackson, Morgan, Chris, Cam, Jacob, Grace, Sarah, Henry, Jake, Harrison, Rayshawn and Trey. 

New prayer request: Glenn Harrison (Kim's uncle's brother) had a stage 4 brain hemorrhage. I am not sure what that means medically, but I now he and his family could use the thoughts and prayers.

 

Don't forget the blood drive Saturday (1-6) and Sunday (1-4). If you wish to give platelets, you will need to call the Red Cross to make an appointment. They won't have that machine at the church.

 

February 16, 2003

 

We had a nice Sunday. Almost normal. We went to Sam's and Lowe's and then to McDonald's for lunch. Taylor fell asleep in the car and lucky for mommy he didn't wake up when she moved him to the bed!! Taylor slept in his bed again last night. He didn't do as well this time. He woke up at 2:15 looking for "mine" and realized where he was and got all freaked out. We will have labs drawn tomorrow and should know by tomorrow afternoon rather we will or won't have chemo on Tuesday.

 

Don't forget the blood drive Saturday (1-6) and Sunday (1-4). If you wish to give platelets, you will need to call the Red Cross to make an appointment. They won't have that machine at the church.

 

Please remember Austin, Alexis, Sophie, Liam, Nathan and the Bullion's. Please remember all the kids with Neuroblastoma too...Taylor, Sophia, Jackson, Morgan, Chris, Cam, Jacob, Grace, Sarah, Henry, Jake, Harrison, Rayshawn and Trey. 

 

 

February 15, 2003

 

Let me start by saying that Taylor slept in his OWN bed last night!! We had a very busy day today. We went to the circus at the galleria. Taylor got bored half way through it and we left. We rode the big green frog on the carousel. He also got to go pick out a toy from the toy store. He picked a golf cart. Go figure, We are still eating great. He had chick-fil-A while we watched the circus. Once that was over mommy and daddy wanted Olive Garden and Taylor did too. He ate pizza, salad, and mommies noodles. It was so nice out today that Taylor got to play outside a little. He rode his gator and his bike. He helped Daddy pick up leaves and he kicked a huge ball all over the yard. We attempted hop scotch, but he is not a good hopper. 

 

Mommy ran into several of the kids she use to teach. It was great to see you Abby and Taylor!!! Mommy also had a spa appointment today only to get there and  them have no record of it. I had to reschedule for next month. I will really need it by the time I get there.

 

Don't forget the blood drive is this Saturday (1-6) and Sunday (1-4) at Eastern Valley Baptist Church.

 

Please continue to pray for Austin, Alexis, Morgan, Sophie, Liam, the Bullion's and all the others out there going through hard times.

 

February 14, 2003

 

Happy Valentine's Day!

 

Field trip! Taylor and I went to the hospital just to visit and give out all his Valentine's Day cards and candy. He had a blast being there for no reason. He was full of hugs and kisses and enjoyed showing off his new heart necklace and Cancer bear. We also went to eat with daddy. I bet you can't guess what he ate? A cheese pizza minus the dough! We met a new friend today. His name was Emerson and he goes to Weatherly. It was nice to meet him and his family, We hope their visit was quick and painless. Taylor got some cool trucks from the book fair at the hospital. Mommy is very tired, but seeing as Taylor caught a power nap in the car, she wont be getting a nap today. 

 

Please keep Austin, Alexis, Morgan and the Bullion's in your prayers. Also, remember little Sophie. She is done with her inpatient but still has over a year of treatment left. Her mommy had a baby boy yesterday. His name is Liam. He has a small heart problem that should clear up within a year with medicine. Please pray for his healing as well.

 

February 13, 2003

 

Mommy got to be the patient today. I went to the Doctor for my sinus infection. It took forever, but I finally saw the doctor and got a cortisone shot and 2 other prescriptions. Just a touch of humor.....I got my shot with an 18 gauge needle. For those of you that are lost right now, you don't want to know. The rest of you are laughing as was I when she gave it. I am already feeling much better. Taylor had labs drawn again today. It was supposed to be canceled, but since they called we told them to come on with hopes of starting chemo tomorrow. No such luck. He is getting there....WBC 3,500 PLT 33,000. Platelets need to get to 75,000 and it is looking good for Tuesday. I know you are all wondering why the WBC is good though it is lower than Monday. That is due to stopping the shot. Without the growth hormone to help him grow the cells he dropped back off, but to have 3500 on his own is great! That is also enough for him to get out and about this weekend. We plan to head back to the mall and get him out of this house. We finally cleaned up the living room!! Although you can't tell it now. No, not really. Daddy had his own method today. He put the baby gate up blocking the hallway. Taylor couldn't go past it to the play room until he piled all the toys he had out in front of the gate. It seemed to work well.  

 

We wish you all a happy Valentine's Day. Hopefully Cupid has given you all the love you wanted. Please continue to pray for Austin, Alexis, Morgan, the Bullion's and all the others out there dealing with unfortunate circumstances.

 

February 12, 2003

 

Last night Taylor lost his tube in his right ear. I wont even tell you how gross it was!! The Doctors said it was fine since he has had it for 15 months and all we need to watch is the hole healing properly and of course infection. Depending on how he does with infection they will decide if he needs a second set. Probably not since he rarely goes outside or in public. The house is looking more and more like a tornado hit it and for whatever reason, mommy just doesn't care this week.

