Quick Jump: 2nd Quarter 2003: April May June
June 30, 2003 Day +89
Today was the first day of antibody treatment. We were up and out of the RMH by 7:15. By 7:40 Taylor had been weighed, temperature taken and blood drawn. He got a finger poke today rather than having it drawn from his noodles. He whimpered a little, but that is about all. We met with the nurse practitioner again for a check up and to go over the procedure again. We finally got a bed around 8:45. He was given his GM shot soon after and then we waited. You have to wait an hour after the shot to start the 3F8. He was given Tylenol and daludad (SP??) to help with pain and benadryl to help with any allergic reactions. He Finally started the 3F8 around 10:15. He got 60ML of it and at about 20 it started to hurt. In the beginning he grabbed the spot on his chest where his broviac comes out. He thought that was the cause of the pain. Soon he realized it was his chest area and he started to whimper and ball up. He sat in Jim's lap while I rubbed his chest and he slowly calmed down. He was given a little bit of morphine to help and it did. He fell asleep in about 10 minutes and slept until 11:50 when she said he could go. We hope that is how it will be everyday, but we don't know. They were amazed at how well he tolerated it. His pain hit later than usual as well. He did not require any oxygen and his heart rate and blood pressure stayed in the normal range although they both did go up.
He is now laying in his bed watching The Wiggles. We were told most kids sleep the rest of the afternoon and return to normal activity by evening. He is not grumpy, just sleepy. He is very thirsty, so he guzzled his tea and half a glass of water. He ate well this morning, but they did say appetite tends to drop off during treatment, so we shall see. We also talked about removing the broviac. They want us to keep it because it is better than an IV since he can get more stuff at once and at a faster rate. If we really want it out we can get a medi-port that is under the skin. It will mean another surgery to remove one and insert the other, but on the other hand it will eliminate dressing changes, ace bandages, heparin, saline, and worry of pulling it out. We will think about it and talk it over with the doctors and see what happens.
Well, I guess I will go and take advantage of the sleepy mood floating around this room. Please continue to keep Taylor and all his cancer friends in your prayers. Also, do you all remember our friend Patrick I told you about a few weeks ago? He lost his battle to cancer last week, please remember his family during this difficult time. I have been in NYC too long, I wrote you all rather than ya'll!!
If you have time, I urge everyone to take a quick minute and write your congress person about the importance of the H.R. 2021 bill, that is before the 108th Congress. I believe it is currently under review in one on the sub-committee's. This is a very important piece of legislation that will require insurance companies to cover routine patient costs under clinical trials. We are very fortunate to have our insurance issues finally cleared up, but there are many more families here that are still fighting with their insurance companies in hopes of them covering some of the expenses. Sloan Kettering pays for the clinical drug 3F8 and all the research behind the drug, but the cost of the monitoring and giving the meds falls to the patients insurance company. If the insurance company denies the coverage, it is then the responsibility of the patient to cover the expenses, which can be very costly. So if you have a free minute, please be sure to email your Senator and Representative and make sure they know how important this legislation is to cancer patients everywhere. Email for your senator or representative can be found below, and if you can send a letter via the postman, that would also be great!
June 29, 2003 Day +88
I will start with what we did yesterday. After sleeping until 10:00 we got up and got ready for lunch. We caught a cab to TGI Friday's. Thank goodness they had pizza because that is all Taylor wanted. After lunch we walked around 5th avenue for a little bit. Taylor got a Yankee's out fit that swallows him up. He likes it though. We headed home for a nap. Taylor and I both fell asleep at about 3:30 and slept until 6:40. We then got up and went to the terrace where we thought they were having a bar BQ. but there was no one there, so we went to Hard Rock Cafe. We went to Ride a horse and carriage through Central Park, but it was $40, so we changed our minds. We got home near 10:00. Of course after such a late nap Taylor was not ready for bed. For the second night in a row he went to bed at 1:00.
Today we slept until 10:00 again. It is so dark in here that it is easy to sleep the day away. Being the southern geniuses we are, we found the thermostat to the "cooler" or AC to us Alabamians, so we are no longer sweating. Anyway, we got up and got ready and headed to Sassy's Sliders. It is like krystal only with real meat. It was pretty good. Taylor even ate one. We then walked 150 miles, okay really like 6 blocks, through Central Park to the Museum of Natural History. When we found out it was 12 dollars apiece for us and 7 for Taylor we opted not to go. He wouldn't have even cared to see it. He did have fun jumping off the benches. He has discovered how to jump and now we have to jump off everything. We got a taxi and headed back to RMH. Taylor is getting good at hailing cabs. He automatically holds his arm out when we hit the curb. He is also very safety conscious. He makes sure we hold on to the rails in the elevator so we don't "pall" and we have to hold on to the "oh heck" bars in the cabs. You really do need those with some drivers, yikes.
We are now getting ready to nap and then we will go down to the petting zoo the RMH is having tonight. Taylor is ready to see it, so it should be fun. Please pray for us tomorrow as we start the actual treatment. It will be very painful for him and painful for us to watch. Please help him and us realize that it is for the best.
June 28, 2003 Day +87
Last night we went to the Bronx via the subway to watch the Yankees play the Mets. We got there at about 5:30 to watch batting practice. Taylor loved it. He even got a ball. We got pictures of the guys that got it for him. Taylor ate his hot dog, this seems to be our new favorite. Of course it has to be completely peeled and that is worse than peeling chicken fingers. He ate a few bites of ice cream, but it was the pop corn that he really enjoyed. He ate about half of a jumbo pop corn by himself. He started to get a little fidgety during the 5th inning, so we left. It was 8:30, so he did good to be there that long. He never did get out of control or anything, just couldn't be still. It took a while to get home and we beat all the people out, so I would hate to see the chaos that was out there after the game. We got back to the RMH around 9:45 and he was full of energy. He got a shirt and a hat from the stadium. He loves the hat.
I keep forgetting to tell you all how he is looking these days. He looks crazy to put it bluntly. He has a perfect oval shaped bald spot on the right side of his head from radiation. It goes from dead center of his head back to the crown and around the ear back to his face. He will look crazy while his hair grows in. He will start from scratch in that spot and the rest is an inch long. He has carpet burn over his right eye because he took a head first dive off the bed. He has a goose egg in the middle of his head where he head butted the night stand. Yes, he did it on purpose! When we go back to clinic on Monday they will think we are beating him. He has not been beat, but he sure has seen just about every bath room in NYC. He is turning into a total turd. We have had to excuse ourselves to the bathroom in several restaurants and stores due to his behavior. It is those beautiful terrible twos, you know the ones that last into the teen years.
As for prego here. I am fine. I'm feeling the pregnancy start to take it's toll. I am showing a tad, but not enough to matter to anyone that didn't know us. I am very tired and my feet can not take much more of this walking. We probably wont get many more chances to explore now due to treatment starting. We have been told that he will sleep several hours afterwards because of the benadryl and he will be very grumpy from morphine. We will be better off if we just hang out here rather than venture out with a ticked off two year old. We are also nervous about the treatment. The 3F8 causes severe pain, especially in his chest. It will be almost like a heart attack at times. The antibody can cause high blood pressure and hives. We pray the pain is very short, and I'm sure Monday will be a very eye opening experience. We all know the experience and pain will be worth the outcome.
June 27, 2003 Day +86
We went to the Little Shop of Pottery and Plaster today. Taylor enjoyed it for about 2 minutes then lost all interest. He was very good while Jim and I finished our painting. We were there almost 2 hours and he never bothered anyone or anything. Jim Painted a train, Taylor painted Elmo and I painted a flower. It was very therapeutic to sit there in the quiet and paint. Taylor did end up finishing his multi colored Elmo and even added some glitter. He is proud of his masterpiece. We came back to RMH and ate lunch. He ate 3/4 of a large can of spaghetti O's. He is eating so much better. Speaking of eating better. Last night there was a cook out at the RMH and Taylor sat with his new friends Sophie and James at a child picnic table. He ate all of his hot dog and chocolate chip cookie even though the other kids didn't eat anything. He got to pick yet another toy. This time he picked play dough. Yipee!! We played with it for a while, but it is going to "accidentally" get left behind when we head for home. I had a nice talk with a 16 year old and her mom. They are from Utah and she was dx with stage 4 NB at age 3. She is doing great now. It is always great to hear those stories.
Taylor is napping and we are going to start packing all we will need for the ball game and start our walk to the subway station. We will update again as soon as we are able.
We were able to get tickets to the Yankees game tonight, and we will be taking Taylor to historic Yankee Stadium, the House that Ruth Built. Taylor is excited about the baseball game. He has been watching the Atlanta Braves play the past few nights in preparation for tonight's game. We hope to take him early to try and catch batting practice. Taylor should enjoy the game, the people at the Yankees organization were able to get Taylor tickets behind home plate, so he will be able to see the game and stay interested in the action. We will post pictures from the game as soon as possible.
June 26, 2003 Day +85
Today has been a crazy day and it is only 1:30 here in the big apple. We got a late start after sleeping until 10:00. We still have done nothing but hang around the room. We got a call from Dr. Modak saying that BCBS had denied payment and that until we got it straight he could not treat Taylor. Well, that flew all up my back side. The thought that he was telling me he would deny my child treatment if my insurance didn't pay and they refuse to even look at our Medicaid card. First I was mad, then I cried, then we got even. I called my mama and we got the ball moving. We interrupted our case management nurses lunch (sorry) to get it settled. We have a wonderful case management nurse at Blue Cross who had the whole matter fixed within 20 minutes. BCBS will pay for the treatment. Thank you Lord and BCBS of ALABAMA. We learned that it was basically MSKCC fault as we well figured. They submitted this sentence to clear him: Please clear this patient for a clinical trial. They gave no explanation at all. They have sent the full explanation today, but expected an answer today. Go figure. Our case manager looked it all up herself and saw that the actual clinical trial is free and all that we need covered is monitoring and his GM-CSF meds. All of that is not a problem she said.
So, with that worry behind us we are off to lunch. Taylor has not even thought of food all day on a day he can eat. Little Boys, they are a mess.
Again, we thank BCBS especially Guh and Dell for your help at the drop of a hat, in the middle of lunch none the less. We thank you all for your prayers and support. We wouldn't have made it this far without all of you.
June 25, 2003 Day +84
Well the results are in and it looks as though we will be spending the next 2 years traveling to and from NYC. All test results are NEGATIVE for neuroblastoma. She really had no answer as to why the B'ham test was positive, but who cares. We will begin the shot tonight and antibody on Monday. Everyone say a huge thank you to God in your prayers tonight. Today was filled with a lot of answered prayers for us. It has been a long day for Taylor. He slept until 9:00 and could not eat when he woke up. He cried and cried. We finally left for the hospital at 11:00 even though our apt. was not until 12:30. The playroom there keeps him occupied much better than anything in the RMH. He had his MIBG at 2:00 and it lasted until about 3:30. He has not eaten all day so we promised him Olive Garden, his favorite. Plus, today calls for celebration!!!
Last night we went to Christmas in June. It was held on the terrace and Santa dropped by and all the kids got to pick a toy. They called by room number and Taylor was one of the last to be called. Thank goodness the toy he had been eyeing was still there. He picked a garbage truck with little men and road signs. He has already gotten good use out of it, so it was worth the wait. They had a cook out and Taylor ate 2 wieners. It was the first time he had ever had one and he liked it.
Today was another day of excitement. Jim got to see a lady get scooped up on a stretcher after being hit by a car. Taylor and I saw and old lady try to J walk and about 10 cars lay on the horn. She shot them all a bird and kept going. No Steve Guttenburg today.
Continue to pray for his success with this treatment. Be sure to thank God for the great news. We thank all of you for your prayers. They are working. I better go so we can get this baby some peet peet.
We are waiting to go back for the MIGB scan. We did find out that the hospital has already sent a more detailed description of the trial to Blue Cross for reconsideration, so we will keep our fingers crossed!
Today is the big day! We find out if Taylor will be eligible for the antibody treatment. We also found out yesterday that Blue Cross and Blue Shield of Alabama has denied payment for this treatment. This also includes medicine. Taylor will require a shot like he did during chemotherapy that costs about 400.00 per shot. He will require 19 shots each treatment. They have denied payment because they said the treatment is experimental. It is a clinical trial (like the one he was on in Alabama) sponsored by National Institute of Cancer (NIH) and the Children's Oncology Group (COG) and 95% of all cancer treatments are done through clinical trials. The subsequent trial that followed Taylor's chemotherapy protocol in Alabama was also an antibody trial. It was closed due to a mis-calculation in dosage at another hospital. This antibody trial was for a humanized antibody (Ch.13.18) that was also sponsored by NIH and COG. We will of course appeal Blue Cross' decision, but there have been many other parents have the same thing happen to them, with no such luck in reversing the insurance company's' decision. There is a bill before Congress right now that is a very important step to prevent this type of injustice by the insurance companies. I'm asking everyone to write your congress man or woman and stress the importance of this bill. Hopefully, it will be passed, and we will not have to worry how this treatment will be paid for. We will send one letter and one email everyday until we receive a response from our congress person, and I hope you will do the same. I will post information later on the bill that is before Congress right now, and also information on how you can contact your congress person. I posted a new video that can be found below, and two pictures that we took of Taylor with the fireman.
June 24, 2003 Day +83
Today really hasn't been too bad. We got up around 9AM and got ready. We ate breakfast at our usual McDonald's. While we were eating something happened down the street. There were several police vehicles, ambulances, and fire trucks. Taylor loved it. When we left he got to get his picture made with a fireman by his big woo woo truck. We got to the day hospital early, but they took us anyway. We met Dr. Kushner today. He was really nice and funny. He said that some of the bone marrow tests are back and they are CLEAN!! There are still several different bone marrow tests we are still waiting on and could have evidence of disease, so keep praying they are clean or at least minimal disease. He gave us the paper work for tomorrow and we will get that out of the way so maybe tomorrow wont spent in the hospital all day. After his injection for tomorrow's MIBG we caught a cab and ate at Planet Hollywood. Taylor ate almost all of his, you guessed it, pizza. We are now back at RMH and getting ready for a nap so that we can head back to the grocery store for milk and diapers. We almost forgot, we also saw Steve Guttenburg again this morning! Small world!!!
June 23, 2003 Day +82
Today was a day of many firsts for us here in New York. We rode the subway for the first time. We saw the Statue of Liberty for the first time. We saw ground zero for the first time, and we saw our first true "Hollywood" star, Steve Gutenberg. The Statue of Liberty was incredible. Taylor really enjoyed walking around the Statue, and the view of the skyline of New York was awesome. We then ventured to ground zero, what a moving experience. So many people lost their lives at that one spot. We were so tired, that we then headed back to RMH.
Taylor loved the coo-coo aka subway. It isn't as bad as we had imagined, it is actually very well layed out and easy to use. We got right off at historic Battery Park and road the ferry over to Liberty Island. You can not go in the statue anymore after 9/11, so we didn't do much other than walk around. It is finally hot, very hot. We ate lunch there as well since we had such a long ride back. Taylor fell asleep on the ferry ride back, so we walked to ground zero. It was huge and chaotic. I can only imagine how crazy those streets were that day if it was that hectic on a normal day. There were several memorials but pictures were not allowed. I would love to have seen the towers in person. The buildings near ground zero are so tall and they are no where near the height of the twin towers. They look to be rebuilding there. After that we headed to the subway station. On Church St. we saw St. Paul's Cathedral. This old church houses a huge memorial to 9/11. It had tons of photos and info and a time line of events. This church was also the site of George Washington's presidential inauguration. Taylor woke up just in time to get on another subway. We got off in Manhattan and walked 7 blocks back to the RMH. We are beat, but Taylor is full of energy!! We plan on staying in the RMH for dinner tonight. Hopefully something will be going in.
Last night we finally met our friend Morgan, her mom and aunt. Taylor got to meet Sophia, but Jim and I haven't yet. I am sure we will see them tomorrow when we head back to the hospital. We go Tuesday and Wednesday for tests and have Thursday and Friday off. Please continue to pray for us all and for the complete healing of these kids up here receiving treatments for various kinds of cancer.
June 22, 2003 Day +81
Today Taylor slept late. He needed to catch up, it has been a long week. He did not sleep well Thursday night due to all the pain he was in from his bone marrow biopsy. Friday night he slept okay, but he went to bed late and woke up early. Saturday was a long day. He never did finish his nap. We finally ended up heading back to time square to ride the Ferris wheel again and get the train set. He was a very good boy. He waited in line very patiently until it was his turn. We came back to the RMH and played in the play room. We bought Kentucky fried chicken and ate it as they set up free dinner. We didn't see the sign for that. Oh well. We came back upstairs and played with the train and laid around until we all finally conked out around 11Pm.
This morning we cleaned up our room and put away our clean laundry. Jim went and got us breakfast. Taylor did great with breakfast for the second day in a row. At noon we met with Eric Kackelhoffer. That is my meme's great nephew. We had no idea that he lived here in NY. He took us to York's Pizza and to Central Park. He told us a lot about the city and helped us get an idea of how things work. It was very helpful and nice to know there is someone here to call if we need something. Thanks Eric.
We had a nice time site seeing and Taylor loved the boats and ducks in central park. We even saw some blue sky. Taylor started getting very grumpy, so we had to cut our trip short. He fell asleep about a block later and slept all the way home. He of course was ready to play as soon as we came back to the RMH, but we are pooped too, so he is going to have to take a nap.
We still have one more free day before we go back to the hospital. It is supposed to be sunny on Monday, so hopefully we will be able to really explore. It is supposed to go back up to the 90's soon too. They say all the cement and buildings make it very hot here, so it will be like home:) The 60's and 70's have felt nice, but kind of cool at times. Taylor will be glad to be able to shed the jacket I am sure. We bought him a plastic stroller shield that fits perfect over the stroller to keep him dry and the wind off. He likes it because we told him it was a windshield. It keeps him from needing a mask all the time too.
We will update again soon. The computer lab is not always open, so if you don't get an update that is why. Please remember to sign the guestbook!!
June 21, 2003 Day +80
Today we went out on the town, with our first stop at McDonalds for some breakfast. Taylor ate all of his biscuit. We then headed to Times Square and the worlds largest Toys R Us. Taylor had a blast. He got to ride the indoor Ferris wheel, and really really wanted to buy a wooden train set. He loves playing with those. We ended up talking him into a plastic train track, which we will get later since we were not going straight back after we left the toy store. We then walked the 10 blocks down to the Empire State building. Taylor enjoyed the view from the top, but it was very windy and cold so we did not stay very long. You could see the Statue of Liberty from the top. There are some pictures that I will be posting shortly, so enjoy them. After descending from 86 floors down, we headed to Sbbaro Pizza for some peet peet. Taylor ate a whole piece himself, but he was cranky toward the end, only due to the fact he had a busy day already and no nap. He fell right asleep, so we headed back to RMH for a nap. He woke up as soon as we got into the cap, and hasn't went back to sleep yet.
June 20, 2003 Day +79
TGIF!!! What a long day. We didn't have to be at the hospital until 9:30, but he had to be NPO after 8:00 AM, so we left early to get him breakfast. We went ahead and went to the day hospital rather than walking back to the RMH. After we turned in his urine collection we went to the play room and played a little bit of everything. He wore himself out in there and played great with the other kids. The bottom of his shoes are covered with play dough, but that is okay it proves he had fun. He did art, played connect four, cooked, played with a castle, played on the computer and more. He never once cried or got ugly. The child life specialist was amazed that he had not eaten all day and was playing that well without being grumpy. Taylor picked up right where he left off in Alabama. He has charmed his way in. He got to help the child life specialist pass out some fliers. He went with her for about 20 minutes. She said he cried one time after they had been gone a while, but when she promised he was going back to mommy and daddy he was okay. He had to be held a few minutes after he got back, but he was playing again in no time. While playing connect four with another little girl who was about 4 he beat her several times. It was so funny because neither of them had a clue how to play, but they had a blast.
He was injected with the radio active dye at 11:00. We waited around until 1:45 and then he was put to sleep and had the bandages removed from his bone marrow aspirate sites. They had to be removed so they didn't show up on the bone scan. At a little after 2:00 he had the bone scan. They do things so different here. Children's hospital is much nicer and more up to date. Even the equipment here is old. Usually a bone scan is about 45 minutes and they do one shot at a time for about 5 minutes each. Today they did one sweep over his body and that was it. The important thing is that they have the top NB doctors to read the scan later.
Taylor finally woke up, but it took forever since he had not had a nap and decided that then was a good time to get one. Anyway, Dr. Modak came to talk to us and said that yesterday's CT scan was clean!!!! The little he saw of the bone scan showed it was clean!!! That was such a relief and we will rest much easier over the weekend. The bone marrows take the longest and that is the most important. We know there is disease there, but please pray it is not spreading. Better yet if it had been a mistake and it is clean now. We should know the results of that on Wednesday and they will read the MIBG results Wednesday too. We will wait after his procedures Wednesday until all tests are read and we know if he is or is not eligible for the 3F8. If he is we will sign all consents and start GMCSF shots in the leg for 5 days and start the antibodies on the following Monday. We have Monday all to ourselves, no hospital trip. If the weather holds up (it has been raining since we arrived) we will not be doing much of nothing. But if the sun comes out, we are going to try to visit some top attractions, such as Times Square, Statue of Liberty, Empire State Building and some other places of interest around New York.
