Quick Jump: 4th Quarter 2002: October November December
December 31, 2002
We often hear, if there is anything we can do, just ask. Well, now is the time to call in on that favor. To all out there that read this site, I'm asking you to take a few minutes out of your day and write a letter. This letter that you will write and send for us, will be addressed to the U.S. postal service, addressing the need for a Childhood Cancer Awareness Stamp. More information about this campaign can be found at this website. We would be truly blessed if everyone would take a moment to write our government for this request. A sample letter can be found at this link. It will only take a few minutes to create this letter and send it to them, but it will make a difference to all children out there affected by cancer. This link is to the USPS Citizens' Stamp Advisory Committee.
December 30, 2002
Taylor has had a great day. He had labs drawn this morning and we are still waiting for the results. I assume we will still go in tomorrow to start round four of chemotherapy. Taylor had a new lunch today... it started with getting to eat in his new booster chair at the table and he ate canned corn and no cheese products. We went on a field trip today to the post office. We bought some stamps and got a post office box just for Taylor. The address is PO Box 146 McCalla, Alabama 35111, If you want to send get well cards to Taylor, you can mail them to this address. Taylor saw a motorcycle in the parking lot and got very excited. He of course had a pocket full of "Mo" and saw the salvation army bucket and thought it was his! Luckily he was satisfied with putting some money in it rather than taking it out.
December 29, 2002
Taylor, mommy, and daddy all slept late today and spent a relaxing Sunday at home. We of course "vroomed vroomed" outside today. Our big project for the day was to take down all the Christmas decorations. The living room looks naked and Taylor has noticed too. He keeps standing where the tree was and saying "gone gone". We finally got Taylor to eat something besides cheese pizza for dinner, a cheese quesadilla. Taylor definitely feels the power of cheese! Please pray for some new friends of ours. Janie Sims received a transplant just before Christmas. Austin Baker and Alexis Lindsey will be getting their transplant within the next week or so. We will be getting blood drawn at home tomorrow and we expect to go to clinic Tuesday and start chemo #4 later that night.
December 28, 2002
After many requests, I have finally added some new pictures to Taylor's picture page. I hope you enjoy them. You can get there by clicking here. Taylor is doing great today. He is currently taking a nap right now (2:15pm), and he has already had a busy little day. To begin with, last night when we got home from a night out on the town (just Jim and Kim), we discovered that Pa-Pa and grandmother taught Taylor how to drive his Gator. We figured it would take him several months before he would learn to step on the gas pedal and drive at the same time. Not only can he do that, but he can drive it down the hallway, which is why we moved the operation outdoors today. He has drove it all over the yard. Having himself a good ole time!
Here is a more about
CMV, from a poster on Inside the Auburn Tigers Website, posted by
For most healthy persons who acquire CMV after birth there are few symptoms and
no long-term health consequences. Some persons with symptoms experience a
mononucleosis-like syndrome with prolonged fever, and a mild hepatitis. Once a
person becomes infected, the virus remains alive, but usually dormant within
that person's body for life. Recurrent disease rarely occurs unless the person's
immune system is suppressed due to therapeutic drugs or disease. Therefore, for
the vast majority of people, CMV infection is not a serious problem. However,
CMV infection is important to certain high-risk groups. Major areas of concern
are (1) the risk of infection to the unborn baby during pregnancy, (2) the risk
of infection to people who work with children, and (3) the risk of infection to
the immunocompromised person, such as patients receiving chemotherapy, organ
transplant recipients and persons infected with human immunodeficiency virus
(HIV). By the way, most people don't know if they are CMV negative or positive
unless they do give blood & they are tested then. If you are CMV positive, they
can still use blood products, but just not on folks like Taylor!
December 27, 2002
There have been some questions about blood types, what CMV stands for and other questions related to Taylor’s blood type. I hope this answers some questions. What is CMV? CMV, or cytomegalovirus (si-to-MEG-a-lo-vi-rus), is a virus that is found in all parts of the world. Once CMV enters a person's body, it stays there. Most people with CMV never get CMV-related diseases (70% of the adult population are CMV positive). A blood test can tell you if you have CMV, but this test is not commonly performed. CMV doesn't always cause symptoms. You may already have CMV. However, you can take steps to avoid CMV, such as: washing your hands frequently and thoroughly, talking to your doctor if you expect to receive a blood transfusion. Most blood banks don't screen blood for CMV. Rh blood typing determines the presence (+) or absence (–) of the Rh antigen (also called the Rh factor). If your red blood cells: Contain the Rh antigen, your blood is Rh-positive. Do not contain the Rh antigen, your blood is Rh-negative. Contain the A and Rh antigens, your blood type is A-positive (A+). If your blood contains the B antigen but not the Rh antigen, your blood type is B-negative (B–). Blood typing is done when: Before a person receives a blood transfusion. Before a person donates blood. Before a person donates an organ for transplantation. When a woman is planning to become pregnant or first becomes pregnant. To help determine whether two people could be blood relatives. To help prove the identity of a person who committed a crime.
December 26, 2002
Taylor is doing fine today. He is trying to play with all the toys that he received from everyone, because they are all over the house! If his counts are where they should be on Monday, he will start his fourth round of chemotherapy on Tuesday, December 31. You can view his protocol here.
December 25, 2002
Santa came to visit Taylor last night. He has been such a good little boy through all of this. He has enjoyed and played with everything he got from Santa. Its funny though, they always like the cheapest toys that you get them at this age. I hope everyone had a great time with friends and family, as we have. God Bless.
December 24, 2002
Taylor will not have to start chemotherapy on Thursday after all. His blood cell counts have to be up without help from transfusions, so the doctors are going to start the chemotherapy on Tuesday, December 31. That will give us one more weekend at home! For those people that were willing to help with blood and platelets, the nurse told us today that 70% of the adult population is CMV positive, meaning they would not be a match for Taylor. But if we can get just 3 or 4 people that are matches, that would be enough blood and platelets for him. I really recommend everyone going to give blood regardless of blood type because there is a national shortage for blood and platelets, and there are a lot more children out there besides Taylor who need blood and platelets also. Taylor can not wait until Santa Claus comes. He is getting really excited.