 

Please pray for all of our new and old friends dealing with cancer. Remember Austin as he starts the next part of his journey and Morgan as she enters the stem cell unit.

 

February 11, 2003

 

Taylor has had a normal Tuesday. Mommy is not feeling well and hasn't felt like picking up, so 2 days of toys are all over the place. Oh well, we will think about that another day. We got our picture of Taylor back today. It looks so great hanging over the fireplace. There is really nothing new to report. We slept later than normal after the busy night last night. He ate like a pig again. 2 pieces of cheese toast for breakfast and dinner consisted of a bowl of oatmeal and 2 pieces of pizza. We did manage to get 3 glasses of milk in him rather than all tea.

 

please continue to pray for all our other friends dealing with cancer. The Bullions, Alexis, Austin and Morgan. Austin should be leaving the hospital tomorrow and going to Hope Lodge for a few weeks. Way to go Austin!!! Morgan goes in to Duke tomorrow to get ready for her stem cell transplant.

 

February 10, 2003

 

Taylor's  nurse just left. She drew his labs and agrees that it is very unlikely he will be admitted tomorrow. Keep your fingers crossed, we really want to get this last round over with. We will update today more later.

We just learned that the Build-A-Bear workshop has a childhood cancer awareness bear named Nikki Bear. It is named for a young girl who lost her battle to cancer. It comes with a childhood awareness pin and $1 of the cost goes to childhood cancer society. If you are going to build a bear please consider this purple Nikki Bear.

 

We have good news and bad news. Taylor has a WBC of 15,000 meaning we can stop the neupogen shot. However, his platelets are 18,000 and have to be 75,000 for chemo. we will get blood drawn again on Monday and try for chemo next Tuesday. This is exactly what happened in December, so we expected it.

 

Taylor got yet another night out on the town. We went to the Galleria for the first time since October. He was in heaven. He was a little upset that he couldn't sit in the big race car outside the Nascar place. We just happened to run into G-Mom and Papa. He was so so excited to have them and the mall he was just giddy. We went to build a Nikki Bear and Taylor had a blast. He was a little afraid of the stuffing machine so daddy did that, but he loved bathing her and brushing him. Once again he ate like a pig on some Chick-fil-a. He rode the carousel about 3 times. He had so much fun. We use to spend a lot of time at the mall before he was diagnosed, so I know he missed it. I feel nervous about taking him out, but when I see how much fun he has, it is all worth it.

 

February 9, 2003

 

Taylor had a fabulous Sunday. It was nice out so we took off to Wal-mart. He picked himself out some Scooby sun glasses and heart stickers. He really enjoyed being out. We ran into one of the parents of a child I use to to teach. She was in the middle of trying to get him a present, so he got to pick out even more stuff. She didn't have to do it, but it was very nice. It was great to see you Cheryl. After Wal-mart we headed to Taylor's favorite place to eat, Golden Corral. He hasn't lost his ability to get his monies worth there! He ate and ate. Jim and I were finished and plates gone and he was still going. He ate 2 helpings of corn and green beans, a yeast role, rice, pizza, and ice cream. Hopefully that is another pound! He was very tired, but he needed that little get away. He had a blast. When we got home we had some more company. Chris, Temperance, and Christian came over. Taylor was very interested in the baby, He even let me hold him. He didn't go far, but he never protested my holding him. 

 

February 8, 2003

 

Taylor had some visitors today. Papa and G-mom came to play while daddy worked on the new room and mommy went shopping. He is starting to really fight us on cleaning his site and getting his shot. I guess he is just getting tired of doing it. Can we really blame him? We need to thank Amanda and Mackenzie for helping us out Saturday. They delivered a cool train and Taylor busied himself with that instead of worrying about what I was doing to his central lines. Thanks guys!!  Don't forget the blood drive February 22nd and 23rd at Eastern Valley Baptist church. Xi Beta Xi bought a very cute book about a little girls journey with cancer. It is written in her words and illustrated child like. They have put a sticker in the front cover with Taylor's name on it and we will donate them to the hospital to give to newly diagnosed families. I know little gestures like that meant so much to us and it is great to be able to help others. Thank you Xi Beta Xi.

 

February 7, 2003

 

Taylor's clinic visit was good. He weighed over a pound more than Monday. I guess the 6 biscuits, 2 pieces of cheese toast, 1 grilled cheese, and 2 cups of apple sauce he ate on Tuesday paid off. He did not need blood as he had a hematocrit of 25, WBC of 1,??? and platelets were 20,000.  We had a short visit in the clinic and that gave us time to visit 4-tower. Taylor has come so far since October. He went with a nurse to another wing of the hospital to get some stuff and never thought twice about me. His clinic visits are drastically different as well. We used to have to weigh ourselves then weigh holding him. Now he walks in taking his shoes off and jumping on the scales, taking his arms out of his shirt and holding it up for the blood pressure cuff and thermometer and he knows right where the suckers are when it's all over. There is always one in the flavor he likes seeing as he is the only 2 year old on Earth who likes root beer dum-dums. We are scheduled for chemo on Tuesday, but we do not expect his counts to be high enough. We will have home health check counts Monday and see if we are high enough to go in or wait a while. The last time he received this chemo he was pushed back a week for the next round, so this isn't a big shock.