June 19, 2003 Day +78
Today started off with a early 6 block walk to the hospital. We crossed many a busy street. People walk every where here, so we were not alone on the busy streets. We arrived way early, but we were not sure where we were going. We had an 8AM appointment with the financial lady, who showed up at 8:30. We had other appointments at 8:30, so the day was already off to a slow start. We found out that BCBS has denied the initial application for this treatment. Once he is eligible they will resubmit all the info and we will try again. We were told that everyone here has fought the insurance tooth and nail. We are also still working with Medicaid to see if they will cover out of state. After another long wait they drew 10 viles of blood. He should be tired tonight after loosing all that. Then we met with Dr. Modak. He was very nice. It was like diagnosis day all over again. We went over all his risk factors and tumor markers and such and all about what we could and couldn't do if he were not eligible for this treatment. I must say I am a little worried since his marrow has disease and it has been since March that he had any chemo. This stuff spreads fast, so pray very hard that it has not spread and we will be able to get this treatment. We waited some more and then finally we took a walk to the CT area. That was the longest CT ever. Unlike Children's they did not let us stay in the room while he received the CT Scan, so we don't know what they did exactly. After that they did his bone marrow aspirates and biopsies. He has never had 4 pokes on front and back, so he was very sore and upset. He seems to be feeling better now. He was sent back to the RMH with a urine bag and we have to collect as long as we can. We will go back tomorrow at 9:30 to do more tests. It was very slow and we were told that it is always that way. Children's was slow, but not like this. It was also a mad house. People everywhere, but again we were told it was a slow day!! We were supposed to stay until 5pm and let them pull the bag, but since he had been bagged for 2 hours and not gone a drop they let us go. It was pouring down rain and we had no umbrella. We finally had to get a plastic bag and put Taylor's legs in it and run it over his lap. He had a hood on his stroller, so he was dry. Of course, by the time we found a bag and got outside it was not raining anymore. It is so hot in the RMH and we do not have a thermostat in our room. So we are suffering. It feels great outside it is in the 60's, but everyone is in sweatshirts and such. I figured the locals would be hot since they are all used to the cold winters, but they think it is cool. We have not been made fun of for our southern draws yet, but I am sure it is coming. We have met people that are far from home, but no one from the south yet.
We are having Taylor's air mattress sent to us. We only have 2 twin beds and two people are not sleeping good like that. Taylor fell off the bed this morning. He never even woke up:) We are having fun even though it is mostly days of medical procedures, rain and culture shock. We will keep updating.
Please remember Taylor in your prayers. We really want him to receive this treatment and to do so he has to have little or no disease. Pray he not only gets it, but it is successful in curing him.
June 18, 2003 Day +77 Radiation #12 to head
We are unpacked and settled into our room. It is basically a hotel room. We do not have our own kitchen. We share with several other families. We have one cabinet and one refrigerator shelf. We walked 1 block to the grocery store. We spent 89 dollars and we have 2 cans of ravioli, some noodles, chips, cookies, crackers, milk, diapers, wipes and a few other little things. WOW!!! A 24 pack of diapers was 27.99. We didn't buy much cooking stuff. We heard they have a lot of free things, so we will see. Everything is tall here, but not wide. Roads are all one way due to parking on both sides. Double parking is all over. The grocery store isles were even just wide enough for the buggy. Obviously New Yorker's go to the store daily. You can't even push the cart through the line. Once you unload the buggy you leave it. We looked crazy with our 5 bags, everyone else had one or two and carried it all out. It is a culture shock already and we have only seen 2 blocks. We are about to explore the RMH. We will update tomorrow after our first day on the town.
Well we are off! As I type this, we are in the air, headed to New York. By the time this is posted to the website, we will have landed. Taylor did wonderful with his last radiation to the head. It was Ca Ca's first visit for radiation. Taylor was good and drunk after it was over, and we got some video of it. If you want to see the Drunk Taylor, click here. We did have a little accident when leaving the radiation building. Pa Pa side swiped a car that had parked next to him. The person came from the wrong way and was so sideways in the parking spot, he did not realize the back end of the car was almost touching his big truck. We are on a Delta direct flight to New York, only problem, it is one of those small Comair flights. The whole plane only olds 35 people, and you had to actually walk out onto the tarmac to board the plane, but hey, what ever gets us there is alrighty we us! Taylor is behaving like a big boy, and is flirting with the stewardess. We will try to update the page as soon as possible, and everyday, as long as the computer lab at RMH is open.
We made it to the RMH. Landing was a little scary. We were about 10 feet from the runway when the pilot decided it was unsafe to land due to another airplane crossing our runway. He gassed it and took back off. New York Taxi Drivers, one word: FAST! It is like nascar. It is not very pretty outside here, plus with all the tall buildings, it's dark and gloomy. We will update a more detailed description of the RMH and New York City as soon as we settle in.
If you would like to be included on a mailing list, and receive an email every time Taylor's Page is updated, please click here. Every time a new update is made, you will receive an email.
We have had a lot of questions about the treatment that Taylor will be receiving in New York. If you would like to read more about the treatment, this website will explain everything that he will go through. http://www.mskcc.org/mskcc/html/3215.cfm
June 17, 2003 Day +76 Radiation #11 to head
We were on time today and all went smooth. Only one more left!! After the rocky start we had with radiation it is now not so bad. We will not know what to do with our mornings if they are not spent driving to and from UAB. Taylor had clinic today and all was fine. His weight was up to 25.1 from 24.9 last Tuesday. Every little bit counts. We met another neuroblastoma patient this morning. He is now 3 and was dx with stage 1 nb at 6 months. He did not have to do chemo and all that, but he still has a high risk for it to return. I of course forgot to get his medicine while we were at clinic. It is so hectic there and so slow that once it is over I am so focused on getting out that I always forget the medicine. I'm going to "let" Jim go get it this afternoon. I have some stuff packed, but a lot left to do, so I better get at it. We will be in NYC in 24 hours, yikes. We are bringing the computer and will do our best to update daily.
We spoke with Dr. Berkow about the noodles. He has no need for them, but wants us to check on how often he will get an IV and will he need antibiotics and such for possible neutropenia and such. If that is something that will happen he prefers him to keep the noodles. We shall see, that was not the answer I was looking for.
We will return to B'ham on July 12. I will go back to the doctor on July 14th and Taylor will go back to clinic on July 15th. We will still be busy when we get back.
Remember to keep us in your prayers as we travel to and from NY. Pray that is a successful treatment. Pray for all our friends new and old that are battling this monster.
June 16, 2003 Day +75 Radiation #10 to head
Wouldn't you know it, last night was one of those nights where I couldn't sleep. I tossed and turned until way after midnight. Of course I was snoozing just fine at 6:00 when the alarm clock went off. We were a few minutes late due to my snoozing at 6:00. It didn't matter since the machine was down and we had to wait until he could be done on the other machine. It didn't take but a few minutes, we were still gone by 8:30. The days radiation is quick the valet people are slow. We sat close to 20 minutes waiting on our car. I am going to try not to think about how they drive it. I had a bucket with a lot of stuff stuffed snuggly in it, but when I opened the door to get in when they brought the car back the whole bucket and all its contents hit the ground and scattered. Great since we were 2 feet from 6th avenue.
I have had many people ask about certain words Taylor uses that we write in our updates. I thought today would be a good day to tell you all about the Taylor Lingo.
Ca Ca- Jim Night Night-blanket Toot Toot-tootsie roll hi-hello or telephone
Ma mama-Pam Mine-passy My sticky-bubble tape tt- TV or bathroom
Papa-Eddie La La-Elmo car bike-riding firetruck brook- broke
Pippy-Neal Whoo Whoo-Fire truck noo noos-edible noodles or his broviac pish-fish
Guh-Janie Bob- Construction worker/equipment titichen-kitchen sit- sit or chair
Gugan-Uncle Dugan Huh Huh-oatmeal copter-plane/helicopter muck-milk
As you can see we speak our own language around here. There are so many Taylor words. Maybe this dictionary can help you all with updates if I forget to explain:)
Please continue to pray for Taylor's 100% cure of this disease. Pray for all our friends that are dealing with cancer. Remember Gracie and Carter and that their wbc start to rise. Pray for a safe and successful trip to NYC.
June 15, 2003 Day +74
We have had a very busy day. It is 10Pm and we have just come home. We started our day by getting up and going to eat breakfast. Taylor ate 2 biscuits. We also ran into Miss Stacey from Hand in Paw. Taylor didn't recognize her without Sadie. She is from NYC, so she is going to help us out with subway info and directions and such. Thanks Stacey. We came home and played and looked at our new goodies we got to take to New York. Guh came over to play and ended up taking a 2 hour nap with Taylor. Papa came over to help Ca Ca work downstairs on the room. Pippy and Pop came by to play for a while. Soon we had G-mom, Jeanna and Bob over too. Jeanna and Bob brought the materials to make a bird house including orange and blue paint:) Taylor helped Ca Ca on the first piece of wood then he traded the work in for a bike ride. Ca Ca and Papa finished it. By 8:00 we realized we had not even had lunch or dinner. So, we headed to Cracker Barrel. Taylor likes to eat late. He ate 2 1/2 biscuits and a good bit of his corn plus all his tea and milk. We scared Guh by being outside and then gone for so long. She was still up at 9:30, way past her bed time, looking for us. Sorry Guh! He was about to fall asleep at the table so we had no trouble getting him in bed. He is fast asleep in his clothes.
Happy Father's Day to all the daddies out there!!!
Please continue to pray for our ever so close NYC trip. Remember all our friends with cancer and their families. Remember those daddies and husbands that are celebrating this Father's day with out one of their family members. Cathy.....Congrats, I told you things happen for a reason:)
June 14, 2003 Day +73
It has been nothing but wet around here. Our yard looks like a river. All our drainage pipes are full and water is just pooling all over. We will be drying out for a while. We have again spent the day cleaning and resting. We all piled up and took a 2 hour nap. Daddy is down stairs putting some finishing touches on the room, so that the sheet rock can be finished while we are gone. Taylor has been keeping us full of giggles today. We came into the living room with his night night around his face with some clamps from his doctor kit trying to get it to stay on. Once I helped him get it to sty he proceeded to operate on my tummy. I am not sure where he got that because his doctors do not wear a mask to treat him. We all rode to Lowes and Taylor and I sat in the car. It took Jim a while and we were both getting bored, so when Jim got in the car Taylor called him a slow poke. I had been getting him to say it, but I never dreamed that he would actually do it once Jim came back. He polished off 2 slices of pizza crust and all. He had a blast last night in the tub. I didn't fight him to get in. He was not ready to get out, but then we reminded him that he had his fishing game, so he got out. He is cheater, he turns it off and sticks the pole in the fishes mouth then turns it on and screams yeah because he caught one. It is hard though, I was getting frustrated with it myself.
Happy Father's day to all you dad's out there!!!
June 13, 2003 Day +72 Radiation #9 to head
It's Friday the 13th.... No bad luck here. We were in and out in no time and would have been faster if we hadn't been chit chatting with the anesthesiologist about his new baby due in 1 week. Taylor was giving him some pointers on how to deal with a wild child. Mommy had dinner last night with Miss Rhonda from 4 tower. Taylor and daddy stayed home and played with Papa and G-mom. Taylor will get to get in the bath tub tonight for the first time since May 21st. He has been getting a sponge bath because of his radiation markings. Finally, he will be really clean. I will probably play heck getting him in and then again getting him out:) Yesterday I ordered the last of our supplies for cleaning his noodles. I only anticipate him having them another 2 weeks or so. Please pray they do indeed take it out after his testing in NYC. We will be noodle free since we lost the TP tube in his nose yesterday. We also finished his Diflucan yesterday. That is one down!! We only have 10 more days of the folic acid and then we will be down to 2 meds Mon.-Thur. and 3 meds Fri.-Sun.
Please remember the Bakers, Collins' and Coles' as they deal with the loss of a loved one. Please see the links below to visit their web pages. Please continue to pray for our insurance issues and for Taylor's 100% success with this treatment. Pray for Gracie and Carter to have those cells start growing. Pray for Gracie Coffey as she has some tests done today.
June 12, 2003 Day +71 Radiation #12
I am coming back to you today to ask you to pray for Colby's family. Colby passed away this morning after 3:00AM. You can stop by his site and offer his family some kind words at www.caringbridge.org/pa/colby
I am also coming to ask you to
pray for our latest situation. Marina, the financial counselor from Memorial
Sloan Kettering, called to tell me she had taken care of all the paper work and
now we just wait. We are waiting for Blue Cross to tell us if they will pay for
this treatment. It is a clinical trial and must be approved. The drug itself is
given by MSKCC for free, but the monitoring of the procedure, labs, and all
tests will be on us if BCBS does not approve this. The same paper work has been
sent to Medicaid to see if they will pick up if BCBS doesn't. We will do it no
matter what it costs, but it will be much easier to do if we are not worried
We should be done with radiation today, but as you all know we will go back for 4 more treatments to the head. The treatments should be really fast now and he should require a lot less sedation, so we will be in and out rather quickly. That is good since we are working on a 10:20AM flight on Wednesday morning. We will really have to book it to get there and checked in on time. Kay is asking for medical assistance, so hopefully that will help speed up the process for us. Taylor was asked to be in a documentary today. Miss Stacey, who brings her dog Sadie to visit, is a survivor of breast cancer and is going to climb Mt. Kilimanjaro. Taylor is in her documentary and will be in the Hand in Paw News letter. Hand in Paw is a great organization that allows people and the dogs to visit the kids and adults around the different hospitals. Those animals really do brighten spirits. You can check out Hand in Paw and maybe even see Taylor and Miss Stacey on their web site. www.handinpaw.org We were also asked by The Red Cross if they could use Taylor's picture for a Montgomery blood drive and their employee news letter. He is quite the little movie star these days. HE is a total ham, he never even slowed up this morning as she filmed him. In fact he was very goofy, he was showing her how frogs jump and say "bibit". It is a documentary on Stacey and Sadie, but it turned into the Taylor show.
Taylor's TP tube is gone. He pulled it out in his sleep. Oh well, that is fine by me, I was ready for it to be gone. He isn't using it anyway. IT was just there in case we needed it again. I doubt it, he is eating better everyday. Taylor was a little ornery on the way home. He had dropped his passy and I couldn't reach it and he was very ticked off. He slapped the window with the back of his hand to show me just how mad he was. Well, he wont do that again. There was a fly in the car and he just so happen to swing fast enough to kill it. Go figure, we can chase a fly all over the house for hours and miss time and time again and he accidentally kills one in the car with his bare hand. It stuck to his hand and he freaked out. He screamed the rest of the way home even though I got it off with a napkin. He is still talking about the bug on his hand.
That is all that is going on around here. He is playing cars and I am going to try and get some medicine down him. Keep those prayers coming. We can feel them and they are working. Remember Tina, Jimmy and Meagan. Remember to pray that Gracie and Carter's cells grow fast. Pray for Gracie Coffey as she goes back to Children's tomorrow for some tests. Do you all remember Claire Collins that we put a web site up for a while back. She was a mother who was battling leukemia. She lost that battle Tuesday. Please pray for her husband and children as they struggle through these difficult days. http://www.caringbridge.org/al/claire
June 11, 2003 Day +70 Radiation #11
We had another easy day. Guh went with us today and got to witness the lil' drunk in action. We stopped and got a biscuit and he ate all most all of it. Only one more treatment to the tummy and then he will just do the head for the next 5 days. He is so silly. He shook his bootie for the doctors and he holds his hands up in the air like a roller coaster ride when we go down drive way. No, I don't drive like a roller coaster!! My doctor visit was fine. Dr. Damrich could hear the heart beat faintly so I did not get an ultra sound. He said my placenta was anterior because of my c-section. I have learned a lot of medical terminology, but I can not explain that one. I will go back Monday, July 14th after we return from NYC. I should be able to find out the gender in about 8 more weeks.
There is not much to report today. Taylor is napping and Guh is cleaning:) that's the way, uh huh, uh huh, I like it!!!! Please keep Taylor in your prayers and all our other friends. Carter received his new cells yesterday and Gracie gets hers today. Pray all goes smoothly and those cells grow fast.
June 10, 2003 Day +69 Radiation #10
We are home from radiation number 10. We are nearing the end, yahoo!!! Today Taylor didn't even go to recovery because he woke up so fast. He got to stay in the waiting room and play with Ellie and Miss Nena until he was awake enough to go. Miss Nena gave him a doll that has been prayed over and anointed for Taylor's specific needs. It is very nice and he has been playing with it. We headed to clinic at Children's and had labs drawn. It went very fast since it was labs only, no doctor visit plus clinic was empty for some reason. We went up to stem cell and visited his nurses and doctors up there. He had a blast. I thought of Austin while we were there. Taylor was running and laughing and had all the nurses right behind him just like Austin did. How I wish they could have played together in that hallway. I think that was just my sign that Austin is watching over his little "fwend" right now. We left there at about 10:15 and went over to Amsouth to visit daddy and his work friends. As usual Taylor made out like a bandit. He got a pez dispenser, some pencils, rubber bands, candy, and post it notes. We went to eat at Arby's but Taylor did not eat much at all. He did eat a biscuit while he waited in clinic so I guess he just wasn't hungry.
Taylor has a new favorite toy. A wallet. Jim got a new one this weekend and gave Taylor his old one. Taylor has it stuffed slap full of those fake credit cards that come in the mail and expired insurance cards and blockbuster cards. He even has a Buzz Light-year drivers license in it. He has showed every card to everyone we have come across.
June 9, 2003 Day +68 Radiation #9
We were early this morning!! That was because I was up at 4:30. Taylor woke up and wanted in our bed. After a night like last night I wanted him there as well. I would have let me climb in my bed even if he were 40 years old. After attending the funeral of a dear friends precious angel I wanted to be sure and hold mine close. I just could not sleep and I just sat in bed thinking. This is not where I thought I would be at this point in my life. When I was a senior in high school and I filled out the year book info I did not put caring for my 2 year old with cancer as the answer. I did not list Cancer sux, Cancer kids, or National Childhood cancer Foundation as my activities and clubs. In fact nothing is really as I thought. Sure we all sat around naming our imaginary kids and talking about our dream car, but how many of us did it. We all grew up to hate the name we picked probably due to a bad date with a boy with that name or jealous of a girl with that name. We all do act like our mothers because we are old enough now to understand why she acted that way. We grew up to understand money really doesn't grow on trees and the Lexus and the 3,000 sq foot house we imagined didn't pan out either. However, none of us would change a thing. As much as I would love to wake up from a bad dream and see I was not really dealing with cancer, I wouldn't want to change the path it has put me on. It has made Jim and I closer to each other, to God, and to Taylor. We have learned to appreciate every minute. We are no longer living in the world of "that can never happen to me", but I don't see that as a bad thing. Yes, our innocence is gone, but that just allows us to savor every moment and event. This path has also led to some wonderful friendships with Doctors, nurses, hospital staff, parents, and children. Moral of the story, cherish every minute of your life and hug your kids often. Remember all us cancer parents and kids in your prayers and remember we are all pretty tough cookies.
Okay, okay, enough of the emotions of the pregnant lady. Taylor's treatment went just fine. He woke up quickly and we were on our way to get breakfast. He lapped up some french toast sticks and tater tots. He is now playing with his surprise from the beach. A slap bracelet with tootsie rolls on it. Slap bracelets, who remembers those? That could start another emotional flash back. I think Jim and I played with it just as much as he did. Taylor has 3 treatments to his pelvis and tummy and 7 to his head. We go to clinic for labs only tomorrow. I go back to the doctor on Wednesday for my 3rd prenatal visit. Hopefully those will both be fast appointments.
Please keep on praying for Taylor and a 100% cure for him. Pray for Tina, Jimmy, and Meagan as they pick up the pieces of their broken hearts. Remember to keep praying for all our friends who are doing so well and to pray that they keep doing great.
June 8, 2003 Day +67
Our date went good. We all had a blast. It has been a long time since we all went out to eat. Taylor did not eat like he did the day before. He did manage to eat 2 pieces of bread, so I guess he did okay. Jim and I headed out about 7pm last night. G-mom and Papa spent the night at or house so we could get there and not be to rushed. Guh came to relieve them this afternoon. We arrived in Foley a little before midnight last night. We got a hotel right across from the outlet center. We ate breakfast this morning at 10:00. It was nice to sleep until 9am. We then went to the outlet and did some shopping. It was so hot and humid that it was yuck. We checked out of the hotel and went to the beach. We just looked and left. By the time we got there neither of us felt like getting all sandy and have no where to clean up. We saw that our favorite hotel has been torn down. Oh well, things are not meant to stay the same forever. We then headed to Fairhope. What a gorgeous town. We stopped at a gas station and changed into our dress clothes. We were early so we drove around and did some site seeing. We finally went to the funeral home. Austin looked as handsome as ever. There was a slide show of really good pictures of the family. We saw many familiar faces. After our visit we headed for home. In fact I am typing this in the car. What else do I have to do?
Please pray for Taylor's continued success. He now has Austin as God's right hand man and his guardian angel. He will keep a close eye on his friend. Pray for Austin's family as they get through these difficult days and pray for his grandfather's full recovery from a boating accident. Remember Gracie and Carter as they inch closer to transplant day. Remember all out other friends fighting this monster. Remember all the families that will soon be diagnosed and those who have lost the battle.
June 7, 2003 Day +66
Today has been spent spring cleaning, finally. What better do we have to do on this rainy day. Taylor slept all night in his room and when we woke up this morning we found him in the living room playing. He had not bothered to wake us up. He is getting so big. He rode with Ca Ca to the dump again. He is such a boy because he loves to go to the dump. He had another McDonald's biscuit and pudding, so he has eaten fairly well so far today. I hope he pigs out tonight on our "date".
Jim and I will be traveling to Fairhope tomorrow for Austin's visitation. We will update as soon as we get home, but it will be a late one. Please keep Tina, Jimmy and Meagan in your prayers as they learn to live each day without Austin. Drop by their page and offer some words of support. www.caringbridge.org/al/austin
Remember to pray for Taylor's continued success and that of all his cancer friends.