December 23, 2002
Its 6pm, and we finished the harvest for today. Taylor only needed one bag of blood and 120 ml of platelets. They are not sure if they were able to get enough today to avoid having to harvest for a third time. They had to do it today, because the only open time for purging at Children's Los Angeles is tomorrow, so after he finished, they rushed his stem cells away to be boxed up in time for FedEx to pick them up at 7pm. More later when we get home!!!
December 22, 2002
This morning we visited the Stem Cell floor for preliminary blood work for tomorrows harvest. Both his platelet count and white blood cell counts are still down very low, so he will need a blood transfusion and a platelet transfusion. They are not sure if they have a match for his platelets, and their is currently a national shortage. For those that are interested in being tested to see if you could be a donor for Taylor, you need to be O positive, CMV negative and RH positive (you have to be a match on all three). All you need to do is let us know which blood bank you are going to, and we will get our nurse to send information to that blood bank that will tell them what we need and how to send it back for Taylor to use (We have to know ahead of time, in order to have the nurse send this information to them, you can email us at firstname.lastname@example.org if you will be going to a blood bank). We also had the first of three Christmas parties here at our house today. I'm not real sure what we are going to do with all the presents he has received. He has enjoyed all of them. We would like to thank the Xi Mu for stopping by on Saturday and the generous gifts they gave us. We would also like to thank Molly for all the time she spends at our house while we are in the hospital, thank you for dropping at the blink of the eye to come stay at our house while we are away, and the house cleaning is an extra plus!
December 21, 2002
It is that time of year when we gather close to family. Time to celebrate the birth of Jesus Christ, son of the father. We would like to wish everyone a very safe and merry Christmas, and for a glorious and blessed new year. I pray that we also receive many blessings in the next year, including the news that our son will be cured of cancer and that it may never come back again. We wait anxiously for that day and know that we have to keep our heads up and focused on the task at hand. Taylor goes tomorrow morning for the preliminary blood work for Monday's harvest. When the doctor called the other day to tell us the news about the stem cells being unusable due to cancer still present, he laughed and said it was really a silver lining because I was so adamant that he receive the purging process. Because there was cancer in the last harvest, with this harvest, his stem cells will be purged. I really prayed hard for God to make it so that Taylor would have his stem cells purged, and I guess this is his way of granting me my prayers. After the harvest on Monday, they will ship his stem cells over night to Children's Los Angeles so that they can go through the purging process on Tuesday. May god bless the people and machines involved with the purging process so that they will remove any cancer cells that may be present so that Taylor will receive a clean Bone Marrow Transplant in March.
December 20, 2002
Taylor's white blood cell count and his platelet count are still both very low. Taylor had some visitors last night and they were very generous. They brought Taylor some Christmas presents, and he is enjoying them a lot. We just wanted to say thanks for stopping by, and thank all of you for your generous gifts. Taylor's little body looks so battered and bruised because his platelet counts are so low. The shot he gets in his leg each night just bruises up. It sure hasn't slowed him down any. Tonight starts his triple dose of G-CSF in order to boost his blood counts so they will be able to harvest on Monday. If you want to see where Taylor is on his protocol, you can do so here. If you want to read more about some of the chemotherapy drugs that Taylor has taken, or will be taking, you can do so here.
December 19, 2002
Just when you think things are looking down, you realize how many people are behind you and are supporting Taylor through this difficult time. Its great to know we have so many people their for support, guidance, love and basically someone to lean on. To everyone out there who has prayed for Taylor, sent cards, money, candy, or just took the time to think of him, we would like to say thank you and welcome to our family, because its a big one. God bless.
December 18, 2002
We received some bad news a few minutes ago. The doctor called with the results of Taylor's stem cell harvest that they did back on November 24. They cannot use the stem cells harvested due to the presence of too much neuroblastoma cells in the samples that they tested. The doctor said this was a slight step back, but somewhat expected it from the information he gathered from the scans they did prior to the harvest. They want to do another harvest immediately, so Sunday we will go in for the preliminary blood work, and they will do another stem cell harvest on Monday, December 23. Because the cancer cells were present within the stem cells, Taylor will be changed from unpurged to purged. After collecting the harvest on Monday, all of his stem cells will be shipped over night to Children's Hospital Los Angeles, and they will put all of the stem cells through a purging process that will hopefully remove any present cancer cells. We are of course devastated, but will keep on praying and working toward a cancer free life for Taylor.
Taylor woke up in a very good mood and is playing with everything slap in the middle of the living room floor. He has taken a real interest in Sesame Street and Blue's Clues. He is starting to do really well with playing alone in his playroom, which s a little unnerving since I found him standing in the moon and star chair digging in a basket on the shelf.
December 17, 2002
We got the results back from Taylor’s blood work late yesterday. His platelet count dropped to 9000 which is very low and he will likely have to go into clinic one day this week for a blood transfusion. Even though his platelet count was low, the nurse said it would still be ok for him to go out again, so Taylor joined daddy’s group at work for dinner. Taylor had a blast, not to mention all the attention everyone gave him. He is usually very shy around people he doesn’t know, but he cut loose last night. We would also like to thank everyone for the gifts, they are appreciated. If you haven’t signed his guestbook, please feel free to do so, we read everyone of them to Taylor, and the new guestbook will allow you to type as much text as you feel necessary! More later…
December 16, 2002
Taylor’s home health nurse will be coming by this morning to take a blood sample to see where is levels are at. Hopefully if his white blood cell count is up, he can stop taking his G-CSF shot. It is really amazing to see how far Taylor has come in dealing with all the equipment, medical procedures and shots that he has to take. He doesn’t even cry anymore when we go to give him his shot. He just holds his Band-Aid and waits until the shot is over to put it on. We also thought we would have problems with him grabbing his broviac lines that come out of his chest, but he doesn’t bother them at all. He has been such a good little boy through all of this and still doesn’t understand why he has to go through the stuff the doctors put him through. If all goes well with the results of his blood work today, Taylor is going to have another night out on the town.
December 15, 2002
Taylor had a very good day today. Nothing new to report, just that Taylor is really enjoying his time at home and really looking forward to Christmas.