 

Please pray we can have chemo as scheduled and keep our vacation plans as are. Please remember Alexis, Austin, Morgan and the Bullions in your prayers.

 

February 6, 2003

 

The nurse called late yesterday afternoon and decided that it would be best for Taylor to come into clinic today for his blood work. That way, if he does need a blood transfusion, he can get one today and not have to come back on Friday. We also have to pick up another prescription of G-CSF, so it will work out for the best. Taylor is eating a lot here lately, which is a very good sign. Back in August before all of this, Taylor weighed 27 pounds. Well, 7 months later, he is 2-3 inches taller, but only weighs 25 pounds. Our nurse said if he doesn't start eating better and gaining weight, he may have to go back on a feeding tube, which Taylor does not like. Hopefully he will continue to eat and gain weight. If you haven't done so yet, make sure you sign Taylor's guestbook, and if you would like to send Taylor a card or personal note, his mailing address is listed on the front of the page. Don't forget the Rick and Bubba Blood Army Blood drive this Friday, and Taylor's blood drive Feb. 22-23 (Map). Amsouth Bank is also holding a blood drive on Feb. 26 in Taylor's honor, so thanks to Amsouth for doing this, and all the wonderful emails we received yesterday. We found 5 more direct donor matches, which we will greatly need in March during his transplant.

 

February 5, 2003

 

Taylor had a great day yesterday, mommy on the other hand is exhausted. Taylor made teh biggest mess ever and not just the living room. We have a line of jeeps in the bathroom all the roofs to the jeeps are in the other bathroom. We bought new storage bins for the playroom and guess what? He dumps everything out of them and sits in them. Oh well, I wouldn't trade any of it for the world. I am so thankful that he feels well enough to destroy my house. We are starting to make some plans for our trip. We can't wait. Please remember Alexis, Austin, Morgan and the Bullions in your prayers.

About Blood Donations: If you want to be a direct donor for Taylor, you must be O Positive and CMV negative. He can take either RH factor (positive or negative) so that will not matter. He can not take O negative blood even though it is the universal blood type. Giving him a different type of blood will change his blood type, which the doctors do not want to do. If you have given blood before and know you are O positive, but unsure of your CMV type, you can call the Red Cross at 918-1000 and they can tell you your CMV type. If you do match Taylor and want to be a direct donor for blood or platelets, please email us and we will include you on our direct donor list, and inform the Red Cross that you will be a direct donor. Then when the need arises, we can contact you to go in and donate for Taylor. To find out more about platelet donations, you can go to this website: http://www.redcross.org/services/biomed/blood/learn/apheresis.html.

Don't forget the Rick and Bubba blood drive this Friday and Taylor's blood drive Feb. 22 and 23 at Eastern Valley Baptist Church..

 

February 4, 2003

 

Taylor is rebounding from his low platelet count. Last night, Taylor and I went to get mommy some dinner while she took a nap. He enjoyed the time out, even if it’s sitting in the car. He likes looking at the bright lights at night, and really loves all the bumps in the road. Every time we hit a bump, he would speak up in the back with “bump, bump, bump.” Once again, let me stress the need for people to donate blood. You have a great opportunity this Friday to do so. The Rick and Bubba Radio Show will be hosting a Rick and Bubba Army Blood Drive Friday, February 7, 2003. Click the link for a time and location near you, and go out and give the gift of life! We will also be holding a blood drive, and here is some more information on it:Eastern Valley Baptist Church and Xi Beta Xi have received a confirmation for the blood drive that will be held in Taylor's honor. The dates will be Saturday February 22 from 1:00 PM till 6:00 PM & February 23 from 1:00 PM till 4:00 PM. The address for Eastern Valley Baptist Church is 1216 Potter Avenue Bessemer, Alabama and the phone number is 428-8211. For those that are interested in hosting a blood drive, here is some more information about how you can hold your own blood drive.

 

February 3, 2003

 

Taylor woke up early this morning (if you call 8:00 early) to greet the home health nurse, that was suppose to be coming promptly at 8AM. She did not show up, but Taylor’s nosebleed was a lot worse, and everytime he sneezed, he would have severe nosebleeds. Kim called our nurse, and she said to come on into clinic, where they will check his blood counts, and he will more than likely get a blood transfusion and a platelet transfusion to help boost his body and blood counts. He has little bruises all over his body from where he bumps his head and arms from time to time. Hopefully they will not have to keep him in-patient, and we will be able to go back home today.

 

February 2, 2003

 

Taylor had another great day. The end of the day turned out a little on the downside, but he played hard the whole day. He did not take a nap until about 8:00 PM. He was worn out. The effects of his low platelets really started to show later in the day. He started getting nose bleeds around 3:00 PM, and later that night, after his G-CSF shot, it took over 3 hours for his leg to finally clot. We called the nurse, but they said just to hang in there until tomorrow morning, until his blood work is drawn to see where his counts stand.