June 6, 2003 Day +65 Radiation #8
We just found out that our very dear friend Austin passed away today. Such a wonderful spirit. Tina and Family can really use our thoughts and prayers right now in this difficult time. http://www.caringbridge.org/al/austin/guestbook.html
Today was smooth as silk. Finally, that is what we have been waiting on, just a day that we were in and out. We were early today and it was still after 8 before they took him, but I was taking care of business with our social worker, so it was okay. The valet people were behind again, but today it worked out in our favor. Our car never even got parked, so it was sitting right where I left it when we were ready to go. Taylor woke up fast today so that he could feed Sadie some treat. He was awake enough to walk her out with out help today. He has really enjoyed having Ellie and Sadie come see him. Miss Nena and Miss Stacie are very nice too. We stopped by Wal-Mart to drop of film and kill time before meeting daddy for lunch. Wal-Mart is going to hate me. Every aisle we went down he found something he wanted and I stashed it on a shelf on the next aisle. We would have spent $100 dollars if he had been in charge. He made out with a bug net. I have yet to figure out why that is what he chose in the end, but whatever keeps him happy. We picked daddy up from work and headed to The Olive Garden. He can't have salad yet, but he sure did pig out on noodles, pizza and bread. We have a "date" with Chris, Temperance, and Christian tomorrow and it looks like it may be at Olive Garden. Be on the look out for new pictures. I will twist Jim's arm to get some new ones up. Also, if you want to donate to Taylor's fund as well as get clean carpets, call Deluxe Carpet Cleaning and ask for Jason Watts to do your carpets, furniture or vents. Jason is Taylor's favorite uncle, okay only uncle, that is willing to donate part of his earnings to Taylor. You can reach Deluxe at 941-3330 or www.deluxecarpetcleaning.com
Please continue to pray for Taylor's 100% cure and our trip to come together and be hassle free or at least low hassle. Remember Claire as she continues to fight ALL and remember Austin and Patrick, they both need a miracle. Remember Gracie and Carter as they finish up pre transplant chemo. Also remember all our NB friends, Morgan, Sarah, Jay, Cam, Chris, Trey and many more. Remember all the families who have lost there battle to cancer and all the families who will be diagnosed today.
June 5, 2003 Day +64 Radiation #7
Today was short and sweet. We were late by about 15 minutes. We left UAB at 8:30. We were only there 45 minutes and it was mostly waking him up. He was very sleepy today. We waited close to 20 minutes for our car. The valet people were very behind this morning. We saw miss Rhonda from 4 tower, she came to radiation with our friend Patrick. Please remember him and his family in your prayers. He has run out of options for his treatments. Today was number 7 to the tummy and number 3 for his head. Taylor has eaten a lot so far today, I hope that is a sign for the day. Deborah, then nutritionist called yesterday. He did very well with his feeds from May 22-30 and then he dropped below 800 calories a day. She did not make us turn his feeds back on, but she is going to leave the tp tube in to be sure we do not need to use it again. It is very traumatic for him to put it in and so we will hang on to it incase we need it. We don't expect to, but better safe than sorry.
Taylor is nearing the end of his second week in his bed. We are so proud of him for being so big. Ca Ca bought him Lady and the Tramp 2 and Charlotte's Web 2. He loved them both. He is all about Lady and the Tramp. He is sword fighting with the air right now. He is so silly!! There is a fly in between the window and the blinds and it is about to kill him. He is swatting and jumping. He hates bugs well all of them except his little bug in a box. Well, that is all for now. It is nice to have a little less excitement in our day.
Please continue to pray for Taylor's continued success. Pray for Austin to remain pain free and for his WBC to come down. We still need a miracle for him. Pray for his Grandfather who is still in the hospital. Pray for Patrick and his family as they deal with the latest news. Pray for Gracie and Carter as they both just entered stem cell and are undergoing chemo for transplant. Remember Morgan, Sarah, Sophia, Jay, and Chris our other NB friends. Remember all our friends from 4 tower fighting cancer.
June 4, 2003 Day +63 Radiation #6
Another one down!! Today was cordial, but all we spoke to one another was hello. It took a while again today, but I was told that from here on out will be short. I do not know why, but anyway. We arrived right on time, but 2 people went ahead of us. I said nothing, but was miffed. I took a sneak peak at their schedule to see that we were scheduled for 7:20. I guess they changed it again without notice and took people ahead of us since we were 10 minutes late. Go figure. Today Miss Nena and her friend Stacey were there with Sadie, an Australian Shepard. Taylor really liked her. He fed her cheeses nips and she did tricks for him. Taylor even got to walk her out. Maybe now that he has the hang of it he will walk Ellie out next time.
We emailed the neuroblastoma team in NYC and informed them of our radiation predicament. Dr. Modak wants it finished here, so we had to cancel all our tests and reschedule everything. We will now leave on Wednesday June 18th. I have mixed emotions on it all. I am upset that we are again pushed back for treatment that should have started long ago. I am upset that we will endure another 4 days of that awful radiation place. However, I am glad he will finish the treatment. There is a reason he was scheduled for 12 and I would feel better if he got all 12. We speak through email, so it is hard to tell if NY is mad or what, but as long as they hold that spot open for Taylor, I don't care. It also leaves us another week to deal with the broviac we were so ready to have pulled.
Taylor did fine, as usual with radiation today. He was weighed and he was 1 pound heavier today than yesterday. He was 25.1 today. Hopefully that Tp tube will be gone very soon. Please continue to pray for this situation to dissolve itself into the right decision for Taylor. Continue to pray for Austin as his wbc is very high. Pray for Tina, Austin's mom, her dad was in a boating accident and is in the hospital.
June 3, 2003 Day +62 Radiation #5
I am so glad to say I am finally home from a very yucky day. We were a few minutes late this morning because we needed gas. I would suggest you all watch the 10 o'clock news tomorrow because today was the last straw, tomorrow I will really fly off the handle if they even say good morning! They finally started on his head, but what was said would take one minute took over an hour. I guess they simulated more and just didn't tell me. I don't know that, but I don't doubt it. Dr. Spencer came and asked me if I could postpone my trip to NYC. There are some deep claw marks in my chair because I was struggling not to just slap her. If we do not go to NYC next Friday we are no longer eligible for this treatment. I will not lose that spot. Her nurse that told us that we would just double up on the dosage obviously paid less attention in medical school than she did. She told me today that that was not possible and that he would just have to get 8 treatments rather than 12. I do not know what that means to him long term, but at the moment we don't have much choice. We have emailed NYC to see if maybe they want to do 4 treatments while we are up there. To add to the day we had clinic as well. We sat there forever and ever. I had our social worker paged, but she never called back. That is just frustrating when she is your link to travel and such for your upcoming trip. I had the nutritionist paged to talk about removing his TP tube, but she is off today. So, we still have it. Hopefully it will be gone next week. We do not use it and it doesn't bother him, it was just very frustrating that nothing went as planned today and we needed something good out of it. We finally saw Dr. Berkow and got our good news. Once his Diflucan and Folic acid Prescriptions are out he can quit taking those two meds. That will only leave him on 3 meds and a vitamin. Dr. Berkow gave me the big hug I needed and wished us luck. If you had asked me in October if I would ever be sad to leave clinic 5, I would have thought you were crazy, but I must say it was sad to leave there and to say goodbye to Dr. Berkow. It all comes down to that fear of the unknown again. We are basically starting over. A new hospital, new doctors, new living arrangements and all in a new state. We will get through it though, we always do.
Please keep us and all our issues in your prayers. Pray that I am able to finish up the next 7 days of radiation without anymore issues from them. Pray that we make the right decision over his radiation. Please remember to pray for all our friends battling this disease. Remember Gracie as she visits one of Children's many clinics today.
Tentative New York Schedule:
Friday June 13th: Patient Financial Services 9:30AM; Dr. Modak Patient Assessment 10:00; Bonescan 11:00AM & 2PM (Sedated)
Tuesday June 17th: MIGB Injection 2:30PM
Wednesday June 18th: CT Scan (head, pelvis, abdomen: Sedated); Bone Marrows (Sedated); MIGB Scan 2:30PM
June 2, 2003 Day +61 Radiation #4
Hold your applause please, we made it to UAB on time this morning!! Yes, Taylor and I got there at 7:30. Just for the record, traffic was really no different. Be sure to always watch the 10:00 news. I will be on there very soon for causing a BIG scene at the UAB radiation center. I am so close to really losing my cool with those folks. I got there at 7:30 with Taylor in pajamas and me in shorts, t-shirt, and flip flops. We are both still half asleep, but we bee bop in with smiles on our faces. We find out we were right all along and our appointment was always at 8:00. The nurse asked us to come early because anesthesia came at 7:15 and Taylor is there only patient to be put asleep. I do not mind coming early, but ask me rather than accusing me of being late everyday when I was on time. Well, he never told anesthesia that he asked me to come in early and they thought our appointment was at 8:00, so today they showed up at 8:00. We sat for 30 minutes extra for no reason. I was furious!! Then as they were getting him sedated and ready for treatment I overheard them say that he would not get a skull treatment today. I about jumped the stretcher on that note. He swears it is still not an issue that he will get the same dose just over 9 days. Well, there is the issue. We will only be here 8 more working days. We fly out immediately following next Thursdays treatment. Even with all the delay we were home by 9:00. Taylor has eaten oatmeal and had all his meds, by mouth!! We are just playing and maybe I will find some energy to finish cleaning my house.
Please continue to pray for his success and for the radiologist to live through the next 8 days with me:) Pray for al lour dear friends fighting this battle and remember all the families that will be diagnosed today. 45 children are diagnosed with cancer everyday! That 3 million dollars that you all helped raise for Children's Hospital can really help out in treatment and research and lower that number. Please keep Gracie Coffey and her mommy and daddy in your prayers. She is not feeling very well right now.
June 1, 2003 Day +60
Taylor went fishing with Ca-Ca, Pippy, and Pop yesterday. If you ask him where he went he will tell you he got in the boot and went pishing, rather than in the boat to go fishing. He caught a big pish or so he says. He was none to happy about his life jacket, but otherwise had a good time. Today has been slow. HE played outside in the driveway and stayed with Jeanna and G-mom while mommy and daddy snuck out for a bit. We did nothing tonight and we are ready to head to the 4th radiation treatment at 7:30 :( in the morning. Neither of us are morning people, so they better be on the ball in the morning or we will really snap. Lets just look on the bright side, there will be a lot less traffic on I-59 that early in the morning. Tuesday is clinic day on top of radiation. We will meet with the nutritionist again. Taylor has been off his feeds for about a week and has eaten very well. Once Deborah turned off his feeds we started making him take his meds by mouth. He has not used the tube in a week. Of course every time I try to give meds he turns around and says "back" trying to talk me into putting in through the tube. So, hopefully we will pull that tube Tuesday and that will be one less thing to worry with. Hopefully on about 3 more weeks with the broviac line.
Please continue to pray all works out in the end for his radiation and the NYC is friendlier than expected. Pray this travel with all be worth it and Taylor is cancer free forever. Please remember Austin as he continues to battle very high counts and fevers. He is in the hospital closer to his hometown. Also, remember all our other friends fighting cancer.
Thanks to everyone who took time to donate to the Children's Miracle Network. They raised almost 3 million dollars. That money will be helpful to Taylor and all his friends as well as others in the hospital for illness or injury. Please remember to sign Taylor's guest book. We all look at it every night and it is comforting to read all the supportive notes we get.
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May 31, 2003 Day +59
Taylor has been a very good boy today. He slept all night long in his fire truck bed, and when he woke up this morning, he did not cry or scream, simply got out of his bed like a big boy. This marks 5 nights in a row that he has slept in his own room. After he woke up, mommy fixed french toast, then we all got dressed and went to Wal-Mart to buy Taylor some more noodles and pizza, so he will keep eating and gaining weight. He also got a little fishing rod, and daddy and pippy might take him fishing for a few hours late this afternoon or tomorrow.
May 30, 2003 Day +58 Radiation #3
***New York update***
I have just spoken with both the social worker and the housing people from MSKCC. I found out a lot of things. One is that Angel Flight is often hard to use because you need to leave in time to give yourself time for over night stays in between flights and pilots. They use small planes that fly only 4 hours at a time and volunteer pilots. We have spoken with Delta who will give you 2 flights per year for one parent and the child. If anyone has frequent flyer miles they would like to donate to us to use on our many trips to New York, they would be greatly appreciated. We also learned that the Ronald MacDonald House is $20 per night. We will be spending $420 a trip just on lodging not to mention food and other expenses, so if anyone has any fundraising ideas they too would be greatly appreciated.
We are home after a SHORT visit!!! We arrived at 7:55 for an 8am appointment only to be informed we were late. Our appointments are at 7:30, but no one bothered to tell us they were changed. Did we really expect them to tell us something like that? Taylor still has not had a treatment to the skull. He will start Monday and receive 9 treatments. The doctor thinks he will get 10, but we will only be here 9 more days, so I am not sure how she figures. Anyway, his dose will be recalculated so that he gets all his dose just in a shorter time. We were in and out in about 30 minutes. He was awake before he even came out of the radiation room. He only gets a tiny bit of medicine on our short visits. We left the Tumor Institute and headed to Children's for a prescription and to visit our 4 tower nurses. Taylor had a blast, he remembered every nook and cranny he ever played in up there.
Magic 96 and 102.5 the Bull are having a radiothon to raise money for Children's hospital. If you have time and money we encourage you to call and donate money to help with research and equipment. You can all see what good work they do just by looking at Taylor and all our friends. Taylor's story was told to Magic 96. We have heard it once, I do not know if it will be repeated or not. There are many heart warming and chilling stories being told. There number is 212-7121.
Please continue to pray for Taylor and his treatments as well as all our friends fighting cancer. (Here is a picture of Taylor's Radiation Markings)
May 29, 2003 Day +57 Radiation #2
We are finally home after yet another long day. They swore that radiation was quick, but they lied. Let me explain this one to you. He still has not had a treatment to his skull. The had to simulate for the 3rd time today. Want to know why. When he is being radiated he lays in a cradle that is a perfect mold of his body. His head is in a head cradle. His skull needs to be radiated where he lays on the back of his head. The first two times they simulated they did it with him laying flat, but today the genius with all that medical training figured out it is not optimal radiation if he is flat because the beam must first travel through the table, the cradle then his head. So, today they had the bright idea to turn him on his side so the beam went directly to his skull. Smart, huh!! So, now we are 2 days behind and possibly 3 because they might not can start tomorrow. We have to leave for New York on the 13th. That is 13 days after our start date and that doesn't leave any time to come back 3 extra days. I have no idea what will become of this situation!!
I had my prenatal visit. I had an ultra sound to hear the heart and it was fine. I had forgotten how fast they grow. It was so much bigger than the sonar 4 weeks ago. I have to go back in 2 weeks rather than the usual 4 due to us going to New York, my visit fell during that time frame and he said he would rather see me back in 2 than 6 weeks. I can only travel up to week 32, so I hope we are done by then. He said I could carry medical documents with me and deliver there, but I don't think so!! I had lost 1 pound. I was excited, but sad to. I know now is not the time to lose, but hey.
Well. Neither of us has had lunch and Taylor can hardly hold his head up, so I better feed him so he can get a nap. Be sure to continue praying for all of the cancer kids and adults. Please remember Claire as she fights ALL. Her web site is below, stop by and share your comforting words.
May 28, 2003 Day +56 Radiation #1
Taylor and I were up bright and early this morning as we headed back to UAB for some adjustments and his first of twelve radiation treatments. We arrived at 7:40 and it was about 8:40 when we went back. He was brought downstairs around 10:00 and started the actual treatment. Some calculations need to be made on his face mask, so he did not receive a treatment to the skull today. We were able to watch him on a screen as he was treated. The treatment didn't take but about 10 minutes, so we should be in and out now that he is properly marked. However, we all know how doctors offices work, you are never in and out. He took a while to wake up, but he is in rare form now, but so drunk. He can't even sit by himself very well. He looks like some weeble people. He sits up and just rolls from side to side. We got to meet Nena, Stacey, and Ellie from Hand in Paw. Ellie is a pet therapy dog that helps alert the kids and keep their spirits high. Taylor got to pet her, but he was not awake enough to walk her out. All our other treatments he should not receive as much sedation and wake up easier, so maybe next time he can take Ellie for a stroll.
We are set now for an 8:00 appointment for 11 more sessions on weekdays only. We will finish up on June 12 and head to New York on June 13. Taylor will have all his tests done up there and then evaluated. If all is well, meaning all is clear or just the bone marrow is abnormal, he will proceed with his first round of 3F8 antibodies starting on June 23 and lasting 2 weeks.
Tomorrow Taylor and I will head to St. Vincent's after his radiation and see Dr. Damrich for my second prenatal visit. Tomorrow is the big one where I get to give blood and all. I am interested to see how Taylor deals with all the needles and blood pressures and such when it is happening to mommy and not him. It should be fun and interesting.
Continue to pray for Taylor. We still believe he can be 100% cured of this nasty cancer. Pray for all our dear friends battling this and the families who have lost their battles. Please visit http://www.caringbridge.org/al/claire for a moment. Please send your thoughts and prayers to this family, a mother is fighting for her life.
May 27, 2003 Day +55
Taylor and I had a long day at Clinic. We were there over an hour before even having labs done. We finally got those and waited some more. We finally got called back at about 10:30 and saw doctor Berkow. Our counts are good and 169,000 platelets. His red blood is low but it is due to all the blood needed for bone marrows last week, so we are not getting transfused just yet. We did not get the news we had hoped for on our marrow. 3 out of 4 samples were clean and the 4th showed small abnormalities. We do not know if it is residual or new. Dr. Berkow did not feel it was new, but all marrows pre-transplant were clean, so we really do not know. We are now waiting for Dr. Modak from New York to call and tell us if we need to go ahead with radiation as planned or go to New York for an antibody treatment first. We are shaken right now. That was not the news we wanted or expected, but our strength or faith has not wavered and we will keep fighting until we win. Most of you probably remember that our friend Morgan also had a spot show up after transplant and the antibody treatment cleared it up. We pray it does the same for us.
Today didn't get much better after we got home. We got home to find a message from the radiology department and it was the old schedule I fought so hard to change. I got to call and fight that fight again and got it straight. If we even start radiation, now that is all up in the air. The SSI guy called at the last minute and wanted to do a phone interview rather than have Jim come in. I didn't know the info since Jim was the one prepared to go, so it didn't work out to well. Then we find out the documents they were supposed to fax a week ago never got faxed and we do not have anything to give to him at the interview he cancelled anyway. It is all little, trivial things, but on days like these they add up to be a huge problem.
Now for better news. Taylor was so hyper at 10 last night that we finally gave him benadryl to knock him out. He slept in HIS bed until 5am. He wanted to go in there and never once got up. Even when he woke up this morning he stayed in the bed. He wanted me to lay with him, but me, him, tea cup. night night, and frog were not fitting in the fire truck bed. I just put him back in my bed. Probably not the best idea, but you do what you gotta do at 5am. He also took ALL of his medicine by mouth last night. He didn't mind any of it, but the zantac. We didn't try this morning since we were in such a hurry to leave. I am not sure how that will work since he gets two crushed pills in the am, I can imagine that those don't taste to good.
We ask for your prayers for his marrows to clean up and never again be cancerous. We ask you to pray that our schedule straightens out very soon and we can move on with treatment. Pray for all our friends battling this disease and other diseases.
May 26, 2003 Day +54
Taylor and I stayed home and did absolutely nothing all day and daddy went fishing with Pippy and Pop. When daddy got home we all got dressed and went over to Pippy's house and Taylor played in the boat with a fishing pole. He was having a blast and did not want to leave. We finally talked him into it and we went to Applebee's to eat. He has eaten like a PIG today!!!! He had toast for breakfast, 2 cups of chocolate pudding, 10 sugar wafers, 1 cup cocoa crispies, and 1 cup of alfredo. When we got to Applebee's he ate all the cheese from his grilled cheese and a few fries. I am so glad he is picking up. I knew he would since we just got 45 cans of the peptamin Jr. that goes through his feeding tube delivered:) That is okay!! Hopefully we will be through with those feeds soon. It took a lot of trying to get that one teaspoon of bactrim down him, so I am not ready to get rid of the tube all together just yet. It will be nice just not to hook him up anymore. We have to really watch him in his sleep because he gets the tube rapped around his neck.
We are still awaiting our email from New York. We also e-mailed and asked about getting the hickman taken out. We are so ready for that too. Taylor on the other hand wants to keep it. He was s o little when he got it in, he doesn't really know life without it. I do remember and I want those days back. Now that he has hair and we will soon be washing hair again, we really need that hickman gone or we will play heck getting hair washed. I don't know if I remember how to wash little people hair, it has been 7 months since I had a little one with hair:)
He has been very wild today and has a temper that wont quit. I don't know where he got that, I never loose my cool or show my butt!! :) He has been watching The Price is Right and yelling "win a car, win a car". He has really been enjoying playing in the box that our new chairs came in. He got mad because it wasn't doing what he wanted it to do. He got out of it and with all his might just threw it across the room. I was trying not to laugh, but it was so funny to see that little boy try to throw that big box.
Well, I better go. He is pitching a fit because he want me to come to the bedroom. Please continue to pray for his complete healing as well as for a healthy baby number 2. Pray for all our friends that are battling cancer and other diseases.
May 25, 2003 Day +53
Taylor had a great day shopping. We went to Bed, Bath and Beyond, Organized Living, World Market and Linen and Things. We were looking for some sort of shelving unit for the cabinet of the island and for bar chairs. We found both, finally. It was so nice to take Taylor out and about again. He actually walked and somewhat followed directions. He had the hardest time in Organized Living. There was just to much to climb on and get in. After all that we ended up at the very first store we went to and got our chairs. We got home and put them together and they were to tall. No, we didn't measure the height of the island before we left, but we really weren't looking for chairs, they just happened to have some and we really liked them. They were much nicer than the wicker ones that we were looking at and cheaper too. Off we went again to exchange them for the shorter version. They are perfect and Taylor thought he was cool stuff eating his cocoa crispies up high.