December 14, 2002
Taylor had a good day today. We stayed at home most of the day, but we did venture out this afternoon and took a trip to the hospital to pick up a prescription (G-CSF). Taylor got to go up to 4 Tower to visit some of his nurses, including two of his favorite nurses, Melanie and Rhonda. If you are interested in giving blood as stated below, you need to tell us where you will be giving blood and our CNP will contact that blood bank to give them instructions on blood type and how to send it back for Taylor to use.
December 13, 2002
Taylor had a blast at the Christmas party. Its the first time he has been out since 10-10-2002. We even got some half-way decent pictures of Taylor with Santa Claus. He is starting to warm up to the big guy in red. I added some pictures to his picture page from tonight. Enjoy!
Taylor is going to get a night out on the town! His CNP just called and gave him the go ahead on going to the Xi Beta Xi Christmas party. It will be good for him to get out. We will just steer clear of the big man in the red suite. She also said that people that are interested can give us your names and she will put you on a donor list for Taylor. We can call on you when we know he will need blood. He has O positive, CMV negative, RH positive. If you don't know your type they will tell you when you donate. If you are interested about possibly giving blood for Taylor, you can email us for more information. We have also changed guestbook's for Taylor. The new one will allow you to type more text and it will be a little easier format. You can view or sign his new guestbook at the links above or on the front page.
December 12, 2002
Cheryl, Taylor's home health nurse came by and drew labs this morning. He doesn't need a shot (G-CSF) tonight because his WBC is 14,000. He will start them again tomorrow night. He had a great day. He did pitch one fit though. He really wanted to take a bath in the tub. We can only do that on days we are changing his bandages. He got over it pretty quick. He has a had a good time wearing mommies shoes and shuffling around the house. It was cute, but a little nerve racking when he only has 40,000 platelets. More later...
December 11, 2002
Taylor is doing fine. Getting into trouble every now and then, but doing fine. We still haven't heard the results of the stem cells they harvested from him. They will tell us if they will be usable or not. If there is cancer present mixed in with them, we will have another harvest later on. You can view the rest of his protocol here. You can view most of the chemotherapy drugs here....
December 10, 2002
You can tell Taylor is happy to be home. He has dismantled his play room. When he got home yesterday, he stood at the shelves just pulling toys off and throwing them behind him. The house is a mess now, but it's good to have him home, and hopefully we will be at home through Christmas. His next round of chemotherapy is scheduled for 12-26, so this will be the longest span we have been at home, as long as he doesn't start running fevers and we have to go back. More later...
December 9, 2002
Taylor's sodium level is up enough so he can go home. They are just waiting on his discharge papers so that they can leave. We are really looking forward to being home, and we can not wait for Christmas. Please continue to pray for Taylor and all the little children out there in the world that are facing cancer, child abuse or other problems that affect their lives.
Taylor may not get to go home today. He has some low sodium levels and they will need to monitor those until later this afternoon to determine if he can go home today or not. Here is a good article to read about survival rates for patients with Stage 4 Neuroblastoma.
December 8, 2002
Taylor had a very crazy day yesterday. He didn't have one, but three (yes three) different head injuries. Lets just say he was in a very energetic mood. The first head injury was caused by him holding on to the rail of his bed and rocking his head back and forth in extreme excitement. He was so excited, that he forget how hard the rail was and decided to head butt it. He got a real good read mark above his left eye, which is sure to bruise good by the morning. The second came from him trying to play hide and seek behind a chair. He mis-judged and ran into the wooden arm of the chair, leaving a nice bruise on his left cheek (notice the complete thrashing of his left side of his face). The third injury came in the form of him laying in the flood on his knees in front of the nurse in the hall, and while trying to show off, busted his lip on the floor, gushing blood everywhere. Quite a dramatic day, but after each incident, he cried for only seconds, then was ready to play again.
December 7, 2002
Taylor completed his second night of chemotherapy with no major problems. He did have a little bit of spit up, but that was caused from him getting too excited. Taylor also got to go down stairs to the lobby and visit with Santa Claus. Lets just day it didn't go well. I will put pictures up as soon as we are back home, but he was not too impressed with Mr. Claus (not to mention the fact there were at least 6 clowns which Taylor does not like also). I would like to thank all the wonderful volunteers our there that donate their time, energy and money to put stuff like that on for the hospital, I know children really appreciate it. We would like to also thank Morningstar CDC, the parents, children and teachers for their wonderful gift to us yesterday. They did a Christmas wish list for Taylor, and a candle fundraiser to raise money. We would also like to thank the listeners of Magic 96 for their thoughts and prayers. Taylor was included on their Christmas Wish List. Also we would like to thank Xi Beta Xi for their continued support and fundraisers. I know they have more planed and will update them when I receive more information, which will be posted here. God bless to everyone for your continued thoughts, prayers and wonderful deeds. Taylor loves all his get well/greeting cards, and everyone he has received is taped to the wall in his play room.
December 6, 2002
For those interested in reading about the different drugs Taylor receives during each cycle, you can do so at this link.
For those interested in Taylor's Protocol, you can view the steps he has left by clicking here. Taylor made it through the night without having nausea. He did really well with the two chemotherapy drugs. Today, if he is not receiving the chemo until later in the day, he will get to go downstairs to the lobby and see Santa Claus (He can not leave the floor if chemo is running). More later.
December 5, 2002
Taylor started his chemotherapy at 4:45PM. Kim called and wanted me to leave work early to come during the first 2 hours of his chemotherapy. We learned about an hour before they started that the eptoposide could cause him to stop breathing and have possible allergic reactions. Thankfully, Taylor responded fine to the drug and hasn't had any major problems so far. He actually woke up and wanted to eat pizza, m & m's and goldfish crackers. He also wanted to drink from a cup like a big boy without a straw (he did fine, and didn't spill a drop!). He has finished the etoposide as we speak and they are starting the cisplatin, which will run for one hour. He is now roaming the halls looking for trouble to get into!
Taylor finally got a room (450). We haven't received word yet on when they will start.