 

February 1, 2003

 

It has been a fun day. Taylor played outside for a little while. He played on the swing (sing as he calls it) and the slide and rode his Gator. We played in the garage while daddy worked on the room. Taylor rode his bike and played with side walk chalk. It was nice out and we hated to not let him go out, but we really don't need an ear infection. He has very low platelets we can tell. He is getting the little tell-tell purple dots. Hopefully it will just mean a clinic visit for a transfusion and nothing more. We all rode to Lowe's. Taylor and I sat in the car while daddy went in, We asked Taylor what he wanted for dinner and he said......cheese. (I bet you didn't guess that) Well, we aim to please so we went to Sonic and got a grilled cheese sandwich with a slice of cheese on the side. He was very happy with that. We have one more week at home. I hope it goes SLOW. We are in the works of planning our vacation. We are so ready. Please remember in your prayers: Alexis, Austin, the Bullion family, Morgan and Chris ( some other friends with Neuroblastoma), the crew and families of the space shuttle Columbia, and all the other kids and families out there dealing with hard times,

 

Back To Top

 

January 31, 2003

 

Well it is the end of January. What a month it has been . It was full of ups and downs. I can't wait for February. It will bring us the last round of Chemo and a much needed vacation! I had a Morningstar Coworker draw us a picture of Taylor. I picked it up last night. It is beautiful. Thanks Lisa. Please keep Lisa and her family in your prayers. Her husband has cancer. He is having a biopsy on some liver spots today. Lets pray for the best. As for Taylor, he is doing good. His counts seem to be dropping faster than in December. We hope to stay home the whole month. He has no more eyelashes on his left eye and about 4 on the right. It took along time for those to fall out and he didn't help by pulling them. It was almost as sad to see those long lashes go as the hair on his head.

On a funny note... Taylor got a baby dirt devil for his birthday and he cracks us up knowing how to use it. yesterday topped it off. He was eating baked beans (that he begged for) in the kitchen floor. He dropped a bean on the floor and then jumped into cleaning mode. He ripped his bib off and took off down the hall. I didn't know what all the commotion was about. He came back with his vacuum cleaner and tried to suck up the bean.

 

January 30, 2003

 

Update: Taylor's ear is fine and he will not have to stay at the hospital. His platelet count is 13,000 and WBC is 2000, so no need for blood or platelets right now, even though he is still pretty low.

On my way to work this morning, listening to FM 102.5, I heard Keith Jordan from the Red Cross come on about the need for blood donations again. We still need people to go out and give blood. The website for the Alabama Red cross is http://www.redcrossalabama.org You can find out where the nearest blood drives are in your area. On a side note, Taylor will have to go into clinic today because his ear looks infected, meaning he could possibly have to stay for in-patient care. They will also look at his blood counts, so he could need a blood or platelet transfusion as well.

January 29, 2003

 

Taylor had a busy day today. We played with some new puzzles. One was a little to advanced and he got very upset with it. He is still playing fine, but doesn't seem to feel just great. I hope we get past the blahs without a hospital visit. He is eating a little better. He had 4 packs of oatmeal and some corn. He still isn't drinking very well. Maybe about 6oz all day. He got a cool present today. A fish tank and 3 fish!! He loves it. We named our fish too. Bubbles is black and orange and looks kind of polka dotted. Dorothy is orange like Elmo's fish. Taylor calls it La La because of the Elmo's World song. The Algae eater is named Frog because for some reason he thinks it is a frog. New pictures have been posted!!!

 

January 28, 2003

 

Taylor had another great day at home. His platelet count is a little low, but he is doing ok. We just have to be careful when he is running around the house. I found this website (Bone Marrow Transplants) on Bone Marrow Transplants which answers a lot of questions. With his transplant coming up soon, we wanted to get as much information as possible so that we will be prepared for what lies ahead. Eastern Valley Baptist Church and Xi Beta Xi have received a confirmation for the blood drive that will be held in Taylor's honor. The dates will be Saturday February 22 from 1:00 PM till 6:00 PM & February 23 from 1:00 PM till 4:00 PM. The address for Eastern Valley Baptist Church is 1216 Potter Avenue Bessemer, Alabama and the phone number is 428-8211. For those that are interested in hosting a blood drive, here is some more information about how you can hold your own blood drive.

 

January 27, 2003

 

Finally Chris and Temperance had their baby boy. He weighed 9lbs 4 oz and was born today around 5:00PM. I will get specifics later, but mommy and baby are doing fine. Taylor has been great today. It is amazing how fast he picks up on stuff. I had to screw a picture to the wall, and I went to get my box of screws and bolts. He went crazy, and ran off to his room. I did not understand what was wrong, but he returned a few seconds later with his box of play screws and bolts. He got his hammer and saw and helped me fix a few things around the house. He is also starting to put words together to make sentences. He is also now craving biscuits. He has eaten 3 or 4 at a time. I guess his cheese cravings are starting to die out, thank goodness!

 

January 26, 2003

 

We had a loud Sunday at home.  Daddy had several projects going such as our new storm doors. We had visitors in and out and then there was Taylor! We still have toys all over. Taylor has what looks like the beginnings of thrush which could account for his not eating. We already have the magic mouthwash needed to treat the thrush if it is thrush. Hopefully we can fix it before it gets too bad. We only have one more chemo. I can't believe it. I still vividly remember that awful October day he was diagnosed. I remember thinking we would never make it. We did though and it has not been near as bad as we expected. We know it is because of our wonderful support system and the wonderful people at Children's Hospital. Temperance is finally going in tonight to have her baby. It's about time, Christian. Please continue to pray for Taylor as we end this step and start the next step of his protocol. Please continue to pray for Austin and Alexis and all our other friends on 4-tower. Also, pray that Temperance has a happy healthy baby after a safe delivery.