G-Mom, Papa, and Peg came over and grilled steaks. Taylor had eaten some Arby's french fries, so he didn't eat much with us. He drove Papa's truck around the block and honked the horn all the way. Sorry neighbors!! We finally got him to take a nap at 5 and he slept until 7:30. We will be up all night but he was so grumpy. He is being very silly now. He ate 1 and a half peanut butter cookies and some mozzarella cheese. He is slowly picking back up. He had fun this morning with a bug, such a boy!! We had a wasp in here and Jim thought he had killed it, but he didn't. I was to chicken to mess with it, so I sucked it up in the vacuum cleaner. We have a bag less and Taylor had a blast watching the angry wasp fly in the chamber. Thank goodness he finally died.
Hope you all have a happy off day tomorrow. Jim is going fishing and Taylor and I are hanging out here. Please continue to pray for his 100% cure of this disease. Pray for all our friends both new and old who are fighting cancer. Pray for the families who have lost a loved one and for the ones who will soon be diagnosed.
May 24, 2003 Day +52
Another nice day, but we are all so tired. We cleaned house today and did some laundry. When I say some I mean like 2 weeks worth. Jim and I went to Watermark and got Taylor some clothes. He is at an awkward point. His 18 month pants are to big for his skinny butt, but 18 month shirts are to short cause he is so tall. So, we bought him some new shirts to go with all the many shorts that he can still wear even a 3-6 month pair:) When we got home Taylor had red toe nails again, go figure. We got Taylor dressed in his new clothes and loaded him to go back to Watermark to look for a shelf to slide in the new island. He fell asleep on the way and missed it. Oh well!! He is very wild and has been so funny today. He was "helping" me clean the bathroom. I was refilling the cotton balls and he grabbed one for his diaper. When he was inpatient we often had to put cotton in his diaper to catch urine to check levels for chemo. He automatically thought I wanted to put them in his diaper. I guess he just doesn't realize there are millions of reasons for cotton balls. We cooked hot dogs for dinner. When he saw them he ran to the play room and got his hot dog from his play grill and cooked his own.
We have started our bactrim and I remember now why I was glad to be done with it last month. Bactrim is to thick to go through the TP tube, so he has to take it by mouth. Thank goodness the bottle that Kelly gave us was so big. It took about 3 doses to actually get it in him. We begged, pleaded, bribed, threatened and so on. Finally he just gave in. This evening he never spit any out, but it took several band aids to convince him to swallow it. Band aids are his new toy of choice. Poor frog is covered.
His hair is coming in. You can actually see a little peach fuzz up there. His eye lashes are pretty long and his eye brows are coming back as well. Speaking of medical things. I am probably the least favorite parent of the B'ham medical teams. I had to be ugly once again Friday with the radiologist. I had to call and get our schedule because Dr. Modak in New York is ready for us to come. She said we had to re-simulate (what we did last week) this Wednesday at 2pm and start radiation at 2 Thursday. Well, I was ill that it was so late in the week, we needed to start on Friday to get done by June 9th. Now we are looking at finishing June 12th, 3 days past our day to be in New York. Anyway, I was doubly mad that they made our times so late. He can not eat for 6 hours before being sedated, but that would be 8am and he gets up then. He will not be eating while he is asleep so he will be without food for a very long time. She couldn't grasp why I was so upset. She kept telling me it is just 6 hours. I couldn't get her to take into account the night. Besides he is not old enough to understand why one day I beg him to eat and the next I starve him. She changed it to 8 am for us and he will start on Wednesday rather than Thursday. So, I got one day out of her anyway. We have emailed New York with the schedule. If need be we will go ahead and head north and start radiation after we return. We will find out Monday or Tuesday when Dr. Modak returns to his office.
Please pray for this entire New York situation. As much as we do not want to travel it is very important to us to get this treatment. Pray radiation goes smoothly and on time. Pray for Austin, Heather, Morgan, Sarah and all our other friends dealing with this monster.
We went to see Bruce Almighty last night. A very good movie. It also got me to thinking. Wow, what a wonderful life we live here on earth, and each second we breathe, is a second granted by God. Whatever God's plan for Taylor, I know it will be great. It is truly amazing to know that Taylor has already touched so many lives, and each day we have with Taylor is a gift from God. More will be updated later today. ALSO: 16 new pictures have been added to the picture vault, and you can find them under "current pictures" on his picture page. Most of these pictures were still taken while Taylor was in the hospital during his transplant, but they are very funny! Enjoy!!!
May 23, 2003 Day +51
We have had a nice day. Taylor slept until 10:00. Wow, it was great, mommy needed it:) We got up and cooked biscuits. Taylor ate a bite or two, but that was about it. We got ready and headed out. We have been on the road all day, but Taylor was glad to get out on an adventure that didn't involve Children's Hospital. I want to send a huge thank you to the Hicks' family. If not for them so generously giving us there Bactrim. That was a huge help and saved us a trip to the hospital pharmacy. Thanks guys!!! Taylor and I went to the summit and got movie tickets to Bruce Almighty. Jim and I have attempted to go to the movies several times and it is always sold out, so this time we just went early. Taylor was so excited to see the stars on the Zaney Brainy store. We went in and he was just in shock. It has been so long since he has seen a toy store. Of course he picks this huge pedal fire truck that was $200. Of course I had to move him on to the next isle of goodies. He settled for a Woody key chain and a hot wheels thing, I have no idea really what it is. We then headed to the pharmacy for my medicine. He picked out some Blue's Clues toothpaste. He has lost a taste for toothpaste and he wont let me brush his teeth. He has to do it after a day of eating tootsie rolls. So, hopefully he will use it if he got to buy it. He was yelling eat eat, so we pulled in to Arby's, mommies latest craving. He ate a ton of fries on the way home. Once home he ate about half the fries and 3/4 of the roast beef from the sandwich. I am so glad.
I am now going to try and convince him to get a nap before G-mom and Papa get here. Happy Friday to you all and happy weekend too.
May 22, 2003 Day +50
We have reached the half way point to that oh so important day 100!!! It is not as much of a milestone for us since he got his own stem cells back, but it is still an accomplishment. To celebrate reaching the 50 mark he ate lunch. He ate 1/2 cup of pasta. Way to go Taylor!!! He is being a good boy today. He is playing nicely and loudly. He is full of energy today. He is popping wheelies on his fire truck and speeding back and forth through the kitchen. He is going to be mad when we put the island in there and take his riding space away. We did a little dance this morning as we administered the last dose of augmentin. We started him back on the zertec since his nose is running again. We forgot to pick up the bactrim, so he may not start that this weekend. We will get a call soon from the radiology department to see when we will start the 12 day process. Hopefully as soon as New York gets his information we will hear more on that part of the journey.
We will update later if anything exciting happens. All the excitement we have has so far is him falling out of a dump truck. It is not a riding toy, so no wonder he fell out. He is now pushing frog around in it. I hope frog can hang on because they are going fast.
May 21, 2003 Day +49
Today was long, but went rather smoothly. It went smooth after the morning hassle of getting there with all the traffic problems. We were only about 5 minutes late, but it didn't matter since the clinic 5 staff was late too. I had to show my back side again. No one would come start the IV and I had to go!! Finally we got it started and we left and got to UAB late. They had to go ahead and do the next in line since we still had to do so much to register him. Oh well, what can you do. I walked down the street to Jefferson Towers and registered him in one day surgery so he could use the recovery room. That took forever, but they were very nice over there. I got back and we just walked around and matched all kinds of things while we waited.
At 10:30 they took him back and put him to sleep. We set in the waiting room while they simulated him. It took right at an hour. He was still asleep when we got back in his room. He had a bee hive print on his face and head from the mold they made. He has markings of where he will get radiation. He will be getting radiation to his head, chest, abdomen, and pelvis. It shouldn't take more than about 30 minutes everyday. He will be first since he is so little and has to be NPO each night. After he woke up we went to UAB and sat in the one day surgery recovery room. Taylor was the best patient there and by far the youngest. It was a crazy place. They don't see many kids so all the nurses fell in love. He shared his crackers and was a real charmer. After that hour stay we went up to the 11th floor and got a private recovery room. We did a lot of recovering for a little sedation. We were released from there to go home. Of course we had been brought 4 buildings over from where we started and had no idea where we were. Transport took us back and Taylor got a wheelchair ride. He thought he was cool. At some point in it all he got a cracker crumb in his eye and it still giving him fits. I assume he got a scratch or something.
We will find out soon when we will start the actual radiation process. We are hoping Friday or Monday. The actual treatment will be much shorter and will not require all the recovery time. I spoke with New York again today. I didn't learn anything more. They just wanted to get all his stuff sent up there so they can begin to study all his records.
He ate almost a whole sleeve of crackers while in recovery. He had a cup of chocolate pudding, but turned down the pizza. I guess we will get there, again! He is playing fine and in a great mood. He has his mike out and is ready for American Idol. Go Reuben!!
Now for our interesting tidbit of the day. This is kind of confusing so hang on and bare with me. When we entered the last recovery room a nurse came in to see Taylor thinking she was visiting another Taylor. As the story unfolded it got very interesting. The nurses name was Joy Watts and she has a daughter named Taylor Watts. She had fallen in love with another 2 year old patient because her name was Taylor Joy Watts and her birthday was 1-19-01 and so is nurse Joy's. She thought it was interesting that they had so many similarities. Well, our nurse today didn't know it was a different Taylor and told Joy her namesake was here and to go visit. When she came in and realized it was not the same child she explained why she was there and we told her he was Taylor J. Watts and was born on 1-19-01. She was floored, we all were. It's a small world!! The other Taylor is getting treated for cancer as well. Let us pray for her recovery and no confusion in treatment. :) How strange to know that there are two Taylor J. Watts' receiving treatment for cancer, and both were born on the very same day!!!
May 20, 2003 Day +48
Today has been a very nice day. Taylor has been very pleasant. I guess he got all that out of his system yesterday. He has eaten a little better, if you consider tootsie rolls food!! He had a few bites of pudding and applesauce, but that is about it. He has been hooked up to his feeds today since he will be sedated tomorrow and has to be NPO after midnight. His weight can not afford to be off of it completely.
Taylor's liver enzymes were normal yesterday and we will start Bactrim back up this weekend. That is the medicine he use to take to keep him fro getting pneumonia. He had to quit taking it after transplant though I am not sure why. That is another med to add to the mix as we have not stopped anything else. Tomorrow is the last day for the oh so hated augmenton. His ear was clear yesterday!!! It has been since February that his right ear has been clear of any goop.
We will go to Children's tomorrow at 8:00 and get an IV started and bag him for a urine sample. We will head to UAB to start simulation and I will have to run the urine sample back to Children's. Seeing as he is NPO we may have to wait until Tuesday's clinic visit to get a sample.
May 19, 2003 Day +47
This has been the longest day in the history of days. We arrived to clinic at 8:00. We went right back and got weighed and measured. He weighed 10.9 kilos down from 12.2 on Wednesday. All that puking and not eating is catching up with him. We went back to the waiting room until 9:00 and then we went to get his echocardiogram. He is so smart. He new that That was like what mommy got to see her baby. He was telling the Dr. all about it. He printed Taylor a picture of his heart. I think he is prouder of his than me of mine:) He showed it to Dr. Watts and he immediately congratulated me on the new arrival. I said thanks, but that's a heart. He just laughed. His heart is still completely normal and doing just fine. After that we went back to the waiting room. This time Taylor realized his bag had a cup of tea in it. However, he is still NPO for the bone marrow aspirates. He turned into that kid, you know the one. The one you swear if your kid ever acts that way you will beat them. Yes, I was that annoying mom with the loud kid today. He threw his passy, he took his shoes off and threw them. He flung himself in the floor and kicked and screamed. I finally took him out in the hall and threatened him with a spanking and he calmed down. After he annoyed the nurses long enough they got us a room. He was content in a little car while I had much needed adult conversation with our good friend Leigh Anne. Dr. Watts came in to listen to him and check him over for the sedation. He was very congested and therefore we got sent for a chest x-ray. It was clear so we were given the go ahead for sedation. Our Simon sedation time was 9:30. but we didn't make it down until more like 11:00. This set of aspirates took a little longer since he got anterior and posterior. He came through just fine and really hasn't complained to much of pain. We were back in the clinic by noon and saw Dr. Berkow. All his test are NED, NO EVIDENCE OF DISEASE!!!! He called the radiologist to speed up the process a little since we have plans for New York in about 2 weeks. They are also contemplating the issue of radiation of his skull. He is showing no evidence of abnormal activity there, but since it took so long to clear up they may still do it. I really hope not. While all this was going on, Taylor was pitching another fit. Dr. Berkow and I had to just scream over him to talk. He was mad this time because his resse cup was melting. Finally done in clinic 5, we headed to clinic 2 for a hearing test. HE had a totally different one than he has normally had. This time he and Miss Jill went in the booth and I stayed outside. He played games with her and Miss Caroline to see how well he could hear her. He was having a great time, but he did lose interest towards the end. Now let us all say a huge thank you God. He had not lost any hearing. I have let that really bother me. It is strange how in the middle of all this trauma you let the possibility of hearing loss and stunted growth bug you. We are luck again and he is fine!!! We were finally done at 2:00.
We go Wednesday to Children's to do a urine test and get an IV. We will head to UAB for radiation simulation at 9:00. It will be another long day and the beginning of 12 very long radiation cycles.
Now for the funny of the day. I was looking over Dr. Watts' shoulder as he read Taylor's chest x-ray. Well, they are very ugly things since you see his broviac lines and the nose tube all running through. There was a tiny little spring off to one side and I thought he had swallowed something and was freaking out. Thank goodness it is just the springs that are on the ends of his broviac and help hold it in. I give a hands down to Dr. Barnhart, that thing must be hard to get in. It runs through the heart, chest, ribs, neck and skin. It is all wound up inside him. The nose tube is too.
Please continue to pray for Taylor's complete healing. God is answering all those prayers we are sending his way. Continue to pray for all our friends here and other hospitals that are getting treatment. Please remember our newest friend Heather. She was just diagnosed with a secondary cancer from chemo. This is a very scary possibility that all the kids face, but in her case it is the second time. This is her third type of cancer. Please pray she can battle this and finally get 100% healing.
May 18, 2003 Day +46
Today turned out better than it started. He has eaten about 15 bites of oatmeal and applesauce, so we are moving up in the eating ever so slowly. He has had several glasses of tea, but still no milk. Guh came over and stayed with him while Jim and I went to get a kitchen island. We need more storage in the worst way. Now we have it!! We have to paint it and stain it first, so it should be ready soon. Taylor played outside for the first time since being in the hospital the last time. He had a blast, but wanted to get into a lot more than he needed to.
We go bright and early tomorrow for bone marrow biopsies, echocardiogram, and a hearing test. The hearing test is scheduled after the sedation, so that might not happen!! We will update as soon as we are home.
This morning has been uneventful, but last night was fun!! It was midnight and Taylor was still awake. He had asked to go to bed at 8:45, but soon got up. We played that game until 11:00. Finally he got still and fell asleep. At 1:30 he woke up and puked everywhere. He did this the night before as well. We are chalking it up to milk. He had over 30 ounces of milk Friday after 6 months with no milk at all. He ate only a few bites both days. We will discuss it Monday with Meredith and Dr. Berkow. He is very mopey today and playing very little. He refuses to eat, but he has had some tea. No milk today. We will see how that does.
Please pray that this is just a milk intolerance and his appetite will pick back up. Pray we do not have anything serious happening. Please continue to remember all our friends on stem cell and 4 tower in your prayers. Remember Austin, Sophie, Alexis and Sarah Anne who are all at home.
I finally found the purse!!! It is about time!! God Bless you all, Happy Sunday!
May 17, 2003 Day +45
Today has been a very uneventful day. Taylor and Daddy spent most of the day together playing, while Mommy went with G-Mom to Tannehill, to of course look for a particular purse she has been trying to find for some time now. Taylor is featured on the front page of the Alabama American Red Cross website.
May 16, 2003 Day +44
We are finally home and just in time, it is getting nasty outside. That was the biggest waste of time!! I'll start at the beginning. Taylor and I left at 12 so that we would have time to go in wal-mart and get some diapers and wipes. Well, Taylor fell asleep at John Carroll High School. (We met Jim at Wildwood to ride together.) Anyway, I got some lunch and ate in the car. Taylor woke up just in time to see Jim drive up, so we still don't have diapers. We got to the doctor, eventually. The parking lot and building both were crazy! We were there 2 hours to find out nothing! We go back Wednesday for a simulation period and that takes all day. He will have a lot of tests and molds made to get him ready. It then takes at least 8 days before he can get the radiation. All we know now that we didn't know before is that he will indeed get 12 days of radiation and that there is valet parking. Twelve days is what is in his protocol. Dr. Spencer has not seen his documents so she couldn't even tell us where he would get radiated. We did find out that the protocol calls to start radiation on the 42nd day post transplant. We are day 44. I don't know whose mistake that was, but it better not mess up our plans for New York or someone is gonna get it. We will go Monday for the bone marrow tests and also a echocardiogram and a hearing test. We will have to go Wednesday to get an IV started and then to UAB for a CT scan that goes directly into there radiation computer. We will update on this situation as we learn more. Looks like we will spend this wet evening at home without Ca Ca. He has to stay late and make up those 2 hours he missed for no reason:)
We have a doctors appointment today at 2:00. This time we are meeting with Dr. Spencer at UAB. She is the radiologist that will be doing Taylor's radiation. We will find out what all will get radiated and how many days. I am hoping for tumor site only and a short amount of time. We will update when we are home.
Last night Taylor went to the grocery store. He rode in the car buggy and had a blast. He picked out 2 packs of my sticky, a pack of raisins, some lunchables, and baked beans. He wore his mask without any complaints.
Well, I have to go get ready so we can go get diapers. We have 3 left and we are still fighting the antibiotic. He has left me 3 trails o' poop this morning. I hope we make it through the store without a trail!!! HE seems to be tapering off now, so hopefully today's bought with the runs is over. We will update later with today's news.
May 15, 2003 Day +43
We have cleared yet another hurdle in this race. We are no longer patients of the Lowder Stem Cell Unit. We are officially released back to Clinic 5 and Dr. Berkow. We will have our first visit there on Monday. We will have labs drawn as well as his bone marrow aspirates and biopsies. He will have both a biopsy and aspirate on the back and an aspirate on the front. He will have a front biopsy in New York. We have an appointment with Dr. Spencer, the radiologist at UAB tomorrow at 2:00. We will learn all about when, where, and how much radiation he will receive. We should hear more from New York today as well. Dr. Modak did get in touch with Dr. Berkow and the ball has started rolling towards our departure for the Big Apple. I am excited to see New York, but I wish I could go for summer vacation rather than cancer treatment. This treatment is very promising for long term survival, so we will suck it up and do it.
Please continue to pray for his progress. We have been so blessed through this ordeal and we know it is from your support and prayers. Start those prayer requests for my patience back up. This time it is pregnant hormones vs. terrible twos vs. Augmentin, not a good combo. I have just finished cleaning up him and me. We were both covered in poop. Then as I headed to the washer with all the dirty laundry, I discovered he had left a trail of poop all the way from the playroom to the living room. One more week on that anti-biotic and I can not wait for it and the runs to be gone!!
May 14, 2003 Day +42
We had a long day in clinic, but it could have been worse. We were late again this time due to a major traffic jam. Mr. Taylor is an awful back seat driver. He yelled go and move all the way there. We still managed to be second so we got labs in fairly early. His counts are wonderful. WBC are 8,270 and 125,000 platelets. Good thing since he ran into the car door when we got home. He had seen the doctor and was ready to go by 11:00, but we had to hang around for the MIBG scan. He was a wild Indian as usual, but no one seemed to mind. He ate very little this morning, but we spoke with the nutritionist and she had gone over his calorie count and he is getting just under his normal limit, so she didn't change his feeding schedule any.
Dr. Sande was the lucky one who got to give us the results of yesterday's CT scan. It shows no evidence of disease and the residual spot on his head is gone!!!!
I am not sure of the bone scan results. I am guessing they are good as well. Dr. Sande stated that his cheeks were now clean. I didn't know that was ever a spot of concern, so I am guessing she meant his head. Dr. Berkow will call us with the final results and tell us about radiation treatments. I am hoping this means only radiation to the tumor site. The Ct scan showed some junk in his chest. It is not cancer. They think it is just all the congestion in his chest that doesn't show up on a regular x-ray. She was not concerned with that. The MIBG scan today looked no different than last time ( as far as I could tell ) and it was clean last time. Thank you all for praying for his success, it is working, please keep it up!!!!!
Now for the ball game update. He did so good. He was ready from the word go. No shyness in him!! He threw it a pretty good distance to be so little. He would have stayed out there for the game if they would have let him. He would have road there golf cart too. He had a great time the hour he was there. He ran around and climbed in seats. He matched his hat to the players hats. He went to the gifts shop and got a ball and bat. He will really enjoy it once he is well enough to go to a game and stay. We had a suite and that was great. It had catered bar BQ for dinner and lots of cake. It was great. We thank the Red Cross for that opportunity. It was a blast for all of us!!
Please continue to pray for Taylor. It is working!!!
May 13, 2003 Day +41
We finally made it home!!! It has been a long day. We arrived at clinic at 8:00, We were on time today. We then found out Taylor needed an IV. I didn't know this because he has never had an IV started for scans. He had no emla cream on, so he got that IV with no pain med. He did great and so did Miss Melissa. She got it in on the first try. He cried, but not long. Tina, you will be glad to know that the IV is because they now know you can't push contrast through a hickman:) Anyway, we went down to CT at about 9:15 and stayed until 10:30. Mary sat with him since I can no longer be in the room for those scans. He was sedated, so it was no big deal. I even changed all his tegaderms over his TP tube while he was sedated. Much easier that way. Usually Taylor is inpatient for these and sleep away the rest of the day. Not today. He wanted to play, but he was so drunk he couldn't stand up straight. Hope he gets over that or he is going to be hitting some batter if he doesn't throw in the outfield!! We sat upstairs in stem cell, where the clean air is. We met a knew friend named Bryce. He is one month older than Taylor. Taylor enjoyed playing with someone his size for a change. They were so funny. Bryce was born with skids, or no immune system. He was getting a transplant at 5 months old. He is doing great, but please add him and his family to your prayers. At 12:30 we headed down to the bone scan. Taylor hates those. HE screamed bloody murder, but otherwise did good. He would not potty so he had to be catheterized before scanning the bladder. He was really mad then. Finally he was injected for his MIBG scan and they took the IV out. He was not much happier about it coming out than going in. He was a chatter box while getting in the car, but as soon as we hit the interstate he was gone. I moved him into the house and out him to bed and he never missed a beat. I hope he sleeps until time to go to the ballpark.