Taylor should start his 3rd round of chemotherapy today. Of the two drugs he will be getting this time, cisplatin has a 20% chance of hearing loss in the normal listening range. Please pray that Taylor does not have any hearing loss after this treatment. More later.
December 4, 2002
Our nurse called back, and his platelet count is close enough for him to start chemotherapy tomorrow. Kim and Taylor will go into clinic at 10 AM for blood work, then they will admit him into the hospital to start chemotherapy Thursday night. This round of chemotherapy (Round 3) will be different from rounds 1 and 2. For this round he will receive Cisplatin 1 hour a day for four days, and Etoposide 2 hours a day for 3 days, so this hospital visit will last about 5 days.
Beta Sigma Phi & Xi Beta Xi has asked for people to visit Excedrin.com and for every person that clicks on the Toys for Tots image, excedrin will donate $1.00 to toys for tots. All that is required on your part is to visit and a click, its that simple, and its for a good cause.
Taylor has enjoyed his time at home. Over the past two months, he has spent a lot of time in the hospital (almost 90%), and being able to play with his own toys and walk around has really boosted his spirits. Today home health will drop by the house to draw his blood. If his platelet count is above 75,000, they will call us back so he can go in to start his next round of chemotherapy. His study calls for chemotherapy every 21 days, which would have been yesterday, but we have been able to stay on schedule since starting back in October. More later.
December 3, 2002
After waiting for a while for the doctors to decide what to do, we found out that we get to go back home. He had enough stem cells to do 3 Bone Marrow Transplants, so he did not have to harvest again today. They were going to admit him and start his chemotherapy, but his platelet count is at 52,000 and they can not start chemo until it gets above 75,000. They said it should be above this level tomorrow, so they are going to bring him in to start chemo on Friday. They are trying to make sure he will be home during Christmas, which we greatly appreciate.
We arrived at Children's at about 7:45 this morning. We are waiting to see if they were able to get enough stem cells yesterday so that he will not have to do another harvest today. Taylor had a very good night last night, and his pappy brought him a cool lego truck that he built. We will start the next round of chemotherapy sometime today or tomorrow, and will find out when as soon as they review his blood counts and the harvest from yesterday.
December 2, 2002
Taylor was just taken off the machine(4:00 PM). They said he did very good. They said for children his age and size they usually get about 6-7 harvests. They were able to get 12 harvests off of Taylor today. He will not have to be hooked up as long tomorrow. We now have to wait on his blood work to come back to see if he needs a blood transfusion before we go home.
So far so good. His lines are holding up, and hopefully they will be through harvesting by about 4pm today. They will repeat this harvest tomorrow, then he will be admitted to the hospital to start chemotherapy sometime on Wednesday.
He started harvest at 9:50 am and so far everything is going fine. They are now trying to calculate how much blood they can pull out of him at what speed so that it is safe for him. We also received his blood counts from this morning. His white blood cell count is up to 55,000, a good number for harvesting.
We arrived at the hospital at 7:15 this morning. They have his machine primed and ready to start the harvest. They are actually hooking him up right now (9:46am). The rooms up here are 3 times larger than his normal room on 4-Tower. But for some reason he does not have a phone in this room, but he does have a computer, so it will be easier for me to update this page with what's going on. More later.
December 1, 2002
I wanted to share a web page with you. This is one of Taylor's friends that he met while at the hospital. Her name is Sophie and she is currently receiving treatment for leukemia. She is also a big Auburn fan!!! Please add her to your prayer lists.
We went this morning for the preliminary blood work to see if he can start harvest in the morning. His white blood cell count is at 41,000 so he will be able to start the harvest in the morning. Please pray that they harvest stem cells only and do not get in cancer mixed in with stem cells. We also got to talk to the doctor in more detail about the cancer that is still in his bone marrow. When his first biopsy was done on 10-15-2002 he had about 50% tumor/cancer cells in his bone marrow, which is a large amount. With this most recent biopsy, it is down to 20%, but of course we want 0%. The doctor said we were heading in a good direction. We pray that after this next chemo treatment, he will be in remission. We start the harvest in the morning, and it will take about 8-12 hours to do it. After he is through, he will be able to go home and return the next morning to repeat the process. I will update tomorrow after we get back home.
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November 30, 2002
Taylor had a very good day today. He got to go outside for a little bit today, and he enjoyed every minute of it. We go to the transplant floor in the morning for preliminary work for the harvest Monday.
November 29, 2002
The transplant doctor called back later this afternoon. They have decided to go ahead with the harvest on Monday. The transplant doctor talked with the head of the chair of his study/protocol, and she stated that there have been 60 kids that had significant tumor/cancer in the bone marrow, and they went ahead and harvested, and there weren't any problems, and the stem cells they got did not have cancer mixed in. So he will have the harvest, and his stem cells will be shipped to Children's Los Angeles for examination. If they determine the stem cells to be cancerous or dangerous, he will have another harvest after his 5th cycle of chemotherapy. We are still somewhat upset that he still has cancer in his bone marrow, but will continue to pray and know that God will help Taylor and us through this.
The doctor called. We did not receive the news we had wanted to hear. The bone marrow biopsy still shows too much tumor/cancer cells in his bone marrow for the doctors to be able to go through with this stem cell harvest. The Bone Scan showed some improvement, but Taylor is not where they want him to be to be able to do the stem cell harvest. We will now go through with another round of chemotherapy to hopefully get rid of the cancer so they can go ahead with the harvest. Please pray for Taylor, he really needs it right now.
November 28, 2002 Turkey Day!!!