 

January 25, 2003

 

Taylor got to come home today at about 11 AM. As many times before, a clean living room turns into a train wreck really fast. It did not take him long to pull out all his toys to play with. Sometimes, I am at a loss of words. Its so hard to see Taylor going through this terrible battle with cancer. So many things come to mind. It's impossible to try to figure out why, but I find myself asking that one question over and over again. He is so innocent, and does not even know he is fighting a battle, a battle of life. I'm so proud of the way he has fought his way through all the hospital visits, doctors, nurses, needles, chemotherapy, he has been so brave. I look ahead to the bone marrow transplant, and I fear for the drugs and what they will do to his little body. Kim has been so strong through this, taking care of Taylor, being there for him, when I can't. I have so many things to be thankful for in my life. I put my total faith in god's hands, and know he will help us take care of Taylor's needs, and heal his body from this cancer. We still need people to go and give blood. Not just for Taylor, but for all people out there that need blood. It affects so many people, children and adults. The news ran another story last night, and it stated only 3% of all Alabamians give blood. Such a small number. Eastern Valley Baptist Church and Xi Beta Xi have received a confirmation for the blood drive that will be held in Taylor's honor. The dates will be Saturday February 22 from 1:00 PM till 6:00 PM & February 23 from 1:00 PM till 4:00 PM. The address for Eastern Valley Baptist Church is 1216 Potter Avenue Bessemer, Alabama and the phone number is 428-8211. For those that are interested in hosting a blood drive, here is some more information about how you can hold your own blood drive.

 

January 24, 2003

 

Taylor will have to stay the night, due to his chemotherapy will end around 8:00PM, which will be too late to go home, so we will be able to go home first thing in the morning. This chemotherapy, which is the same as round 4, doesn't make him sick at all, and he usually handles it pretty well after its over also. We don't look to have to go back until round 6 starts on 2-11-2003. It was great to see all the people at the support group last night, a really great group of people.

 

January 23, 2003

 

Eastern Valley Baptist Church and Xi Beta Xi have received a confirmation for the blood drive that will be held in Taylor's honor. The dates will be Saturday February 22 from 1:00 PM till 6:00 PM & February 23 from 1:00 PM till 4:00 PM. The address for Eastern Valley Baptist Church is 1216 Potter Avenue Bessemer, Alabama and the phone number is 428-8211. A detailed map and directions will be posted soon, but the church is very easy to find. New pictures will also be posted very, very soon!!!

 

January 22, 2003

 

For those that are interested in hosting a blood drive, here is some more information about how you can hold your own blood drive. Taylor is doing well with this chemotherapy round. This round is a lot easier than the other rounds. The chemotherapy is only for 1-2 hours a day instead of a continuous 72-hour stream of medicine. This allows him to go down to the activity room and play most of the day, which he really enjoys to do. We also do not expect to have to come back to the hospital with fevers. The last round of chemotherapy is scheduled for 2-11-2003, and Taylor should be through with this round sometime on Friday afternoon. We are trying to get some kind of “vacation” for Taylor before he goes into transplant so that he will get a break from this whole hospital thing. We haven’t quite decided where to take him yet. Once the transplant begins, he will be in the stem cell transplant floor for at least a month, maybe more. He will have to stay in an isolation room to help his body fight off airborne diseases he might catch. He immune system will be very vulnerable.

 

January 21, 2003

 

We just go into our room (453) and settled in. Kim got to talk with Dr. Berkow, and he went over some of the same things already posted on here. His bone scan done the other day showed both his femur bones to be clean, but there is increased uptake (incident of cancer) in his cranial bone (forehead). After his sixth round of chemotherapy, he will get to go home, but they will have him back in to do the same tests that were done on 10-10-2002, which will be a bone scan, CT scan, bone marrow biopsy to see where they stand before he starts his bone marrow transplant.

 

January 20, 2003

 

Taylor had a good day today. He helped mommy clean house and wash clothes.  We had blood drawn this morning to see if we could start round 5 of chemo tomorrow. We found out at about 4:00 that his WBC is 3.4 and platelets are 90,000. All is clear for chemo. We also found out he has a lot of monocytes. That means that his bone marrow is healing itself and becoming more healthy!!! This chemo will be the same as the December round. It will last 4 days, but only several hours a day instead of continuous. This one did not make him sick last time and we didn't go in for neutropenia either. Please pray we do that well again. Please continue to pray for Austin, who received his transplant 1/14. He is doing really good. Also, Alexis, she received her bone marrow in early January and is in PICU with breathing difficulties. Please Pray Temperance has her baby soon, we are tired of waiting!

 

January 19, 2003

 

Happy Birthday to Taylor!!! The big 2. Taylor is enjoying his time at home. If you want to wish him a happy birthday, you can do so on his guestbook. If you do want to donate specifically for Taylor, please go donate blood first, and after 5 days, you can call the Red Cross (or wherever you donated) and they will give you your specific blood type, RH type and CMV type. Then, if you do match Taylor, you can contact us to be set up as a direct donor for Taylor. His blood type is O positive, he can have either RH type, and his CMV type is negative. You have to match on the blood and CMV type to be a direct donor. If you do not match Taylor, we do encourage everyone to continue giving blood, because there are other children that we know personally that also benefit from people like you! To read the news articles Taylor has been in so far, you can read them here.