I also talked with Dr. Modak from Sloan Kettering in New York. We are starting the first phase of that journey. We are looking at heading to NY for an initial visit and full work over for Taylor on or around June 9th. We will feel you all in on that later. He was very friendly and seems to think Taylor will be a good candidate for the 3F8 antibodies.
We have another clinic visit tomorrow and the MIBG scan. Another long day. We hope to see you all at the ball park!!
May 12, 2003 Day +40
***We have Barons game info***
We will be arriving early at 5:45. The game starts at 7:00. We are not sure if he will throw the pitch early since the game starts at 7:00 or if he will do it at 7:00. So, we are telling people to be there around 6:30 at least just in case he throws his pitch early. We will get to sit in a suite with the other families that are participating, Other family members will have regular seats, so look for them. We hope we see you all!! Bring plenty of quarters!!
Well, another clinic visit down and many more to go. Today's was busy. To start off the day I over slept and we left late. Traffic was awful and Jim left my car on empty. So, we got to clinic about 45 minutes late. It didn't matter to them it just meant a longer stay for us. We waited forever on counts to come back only to find out the printer was out of paper and they just didn't print out. They had been back a while. That also didn't really matter since we still had to see the doctor, but I am always anxious to get those numbers. Our life revolves around numbers. Anyway, he was his usual self running all over and being loud. I tried to keep him quite since one of our clinic friends didn't feel well. His counts are great. His wbc are 5,900 and he has 115,000 platelets. His livers tests look much better. One is back to normal and the other is down in the 4o range which is down from the 60's Friday. His counts are good enough for him to go to the Barons game tomorrow. He has to leave after he throws the ball, but he will still enjoy it. Guh is brining him home so mom and dad can have a night out at the ballpark. Hey, it is 25 cent hot dog night!!
Dr. Berkow came by to see us. Taylor remembered him and was silly for him. He is getting in touch with New York to see what we need to do after he checks to see if Taylor is indeed eligible for the treatment at Sloan-Kettering. I am not sure of the requirements, so we will update on that soon. We will get all his scans done this week. Some of it may be duplicated in New York, but he needs them now to determine where and how much radiation he will get. He will for sure get it to the tumor site (left adrenal gland) and to any spots that show up on the scans. Before the transplant he only had one spot on his skull. We really do not want him to get radiation to his head, so we are hoping that the chemo prior to the transplant got rid of that spot. We are looking at radiation as soon as next week. He will get this at UAB since Children's doesn't do radiation. He will be getting a CT, bone scan and a MIBG this week. He will be getting his bone marrow biopsies as well. They are having to find someone to do it since I have requested them on front and back. That is not normal procedure here, but that is how Morgan's residual neuroblastoma was found, so they understand why we are asking for it that way. We will spend the better part of the day at the hospital tomorrow. I will update on how it went as soon as we can. I will post later today as soon as we know about the ballgame tomorrow.
Please pray that Taylor doesn't need radiation to his head. Pray that all goes smoothly and all tests are clean!!! Pray for Austin and his family. Pray that our friend Heather is feeling better soon.
May 11, 2003 Day +39 Happy Mothers Day!
When it rains, it pours. And boy is it raining. In fact, it is raining so much, we now have two leaks in our roof. Lovely huh? I guess the silver lining in the whole situation is the fact that both leaks are directly over each tub in our house, so no sheetrock will be ruined (hopefully). Life seems to throw you many curves. As for Taylor, he is doing just fine, playing and getting all of his toys out, and I mean all of them. Pa-Pa came over to help try to slow the leaks down, and now is stuck playing in the play room. Just to show you how smart Taylor is, his little ploy to get Pa-Pa to stay and play? When Pa-Pa came in from the rain, Taylor made him take his shoes off because they are wet, and of course, Taylor knows you can't go outside without shoes on. He has now lured him into the play room. Happy Mothers Day to Kim, Janie, Pam and all of the other wonderful mothers out there.
May 10, 2003 Day +38
Taylor is doing great today. He hasn't ate much, but he is in a really good mood. Kim is having a mothers day out day, and I hope she is enjoying herself. She did just call a minute ago with some exciting news. While out, she ran into John Wimberly from the American Red Cross. He informed Kim that they want Taylor to throw out the first pitch at the Birmingham Barons Baseball Game on Tuesday, May 13. We do not have specific details yet, but will find out more on Monday. How exciting!
I had a great day out with the girls. I was so excited to run into John and some Barons players. We will update with all that info on Monday. If you are free come join us at the met!! I know Taylor (and daddy) will really enjoy that. Can you believe a whole day shopping and I only spent $3, not bad, huh. Jim, Taylor and I rode to Sears today. Taylor and I sat in the car while Jim ran in to get lawn mower blades. (Seems none of our mowers work around here:D) Taylor enjoyed the ride. I think he remembered where he was. He was excited when he got there. He had some my sticky to keep him happy while we waited, so he didn't mind staying in the car. Taylor had a little oosing from his port site tonight. It looks okay, but I will mention it to the doctor Monday. We have heard that many of our friends going to New York have had theirs removed. I would love to have it gone. He could bathe, swim and most importantly no more dressing changes. We know that the antibody can go in any IV line. I don't want him to get an IV every day for 2 weeks and I don't want him to be afraid of clinic and he will be if he has to have blood drawn from his arm every time. He could have an internal port put in. That kind is less trouble than his Hickman, but that would mean another surgery and it is not worth that. We will probably end up keeping what we have, but it is nice to think it could be gone.
Please continue to pray for Taylor and his continues success. Please send special prayers up for our friend Austin and his family, they are in great need of a miracle. Please continue to pray for Deanna's family. Please add some friends that are heading to stem cell, Tyler and Gracie as well as the other Taylor who just had his transplant. Remember our friend Alexis, she is still home and doing great. We all thank you for all your prayers. God Really listens and we feel them too. We love you all!!!!
May 9, 2003 Day +37
We are finally home at 2:45!! Our actual clinic visit was fine. All his counts are down a little, but not by much. She said it is all in the drop of blood they tested. His counts are a little of 5,000 and platelets are 82,000. His Liver enzymes flip flopped again. She still believes it is the diflucan and they are not very much over normal. Dr. Sande said with all the chemo he has had it is no wonder. The liver will heal itself in time. We called the ENT clinic and they said they would call and tell us when they were ready. We were done in clinic by 11:45, but we had to wait until 1:10 to go down to the ENT clinic. We had our nurse call and make sure he did not sit in the waiting room. After a 20 minute waiting room wait I pitched a fit. They got us seen right quick then!!! I hate that clinic we always have trouble with them. The receptionist were measuring there arm fat, real professional. Anyway, his tube is fine and he did not get a hearing test since he will get one during his next round of testing. He ate a good bit while there. It was mostly chocolate, but you can't fault him for that. We dropped his feeding time a little and Monday they will evaluate his calorie intake and we will drop it, raise it, or stop it based on that. I really want the TP tube to stay for medicine.
As usual he was a big ball of energy during clinic. He had Papa and G-mom today to run around with. He and G-mom drove their cars (chairs) to work and parked them against the wall. Taylor also checked out Dr. Sande with the stethoscope. She was okay, we didn't have to admit her. The nurse practitioner that looked at his ear was Dr. Berkow's wife. Dr. Berkow is Taylor's primary hematologist. Dr. Sande and Dr. Berkow are going to get together and get everything ready for us to head to New York. I better go and see if I can help G-mom and Papa escape and get Taylor to bed.
Please continue to pray for Taylor. Pray for Deanna's family as they start their lives with out cancer and without their angel. Pray for Austin and his family. Pray for Brianna, she has had 5 days without her heart rate dropping. If she reaches 7 she can go home.
May 8, 2003 Day +36
*** Late update***
We went to Deanna's visitation tonight. That was the first one we have attended for someone we have gotten to know throughout this ordeal. It was the hardest thing I have ever done. It is very hard at any one you attend, but for a 16 year old, why?? There were so many teenagers there. It made me think back to when Robert and Carol died my senior year in high school. It was very different though. This time it was a very vivid reminder that it could be us. Taylor is doing remarkably, but in those situations you let your imagination wander to far away places that it shouldn't. Please continue to pray for Taylor. I do not ever want to be in that position. Pray for Deanna's family as they try to move on with their lives without her beautiful smile. Please pray for Austin. He and his family really need your prayers right now. Visit them and leave them some kind words. www.caringbridge.com/al/deannagarner www.caringbridge.com/al/austin
Today is a stay at home day. We cleaned up a little just to pull it all out again. He is so full of energy. He is watching the Wiggles right now and being the stillest he has been all day. He did get up around 7:30, so he is probably getting tired. He has eaten about 3/4 a pack of oatmeal and 1/4 cup of baked beans. Not drinking much. He is really doing this eating very sporadically. He has changed clothes at least 3 times today. First he pooped all over himself. Then he wanted all Auburn clothes, then he needed to wear a belt so he had to get shorts with belt loops. No wonder I always have so much laundry. Not much going on today. We are going to Deanna's visitation tonight. Please remember her family. Please continue to remember Tina and Austin as they deal with his relapse. Continue to pray that Taylor receives his anti-body treatment here, but if not pray we have the strength to deal with all the stress of going to New York for 2 weeks at a time every 3 weeks. Pray that our next round of tests are all clear and he doesn't need radiation or any more chemo, ever!!!
We go to clinic Friday at 11:00. We will update when we get home.
May 7, 2003 Day +35
Taylor woke up with a boat load of energy today!! We had an early start as we headed out to clinic. We actually got there early!! Of course our labs were last to come back even though we were drawn a good 30 minutes before anyone else. I think it is a conspiracy in the lab to keep us there as long as possible. He was a ball of fun while we waited. He had everyone pulling him around in a Harley wagon. He posed for quite a few pictures. He really does pay attention to his Elmo fire video. He started yelling woo woo and pointing to a fire alarm in the hall of the hospital. He is still concerned with his mower not working. Guh brought the chargers from her house and it wasn't a fit. It goes to his power wheels jeep. When we tried to explain that to him he brought us a handful of hot wheel jeeps and tried to get it all hooked up. He is to smart. He can always one up you.
Now for the clinic visit update. Counts are looking great. He has 5,860 white blood cells and 90,000 platelets. Dr. Sande was very pleased with his eating progress and we will meat with the nutritionist Friday to see about dropping him off his feeds. He weighed in at 12.2 kilos up from 11.7 on Monday. His liver enzymes are still high. There are 2 different levels they look at and one went up about 10 points and the other dropped about that much. She said that didn't really make since and it must be the diflucan. He has to stay on that medicine, so we will have to watch it. We go back on Friday, but we are going at 11:00 because we are also going to the ENT clinic to have his 6 week check up for that new tube.
Please continue to pray for his success as well as for us to be allowed to stay in sweet home Alabama for anti-bodies. Pray for Deanna's family as they deal with her loss. Pray for Austin as he heads back to the hospital today. Taylor was so sad he didn't get to play buzz laser guns with Austin in clinic today. We just missed them. Continue to pray for Brianna and all our other friends fighting some illness.
May 6, 2003 Day +34
Taylor slept until 9:30, but didn't sleep well last night. His passy had a hole in it and it upset him. He ate about 1/4 of a bagel this morning. He is drinking much better. We will update more tonight. I really want to post now to tell you all that our friend Deanna became an angel at 9:10 this morning. Please stop by her site and leave some kind words for her family. www.caringbridge.com/al/deannagarner
We have had a very playful day. He is so full of energy, but mine is running out. He was actually running, yes running through the house. He had several visitors today and had plenty of energy for them all. He has eaten fairly well at least I can tell the doctor he had more than tootsie rolls. He has had about 20 ounces to drink. Finally, we are making progress. Taylor had a blast with American Idol. He has boogied, shook his boodie, and sang his heart out. He is still jammin' to the radio. He was yelling my name today at about 2:30 telling me to come take a nap. I found him laying on my bed. I quickly followed directions and took my nap:) He has filled his microphone with tootsie rolls. He is so silly!!!! He is beginning to get on our nerves. He says "huh" to everything, He looks so silly tonight, it has been a long time since his pj's were to little. His fat gut is hanging out. Not much to report, but no news is good news!! We go to clinic tomorrow at 8:00. We will update when we get home.
Please pray that we get Taylor's anti-body treatments settled. We really want to get it here, but it isn't looking like it is going to happen. Pray for his continued to success. Pray for Austin and his family as they finish up there Disney trip and start the next leg of this journey. Pray for Deanna's family as they deal with the loss of Deanna. Remember all our friends here in Birmingham and all over the world that are fighting this and other diseases.
May 5, 2003 Day +33
Today was clinic day. It wasn't to terribly bad. We were there until about 11:00, but there were lots of kids there and we had plenty of people to talk to and weather to watch. His liver test came back a little high. Dr. Sande dropped his dose of Diflucan because that is what she thinks is causing it. We will check those numbers again on Wednesday. His white blood cells are at 4,000 and platelets are 77,000. He has an ANC of 2,000. We had to start his ear drops again because he has yeast growing in there again. I swear I think he is going to get married with that ear infection.
It has been a long time since I have seen him as wild as he was today. He played with everyone and got himself tangled in the divider curtains. He was being so silly. It was great to see. We are really beginning to see the old Taylor peak out. His hair is growing back, but not like we thought. Most kids look like they have a buzz cut. I think Taylor holds them in his head until they are 2 inches long then lets them come out. He has a fuzzy head that sticks up every where. I think we finally found the "it" food for him. He had 2 servings of baked beans tonight for dinner. He tried a fish stick, but spit it out. He has already had his bath since there is nothing but weather on TV. He is playing with everything and the house is a mess. As much as it bugs me it is great to see him so active.
We also found out today that the anti body portion of his protocol was closed, so our only option is to go to New York to get it. I am glad in ways and disappointed too. Sloan Kettering deals with so many neuroblastoma cases that they have a neuroblastoma team of doctors. I think he will get wonderful treatment up there with some experts on his type of cancer. I am happy with the care he has received here and would so much rather stay here. It is not a mandatory part of the treatment, but we really want him to get this. It shows great promise in long term survival.
Pray that Taylor continues to do well and that his study reopens in time for him to get the antibodies here. Continue to pray for Austin as he begins the next part of his journey. Pray for Deanna as she is still in PICU and Brianna who is also still in NICU.
May 4, 2003 Day +32
Today was another long day. From the sounds of the weather reports tomorrow is going to be busy too. We all got up around 8:30. I cooked breakfast. Yes, you read that correctly. We did some long overdue laundry and cleaning. Mommy went to Brandy's baby shower. She got a lot of pretty things. Please continue to pray for the both of them. Brianna's heart rate drops very low. She needs to go 7 days without it dropping to be able to come home. Every time her rate drops she has to start the 7 day countdown over. Her rate dropped last night, so she will be in the hospital at least another week. They had hoped for her to come home Wednesday. She is up to a little over 5 pounds, so she is doing better. Pray that her heart rate stays put from here on out.
Taylor ate a few noodles today and that is about it. He did have about 3 ounces of tea. We went to get a pizza tonight. We thought he would eat it, but he didn't. He has just played today. He was a little upset when daddy left to go to the driving range. Mommy found the hats aka tops to the toy jeeps. so all was okay in the world. He is still upset that his lawn mower is dead. He is still trying to fix it. Today he was off playing by himself. He came running into the living room all excited. This time he had found a double A battery in my hospital bag. He just new that was the battery to the lawn mower. We laughed so hard. He is really trying hard to fix it. Guh, has a charger to something at her house. We hope it is to that.
We go to clinic tomorrow at 8:00AM. He will be glad to get back out on the road and hunting Bob's or construction sites and bull dozers and such to the rest of us. Please pray that Taylor's medicine load is dropped a little. Pray that he doesn't need a new TP tube. He pulled his way out today and then sucked it back in. We are hoping it is in the right spot. Pray that he is able to get the antibodies here and we do not have to travel to New York for them. Pray for Brandy and Brianna. Pray for Austin and his family. Pray for all our other sick friends.
May 3, 2003 Day +31
Sorry for another late update, but it again has been a busy day. Mommy headed out at 7Am for the very wet yard sale. She racked up a whopping $63.50. Then Guh came over while mommy and daddy went to spend the earnings. When we got back we had several surprises. Taylor had red toenails. Guh had put it off for as long as she could and she finally had to give in. Taylor really wanted daddies toenails red too, but that is where we had to draw the line. Taylor never took a nap today so we were getting him ready for bed around 8:00. He took his diaper off and was waiting on the tub to fill up. Jim told him to sit on the potty while he waited. He sat down and used the potty!!!! We hooted and hollered enough that hopefully he realized what he was supposed to do now. He was excited. He is now watching The Wiggles and trying to fall asleep. It took daddy a while to figure out that wiggling the fingers means The Wiggles.
I have to share with you all the funny thing Taylor did yesterday. He has a little riding lawn mower that he rides in the house. It has only been charged once a year ago when we first got it. He has been afraid to ride it until recently. The battery has finally run down and we have no idea where the charger is. WE told him the other day that we will have to plug it up like we plug up his pole when it beeps. He took off down the hall and came back with the power strip we bring to the hospital to hook up his DVD player. He is to smart!! He was very proud that he had fixed the problem, but confused as to why we were not doing anything. We finally convinced him that that wouldn't work on the vroom vroom.
May 2, 2003 Day +30
Sorry this update is so late, but it has been a busy day. Dr. Sande came in at about 8:00 and checked him out and all looked good. His hemoglobin was low at 8.3, so they did another blood test to see how fast he was making red blood cells. If he was not making any he would get a transfusion if he was making them on his on we will wait until Monday and see how it looks. Thank goodness he was making them fast enough not to need a transfusion. His whites have dropped to 3,000 from 12,000, but she said that was normal with a viral infection and they will build back up. So, by 9:30 we were discharged, but we had to wait and talk to pharmacy and she was swamped. It was about 11:30 when we finally left. Taylor was ready to look for "Bob's" on the road. He found quit a few. He didn't eat very much at home, a few pieces of cheese off of pizza and a few sips of tea. I guess he will pick back up after a few days home. Taylor and mommy took a long nap this afternoon and when daddy got home mommy snuck out. She had to go price all her yard sale stuff. Taylor was just fine with staying here and playing with daddy and uncle Dugan. He is still going strong at 10pm. Hopefully he is winding down. We will update tomorrow. Happy Saturday to all.
It is really still Thursday night, but I wanted to be sure you all knew the our latest news. I am pregnant. I have the lovely due date of December 24th. Since we know I am having a c-section the doctor said he would take it as early as the 14th. So, this Christmas we will have a new addition. I had my first ultra sound today and all was fine and I am about 6 weeks and 1 day.
As for Taylor, he is still fever free and we are still on for home by noon tomorrow. We asked him if he wanted a baby like Chris and Temperance's and he told us No. I guess he was happy with looking at theirs and watching it go home. Hopefully, he will do okay. I will update later tomorrow once we have definite plans as to what we will be doing. Pray we are home!!
May 1, 2003 Day +29
Another month has come and gone. Wow! I can hardly believe we are almost to half way point of this year. Time flies when your having fun:) We had great rounds this morning. Dr. Sande is back on and she said as long as he stays fever free he will be discharged by noonish tomorrow. He has done well with his nebs and he is no longer wheezing. He has been fever free since we were admitted, par for the course. He is not eating, but we knew he wouldn't eat here. They are not concerned since he was eating at home. He is still eating his "tootsies". He is off his feeds for the day and is a free man. He loves it that way. He will be free until 6pm. Yahoo!! He is not getting the next dose of fortaz due to some level issues, but it is all okay. We do not have today's counts, but I will post yesterdays. WBC: 12. 46 and Plt: 59,000. He should be able to fight off what ever this viral thing is with those kind of counts. He is doctoring frog right now. Frog is very sick. Taylor has admitted frog to the hospital because he has no heart beat or blood pressure. He did wonderful with his shot though!
Continue to pray for Taylor as he finishes up his treatments here and begins the next phase. Remember Austin and Deanna as they fight their battle with cancer. Pray that Sherrie gets rid of strep throat so that she can go see little Gracie. Pray for Dylan Lee as he has a yucky sinus infection and isn't feeling well. Please stop by Morgan's page and offer her some kind words of celebration, her scans were clear of neuroblastoma cells. www.caringbridge.com/nc/morganbarnes
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April 30, 2003 Day +28
What a day!! We had to take daddy to clinic to keep Taylor from pitching a fit. He is getting more and more attached to Ca Ca everyday. He had a 100.5 temp when we left home and only 97 when we got to clinic, but it hit 100.4 before we were done, so he was admitted to room 658. This is a small room and that means a short stay, we hope. He had a chest x-ray, sinus x-ray, and nose swab. His lungs are hyper-inflated meaning he is retaining air in there hence the wheezing. He will get nebulizer treatments starting today. Some of you may not know he has been getting those since before he was even a year old for asthma. He HATES them. He has a sinus infection and the tube in his nose blocks things and all that leads to wheezing as well. Dr. Lucas said he really thinks it is just a cold causing the fever and the sinuses causing him to be so blah. He does not think it is a line infection, but he did do cultures. He will be getting IVIG and IV meds to combat all of that plus anything that could be trying to grow. He will get sent home on an antibiotic as well. What's one more thing to shoot down that tube. The tube is slowly slipping out and he is picking up in the eating department. I want that tube gone for his sake, but for mine I want to keep it. He will never take all that medicine by mouth!!!! It would take 20 minutes to get 1 in him now he gets up to 6 at a time.