Happy Thanksgiving! We have so much to be thankful for. Being able to come home for Thanksgiving means so much to us. We would like to take this time to thank everyone for your continued prayers and support during this time in our lives. It has made it so much easier for us to know there are so many caring people out there behind us every step of the way. With your support, and God's healing hand, I know we can and will make it through this ordeal. Prayer request: Please pray for good news tomorrow about his bone scan and bone marrow biopsy that he did earlier this week. With good news, we will be able to start the first part of the bone marrow transplant, the stem cell harvest which will begin on Sunday if we receive good news. He will go in Sunday for blood work and other various tests in preparation for the harvest on Monday. We will be able to go home each day during the harvest. Harvesting his stem cells requires us to triple his GCSF shot (shots that make his white blood cell counts rebound faster) on Friday (11-29), Saturday (11-30) and Sunday (12-1). This shot will make his body produce large quantities of white blood cells and stem cells that are in his blood stream. We would then go in on Monday for the harvest. He will be hooked up to a machine that will pull blood out of his body, separate or pull out the stem cells, and put the remaining blood back into his body. This can take anywhere from 6-8 hours. He then will be able to go home, and come back Tuesday (12-2) to repeat the harvest again. He may have to come in for a third day if they do not remove enough stem cells on 12-1 and 12-2. Hopefully everything will fall into place and they will be able to remove enough stem cells to use in March for his Bone Marrow Transplant (Stem Cell Rescue).
November 27, 2002
We are going home for Thanksgiving!!! His white blood cell count is over 800 with 44% of them being the infection fighting blood cells. We will find out the results of the biopsy and bone scan on Friday morning. If his bone marrow is clear of cancer cells, we can proceed with the stem cell harvest on Monday. They will harvest his stem cells from his blood stream, freeze them, and sometime in March, he will have a bone marrow transplant (Stem Cell Rescue) after a almost lethal course of chemotherapy. More will be posted about this later. We are just so happy to be able to go home for thanksgiving.
Today Taylor will have his bone scan and a hearing test to make sure the chemotherapy drugs have not damaged his hearing. There is a very good chance that he will lose some of his hearing and will need hearing aids after chemotherapy is complete. A couple of the chemotherapy drugs cause damage to the eardrum. This is something that we will worry about on down the road. If is counts are up today, we may get to go home for Thanksgiving. Please pray for good results on his bone scan, that he never has hearing loss, and for his biopsy results to be positive. Thank you. Jim, Kim and Taylor
November 26, 2002
Update: Taylor's bone marrow biopsy went very well. He shows no discomfort on his lower back where the giant needles went into him. Tomorrow comes the bone scan, and hopefully the results of the biopsy. Please continue to pray for Taylor. Thank you. Jim, Kim and Taylor
WBC is at 300, still low. Taylor will have the bone scan tomorrow now, and the biopsy today still. Dr. Castleberry was a little upset that they did not do the bone scan yesterday with the CT Scan. He did get the CT Scan results back, and there were no major surprises. Some lesions were still on his spinal cord, but the doctor said it would take some time for those to heal and go away. It will also take a couple of days to get the bone marrow results back.
Taylor will have both his bone marrow biopsy and his bone scan today (They were able to find platelets for him last night). We should hopefully see some progress, and I pray that he is in remission. Remember, with this cancer, remission isn't has hard to achieve as no more relapses. This cancer is very hard to keep away, and has a relapse rate of 60-70%. Please pray for good news for Taylor and our entire family. We will also receive the results of the CT Scan taken yesterday.
November 25, 2002
The doctor came back and we have a change in plans. Since he hasn't ate anything yet, they are going to do the CT Scan today, the bone scan tomorrow and the bone marrow biopsy on Wednesday. Please pray that all three come back positive. They also came in and did an EKG on his heart (standard procedure) to make sure the chemotherapy drugs are not damaging his heart in any way. They found a small hole between two chambers of his heart, but the doctor said this was normal and that all children are born with this, and in 15%-20% of children, the hole does not completely close up. The doctor said the hole was not big enough to even be significant.
The doctor stopped by his white blood cell count is up to 240, but still not where he wants it for us to be able to go home. They are still looking for platelets and will know something by noon. The bad thing is, Taylor cannot eat until after the biopsy, and he is really hungry!!!
Taylor was to have that bone marrow biopsy today, but his Platelet count is too low for them to be able to do it. They ordered a bag of blood but they do not have anymore platelets for his blood type. I'm not sure what they are going to do. Now would be a good time to stress the importance of giving blood. While normal blood can be stored and used later down the road, platelets are only good for 3-5 days. If you don't give blood, please consider giving blood, it may save a life. Taylor will be ok, we will just have to wait for his platelets to come back up before he can have the bone marrow biopsy.
Xi Beta Xi held their first fund raiser for Taylor. They participated in the charity ticket sale at McRae's on Saturday. All the ticket sales will go into his fund to pay for medical bills. They have a few more planned in the near future. You can find out more by clicking here. We are hoping to make it home for Thanksgiving. Today Taylor will have bone marrow drawn out of each hip bone to have tested for cancer cells. Please pray for him, and pray that there is no cancer present in his body. I will update the site later after I receive news of the results.
November 24, 2002
I have added 10 new pictures to the picture page, most of them from yesterday, when he was dressed up in his Auburn jersey. The doctors came by, and Taylor's white blood cell count is now down below 100, so we will not be able to go home until he starts to show improvement. He has not had anymore fevers, but now we are waiting for his counts to go up so we can go home. Taylor is still in a very good mood, but he won't take any of his medicines. More later.
November 23, 2002
I will update more news later today when we get to the hospital and talk with the doctors. Taylor is excited about the Auburn/Alabama game and will have his jersey and shaker to cheer during the game.
November 22, 2002
More from yesterday from mommy: When you receive blood in clinic you sit in a big room full of people just like when you donate. The chairs are even adult sized. Poor Taylor was folded up like a "V" because he was to little to sit in the chair. He sat that way, and napped for 6 hours in that position. It was funny to watch him try to move around, but he was a real trooper. He is in very good spirits even with a low count. He ate a hamburger like a dog. He got so tickled he ended up choking, but at least he ate some real food. We want him to continue eating and drinking so feeding tube is kept out.
We made it through the night without a fever! Today he will go in for a blood transfusion to boost his red blood cell count! Update: When Taylor arrived at the doctor, his fever was back up to 100.5, and they can not give him blood until it goes back down, so they are going to admit him into the hospital to monitor his fever and blood counts. Our time at home was good while it lasted!!! More later
November 21, 2002
Update 4:00: The nurse just called, and his white blood cell count is down to 110. She said she expected us to be back before midnight with high fever. His red blood cell count was also down, so if by chance he does not get a fever and have to go in, he has to go in tomorrow at 9am to receive a blood transfusion. Nothing unusual about this, he has had several, and they give him more blood when his red blood cell count and platelets get really low. He is sleeping right now, and we continue to monitor his temp.