 

January 18, 2003

 

Well, it took about 20 minutes yesterday after Taylor got home yesterday, but it is official, the living room is destroyed with toys. I would like to thank everyone for going out and giving blood yesterday. Kim, Taylor and Pappy got to visit the blood drive at Children's Hospital before they left, and the wait to give blood was over 3 hours, and they finally had to start turning people away. I hope that if anyone of you out there were turned away, you found your way to the Ridge Park Blood Donor Center to give blood there. It is right up the street from Children's. If you were not able to give blood, there will be many more blood drives in the coming days, and Xi Beta Xi and Eastern Valley Church will be holding a blood drive for Taylor, which will be sometime around February 22. I also found out that the Alabama Red Cross did a story on Taylor, which can be found here.

 

January 17, 2003

 

Some really good news. The doctors just come in and Taylor's white blood cell count jumped from 120 to 497, so the doctors are going to let him go home. He has to have a platelet transfusion first before he can go, and they have ordered the platelets and are just waiting for them to come. Taylor still can't have his birthday party because his counts are too low, but at least we will be home over the weekend!

At about 3PM yesterday, Taylor had to get another blood transfusion. We have been talking about the blood shortage, and we saw first hand again how low it is. They had to piece together two different bags of blood in order for Taylor to get the amount of blood that he needed. I really hope the news segments will motivate people to go out and give the gift of life. There is a blood drive today at Children’s Hospital, and one more I know of tomorrow. For information on local blood drives, you can go to the Alabama Red Cross website for a location and time for a blood drive near you. Xi Beta Xi will be holding a blood drive in Taylor’s honor on February 22 & 23. I will post more information on this drive a little closer to that date. Please, if you haven't (or you have, and want to say hi) please SIGN Taylors Guestbook. We would all love to hear from everyone, and Taylor enjoys looking at his website, and reading his guestbook.

January 16, 2003

I have learned that CBS 42 will also be doing a story tonight on Taylor and the need for people to donate blood. I do hope people will go and give blood, you will feel great afterwards! Kim will also be at the blood drive on Southside with Andrea Lindenburg form Fox 6 at 5pm, I believe this will be a live feed.

We received the results of the CT Scan last night. No new tumors! No signs of new disease anywhere in his stomach, which is very good news. Taylor has also stopped running fevers. We look for him to stay in the hospital over the weekend, and they will start his next round of chemotherapy on Tuesday. We were on The Good Day Alabama show on Fox 6 this morning. I would like to thank that station for getting the word out about the need for people to donate blood. If you can give blood, please go to a local blood drive and donate, it truly does help people in need. For information on local blood drives, you can go to the Alabama Red Cross website for a location and time for a blood drive near you. We were also on the Fox 6 and ABC 33/40 news segment last night. I hope this gets the word out to people, and we can increase the low blood supply the State of Alabama currently is in right now.

Everyone has asked about Taylor's blood type. You can find his blood type posted below, under December 22. There is also an explanation of blood types and cmv posted on December 27 & 28. I hope this information helps.

January 15, 2003

Taylor still does not feel good today. I haven't received news of his counts yet, so I will update those as soon as they are relayed to me. As I have said before, when the news of Taylor's cancer first came to us, I wanted to do everything I could to help anyone out there who needed help. I took the liberty to email some news stations this morning pointing out the need for them to continue their news segments about the need for blood donations. The Good Day Alabama show on Fox 6 has asked us to come on and share our story, which will be on tomorrow mornings news segment. If you can give blood, please go to a local blood drive and donate, it truly does help people in need. For information on local blood drives, you can go to the Alabama Red Cross website for a location and time for a blood drive near you.

January 14, 2003

 

Update 12:15PM: Taylor finished his CT Scan. This was his third one and he did ok. They did this scan to look for possible tumors in his pelvis, stomach and chest. Sometimes children with neuroblastoma grow new tumors, so the doctors want to be sure there are no problems that may arise. At 1PM Taylor will have his bone scan. The Nuclear Medicine Nurse came by at 11AM to give him the contrast, a medicine that will allow the bone scan machine to view all parts of his body. This scan will tell doctors if Taylor has any cancer cells in his body, and where they are located. We pray for good news, news that there is no cancer in his body. We are not sure how long it will take to receive the results, but we will post them here as soon as we here word. Please pray that Taylor's CT Scan and Bone Scan are both clear. Taylor is still having fevers off and on, and his mouth sores have worsened. He soaked a pillow last night in blood, because he had no platelets and mouth sores. He is feeling a little better after the platelet transfusion he had last night.

 

Taylor is still running fevers (as of last night at 10:00). His sores were still bleeding, so Dr. Castleberry decided to go ahead and give Taylor a transfusion of platelets. You can tell there is a shortage of blood and platelets, because it took about 4.5 hours for them to come from the blood bank. Dr. Castleberry was trying to let Taylor's own body start producing white blood cells, so that he would not need a platelet transfusion, and his body would be more likely to produce more. There is a tendency for the body to not produce platelets when patients receive a transfusion of platelets. Plans have also changed for Taylor's CT Scan and Bone Scan. They were both scheduled for Tuesday (January 21), but now they will try to get both in tomorrow. We will not know until early sometime this morning if they will be able to fit him into a time slot. We will see.