I am home to pack some things to get us through the weekend and to update all of you!! I am headed back to the hospital and Jim will be staying the night. I will go back in the morning to let him go to work. That might be our arrangement this time around seeing as Taylor tells me to "Go" as soon as Jim walks in.
Prayer requests: Pray Taylor is out soon, but better yet that we are not fighting anything serious. Pray for Morgan as she is still waiting on those results. Pray for Austin and his family as they sort through this latest news. Pray for Deanna, she is really having a hard time right now. Congratulations Andy and Courtney, Gracie Coffey joined their family yesterday.
April 29, 2003 Day +27
We haven't done much of anything today. Taylor woke up at 7:15 and was upset when I stopped him from getting off the bed. He was still hooked up to his pole. He ate a few bites of oatmeal and then wanted pizza. He ate the cheese off of half of it. He has had about 16oz of tea today. I am glad that is picking up. He has played with everything and been very silly. He has also mopey and ran a bit of a temp. It got up to 100. We have to call the doctor at 100.4. Please pray that this is nothing more than a reaction to medicine and not the beginnings of serious problems. He seems to feel a little better after his nap and his temp was 99.0 at 3:45. I am glad we go to clinic tomorrow, I will feel better once he gets all checked out.
Please pray that Taylor's fever is nothing and goes away. Pray that he is nearing the end of his battle. Pray for Morgan as she waits for results of scans and pray they are clean. Pray that Austin gets to go home very soon. Pray for Deanna as she has been moved to PICU. Also remember Courtney and Andy as they welcome their new baby girl into our world, today.
******Please pray for Austin and his family. They have just learned that he is no longer in remission. He and his family could really use all of prayers as they begin another fight. Please stop by their site and offer some kind words.
April 28, 2003 Day +26
We are home from clinic. We got out at 10:30 or so. It was a much better visit today. Heather and Austin were there and we had plenty of people to talk to. It made the time go much faster. Taylor's white cells are up to 5.70 and platelets are up to 45,000. All his chemistries looked good. He was started on liquid albuterol 3x a day. WE have been told it will make him VERY hyper. That sounds fun!! His ear looks better and his nose is running still, but much less. He is using his ankles better, still a little heal walking. He is walking with his feet shoulder width apart and it looks really funny. We go back to clinic on Wednesday at 8:00.
Last night Taylor got some Buzz and fire truck big boy underwear. He had to wear one of each. He looked very funny, but cute. I brought an old easel of mine to him last night. He played with it for hours. We will know what to get him next Christmas. This one may make it that long. He is so rough. I played with that thing for years and he has it one night and it starts to fall apart. Boys! As for our eating, it is picking up. He had 2 lunchable pizzas last night and some cheese. Right now he is eating white cheddar noodles and cheese. I see a pattern forming. After clinic we went to Coin Castle to have his medic alert bracelet fixed. It happens to be next door to the Dollar Store. We had to make a pit stop in there for stickers. We then headed to Winn-Dixie for grapes and bananas. He was tired of his mask by then. He took it off enough to get his passy and then threw the passy. It is under the shelves at the store.....he says it is hiding.
We saw Austin today and he looked great. He was running around and teaching the nurses how to not step on the cracks on the floor. If you do you will melt into hot lava. oooh, scary!! Please pray they are able to take a visit to Fairhope soon. The both need a trip home, it has been 4 months since Austin has been home. Pray for our friend Deanna. She is having a hard time right now. We would like to ask all our great donors and honorary donors that are "o" negative and CMV negative to donate blood and especially platelets for Deanna. You can visit both of our friends at... www.caringbridge.com/al/austin or www.caringbridge.com/al/deannagarner
April 27, 2003 Day +25
What a fun day. Taylor started his morning with a bowl of huh-huh or oatmeal to the rest of us. We got dressed and applied our sun screen and bug spray and headed outside. He rode the 4 wheeler around the block. (All the nurses, nurse practitioners, and doctors just ignore that comment!!) He rode his gator all over. It was a little hard since daddy just replaced all the lights in the driveway. We were busy keeping him away from them. He helped haul off the boxes in the back of his gator. He held the wire while daddy pulled it up the hill. He is such the little helper. He had to come in at about 1:00 and get a bath. He decided to dip his hands in the bucket of bubbles and everything stuck to him. He has already had a dressing change and noodle flush. He is upset that he can't go back outside, but he will deal with it. That will help me tonight, not to have to bathe him. We have an 8:00 clinic appointment tomorrow. It seems like I always have a million things to do on the night before clinic. Pippy, Pop, and Pam (the three P's) all came over to play. Taylor is quite the showoff. We are going to grill hamburgers tonight. I am looking forward to it, but I am not so sure Taylor will approve of that menu item.
Please remember us in your prayers. Pray Taylor's treatment was successful and that he never has to battle it again. Pray for our other friends on 4 tower and the stem cell unit. Continue to pray for Brandy and Brianna as well as Courtney and Andy.
April 26, 2003 Day +24
We have had a busy day. Taylor slept until 9:00 this morning. G-mom and Jeanna kept him while mommy and daddy went shopping. Taylor ate a lot of tootsie rolls. He will gain weight! He had a few bites of pizza, some shredded cheese and a few bites of a bagel. He might have had 3 ounces of tea. He played downstairs on his bike and with a basketball since it was so cold. He wants to go outside so bad especially since Jim is using the 4 wheeler for yard work. He is sitting at the front door watching with about 10 toy 4 wheelers. He is "vrooming" them all over! He is such a boy.
Taylor got a potty chair today. It sings when he potties. He put one little drop in it, but he still got the "royal fanfare". He doesn't really get it, but he is trying and he is asking to sit a lot. He came and got me and pulled me to the bathroom to sit. He had just wet his diaper, so I guess he somewhat understands. I am not going to pressure him, but he has shown some interest so we thought we would give it a try.
Please pray that Taylor continues to make progress with his treatment and never has to endure this cancer again. Pray for Morgan and her family as they wait for the results of yesterdays scans. Pray for Brandy, Jim's cousin, and Brianna, her premature baby. They could both use our prayers. Also, pray for Courtney and Andy Coffey as they prepare for their new arrival on Tuesday. We wish them all luck!! Continue to pray for all our friends battling cancer!!
April 25, 2003 Day +23
We have had an uneventful morning so far. We got up at 8:00 for morning meds and to unhook our feeds. He has had about half of a bagel and about 4 ounces of tea. He really is doing good. He tried to throw up this morning, but he never did. He has played with everything. I am so glad he is putting things away when he is done, but it is about to kill me. By the time we get what he wants out and set up the way he wants it he is ready to put it up and get something else. He has watched a lot of new shows this morning and enjoyed it. It was a nice change of pace from our regular cartoons. He is walking all over. He is still very wide legged and wobbly, but he is trying. He is getting better all the time. He is also talking a lot. He said umbers aka thunder last night. He says playroom now instead of grunting and pointing when he wants to go back there and play. Last night when he was ready for bed he just went and climbed in our bed. He was gone about 5 minutes before we realized where he was. So, we all went to bed and slept great.
I was just thinking about how easy these last few days have been. It is amazing how a week can change things. It is also amazing how each life stage has such different worries. I will never forget the time years and years ago before Jim and I started dating. Me and a friend wrote with glitter paint on the road in front of my house. I wrote, of course, I love Jim. I thought all along it would wash off with water, but I was so wrong. We put everything on it and it wouldn't go away or cover up. I worried myself sick over what I would do if he ever saw it. As far as I know it is still there!!! It is very strange to think that that was my biggest life problem and I am sure I thought life as I knew it was over. I remember worrying over grades in college, what to wear, etc. All those things that seem so trivial now were so earth shattering then. I hope that means that years form now I can look back on this latest set of worries and laugh it off and realize how much stronger we all are because of it.
Please continue to pray for Taylor success in battling this monster. Pray for Morgan as she has her next round of scans to see if the cancer is gone after her first round of antibodies. Pray for Austin and that he continues to do well and heads to Fairhope soon. Pray that Alexis continues to do well. Remember Deanna as she continues to heal from her transplant and Tyler and Gracie are preparing for transplants in the next month or so.
April 24, 2003 Day +22
We finally left clinic at 11:15. We had an easy clinic visit today. We drew labs and then just waited on the results. His WBC are down to 2.35 from 4.78 on Tuesday. His plts are 34,000. He still can't drive, you have to have 50,000 for that:) His ear looks a lot better, but we are still on the diflucan. He is still very snotty, but his lungs sounded a lot better. He did good today, but he hated the waiting. He stuck tons of stickers and when we ran out he drove miss Jennifer crazy. He begged for pizza on the way home. He ate the cheese off of 4 1/2 pieces!!!! WOW!! He still hasn't drank anything. We ran into Miss Deborah (the nutritionist) on the elevator and she said to disconnect him for 8 hours a day and see how he eats. Hopefully he will really spark an interest now. We saw our friend Austin in clinic, he is looking great. Pray that both these boys eat soon and can get these tubes out and meet for a play date.
When I started this update, Taylor was sitting on his fire truck looking out the front door at the rain. A few minutes later here he came WALKING around the couch. He did it all by himself!! Dr. Lucas still wasn't concerned since he was bed ridden for a month and he did a lot better yesterday than Monday and Tuesday. He is now sitting here eating my sticky, I am sure you all remember that that is gum. Taylor is wasting gum, but he is getting good exercise. He is opening a piece and getting up, walking to the garbage can and throwing it away and returning to his seat. He then starts the process over. He has opened about10 pieces. I just had a piece and it was rock hard, so I guess I will let him have his fun. He is using it as blocks. He has no toys, ya know!!
On the way to the hospital this morning traffic was awful. We were at a standstill for a few minutes. Of course Taylor is yelling "MOVE" at all the cars. He got distracted from that when a huge fire truck with flashing lights and sirens buzzed right by his window. We got a little further and saw the wreck. It was a crumpled up camaro. Taylor looked at it and said "boo boo." I asked him if he thought the man had a boo boo and he just looked at me like I was stupid and said, "yeah"
We are free from clinic until Monday at 8:00 AM.
April 23, 2003 Day +21
I won the nap battle. It wasn't even a battle. He brought his school bus and people with him and played for about 15 minutes then he laid down and fell asleep. He slept a little over an hour and a half. He woke up and just sat there. He was quietly calling my name. He used to just belt it out until I came. He has been walking all day, but we have to help him. He is doing okay with the right foot, but the left one he holds really stiff and walks on his heal. I am wondering still if he didn't hurt it. He watched American Idol with his microphone, he doesn't forget anything. He ate about half a piece of cheese for dinner and nothing to drink. He is getting very whiney, I think he is just tired. We go back to clinic tomorrow morning. We will update then. Maybe an outing will make for a more exciting update. I know you all miss the sarcasm and frustration that was coming through a few weeks ago:)
We have been busy. Taylor had to get up at 8:00 to get all his meds and a new food bag started. He didn't want any part of breakfast. Papa came over and brought a tent. He had a blast playing stickers in it. You can tell he is back home just by looking around:) We just finished lunch. He has had a lot of marshmallows and a few noodles from my pasta. Only a few sips of tea. I am fixing to try and conquer the nap situation. Guh is coming this afternoon so we need an early nap, I don't think he will agree. We will update again tonight. Happy Wednesday to you all!
April 22, 2003 Day +20
Well, he really did want the peet peet. He ate the cheese off of 3 slices and drank a little over an ounce of tea. We are getting there slowly but surely. He is back in the routine of standing in front of the pantry door and stare. He ate a few gummies, but decided it wasn't what he wanted. He is doing good with his back pack feed pump. He wont wear it, but when he is ready to go to another room he will say "back pack" and tell you where to carry it. He also points to it and says "eat eat." He knows it is feeding him. He is crawling from room to room and with us pulling the lines around he looks like a dog. He now barks when he crawls!! He has walked some around the house with help. He is still walking on his heals, but not limping. I guess he will just have to strengthen his muscles. He is playing with a magna-doodle and he drew a smiley face and a frog. I promise he did it all on his own. He was very excited. Well. I better go. I just wanted you all to know he ate dinner!!!
It was a long clinic visit, but nothing like a clinic 5 visit. We got up this morning around 7:00. Taylor was not happy to get woke up. He fought me tooth and nail while I dressed him. He was glad to go bye bye once we got going. He remembered every bump and bull dozer along the way too. I thought he would be upset to enter the stem cell unit, but he did fine. He was not to excited to have to sit around. We ended up going into an isolation room since he is so snotty and there was a pre-transplant child there. We don't want to pass any germs. Taylor had to get a chest x-ray because he is so congested. His lungs are a little deflated and look like a lung with asthma or bronchitis. He was started on Zertec to help dry that up. He also got another nose swab test. He hates that. He did okay though. As for the limping. He is still refusing to walk, but I finally got him to walk to the play room. He walked the entire way on his heals. Dr. Lucas said he is toe walking, no he is heal walking. Anyway, it is due to being bed bound for so long. His ankles are stiff and will not bend towards his leg. It will get better with time. We had a spider man party today and Taylor ate about half a piece of cake. He got all kinds of goodies from the staff on the unit.
Taylor was sent home on only 6 medicines. All of them can be put in the TP tube. I have to crush to pills and mix it with his "special" water. I would rather do that than fight him to take it orally. We are again so lucky. The children who got marrow from donors go home on many, many meds. I lied about the counts. I still don't have the card. Yesterday his wbc had dropped to 3.25, but today it is up again to 4.7. He has an ANC of over 3,000. We have done another first. Well, It may not be a first, but it is unusual. Normally you go to clinic every day for a while. Not Taylor, we go back on Thursday.
Taylor just came inside after playing outside. He is ready for peet peet. I guess we shall see if he really wants it.
April 21, 2003 Day +19
Home sweet home! Sorry it took 10 hours rather than 3 for this update, but it has been a long day. Guh brought Taylor home while mommy went to pick up supplies for the tp tube. It took much longer than expected. I even had to take a test before I could go. yes, I passed it. The first thing Taylor did when he got home was check out his room and play room to be sure all was in order. Then he headed straight for the kitchen and started EATING Lucky Charms, the marshmallows rather. He played with everything. I think he liked the playroom clean because he put each toy away before getting anything else. All my preaching did sink in! He even road his gator in the yard. He took a good nap once I finally got him still. We cooked a pizza and he ate the cheese off of about 3 bites and maybe an ounce of tea. It isn't much food, but it is a start. Hopefully each day will bring more and more eating. Taylor is still wobbly on his feet. He fell today and now he refuses to walk. At first he complained of his left foot's toes hurting and now he is complaining of the right leg. I am a little afraid, but I guess that is to be expected. We are thinking maybe it is bone pain. We have heard that when the bone marrow starts growing back it is painful. I know he fell and could have hurt himself, but switching legs makes me thing maybe it is bone pain. I hope so. I will discuss it with the Dr. tomorrow. Taylor didn't give us any trouble at bath time like he was at the hospital. He had a blast. He stayed in until every drop of water was down the drain. We have had a first tp tube incident. It is starting to come out and the tape is pulling up. He wont let us fix it and he ended up pulling it out a few inches. By the time I got the nurse on the phone he had used his throat to suck it back in. We hooked his feeds back up and he is good to go. I hope to re-tape the tube while he is sleeping. He just crawled down the hall for bed. He has had a big day.
He will go to clinic at 8:00 tomorrow morning. He will have labs and vitals done. I am not sure what else. We will discuss the leg pain and tp tube. He will get his party tomorrow. He didn't get it today because of the Easter holiday they couldn't get a fresh cake. He couldn't have eaten it if it weren't fresh. It would have been our luck that he would want to eat it and us not be able to give it to him. He probably wont eat it, but he will enjoy it. I will post his counts from today on tomorrows post. His card is still packed up. We will also post new pictures soon. We don't have to may new ones since Taylor didn't like getting his picture made while he was feeling bad.
April 20, 2003 Day +18
Happy Easter!!! Monday still looks like a go, as long as no fever erupts. His white blood cell count took a plummet, but did not concern the doctors. He will probably stop his G-CSF shot after tonight's. Taylor is in a really good mood today, and has already had a visitor today. Jeanna and Bob came by with some Easter presents for Taylor, plus he got a basket from the Stem Cell unit.
PCV (hematacrit): 30.8 (normal is 39-49)
HGB (hemoglobin): 11
RBC (red blood cells): 3.51
WBC (white blood cells): 6.54
April 19, 2003 Day +17
Today has been very uneventful. More of the same, playing down on the mat on the floor. He has now moved to his bed and is playing with a chalk board while watching Charlotte's Web. He likes the pig. He had a good nights sleep, and you can really tell it by the energy he has today. Dr. Sande said he is doing really good, and they are increasing his feeding to 40/hour, his max rate. If he handles this, going home Monday should be no problem. When we first got here to Stem Cell, I told the doctors and nurses he would be going home on day 15, and I didn't miss it by much, with him going home on day 19.
PCV (hematacrit): 31.4 (normal is 39-49)
HGB (hemoglobin): 10.8
RBC (red blood cells): 3.59
WBC (white blood cells): 14.03
April 18, 2003 Day +16
Taylor is doing great today, and check out those white blood cells!!! We are right on track to go home Monday. A lot of the nurses thought we were leaving today, but Dr. Lucas wants to watch him over the weekend and make sure he is handling the feeds through his tube, which got replaced this morning (twice). It was quite an experience for Gram. It all happened because late last night while Taylor was sleeping, he pulled the tube out of his nose. He had to go this morning to have it replaced and it took over 2 hours, plus the doctor got very rude with Gram. We are turning him in for his behavior. Taylor is currently (1:10PM) in the flood playing and having a good time, while watching elmo.
PCV (hematacrit): 31.5 (normal is 39-49)
HGB (hemoglobin): 11.0
RBC (red blood cells): 3.60
WBC (white blood cells): 9.57 (That is 9,570 white blood cells!!!!)
April 17, 2003 Day +15
Update 11:40AM... I totally slept through rounds this morning. I have been waiting patiently for them to happen not knowing they already did. Anyway, I talked to the nurse, who didn't miss rounds, and got the low down. We will be discharged on Monday. There are several reasons. One is the poop, they want to let him get off the TPN feeds and see if he has less runny stools. He will continue to be bumped up by 5mls on his TP tube feeds and bumped down on the IV feeds. We are going for a goal of 40mls/hour on the TPN. This is what he will go home on. Dr. Lucas stopped the ear drops. He did it because the ear is so full of gunk he can not tell what is yeast and what is drops. He will let it go without a few days and see what it looks like. He is also still getting the G-CSF and daily lab work. If we go home on Friday we would have to come spend most of the weekend here anyway. So, we will go Monday and That is still very exciting. Only 28 days inpatient, that is awesome. He will have the Easter Bunny leave him a few goodies, courtesy of the hospital. He will also get a going away party Monday.
We are finally up this morning. We had a late night because someone did not want to go to bed. He did everything to stay awake. We sang the Wheels on the Bus, Twinkle Twinkle Little Star, Itsby Bitsy Spider, and the finger play of here is the church, here is the steeple... It was very cute that he could do it, but not so cute at midnight. He finally fell asleep soon after 12:00 and slept all night even through diaper changes. They have a new policy now. Pumps can not be set to run continuously rather they can only run for 2 hours at a time. We had a great nurse that came in before it beeped. So we were not up a hundred times. I am sitting on the word go, so I packed up some stuff and got it ready to just grab and run on what ever day. I don't know how Taylor slept through all that. I knocked over everything!! Taylor has a new trick. He gets tired of taking his passy out to wipe his runny nose, so he sticks it to the side like a pipe and lets you take care of the nose. Anything not to lose the passy:) He is watching Sesame Street and matching the characters to his stickers. He is one big ole sticker kick. He has probably stuck 100 sheets to a notebook. There is really no news to report here. Still having runny poops, still no eating or drinking. Counts are looking good. We are just hanging around until something happens.
Please pray that all these good things happening for Taylor are permanent and he will never endure this treatment again. Pray for all our other friends still fighting.
PCV (hematacrit): 30.2 (normal is 39-49)
HGB (hemoglobin): 11.0
RBC (red blood cells): 3.49
WBC (white blood cells): 2.45
April 16, 2003 Day +14
If there is one thing I have learned in this 6 month journey with Children's Hospital, it is not to get my hopes up. The rumors about us leaving have changed to Saturday to Monday to within the next 5 days. I of course want to stay if it is in his best interest and I am sure it is if they want us to stay, but I would rather have not known about a Friday departure. Oh well, within the next 5 days is still very exciting. We will come to clinic here for about 3 weeks then we will be released back to Dr. Berkow and good old clinic 5. I am ready in that it means another hurdle down, but that means long waits again. The clinic on the stem cell unit usually only has one child in it and no public to pass germs. We will not be randomized for the anti body treatment until days +50-+70. We hope to be able to do it here in sweet home Alabama. It is not an inpatient thing, we would only stay a few hours a day, but it last 2 weeks at a time. Taylor and I would have to live in the Ronald McDonald house in New York. That is a trip I am not ready for. Me and Taylor on a plane to the Big Apple, alone. Ha!! Taylor took a real bath tonight. He loved splashing, but hated the bathing part. We couldn't get him out. He ate about 5 pop corn kernels. The nurse didn't want to chart that he ate the number one choking hazard. He didn't choke, but he got tired of it quick, to quick to get thirsty. We will keep trying. Guh, will be staying tomorrow while mommy and daddy go home to clean and sanitize the house and get it ready for Taylor.