We had a very good visit today. While we were there, Taylor's fever broke and hasn't came back yet. We got to visit the Lowder Transplant Center to go over what to expect during his harvest and later on when he goes back for the Bone Marrow Transplant. On December 3 he will go in for the harvest. It will be out-patient treatment. He will spend 8-10 hours harvesting his stem cells and monitoring him. After completed we will get to go home, and come back the next morning to repeat the process. He will have to be monitored very closely due to the fact that he will have a good part of his blood outside his body running through the machine. Basically they pull the blood out of one of his broviac tubes, run it through a machine that will pull out the stem cells in his blood stream. The remaining blood is put back into his body via his other broviac tube. We were also able to remove Taylor's feeding tube, so he is now tube free (except for his broviac tube that isn't in use right now). He got to show off his Auburn Jersey to all the nurses and doctors. Taylor says "war eagle!" Bye for now, Jim, Kim and Taylor.
Taylor's fever has climbed to 101.2. We are going to the hospital today to visit the transplant floor, and to clinic to do his routine blood work. If his fever gets any higher, they will make a decision on whether to keep in at the hospital or not. We will know more after the visit today. I wanted to also thank the underwriters at Amsouth again, you guys do to much. Until later. Jim, Kim and Taylor.
November 20, 2002
We received a call today from one of the doctors at Memorial Sloan Kettering Cancer Center located in New York City. They are considered some of the leading edge researchers in the field of Neuroblastoma. We had contacted them for more information on their 3F8 anti-body research that they developed in 1985 and have been using ever since. Taylor may be eligible to receive this treatment after his Bone Marrow Transplant. The doctor that called was very helpful, and we received a better understanding of what they are trying to do there. At the end of Taylor's study, he will have the option of participating in another randomization, and will either receive Isotretinoin or Isotretinoin in addition to Ch.14.18 anti-body combined with IL2. This is a different type of anti-body from what they use at Sloan Kettering. The doctor at Sloan Kettering stated in theory this anti-body should be better than what they have developed, but because nueroblastoma is a rare cancer with only 500 new cases a year, the Ch 14.18 has not been tested as much as the 3F8 which has been under study since 1985, used in over 300 patients and over 9000 infusions. We will do a little more research in the two types of anti-body treatments and discuss our options with Taylor's doctors. Until later.
November 19, 2002
Taylor had a good day as far as his health, but his attitude and mood was very negative. He was throwing things and misbehaving. He ate very good, eating two ` pizza's. He loves to park his cars. He likes to get them all in a line, facing the same way mind you. He especially likes his four wheeler and hunter man that looks like his grandfather (pa pa). He only has to stay on his liquid feeds for 16 hours a day, so he at least gets to be free for 8 hours. We go Thursday to the 6th floor transplant floor to take blood in preparation for his stem cell transplant harvest. We will also get to tour the floor and learn in more detail the procedure and what to expect during the harvest and afterwards. There is somewhat of a risk associated with the harvest, and the stem cell transplant. Taylor also got his back pack today so we will not have to roll his IV pole around the house. Its a little bit better, it will just take some getting use to. Until tomorrow, Jim, Kim and Taylor!
November 18, 2002
Update: Here is a little outlook on the upcoming weeks ahead for Taylor: November 26: Bone Scan and CT Scan. November 27: Bone Marrow Test, they will draw some of his bone marrow out of each hip to test for detectable cancer/tumor cells. December 2: Preparation for Stem Cell Harvest. December 3-4: Stem Cell Harvest. December 5-9: Round 3 of his Chemotherapy
Taylor slept really good last night. Its good to be home. We had a fire in the fireplace, which was a first for Taylor. Hopefully today we will find out about getting him a back pack for his IV food so we will not have to pull the pole around the house. It does not roll well on carpet, plus its too hard to keep up with him. Thanks to all the people who have sent cards and donations. The support and love we have received as been overwhelming. With Kim having to quit her job to provide care for Taylor, we knew it would be hard, but I know we have God and everyone out there on our side, and we will conquer this cancer. All money donated will go toward Taylor and his fight. Our insurance does not have a cancer rider, so when he hits his maximum lifetime benefits, this added support will help, not to mention we are paying 20% of the cost of prescription drugs he is taking. His G-CSF shot that he takes every night costs about 6700.00 a month. This shot makes his body produce white blood cells and is important to his overall health. If we have to pay the hospital 10 dollars a month forever, we will do whatever it takes to make our baby well again. I wanted to post the link to his trial that he is one for the people who are asking about it. You can read about his trial by clicking here. God bless, more later.
November 17, 2002
Taylor got to come home today. His chemotherapy ended at about 3:30 this morning due to the accident and loss of some of the doxorubicin. We were home at 10 and he is playing fine. We have another visit to clinic on Wednesday unless he spikes a fever and needs to go to the emergency room like last time. He was very excited about getting to go home so soon. I'm planning to put some video on this website but the video we took today and last night didn't come out very well, so that will be delayed a little bit, but I did add some new photos last night, and will be adding some other things as well. If anyone has any suggestions, feel free to email me and any good ideas that are presented, I will do my best to incorporate them into this website. I'm going to go play with Taylor, bye for now!!!
November 16, 2002
New pictures added to the picture page. Earlier this afternoon, Taylor met a man with a prosthetic leg, and Taylor simply points and says "broke." Quite embarrassing for us, but the man thought it was funny. Taylor's chemotherapy should finish sometime in the early morning (5am) and if there are no major problems, we will be able to go home for a couple of days, until his counts drop and we have to go back.
Taylor has had a good day today. Dr. Castleberry said everything is going really well and that Taylor is responding well to the chemotherapy. We had a accident this morning. While he was riding in the hall, the bottle and line on his doxorubicin came separated and the drug spilled out into the floor. This drug is very toxic and burns skin on contact. Kim's mom got some on her hand, but was able to wash them immediately. The cause of the spill is due to a defect in the bottle/line. Thank goodness they were right in front of the nurses desk and the situation was handled quickly. We will find out on November 26 how we are doing overall. On that day we will have another bone scan and Ct scan to see if there is any cancer present and how much. We will get a better picture of how treatment looks. I will be adding pictures and possibly some video from the hospital. Stay tuned.