 

January 13, 2003

 

Update: Taylor has spit up some blood, which doesn't concern the doctor at this point. He is concerned with the fever, because getting a fever this late means he has caught something while at the hospital. His counts finally broke 100, climbing up to 150. Hopefully they will start to increase and the fever will go away. They have gotten some cultures of his blood to see if anything grows in them (checking for virus or infection).

Taylor's fever has been off and on. It peaked at 101, but early this morning, his fever broke, which gave us a sigh of relief. This was due to the Tylenol he finally received. He cannot get Tylenol until his fever reaches 101. Hopefully his body will start producing white blood cells so that it will fight off this fever, and he will get back to feeling better. All day yesterday he would play fine, but would not eat anything, and we couldn't understand why. I guess his fever was setting in and he just didn't feel like eating. We now hope he will at least get to go home before Saturday, because he has a birthday party that day. If you are interested in seeing where he stands on his protocol, you can do so here. We will also be having a blood drive soon, and information will be posted here. As you have probably seen on the news, their is a national shortage of blood, so I encourage everyone to come out and give the gift of life.

January 12, 2003

Taylor started running a fever at about 8:30pm, and he is not feeling very well at all. We pray that his counts will come back up so that the fever will go away. It looks as if we may stay longer than we anticipated in the hospital

January 11, 2003

 

Taylor is doing great today. Still eating pizza. I think he likes pizza so much because of all the cheese on it. I swear he is going to turn into a mouse, because of all the cheese he eats! Last night, gram ordered Taylor the cheese pizza, and he ate 2 whole pieces and the top layer off of three more pieces. Today, he got another blood transfusion to try and boost his blood count levels. They are still terribly low. Just a reminder, we will be having a blood drive with the red cross sometime toward the end of this month, and we should have the exact place and time nailed down soon. If anyone has any great ideas on a good location for the blood drive, please feel free to email us. The red cross will also be giving away free t-shirts at the blood drive, t-shirts that they don't normally give away for these types of blood drives. Kim's grandmother was laid to rest today, may buddy find peace to know she is with God now. We have moved back to 4-Tower, its great to be back over there with all our wonderful nurses. Taylor is in room 450 if anyone would like to stop by and say hello. To see where he is on this protocol, you can see that here.

 

January 10, 2003

 

Taylor is now set up for people to donate blood or platelets at LifeSouth on Oxmoor Road in Birmingham. Anyone who wants to donate for Taylor can go there and no additional paper work will be required. Also, toward the end of this month, Xi Beta Xi will be holding a blood and platelet drive in conjunction with the American Red Cross. More information about this drive will be posted on this page, and on the How To Help Page.

Taylor is doing great in the hospital. We still haven’t been able to move back to 4-Tower, but hopefully today, there will be some open rooms over there. We really miss the nurses over there. The nurses that we have currently are great, they just are not familiar with hematology/oncology children, and are not familiar with their specific needs. We finally received some good news in the midst of everything that has happened. As you know, Taylor’s first Stem Cell Apheresis (harvest) contained too much cancer to be able to use. We received the results from his second harvest that was done on December 23, and there was no detectable cancer before they purged the stem cells. Because there was cancer present the first time, they went ahead and put the stem cells through the purging process for precautionary measures. Back to Taylor, its remarkable how good he his feeling right now. His counts are well below 500, yet he has not spiked a fever yet, and he is eating like a horse. We went to the oncology support group last night, and took him a piece of pizza afterwards. He devoured that piece and wanted more, so I went back to get him another piece. We are just waiting for his counts to come back up so that he can go home. We have had such a long time at home, its really hard to get back into the swing of things, but we all know it will be worth it in the long run. The funny thing is someone forgot to tell Taylor he is sick and has cancer, because if you saw him in action (minus the bald head), you sure can’t tell it! If you would be willing to help fill out a letter to send to the postal service for recommendation for a childhood cancer awareness stamp, there is more information posted below, just look under December 31

 

January 9, 2003

 

Kim's grandmother passed away last night at 11:15. Please keep her family in your prayers, as they go through this trying time. We had a very eventful afternoon yesterday. We had called our nurse early yesterday morning to inform her of Taylor's ear infection. She did not get her message until 5:00 yesterday afternoon, and because clinic was closed, we had to go into the emergency room. Taylor's white blood cell count dropped from 7000 on Monday, to 600 last night. They had to admit him into the hospital for antibiotics. We are in another part of the hospital because the entire hospital is fully booked, and we were fortunate to find a room at about 11:00 last night. We will hopefully be moved to 4-Tower sometime tomorrow, after a room opens up. We miss our 4-Tower nurses. They all do such a wonderful job, and really care about the work they do and the patients they treat. We have met some amazing nurses, and I would like to thank each one of them for the care and love they give Taylor, we are truly blessed to have such a wonderful bunch of nurses.