One more day down. Today is day 23 here on the stem cell unit. As bad as I thought I had it so many more have stayed do much longer and had so many problems. I shouldn't complain, but that is easy to say now that we have almost cleared this hurdle. Yesterday our new friend Gina, who relapsed with leukemia after a 9 year remission, went home. Today Austin is being released to their apartment. Let us all thank God for that and pray that he is allowed home to Fairhope soon. AS for us, it looks like Friday is the big day. Rumor has it we have set a new record for leaving so fast. I have no idea since I know very few people who have been up here. We will have to come everyday for clinic visits. He will continue to get blood products as needed and fluids to help with dehydration. He still has zero interest in drinking or eating. Thank goodness Dr. Lucas is willing to let us go home and try to get him to eat. If he doesn't it could land us back in the hospital but more than likely not. He can get fluids every day in clinic and his TPN is supplying all the calories and nutrition he needs. He never ate good in the hospital so hopefully he will pick up at home like he usually does. He received platelets this morning, but we did not get our full benefit of the benadryl. He took a 30 minute nap, but woke up when Guh put drops in his ears. The drops burn really badly and he is not helping it by pulling his ear as hard as he can. I think he is going to rip it off. Today's counts are the opposite of yesterday. Everything went up but the white blood cells are down. Dr. Lucas said that was normal, but let us pray they go back up and do not continue to drop.
PCV (hematacrit): 30.9 (normal is 39-49)
HGB (hemoglobin): 11.0
RBC (red blood cells): 3.54
WBC (white blood cells): 1.85
April 15, 2003 Day +13
Don't forget last nights late entry!!!! It's full of more good news:)
Counts are in. Everything except white blood cells dropped. Still no need for transfusions yet, but could be soon. Who knows with Taylor they might all sky rocket over night.
Today started early. Dr. Lucas came in at 7:20. Nothing new to report. He is still doing fine and on schedule. After he left Beth came in and got vitals and we changed him. We were all done at 8:00. Transport came and got us and took us to radiology to get the TP tube placed. I was given the option to stay in the room or leave. I took the easy road and left. I warned him that he has a gag reflex of nothing and he would puke on them and he did. It only took about 10 minutes to do it. Unlike the last time they did it with the x-ray machine so we know it is in the right spot and we wont have to adjust later unless it comes out. He has yet to mess with it, but he has a cough and I am afraid he will lose it that way if not then tonight when he starts his nightly "choking of the snot." I hope it stimulates his appetite quick!! He had a great night. He didn't wake up at all. He would have slept late today I think, but we woke him up. He is back on his mat playing and in a good mood. He is still hooked up to his IV nutrition, but I hope they unhook it soon. He is so much easier to handle with no tubes, plus I want him to get thirsty.
After last nights talk about leaving he was pretty excited to leave this room. He was taking in everything. He looked at every picture on the walls and all the nurses. He had this expression like wow, there is life outside of room 659. He remembered the cross walk to the harbor where we count cars, he remembered the lights. He was thrilled to be out. It was hard to not just put him down and let him run. The fun ended when we entered that room and he saw that big x-ray machine!! He didn't want to go back in the room. He can walk the halls now, but not too much. I know that if we go one time he will want to stay out there. Hopefully we will go home and he can just do his walking there. He had to wear a gown and mask to leave the unit. The mask did not go over to well. I guess we will definitely venture out into public until he can do it without a mask. It was very unpleasant. Well, I better get in the floor and help stick stickers and flip frogs before I am in trouble.
PCV (hematacrit): 29.7 (normal is 39-49)
HGB (hemoglobin): 10.6
RBC (red blood cells): 3.42
WBC (white blood cells): 2.33 UP (THIS IS 2,330!!!! YEAH!!!!!)
April 14, 2003 Day +12
Don't forget last nights late entry!!!!
10:00pm...Today has turned out to be a great Monday. I may have to look at Monday in a whole knew light now. Dr. Lucas came by at 4:00 and we talked about his eating and drinking. Taylor is off all meds other than diflucan for his ear and Zantac for his tummy. He is on the tpn IV nutrition, but he will be taken off that during the daytime hours starting tomorrow to try and stimulate an appetite and thirst. Tomorrow morning he will get a nose tube put in and will get calories that way. He will have to drink on his own to stay hydrated. If he will drink good we can go home on Friday or Saturday. I am so ready and so is Taylor. All he can talk about is vrmm vrmming. I have tried everything to get him to eat. I explained that if he ate he could go home. He threw his grilled cheese across the room and said "Bye Bye". I told him if he ate some cheese he could hear it rumble in his tummy with the stethoscope. I handed him the stethoscope to use after he ate, well he had other plans. He just listened to the cheese. Why go through the middle man? He did finally eat about half a cookie, but not one drop of liquid. That is the thing he has to do to go home. He always works backwards. When we do go home we will have some new rules to follow for a while anyway. Taylor will have to get a medic alert bracelet to wear for a while. He will also have some new eating habits. No delivery. Everything has to be eaten within 30 minutes of cooking, nothing from bulk. We will have to use a fresh knife every time we dip into a jelly jar or peanut butter etc. Ice and tea have to be made with reverse osmosis treated, bottled water. The one new eating rule that bums me the most is that he can not have homemade mayo. I do love to make homemade mayo. Ha, who really makes their own??? I would never have dreamed they would even need such a rule. Anyway, the list goes on, It really isn't that bad since he is such a picky eater anyway.
When Taylor was first diagnosed I came across a web site that listed the web sites of children with neuroblastoma. I randomly chose the ones I looked at and always picked one with an unhappy ending. I quit reading. I didn't want to know what happened. Now that we are further down the road and I know that every child is different no matter the similarities, I have started reading them again. I realize that even thought Taylor has faced things that no one especially a child should deal with, we are so lucky. Some kids breezed right through and are fine now. Some breezed through and then relapsed. Some passed away because they could not take anymore. Then there are the ones who just dealt with the most awful things. Some children lost a kidney due to where the tumor was. One little girls tumor was wrapped around the main artery to her heart and it was inoperable. Several children were confined to wheelchairs indefinitely because of such severe bone and bone marrow involvement or a tumor attached to the spine. One child suffered complete and permanent kidney damage because the surgeon severed nerves during surgery. The tragic list is so long. I count the blessings we and Taylor have been given throughout the ordeal. As bad as times were it could have so much worse. We thank all of you who have prayed for us, donated money, and everything in between. We love you all!!
12:00PM... Things are looking really good around here! Taylor was taken off his antibiotics and the fungal medicine. He is getting a yeast medicine for the ear, but it will not cause all the problems the ableset (sp?) did. Other than that all his is on is IV nutrition. He got very excited when his lunch tray came in. He attempted a bite of corn, but spit it out. I wouldn't want to eat corn either if I had spent a week smelling like a can of it. He has taken a bite of several reesie cups, but spit that out too. I suppose it is good that at least he is trying and maybe that means he will be eating soon. Hopefully now that the antibiotics are gone he will quite having runny diapers and I can lose the pretty gown. He has had a great day. He has played on the computer and on the mat. He is now in the bed sticking stickers on everything. I hope he is getting ready for a nap, I am!! More later.....
Boy have I got news to make it worth getting up on a Monday morning. Taylor's counts are great!!!!! He doesn't need a transfusion of any kind today. He is still pooping, but it is antibiotic related. Of course we are still wearing our beautiful paper gowns. He had a great night. I changed him the few times I heard the nurse come in and he slept through all of it. He did have a poopie diaper leak this morning, but the chuck caught it all and left little mess. He finally fell asleep around 11:30 last night. He still is full of snot and tends to choke on it when laying down and ends up throwing up. That is what kept him up so late last night. He would get to frustrated that every time he got comfortable he had to get back up and cough. At the moment he is sitting in bed taking the paper off all his crayons. What ever makes him happy, right. The night and morning were very uneventful. I like it that way. I will update again later.
PCV (hematacrit): 30.8 (normal is 39-49)
HGB (hemoglobin): 10.9
RBC (red blood cells): 3.56
WBC (white blood cells): 2.15 UP (THIS IS 2,150!!!! YEAH!!!!!)
Potassium: 4.3 UP
April 13, 2003 Day +11
9:30 PM: What a difference a week can make. I was ready to run last week when I got back to the hospital. Today has been so pleasant. I have seen a hint of the old Taylor coming out and it is great. I got here around 4:00 and we got the mat out and got in the floor to play. We bathed and did dressing change in the floor because he was not ready to get up. At 8:15 he finally got in the bed, but only to play not sleep. He has had a few episodes, but these are normal 2 year old things not a crabby transplant attitude. He is still refusing to where a diaper. I have just covered him up with a towel. He wets the towel and realizes he needs the diaper. Now if he will just realize it from the beginning rather than trying it every diaper change. He got angry when he couldn't pull his Elmo stickers off without tearing them. He got very angry at bath time, but he did fine with the dressing change. It has been so much easier to manuever him without all the extra wires. He has only mentioned his mouth hurting a few times all day. Still no eating, but he did ask for some cookies. None of them suited his criteria to be eaten so who knows if he would have really eaten them. He is now playing with miss Lynn's flashlight. That is our new tradition, taking the nurses pen lights. He has quite a collection. He should sleep well since he has been up and playing for so long. Hopefully we are on the road leading out of hear. It will be so nice to be at home again. No, we wont be back to normal or go places, but we will be home.
Pray for Taylor's complete recovery from this and to never fight this monster again. Pray for Morgan as they try to sort through the latest news. Pray for Austin and that he eats soon and can head home. Pray for Deanna who will get her transplant tomorrow and pray for Nick, her brother who will be her donor.
10:30 AM: Taylor had a very good night last night, and as I expected and predicted, his white blood cell count almost tripled to 710! This is a very good sign. His platelet count was low this morning, and they gave him platelets (one's daddy donated) earlier. He is sleeping now as a result of the benadryl he received for the platelets. We should start to see some real progress with the mouth sores. They also took him off all the monitors, due to the fact they have removed his constant morphine drip. He will now get a smaller dose of morphine every 4 hours, and should have him off of morphine all together by tomorrow night. Please focus your prayers toward the removal of any cancer disease in his body, and praise God that 7 American troops were found today, and for their safe return to the United States.
Platelets: 17,000 DOWN (RECEIVED PLATELETS AT 9:30AM TODAY)
PCV (hematacrit): 29.8 (normal is 39-49)
HGB (hemoglobin): 10.5
RBC (red blood cells): 3.47
WBC (white blood cells): .71 UP (THIS IS 710!!!! YEAH!!!!!)
Potassium: 4.2 UP
April 12, 2003 Day +10
8:30PM: Taylor has been asleep since 4:30PM. Looks like it will be another late late night. I hope not, because I have an appointment at 8AM to give platelets, maybe they will let me sleep during it? Taylor has been in a decent mood today, spending a lot of time at the computer playing games and surfing the internet, his favorite site being Sesame Street. He did not have any reactions to the fungal medicine tonight, which is a good sign. I have a feeling we will see a significant jump in his white count.
8:05AM: Taylor had a very good night. We only had one instance where we actually had to wake him up, all because his diaper runneth over. He slept pretty sound, but that probably had more to do with the fact that he did not go to bed until 12:30PM. He is still sleeping, and I hope he gets some much needed rest, and his body starts to heal itself. The doctor just came by for rounds, and said his white blood count is up to 290, but still in the area where it could be off a little. Hey, I'll take any increase! Please continue to pray for Taylor, as the cancer is killed in his body. We only have to look to our friend Morgan to know that there is a good chance there are hidden nueroblastoma cells in his body. Pray for Morgan, that the 3F8 antibody will attack those few remaining cells and kill them off forever! Pray that Austin will start eating, so that he can "bust out of this joint." (By the way, as of last night, we heard he is doing fine) Please pray for all the children out there facing some kind of adversity in his or her life, whether it be cancer, child abuse, or any other struggle they may be dealing with. Pray for our troops, and a safe and quick end to this war.
Platelets: 32,000 UP (RECEIVED PLATELETS YESTERDAY)
PCV (hematacrit): 28.1 (normal is 39-49) DOWN
HGB (hemoglobin): 10.1 DOWN
RBC (red blood cells): 3.29 DOWN
WBC (white blood cells): .28 UP
Potassium: 3.2 UP (GETTING MORE TODAY)
April 11, 2003 Day +9
7:00PM: Taylor has had a very good play day. He played hard for about 4 hours, playing on the computer, playing in the floor, and playing in his bed. So far, he has had no reactions to the fungal medicine. He even tempted to eat today, before deciding against it at the last second. Pa Pa came up at about 10AM this morning, and Kim went home to get some much needed sleep and rest. Daddy will be here until Sunday evening, when mommy returns. Taylor is sleeping right now, and his heart rate is at a good level, ranging anywhere from 85 to 105.
Another fun filled night. Last night was a new adventure. I am not sure if that is good or bad. After he finally settled down around 1:15, I had to sit in the chair next to his bed. I couldn't move an inch. Finally at 2:00 he fell asleep and so did I. At 3:30 he woke up during more nursing stuff, but quickly fell asleep. I on the other hand did not. His heart rate was low and the alarms were dinging. It ding donged for 20 minutes straight. I finally buzzed her and begged her to change the settings. She can't without doctors orders. I finally fell asleep listening to it. At 4:30 he woke up while they changed site caps and drew labs. He made me stand, not sit, but stand, by his bed until he went back to sleep after 5:00. I finally got back in bed and was all cozy in the bed and the TV went to one of those "this is only a test" screens and starts a constant buzz. I thought I was going to die. I changed the channel and went to sleep. It is now 9:15 and he is still asleep, but I can not sleep because it is med time. Every time I get good and comfy something bings. I just gave up. Dr. Lucas came in at 7:20 and looked him over. His ear is still draining white, yeast looking stuff. His heart rate is down due to the low potassium and that is due to the fungal medicine. He will receive platelets and potassium today. I am going to check with the nurse practitioner and see if we can decide on a schedule for direct donors to donate for him.
Platelets: 16,000 (will get some today)
PCV (hematacrit): 29.5 (up and low, normal is 39-49)
HGB (hemoglobin): 10.7 (up)
RBC (red blood cells): 3.47 (up)
WBC (white blood cells): .21 (up, this is 210. Good, but still in the area for error could really be lower)
Potassium: 2.5 (up and low, normal is 3.5-5.2)
April 10, 2003 Day +8
10:50PM.... What a day! Taylor slept a god bit earlier in the day because he took benadryl as a pre-med to his blood transfusion. He woke up grumpy, who'da thunk it? He wanted to play the Elmo game. I have created a monster! It took an act of congress to get him and all 50 wires to the computer without tangling or pulling anything. We played Elmo for over an hour and he said he wanted back in the bed, but he lied. Once we got over there he went crazy. I just let him go crazy. He had several fits today. The best one over a diaper. He refused to let me put one back on him. I held him and everything else I knew to do, but I could not get it on him. He is not weak by any means. I finally just left him naked and about 10 minutes later he asked for one and was very cooperative. He refuses to put one on every time now, but I know now to just ride it out. We started the abelset (sp?) at 5:00. He got benadryl and Tylenol before hand. Thank goodness he was asleep and I just slipped the tylenol in with out a fuss. I also managed to get a syringe full of mouth wash in that way to. His mouth looks bad to me, but the doctor assures me it looks good. Mom and dad went to the parent support meeting. We were the only parents there so we ate and played hangman with the volunteers, nurses, chaplain, and social worker. It was fun. We got back to a room full of excitement as well. Taylor not only continues to react to the fungal med he likes to react different every night. Tonight he was struggling for air and grunting and in turn coughing up blood because he was irritating his throat and his skin got splotchy. We had to take more benadryl and tylenol. He wasn't asleep this time and it was not fun. Bath time and dressing change was no fun either. He was grabbing the rag and slapping us. Taylor is about to be off the passy. No, not because his mouth hurts and he can't suck it but because I am going to throw them away. The one thing that has to be cleanest he continuously throws in the floor. I know he feels bad, but uuugh!!! Finally Taylor is watching Toy Story 2 and dozing. Hopefully he will have a peaceful night. Oh, by the way, he weighed in at 12 kilograms tonight. He is usually 11.6 or so. He has had another ounce or so of tea. I guess it is helping. He hasn't weighed 12 in months!! I started this so long ago and I got called away when the nurses came in. It is now 12:15Am and he is coloring and putting stickers every where. He had so much benadryl sleep that now he is awake!! He has had a blast with miss Shannon's pen light. Taylor has a flashlight with a little "L" shaped piece on it. We had to cut a flexi straw and put it on the end of Miss Shannon's light so they would match.
PLTS: 300,000 (normal)
WBC: 5,000 (normal)
patience: 1 (low, will get transfusion over the weekend)
Love for Taylor: 100% (high)
Please pray for all of us to get through these tough times. Pray Taylor is free from this disease forever!! Pray for Austin, Sophie, and Alexis. Pray for Gina and Deanna. Deanna just got on the stem cell unit, she will have her transplant on Monday. Please pray for Morgan. She traveled to New York to have tests run for the antibody treatment. Sloan-Kettering does much more extensive testing than most places. It was found that she does indeed still have neuroblastoma cells in her right hip. Please visit her site and give them some words of encouragement. www.caringbridge.com/nc/morganbarnes
Show of hands, how many of you have come here 50 times today looking for an update? I went home last night and G-mom spent the night. She had an action packed evening. When I left Taylor was playing an Elmo game on the computer. He was in a pretty good mood. That didn't last. He was given benadryl before the medicine, but it didn't help, he still get the tremors and spiked a 103 fever. Cultures were taken, but they believe it was just a reaction to the med more than infection. We will keep our fingers crossed. The medicine is not started until 10Pm, so it pretty much ruined his night. At the moment he is sleeping soundly. The plan is to give the medicine around 5:00 so that it doesn't keep him up all night when he reacts. He has to get it so we will have to just continue to fight the reactions. He will be given Demerol (sp?) to help with it. He drank about an ounce of tea last night. That is a good start. It will help his mouth if he will use it some. Okay, so that is my thinking not a medical thing. It makes since though, doesn't it? His counts are in and they don't look so good. I spoke with Cindy, the nurse practioner, and she said it was fine. His counts can still go up and down due to the chemo. We will look for something to happen on day 15-22. He is getting whole blood and potassium today. Potassium plays a big role in the heart, so hopefully that comes on up and stays up. Still waiting on an answer for the c-diff. I am so ready to take this paper gown off. Be sure to come back 50 more times and I will update again later. Also, sign the guest book.
PCV (hematacrit): 22.6 (down and low, normal is 39-49)
HGB (hemoglobin): 8.1 (down)
RBC (red blood cells): 2.69 (down)
WBC (white blood cells): .08 (down)
Potassium: 2.4 (down)
April 9, 2003 Day +7
Taylor seems to feel much better. He sat up for about an hour today and played ball. He was squealing and laughing. He even shook his head back and forth really fast yelling. He looked sort of like a basset hound, slinging all that drool. He was very pleasant. Once he was finished playing he got grumpy and poking at his mouth. He is begging for medicine, but as soon as I get it ready he gets mad and yells no or pushes me away. Once he got that little episode over with he started drawing and he was fine again. He is resting now and watching Mike. Hopefully he will fall asleep soon. His counts are in. I am assuming platelets were counted before the transfusion, so I am not concerned with those numbers. His potassium was low, so he was given some to boost him. His white blood cells didn't change at all. Dr. Lucas isn't concerned with that. He said that since Taylor's product was manipulated or purged it may take him longer to rebound. We finally caught the third c-diff sample. I will tell you it was no fun. We had to put saran wrap in his diaper and when he pooped she sucked it up with a syringe. Great mental picture, huh? We should know in 24-72 hours if we can come off contact precautions.
PCV (hematacrit): 25.9 (down and low, normal is 39-49)
HGB (hemoglobin): 9.2 (down)
RBC (red blood cells): 3.04 (down)
WBC (white blood cells): .10 (same)
Potassium: 3.0 (down)
The new medicine he was started on turned out to be a real adventure. He started breathing funny and having tremors. The nurse came in and handled it all immediately and everything was fine, but it was the last thing in the day I could take. I just cried and cried. I was afraid because he has never reacted to anything before. It was very simple to fix, he was just given benadryl and within about 20 minutes he was sleeping soundly. He will get benadryl before he takes it tonight to prevent that from happening again. I was just a nervous reck last night after that and couldn't sleep. Well, the Lord knew I could take no more and he answered my prayers for peace in the situation. He does work in mysterious ways. I love the nurses on the 6th floor, they are all wonderful, but you all know how it is when you are afraid. You really just want someone you know well to be there. God knows that too because he sent us Rookie, a 4-tower nurse. I felt much better then. I knew Taylor was fine anyway and I never once questioned anything anyone from this unit did. It was just God's way of letting me relax last night. I did too. I slept so good. I even missed the platelets being given at 6:00AM. Taylor did well during the night because if he did wake up he saw a familiar face and that kept me from having to get up a lot.
This morning rounds were at 8:00. Dr. Lucas said his mouth still looked pretty good and we are doing good with mouth care. His bottom is getting raw. I don't like the answer for that one. He wants us to leave the diaper off. Lets think about it. A non-potty trained, 2 year old boy who is pooping liquid every five minutes sitting in bed with no diaper. Not my idea of fun. We are trying to just leave it unfastened. Taylor didn't like the idea either. He kept pointing at his nakedness and crying. Dr. Lucas mentioned that the fungal med is the mother of all fungal meds and it is like dropping a bomb on his ear infection. I hope it clears it up soon!! We don't know counts yet. I will post them when I get them.
April 8, 2003 Day +6
10:15pm... My night got much better!! Papa and G-Mom showed up and I went and set with the 4-tower nurses for a while. I needed to just get away. Where else would I go? While I was there, Tina, Austin's mom, came down and invited me to dinner to celebrate her birthday. (Happy birthday Tina!!) We went to Jim N Nicks, my absolute favorite. We were joined by Miss Linda, Miss Jennifer, and Miss Rhonda. It was a blast and I needed it big time. I feel much better now. It also helped to come home (did you catch that, home, I think that is a sign we have been here too long) to a bathed child with a dressing change. Thanks G-mom, Papa and Ca-Ca. Taylor is now sleeping. We had to wake him up because his leads fell off and his heart and respirations were not picking up. He was started on a new medicine tonight. It is for fungus. He still has ear problems that just wont go away. He has been on drops and or antibiotics since February 28th for this ear infection. Just think if we hadn't gotten the new tube. We still have no platelets. I do feel a little let down by that after all we did to ensure that he would have them available, but what can you do. I have learned so much through this journey and made such wonderful new friends. Though I wish we had met under different circumstances, I wouldn't trade them for the world. I have learned from my dear friend Tina not to feel sorry for myself but to count the blessings I do have. I have many many blessings and I am very thankful especially tonight after a long day that ended so well. I love you all!!