November 15, 2002
Taylor's nausea stopped at about 8PM last night. He slept well until about 2am when he decided it was time to wake up and play. He was fired up and wanted to go out into the halls to play. He couldn't understand that everyone else on the floor was sleeping. He gets another 6 hour round of cytoxan today, and we pray it will not make him as sick as it has before. More later...
November 14, 2002
Update: The nausea started at about 2:45. He hasn't had much to eat, and that makes it that much worse...Update: 7:30PM..He is throwing up about every 15 minutes. The nausea medicine they are giving him isn't really helping much. Its about like last time. Hopefully he will improve and not get so sick tomorrow. He has been asleep since 5:00PM, and hopefully he will stay asleep and get some rest during this tough time on him.
So far, so good. Taylor has been playing out in the hall and has been riding his wagon around. He has had the hiccups all morning, and the doctor said sometimes they will get hiccups instead of nausea. The nurse was wrong last night, he will be getting 72 continuous hours of doxorubicin, so his chemotherapy will be finished around 5 am on Sunday. Hopefully we will be able to go home then, but they might keep him since they know his counts will bottom out. More later
They didn't get to start his chemotherapy until about 4am this morning. He will actually be getting 3 anti-cancer drugs this round. I'm not sure of the exact protocol of this treatment, and neither did the nurses. This is a new study and the nurses haven't had to do this before. They said this time he will be getting 24 hours of doxorubicin, and 2 6 hour rounds of cytoxan and vincristine mixed through his other line. Today we will know if it makes him sick again like last time. His body did not take well to the cytoxan, and it made him very sick. I will update more news as it comes in to me. Please continue to pray.
November 13, 2002
We went to clinic today, and by Unbeknownst to us, they decided to admit him into the hospital to start his next round of chemotherapy. We had been told maybe Friday, and we were shocked to find out we would be staying. He will be starting chemotherapy tonight, and will be getting 72 continuous hours of doxorubicin and 2 6 hour treatments of cytoxan. The cytoxan is what made him so sick last time. We hope he does better this time around. I will post more later tonight, and tell you a little more about Taylor and a dog and a picture they took today!!!
November 12, 2002
Taylor had a very good day today. He kept mommy busy today. Tomorrow, we go to clinic to do blood work to determine if he can start his next round of chemo treatment later this week. We will also get to tour the transplant floor and get a better detailed layout of how the Bone Marrow Transplant will go. Taylor has enjoyed being at home. I can tell he misses going to school and playing with his friends. He has a picture book with pictures of his classmates in it and he loves to carry it around. Maybe one day when everything is not so busy, we can take him back to school for a little while. Being at the hospital for so long has also changed his sleeping habits. He use to go to bed around 8 every night and wake up the next morning around 6, but since being in the hospital, he is staying up to around 11:30/12 every night, and sleeping until 10 in the morning. Hopefully we can get him back into a little better sleep pattern. Until tomorrow and our visit to clinic, Jim, Kim and Taylor.
November 11, 2002
Our first night home, and we get to spend the night in the basement! How fun, but luckily we only received bad rain and wind, nothing too serious. Taylor has had a good day today. He enjoyed getting out in the driveway and playing with the remote control car. As I type, he is in the playroom destroying it, making sure he gets every toy down and puts nothing back. He likes it to all be in the floor. His clinic appointment is Wednesday morning, so we will find out for sure which day his 2nd treatment starts. After this next treatment, they will harvest his stem cells that are in his blood stream for transplantation later on. The harvesting is relatively dangerous, but if monitored properly, should go smooth.
November 10, 2002
Home, finally! Taylor was discharged from the hospital and is finally home. After 3 long weeks at the hospital, he is finally getting to enjoy his own room and toys. His white blood cell count is over 18,000 today. We will go back to clinic sometime on Tuesday or Wednesday, and he will probably start his next chemo treatment by the end of this next week. We will know for sure after we go to clinic for blood work. But for now we are going to enjoy all being home, together.
Xi Beta Xi, a non-profit women's service organization, has made Taylor their service project for the year. They have come up with different fundraising events in order to raise money to go toward Taylor's treatment of Nueroblastoma. They have also opened a charitable fund account at AmSouth Bank. If you are interested in donating to this fund, you can go to any AmSouth Bank and mention the fund. All donations are tax deductible. More information on this and other fundraising events can be found here. We greatly appreciate all the support we have received. I would also like to thank Xi Beta Xi for everything they have done for Taylor. I would also like to thank all the people out there that continue to pray for Taylor. We started this website first to keep family and close friends informed on the day to day news about Taylor, but with word of mouth, the turnout is unbelievable. Everyone is welcome to come back everyday to find out the latest on Taylor, and support us in our fight of cancer. The guestbook is available to leave comments, well wishes, etc.
November 9, 2002
Taylor's white blood cell count was over 11,000 today. Since he is so stubborn, and will not drink, they had to install a tube down his nose to give him liquids. This evening, he really started drinking more, so hopefully the tube will not stay in long. I have already added some pictures from the hospital that you can view here. Thanks to my mom, Kim and I were able to go home last night and get some much needed sleep. My mother and her mom have been very helpful when it comes to doing this, and have given us a couple of breaks here and there. We just want to say thanks! The how to help page should also change today, just waiting on confirmation from Xi Beta Xi. Until we speak to the doctors, Jim, Kim and Taylor.
November 8, 2002
White blood cell count is 6030 today...The doctors came in and if he doesn't drink, they will install a tube down his nose to give him liquids. Hopefully he will start drinking. They have taken him off IV's completely, so he is running around like a wild man, even leaving the room by himself to play in the hall... We cant wait to take him home for a few days. We also talked to the Transplant Team about the Bone Marrow Transplant, but I will post about that tomorrow after I speak with them this afternoon....Taylor was in a very good mood last night. He has really bounced back from being so low and unhappy. Continue to pray. For anyone interested in reading about the clinical trial is participating in, you can do so by Clicking Here to go to the Trial Information. Until later when we hear from the doctors, Jim, Kim and Taylor.