 

January 8, 2003

Please add Kim's family to your thoughts and prayers. Her grandmother, Frances Shamblin, is not doing well. She may not have much longer with us. As for Taylor it has already been an eventful morning. He ate a whole waffle with GREEN syrup. It was a huge mess, but hey, it wasn't cheese. We are washing "Night-Night" right now and it has broken his heart. He has screamed for it ever since we threw it in. We have to go in every few minutes and manually push the button on the washer so that he can see it go by. I guess the next hour or so until it is clean and dry will be FUN! Taylor has an ear infection. We have a call in to the Dr. to see what we need to do. Hopefully it will not mean an admit. Continue to pray for Alexis who received her transplant Monday and for Austin who is getting radiation in preparation for his transplant on the 14th. ...

January 7, 2003

Taylor and mommy will be going out today to get some things for Taylor's birthday that is coming up on the 19th. Taylor also bumped his head pretty good last night, with a knot appearing on his head, but after a quick call to our nurse, we learned that his platelet counts where still pretty high (56,000) and his white blood cell count was still around 7000. Our nurse is hoping Taylor will only need a blood transfusion, and will not have to come in for a high fever, which would cause an inpatient stay of at least 4 days, which we would like to avoid if all possible. We will know more about another blood transfusion after his bloodwork on Thursday. Please, if you haven't (or you have, and want to say hi) please SIGN Taylors Guestbook. We would all love to hear from everyone, and Taylor enjoys looking at his website, and reading his guestbook. More later...

January 6, 2003

Taylor has had a wonderful day. He had to get up early to have his blood drawn, but that is okay because he will nap early and mommy is ready for a nap. He had fun with the nurse this morning, they raced 4-wheelers!! Taylor has "doctored" mommy all morning and it is great. Taylor likes to doctor by brushing your hair and rubbing your back. I taught him good, huh! Still no fever we hope to get a long stay at home again...

January 5, 2003

Taylor had a very good day today. Mom got to go out shopping, and we stayed at home watching TV. He did get to go outside to ride his gator for a few minutes. He now understands that you have to turn the steering wheel to control where it goes. A big day coming up for us will be January 21. He will have another CT Scan and Bonescan to determine if he has improved (and hopefully in remission) or if the cancer has progressed any. We will be praying daily for positive results.

 

January 4, 2003

 

Today has been an easy day yet a very hard day. Taylor is feeling fine and playing with all the toys that grace our living room floor!! However, Janie Sims lost her battle with leukemia around 4:00 this morning. It is very hard to hear that kind of news on any given day, but it was very hard since Janie was the first child we had met during our own battle that passed away. It has shaken us up quite a bit. She was a beautiful little girl and she will be missed. That makes us really realize how precious every minute with Taylor is. It was hard to remember that while he pitched a 30 minute fit because we are out of tea!  Please remember the Sims family in your prayers and also Alexis Lindsey who just received her transplant and Austin Baker who is feeling a little down right now and is getting ready for his transplant next week.

 

January 3, 2003

 

I encourage everyone who can to go to the galleria today for the Red Cross blood drive, and donate blood. I also found this information on the Red Cross website that explains what Apheresis (giving platelets) is, and how it does benefit a lot of different people.

January 2, 2003

One of Taylor's friends is also in need of blood and platelets. She happens to have the same blood type as Taylor, O positive, CMV negative. Her name is Janie Sims. You can go to her webpage for more information. If anyone out there can help, please do.

Taylor has had a very good day. He has not been sick at all today. He got to paint some pictures today, which he hung on his door. The doctors came by today, and gave us the option of going home late Friday night, or first thing Saturday. We decided that we are going to go home Friday night, after chemotherapy finishes up, which will be around 6 o'clock. This is one of the many advantages of living in the Birmingham area. We also learned from the nurse today, to our surprise, that Taylor can receive RH positive and Rh-negative blood. The CMV still has to be negative, but because Taylor has RH positive blood, he can receive either RH type. We were told differently by one of the other doctors. This will help a couple of people who wanted to donate blood, but were RH negative. Taylor also received a blood transfusion today to hopefully extend the time it will be before we have to come back for fever and low blood counts. Taylor also has a birthday coming up on January 19, but we haven't decided if we are going to have a party or not. It will depend on how Taylor is feeling during the week leading up to his birthday. Xi Beta Xi will be holding a blood drive, but as of tonight, I do not have the specifics of the event. As soon as I find out, I will post the information here. Also, please try to fill out a letter for the post office, more information is down below about our efforts for a Children's Cancer Awareness Stamp.

January 1, 2003

A new year, with so many hopes and dreams, may we have a great year! Taylor started chemotherapy last night, round four. He did not get sick until this morning, but overall, he has handled it very well. He has only gotten sick 4-5 times. He has been in a very good mood today. Pa-Pa and G-mom visited him today, and took him for numerous spins on his bicycle. Just a few minutes ago, he was playing with purple frog and could not understand why frog did not have "nu-nu's" like Taylor (nu-nu's are Taylors hickman port, aka broviac tubes). Well, nurse Courtney and Kristie had surgery on frog, and now frog has some nu-nu's also, and Taylor now has to clean and flush the lines just like the nurses do his lines, mask, gloves and all! It is amazing how much these young children learn. This round of chemotherapy consists of doxorubicin and cytoxan. He will also receive Mesna to help protect his bladder from the cytoxan.

Back To Top

 

Go to News Archive: | Go To TaylorWatts.org