2:45 pm.....Before I forget, Taylor's minimal residual disease test was clean. That means that the bone marrow they looked at microscopically didn't have evidence of neuroblastoma. I have just finished calming him down from one of his many outbursts today. I think he is trying to prove he has the best lungs on the unit. I am about ready to scream myself. He is in so much pain, but he has no idea what he wants or needs to make it better. I have tried to put magic mouthwash on his mouth, but he gets VERY ANGRY. I can not fight with him since his platelets are so low. No, we still have not found any for him. He points to the medicine, but when you try to use it he goes crazy. He has been dozing all day, but every time I try to do something he calls me. So, I was waiting on his lunch tray to arrive since that was going to be my only hope for lunch. Well, I guess to keep in style with the day, no lunch ever came. Finally at 1:00 I asked and I had food ordered. It was really not that big of a deal, but today it was huge. I tried to take a nap. but either him or a pump kept me up. I am so on edge that the slightest thing is going to push me over. Keep those prayers coming, I need that strength and patience. Please remember to sign his guest book. We all need those words of encouragement to keep us going.
It is only 8:40Am and Taylor and I have already had quite a morning. He slept fairly good. He only woke up when we changed his diaper, but it was a battle, so we went back to bed mad. He is still having very runny poop. He has had 2 diapers tested and they are both negative for c-diff. He needs one more sample collected and tested. If the third test is negative he will be taken off contact precautions and we can quit wearing the gown and gloves. We were up early for rounds. That is when the fun began! He got woke up by the doctor trying to look in his mouth. His mouth has a really bad sore behind his molars and he continues to chew on it and make it worse, but that is all he has. We had a nurse tell us to not do the mouth care anymore. Dr. Lucas said, yes, do it. That is why he looks as good as he does. He is in terrible pain, so I can only imagine it if was worse. I had to hold him down for mouth care. I didn't use a toothette like normal because that does aggravate his mouth. I just squeezed some from a syringe to coat his mouth some. He spit it right out so I don't know how much good it did, but I tried. He really can not handle the toothette now, his platelets are low and he is already having some bleeding. That brings up another problem. He needs platelets today and we will have to wait for some to be located because his direct donor bag is expired. It expired yesterday, his platelets were low yesterday, why didn't he get them then and use the bag??? Who knows, I just know it really rubbed me the wrong way this morning, as did a lot of things. Mr. do anything to get out of a diaper change is now demanding to be changed with the slightest hint of moisture in the diaper.
Please pray that we are putting him through all this for a reason. Pray he never deals with cancer again. Pray we both have the strength to get through it without killing each other:) Pray his counts come up soon so that he can begin to heal. I am ready to go home, but I will stay 3 months if he is just happier.
Platelets: 18,000 (low, he will get platelets today)
PCV (hematacrit): 27.4 (down and low, normal is 39-49)
HGB (hemoglobin): 9.9 (down)
RBC (red blood cells): 3.24 (down)
WBC (white blood cells): .10 (down)
Potassium: 4.1 (up)
April 7, 2003 Day +5
Update 7:55Pm.... Wayne, you just thought he had a "tude" last week. Wow, he is a monster. He has every right to be, but it is hard for mommy and daddy to take it. If I have to look in his mouth with the light again, I think I will scream. He is trying to play and feel better, but he gets very frustrated with things and throws stuff. He then gets mad because it has to be washed to get it back. His mouth doesn't really look worse, but it is very sore. I tried to put ora-gel on it, but he wouldn't let me. He is entirely to smart. I told him I was washing his passy when I was really coating it in ora-gel. I turned the water on and everything. When I came back to his bed he told me to sit it down while he drank some tea. He hasn't had a drink in days and now he needs one, hmmm. I sat it down to keep him from blowing up and he threw the cup and said "uh oh" and pointed to the passy. I tried to just stick it in his mouth, but he wouldn't let me. I got a tiny bit in his mouth and he spit it out. It does taste bad, but if he realized it would numb him, he would love it. He has already had a bath and a dressing change. That was no fun at all. You would have thought we were killing him the way he was carrying on. He is now watching Buzz and waiting not so patiently for night night to come out of the wash. Please pray we see a significant jump in counts and mouth sores to begin healing. Please pray for a better attitude soon and for mommies strength to deal with the bad attitude until it gets better. Pray he never faces this disease again. Until tomorrow....
Just a quick fact, all of Taylor's pages combined surpassed 50,000 visits today. Taylor averages about 300 people a day, that visit his page. Feel free to sign his guestbook to let us know you visit, and tell Taylor hello. Each night, Taylor sits at the computer and reads his guestbook (well, actually we read it to him!) and looks at his pictures.
Last night was very rough. Taylor was up a lot. There are a few reasons why, but I won't go into that. His mouth is really hurting him, and the spot behind his back right lower molar is bleeding a little. They gave him an extra shot of morphine last night to help with the pain. This morning, as usually, he wanted me to look into his mouth with the doctors light, but he can barely open his mouth now. The nurse said this was due to swelling around the back of his mouth and was common. He looks so pitiful. Its 9AM, and he is lying in bed watching Toy Story 2. He seems to be in a little pain right now with his heart rate back in the 140's. He has been on a movie kick here lately. We have watched Toy Story 2, Wizard of Oz, Charlotte's Web, and Monsters Inc. See, just like that, I had to put in Monster's Inc. Please pray for Taylor's mouth sores to heal, and stop causing him so much pain. Pray the chemotherapy has done it's work, and has removed all traces of cancer in his body. Pray for all of the other children battling cancer, and please pray for our troops over seas, and their families during this difficult time in their lives.
Platelets: 25,000 (low, he will get platelets soon)
PCV (hematacrit): 28.9 (up, received blood yesterday)
HGB (hemoglobin): 10.5
RBC (red blood cells): 3.43
WBC (white blood cells): .18 this is 18, not 180 or 1,800, just plain old 18.
April 6, 2003 Day +4
Mommy came by with lunch around 12:00. Taylor wanted no part of that. Mommy also brought a few new toys. They sparked his interest for a while. He is still all boy for he enjoyed crashing his airplanes and then laughed! We got him a clip board that opens and it has markers, glue, etc. in it. He has enjoyed learning how to hold the scissors and of course he likes the glue stick. Every time he see it he says "like Mel". He knows that Melanie has a clip board with stickers in it. Yes, our stickers are now kept in his clip board. His mouth is very sore, he has a huge mouth sore behind his right molars. He asks you to look at it with the doctors light every few minutes. They have given him some of the all famous magic mouth wash. He used to let us do that with no problem, we shall see if that still holds true. The nurse said we could also try some oragel to numb it. I think it has come to the time that he can not tolerate the mouth care any more. I hope this doesn't let it worsen. I fear that I am hurting it and making it worse rather than helping it, but at the same time I don't want to quit using it as it seemed to have helped so far. His heart rate has been in the 140's the last few days and it is now in the 120's so I guess the pain is dwindling some. He took a very good nap. He really needed it. He has a much better attitude when he is rested. That helps us all! Mommy was home, relaxing on the couch in her pj's when all of a sudden there was a tornado headed for her. Being the chicken she is she headed right back to the hospital. I found all the patients in the hall because of the tornado warning. Since Taylor is on contact precautions and has low counts he had to stay in his room. We just had to move him close to the door leading to the hall. He liked the change of pace and he enjoyed playing cars on his mat. He looks like a big boy laying in the floor propped up on his elbow. He has now finished his 8:00 meds and been weighed and had all vitals checked. It is time for him to start winding down and for mommy to venture back out into the weather towards home.
Last night was very uneventful, which is a good thing. Taylor slept soundly throughout the night. It is 10:39 AM right now, and Taylor is currently getting a unit of blood. Thanks to the person who took the time to donate blood, you are helping to save his life, and we are deeply appreciated. Taylor's mouth continues to look good, and I credit that to our diligence in keeping his daily mouth care as standard routine. He has a slight fever right now, and it took an act of Congress to get him to take the Tylenol. He only got about half of what he needed, but we finally gave up. He hasn't got up to play at all this morning. He is still having runny diapers, so the doctor has put him on contact precautions. It is pretty standard practice up here. I have to wear this special gown and gloves while I am in the room. It is not only for Taylor's protection, but for other children on this unit. If Taylor had a virus, and we carried that out into the hall, it could be deadly for other patients. They are trying to get a stool sample to test for a virus. I am hoping it is just all the medicine he is getting, and not c-diff. No one can enter the room without putting on a pair of gloves and these gowns. As you can see below from Taylor's counts, his hematacrit is down, so that is why he is getting blood right now.
PCV (hematacrit): 22.3
HGB (hemoglobin): 7.9
RBC (red blood cells): 2.67
WBC (white blood cells): .09 this is 9, not 900 or 9,000, just plain old 9.
April 5, 2003 Day +3
Taylor has improved somewhat in attitude throughout the day. I guess he has all the right in the world right now to have an attitude toward other people and nurses, God knows he has been through a lot the past few days. He has been less grumpy today, and even sat up a few times to play. This evening, after his bed bath, he sat in ca ca's lap and looked at his pictures on this website. He enjoyed seeing his gator and all the pictures of his family. He still seems to be in a little pain. His mouth looks really good right now, but he did bite down on his back cheek and it hurt him a little bit. He is still very congested, and they have given him some medicine to clear his head up a little. Thank goodness all of the tests have came back negative and it is just a stubborn cold. He is sleeping soundly right now at 9:20PM, but he was up all day except for a short nap during the day. I pray he sleeps sound tonight, and gets some much needed rest and healing.
Counts are going up!! There is nothing stopping them from going down again, but they look good today. Well, better than yesterday not good. He still hasn't eaten or drank, but he asks for things. It is good that he has some interest. His mouth is hurting. He actually asked for medicine at one point, but then tried to wash it out with a tissue when it hurt. He is having more and more poopy diapers. We hope that he doesn't get c-diff again or get a raw bottom. He has played a little this morning and he has enjoyed talking to Austin through the window. He has a new movie, Charlotte's Webb, he is watching it now. He likes pigs so maybe this will be a new favorite. He still looks pretty pitiful, but he isn't near as grumpy. Hopefully his counts will continue to go up and he will feel better soon. To go home he must have an ANC of 500 or over for three days in a row and no fever. It would also help if he would eat. An ANC is the absolute neutrophil count or infection fighting cells. He had a fever this morning, but it is down now. He also had another nose swab, we do not have results yet. His chest x-ray from yesterday was fine. Mommy is fixing to go and daddy will spend the rest of the weekend with Taylor.
Please pray for those counts to come up. GROW CELLS GROW!!! Pray this is successful and he never faces cancer again. Remember all our friends who are fighting this terrible disease. Remember Nathan's family, his funeral is today and I am sure they could use some prayers and kind words. www.caringbridge.com/tx/nathan
PCV (hematacrit): 31.1
HGB (hemoglobin): 10.9
RBC (red blood cells): 3.72
WBC (white blood cells): .06 this is 6, not 600 or 6,000, just plain old 6.
April 4, 2003 Day +2
4:30pm.... Taylor still feels rotten. He has slept most of the day. He is rubbing his head and Dr. Lucas said it probably itches due to the hair loss. He still has his twig4s, but they say he will lose it all. We shall see. Each mouth care is a little worse. He really hates it. We will continue to force it until he can no longer handle it. I hate the way he looks at me when I force him to do it, but I know that this pain is better than the alternative. He continues to choke up a lot of mucous. It is starting to be blood tinged due to his throat and mouth irritation. He was started on antibiotics because of the fever. That means diarrhea. Of course now he wants no part of the cream He had several visitors today. He was not very friendly to them. I guess he has that right. Guh is spending the night tonight and daddy will finish out the weekend. Mommy is going home.
Taylor slept fairly good last night. I on the other hand did not. He was in pain from his mouth breaking down. He continued to run a fever. He woke up several time choking on mucous. He can't stand for me to suction it out, so unfortunately mouth care is the best remedy for getting some of it out. He has slept most of the day. He wakes up occasionally to look around. He has no interest in food, drink, or people. He is gnawing his passies and has put holes in all of them. It isn't making him to mad since he doesn't want to suck it anyway. He was started on a continuous morphine drip this morning. We really have no indication of pain rather than heart rate. He tossed and turned and was whiney so they started it. He seems to be calmer and his heart rate is staying in the 140's. It is making him sleepy so he is kind of in and out of it. His temp went up to 100 this morning and now to 101, so they drew blood cultures. I do not really expect to see it grow anything, but this is routine. We were told yesterday that the next step was a fever, so we are still on schedule.
As for my night, it was lousy. I had elephants doing a cancer dance in my stomach. I was just anxious I guess. It was so hard to watching him be so pitiful. I knew these days were coming, but it was still hard. I was also concerned with him being in pain and all the mucous. I just couldn't get comfortable. Thank goodness he is sleeping a lot today and I have been able to catch up.
PCV (hematacrit): 25.8
HGB (hemoglobin): 9.3
RBC (red blood cells): 3.08
WBC (white blood cells): .04
Taylor's counts from yesterday were finally posted at midnight. In two hours they will draw today's:) I have also posted a list of what the normal range should be. Thought it might help it all make since.
Platelets 150,000-400,000 150,000-400,000
Hematocrit 39-49% 34-44%
Hemoglobin 14.0-17.2% 12.0-15.2%
RBC 4.40-5.80% 3.80-5.20%
WBC 4,000-11,000 4,000-11,000
potassium 3.5-5.2 3.5-5.2
April 3, 2003 Day +1
Today was long for Taylor. He is already starting to wear down. He has slept a lot more today than the past few days. He has a bit of a "tude" (attitude) as Wayne puts it. He has looked the other way every time someone comes in. The physical therapist and occupational therapist came by today. Taylor will not need either service. He is right where he should be and above on many levels. He may need physical therapy if we stay inpatient too long. We don't want him to get stiff or start losing muscle etc. He ate only a tootsie roll all day and drank very little if any. His mouth is starting to break down. Our nurse said tonight he will get to the point of not tolerating the mouth care because it burns so bad. He continues to vomit with mouth care, but at least he is getting a lot of that mucous out. He was started on a small dose of morphine for pain. His heart rate was elevated and that is an indication of pain and/or fever. He has both, temperature has been in the 99 range. That is actually not considered a fever in a cancer patient. A fever is over 101.4. He was started on IV nutrition today. It goes through his central line rather than a tube in his nose. This route was chosen so that he didn't have something irritating his throat or causing it to bleed. If he needs this for to long he will get a G tube put in his stomach. This keeps the gut working and is easier on the liver. So, as we speak he is getting his "meat and potatoes" through his line. Dr. Lucas said Taylor is right on schedule as far as mouth break down and counts dropping. Labs were drawn at 2:30am and we still do not know them. We have been asking all day, so when we find out we will pass them along. Dr. Lucas also said he expected Taylor to engraft/cells come up between days +15 and +22. That seems like forever away especially as I sit here and watch him feel so very bad. He is sleeping peacefully now. I hate to see him sleep the day away since I know how active he is, but I almost hope he does. At least then I know he is not in pain.
Please remember Taylor in your prayers. We know we have to endure bad days before we get to the good days. Please pray Taylor's bad days are few. Pray that this transplant is successful in "curing" his cancer. Please remember Nathan's family as they deal with their grief. Remember Morgan as she starts the next phase and she starts it so far from home. Austin finally had his surgery today. He did well, now let us all pray he eats and goes home soon. I know he and mom miss his sister, Meagan. Remember all our other friends that are battling this or some other illness. Please remember Jack Wishmeyer (I am sure I butchered that spelling), his wife Janette passed away this morning after battling cancer.
I want to thank each and every one of you who come to this sight and check on us all and pray for us. This is a very therapeutic way for us to deal with this and get things off our minds. It is also so helpful in keeping you all informed. I know we couldn't have gotten to this day without all of you and your prayers. Keep them coming because they are being heard. We are seeing and feeling the power of prayer everyday in Taylor.
Platelets: 22,000 Taylor received platelets today.
PCV (hematacrit): 27.1
HGB (hemoglobin): 9.6
RBC (red blood cells): 3.24
WBC (white blood cells): .19
April 2, 2003 Day 0 TRANSPLANT DAY!
Taylor's stem cells arrived at the same time daddy did to the hospital. Daddy rode up the elevator with them (3:05PM). They came all packed in a blue nitrogen tube. It was smoking like something out of the movies. They opened it up and placed it in water to thaw it out. It only took a few minutes to thaw. He got two bags of stem cells infused into him. It took from 3:35 until 3: 55. It is amazing that in 20 short minutes he received a life saving procedure. They gave us the tags off of the bags and we also kept one bag. It was very anti-climatic, but very emotional. Neither one of us cried, but the nurse did. Taylor slept through it. Go figure! It really does smell exactly like cream corn. It is fairly strong in the room, but near him is awful. If you hug him it just billows out his ears. From here we wait until they engraft and counts come back up. He is doing fine. He has not been sick from the preservatives in the stem cells.
As for the rest of the day. Miss Jennifer came to play again. Today they did some art. Taylor decided to categorize the animal shapes. He first did it by animal and then by color. He had a blast playing. It is good exercise too. He doesn't move much but it does him good to get out of the bed and on the mat for a while. He has been yelling "eat" all day. He hasn't eaten everything he begged for, but at least he wants to try. Mouth care is getting worse every time, but we are still forcing it. His rash is looking better as is the ear. The runny nose and cough are still the same, but the dr. doesn't seem to be concerned.
Thank you all who have followed his story this far. All the prayers are being heard, he is doing wonderfully. Please continue to pray, he still has a long way to go. Pictures from transplant can be found here.
PCV (hematacrit): 29
HGB (hemoglobin): 10.2
RBC (red blood cells): 3.41
WBC (white blood cells): 0.32
Today is the day. This morning has been like any other. Dr. Lucas came in and said he looked good. Other than the sunburn like rash, he is good. It is very itchy. He loves to have the cream and lotion rubbed on him. His counts are dropping as expected and still no mouth sores. (knock on wood) He Is still eating. He ate a good many crackers last night and woke up begging for biscuits. He is eating and playing cars now. He has no idea that in a few short hours he will receive new life. The transplant, contrary to popular belief, is not an operation. It will be done like any other blood transfusion. It will take any where from a few minutes to an hour to complete. The buzz around here is that it smells like cream corn or raw hamburger meat. He will smell of that lovely odor for a while. We shall see soon what it really smells like. He continues to "allow" me to do mouth care even though he hates it. I think he knows that it is helping because he holds his mouth open and sticks out his tongue even though it is torture for him and causes him to vomit. He was very congested when he woke up, but not now that we have done mouth care:D
Please remember Taylor in your prayers as he starts the healing process and pray we never see this monster rear its ugly head again. Please remember Nathan's family in your prayers. It is with a heavy heart that I report to you that he went to be with Jesus yesterday. I know his suffering has ended, but his family is starting a new phase and could use your thoughts and prayers as well as kind words. www.caringbridge.com/tx/nathan
April 1, 2003 Day -1
Today has been busy. Well, I say busy, it is the most excitement we have had in a while. We woke up early after a good nights sleep. No vomiting and no dopamine. His blood pressure did fine. He did get woke up several times to change the sheets because he is wetting the bed still. We changed him from a size 4 pamper to a size 3. I was sad because he should be going up not down. It didn't help. He is to skinny for the 4 and it leaks out the sides, but the 3 he soaks to fast. He needs a new diaper every 45 minutes. He didn't care to much for breakfast, he took a few bites of biscuit and one bite of applesauce. When it was time to do mouth care he begged for applesauce and ate it. I am glad he ate, but he is sneaky. He knows I will wait a while after he eats so he doesn't throw it all up. We did wait about 45 minutes, but he threw it up anyway. The poops have settled in. He has had about 7 today. His bottom is looking okay, but it is pink. His groin area is very itchy and red. We have some cream for it. It must really feel good because he lays there, spread eagle, saying "more". He is only on fluid today and an occasional med for this and that. He still gets ear drops, but the ear continues to look better. His nose swab was negative and he is getting some Zertec to dry it up. He is getting rid of a lot when he vomits. I told him it is easier to blow it out!
Dr. Lucas came on today. He rounds earlier than Dr. Sande. Thankfully I was awake enough to listen. He said he still looks good and no signs of mouth sores. He was glad to see the bp had maintained on it's own throughout the night. He said the transplant will be mid to later afternoon tomorrow. We are guessing around three. Please remember Taylor in prayers then.
Guh (that is what Taylor is calling my mom these days) came by and played a few minutes. Mrs. Jennifer and Trisha, child life specialists, came and played for a while. They set on the mat and played with play dough. He had a blast. Papa stopped by too. They continued with the play dough and cars. Taylor ate a few bits of a grilled cheese, but asked for sliced cheese. Thank goodness the nurses keep some up here since we didn't have any. He ate 3 pieces and it stayed down during mouth care. We go him up and disconnected everything and walked around the room and danced. We need him to get some exercise so that he doesn't lose to much muscle laying in the bed all the time. He walked a little off balance, but it has been a week since he walked. He enjoyed looking out the window at the nurses. He played a game of peek a boo with Tina, Austin's mom. Taylor is now fast asleep in his tent. We have the go go blanket draped over the bed. He is hiding from me.
Remember Austin as he again had to put off surgery until Thursday. Lets all pray that he does have it this time and that he and mom don't go crazy until then. www.caringbridge.com/al/austin Remember Alexis who is home and doing great!! www.caringbridge.com/al/alexislindsey Please remember Nathan as he continues to fight. www.caringbridge.com/tx/nathan
Pease pray that tomorrows transplant is successful and we continue on with no complications. Pray his cells engraft and grow soon and we never fight this monster again.
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