November 7, 2002
His white blood cell count is up to 4330. They are looking at maybe Saturday or Sunday for him to go home. We will know more later.................Taylor's white blood cell count late yesterday until I can get today's news updated. Yesterday, we took Taylor down to the 3rd floor activity room to see if we could get him to show some interest in moving around a little. Boy did it help. After about 20 minutes of playing in the floor, he was up walking around and we could barely keep his pole up with him. It did a lot to boost his attitude and his mobility.
November 6, 2002
We received more news about his blood counts. His white blood cell count is up to 1820 (yesterday it was 640). We also talked to the doctor about the purged vs. unpurged, and we cannot do the purged process. There is a small chance we can, but we have to call a doctor in California at USC to see if he would let us do the purging off the study, which the doctor said was unlikely. They look to push back his next chemo treatment to sometime in the middle of next week if his counts continue to hold. He may be able to go back home tomorrow or Friday, depending on how soon he starts to eat again. He has not eaten or taken a drink for about 6 days now. He may have to go home with his IV food with him. Until more news arises, Jim, Kim and Taylor
November 5, 2002
We received some good news this morning. His white blood cell count is up to 640 (up from 240 yesterday). The doctors were encouraged at his continued increase in counts. Until more news comes... Jim, Kim and Taylor.
November 4, 2002
Taylor slept decent last night. He did not go to bed until midnight, but after he got settled down, he did really well. We received some good news this morning about this white blood cell count. Yesterday it was up to 110, and this morning it is up to 240, which is a significant increase. We are hoping it will continue to go up and not drop back down again (which is possible). He is really starting to lose his hair, mostly due to him because he is reaching up and pulling out handful's at a time. His mouth sores are really bothering him. The nurse said that these sores could reach all the way down his throat to his stomach, which would be a severe case. Right now his are just in this cheeks and back of his mouth, but they really bother him. Kim is sick with possible strep throat, and the doctor has told her to stay away until Wednesday so that they can test again for strep. He was also moved to another room due to ants. He is now in room 448. Until tomorrow, or more good news... Jim, Kim and Taylor.
November 3, 2002
Taylor has had a bad day today. His mouth sores are very painful, and he has lost about 30% of his hair today alone. He is in a very bad mood. His blood cell count was 90 yesterday and is back up to 110. Until tomorrow, j,k, and little t.
November 2, 2002
Taylor had a decent day today. The wear of staying at the hospital for almost 3 weeks now has gotten to him. He is very weary and I can tell he his ready to go home. Thanks to my mother and aunt, me and Kim were able to go home last night to get some much needed rest. Thanks to kims mother for another night of rest at our home. We will return to Taylor's side early Sunday morning. Please continue your thoughts and prayers for Taylor. There have been so many great people that have helped out, it has been very unbelievable to see the support of friends, families, co-workers etc... Everyone has forever touched our hearts, and we are deeply great full for everything. Taylor also got to have a little fun This evening. A very large group of bike riders were at the hospital giving out stuffed animals. There must have been over 300 bikes there, and everyone we met was super nice. Thanks to anyone out there who might have participated in this event. Taylor got to go down to the main lobby and see all the bikes, he truly enjoyed it. For everyone who has asked to give money for Taylor's medications, Xi Beta Xi will meet on Tuesday to discuss opening a bank account for this purpose. Taylor's current shots to boost his white blood cell count currently costs about 6700.00/month, with us covering 20% of that amount. Hopefully his white blood cell count will go up enough so that he will not have to take this shot everyday. All donated money will go directly to his care, and it is very appreciated. There will be more information on Wednesday about the account and all other relevant information pertaining to the fund raiser they are working on. Until tomorrow, j,k, and little t.
November 1, 2002
Update: His white blood cell count is up to 130. This is an increase from 70 just yesterday. They plan to do another chest x-ray today or tomorrow to make sure he is not getting pneumonia ....Taylor had yet another good night of sleep. He got into a little better mood as the evening got later last night. I think the blood that they gave him boosted his counts a little and made him feel a lot better than he has been feeling. Special thanks goes out to some of the underwriters at Amsouth Bank and their gift, it is greatly appreciated. I will get to work tonight to try and transform this into some kind of organized website. Until tomorrow, J, K, & T
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October 31, 2002
Taylor had another good night. He did not wake up one time during the night and received some much needed rest. He has mouth sores in his mouth as a result of one of the chemotherapy drugs. This was a side effect that is expected but we had hoped he would not get them. He had trouble eating and drinking, so he has not had much of either. They started a bag of blood this morning at 6:30 am before I left for work. They are having a concert today at 2pm in the main lobby and Taylor and Kim are going to go to see it, so it will be a good change of pace from seeing the same walls day in and day out. I will start work on this website over the weekend, adding all kinds of information. If there is anything that you would like to see on this website, email us at email@example.com Thanks and good day. J,K,T
October 30, 2002
Taylor had a very good night last night. He slept through the night. He has broke fever several times, and hopefully his white blood cell count will continue to go up. When I have more time, this website will drastically be changed, so stay tuned. If you have any questions, comments or ideas, you can email them to firstname.lastname@example.org Until tomorrow............Jim, Kim and Taylor
October 29, 2002
To Everyone, Today, Taylor has been back to the hospital. The doctors look to keep him for at least a week to monitor his blood counts. We came to the emergency room this morning at 5am after his fever got up to 103.5 degrees. After getting blood work, they found his white blood cell count to be at 60. A normal healthy child at his age should have a white blood cell count of 5000, and a child coming off chemotherapy as Taylor did last week should have a count around 500. With his count being so low, they will continue to monitor this until they have built back up. This will be a website where we will keep everyone up to date as much as possible about his condition, ways to help, and other relevant information. For those that do want to help, there will be more information available as soon as I can start to build this website. There will also be links to information on Neuroblastoma. We want to start some kind of foundation to help fight neuroblastoma and find cures for this pediatric cancer. Until tomorrow, Jim and Kim Watts.
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