History

Friday, April 29, 2005 9:49 PM CDT

Hey everyone. We are back at home. We actually came home last friday. I just haven't had a chance to update. We had to go back for a check up on tuesday an trying to put my house back together. Also Austi's birthday is tommorrow. One of my friend's an myself have been trying to raise enough money to get him one of those John Deere Gator powerwheels. That is all he has said he wanted an they cost about $300.00. We have been so rushed an not knowing what is going to happen that we have postponed having his party until next saturday. We are not going to be able to go to the Rainbow Walk because his immune system is still not were it needs to be to be around that many people. So we are going to release balloons at his party an have our own walk. But if you were going to donate to the walk please still do. They need all the help an they do great deeds. They just put Austin an Me up in a motel for two weeks. So your money want be misused. Also I would like to send Happy Birthday wishes to New Jersy to Miss Kylie Jae. SOrry I am late. The pictures your mom sent were great. The infection in Austin's lines is gone. They are going to remove his line on wednesday an put in another port. We have to be in Durham on Tuesday morning at 9:00 an we are going to stay the night. As long as everything goes ok we will be back home on wednesday night.
Onto a good samaritan note. There are still kind people left. On friday when we got ready to leave the hospital there was a nice woman who offered to help us load up all of our stuff. She crawled on the back of my truck , an helped pack an bag our stuff up. she didn't work for the motel or anything, she was there with her sister an brother inlaw. I give her Austin's web address, so if you are looking. I just want to say thank you. You have a truly huge heart an a great soul. We have met so many wonderful people during this whole roller coaster ride. I would give anything to be able to tell each an everyone of you thank you, but there is just to many. So I will once again say thank you to everyone. You have made so many difficult processes easier. Well I believe I will go to sleep now. So I can get up again in the morning an start all over. GOOD NIGHT! Check out photo's. I actually had time to put on new ones.

Friday, April 15, 2005 5:17 PM CDT

Hello everyone. I am sorry to report that I am writing this entry from inside the confines of the transplant unit once again. Austin woke up Monday with a severe sore throat. We came back to Durham, and they started an antibiotic through outpatient an drawed a bunch of labs. we stayed monday night in a motel. On tuesday we came back to the hospital, an were let go home with everyone thinkin it was a viral infection. No biggie RIGHT!!!!!
Forty five minutes after I get home to Pilot Mountain on tuesday night, the doctor call an they have a positive culture out of Austin's white line for a bacterial infection. So we get up an came back on wednesday prepared to stay for a few days. On friday he calls the motel an we have a secon positive cuolture, so we are back in the unit at least til monday for observation, an alot of Iv antibiotics. On monday we will decide rather or not to go in for surgery to remove the line, hopefully not any sooner. So please restart the prayer cirlces the chants the screamin whatever you did the last time because we need it again. Hello to New JErsey hope all is well with my other angel. Hugs an kisses!!!!!!!!!!!!!1 Austin an Tammy. Room 5215 919-681-5215

Thursday, March 31, 2005 5:36 PM CST

Hello everyone. I hope everyone is doing well. Before I get started, I just want to send a special hello an prayer to New Jersey. You have all heard me speak of Kylie Jae well she is having some serious health issues. I would like to ask that all of you say a special prayer for her and her family. Please keep her in your thoughts. She is an exceptioanl little girl. She has fought so much in her young life an she just keeps fighting. She has been an inspiration t me since the first time her mom emailed me. So just please send some extra love her way. If you would like to see her and learn a little about her, she also has a webpage it is www.caringbridge.org/nj/kyliejae
Also all the cute new picture an the help with the Rainbow of heroes walk on Austin's page, I owe that to Kylie's mommy. She is the computer genious. If you see her webpage you will understand.
Austin is doing great. We got a small pass an we didn't have to go to the hospital tommorrow. We have to go on Tuesday. Austin's doctor is off tommorrow with hsi kids on spring break. We have had a pretty good spring break here. If we just had a little bit better weather. One day it rains, one day the wind will blow you away. It's kinda hard to get out an play. Austin has got to go out some this week an ride his motorcycle. So he has been in a pretty good mood. We are still trying to come down on the steroids. As soon as we can get off the steroid an his immune studies come back OK, they are going to set up to take his line out. They will have to put a port back in for a while. He will still have to have blood work done on a regular medicine an also some IV meds once a month. So in the interest of getting stuck all the time, they will put a port back in so at last we can put emla cream on it. We did this for a year an a half before the transplant so we know the drill. I hope everyone had a great Easter. We had a very good one. We couldn't go out an hide Easter eggs because it was raining, but we still had fun decorating them. The kids all seemed very happy with their goodies. Amy is wanting to type something now, so I guess I will let you all go, an find her a typing page.
Please be sure to sign in on the guestbook, when you check in. It doesn't matter how many times. Also please read about our Rainbow of Heroes walk. We need all the help we can get. Thank you an Good Night.
Thank You Heather for the Webpage spruce up.

Friday, March 18, 2005 4:52 PM CST

Hello everyone. Haven't checked in for a while. Computer had a virus. Guess it was jealous, because everyone else in the house had one. Austin had his six month studies done on Tuesday. We got back his donor cell study today, and he is still 100 percent donor cells. We are still waiting on his immune studies. They will be gone for another couple of weeks. Everything esle they say still looks good. His counts are all still staying normal. He did take this cold bug that is going around, but so far it hasn't cause any damage. They tried one antibiotic, and now we are on another one, because the first one didn't knock it out. So just keep up the good thoughts.

We are starting on another project. On May 7th the hospital (Duke hospital) will hold a Rainbow of Heroes walk to honor everyone who has been transplanted. You walk in teams and raise money for the Family Support program for the Bone Marrow Unit. It is a great program, trust me I know that were there for us alot. They supply phone cards, meals, toys, an several other kinds of assistance. They have several members on there staff, and they are always coming in an out making sure you have everything you need, or if you just need to talk to someone. They supply breakfast two mornings a week. They do pizza hut on wednesdays at dinner. An they do suppers or set up for some of the church's or other groups to come in. Well I have rambled enough on this subject. They are just amazing people. Austin's team is going to be Austin the Builders. IF you would like to come an walk with us or contribute to Austin's team, just contact me at
dooderpee@excite.com. IF you would like to see the past walk an get anymore information go to www.rainbowofheroeswalk.org .
Austin wants me to tell everyone hello, and to pleas email him. He isn't getting as many emails as he use to. There is just one every now an again. So please email every chance you get it really cheers him up.
Thank you to all for everything. Love the Walls

Thursday, February 24, 2005 9:39 PM CST

Hello everyone. I am up trying to get everything ready for another trip to Duke. Try to make sure all my work is done so I don't miss out an get behind. Austin is feeling better. Which is amazing since everyone around us, including all of us are sick. we finally got to do Christmas with the rest of our family weekend before last. Amy had her birthday party on Sunday, but Austin had to stay with Nana so he wouldn't be around everyone. I talked to a really close friend on Friday night, an she got to unload alot of stuff on me. It made me feel so good to be there for her, even though we are miles an miles apart. I would love to sit here an rant and rave, but I realize that no matter how tired an how ready I am just to have some down time. I have everything going pretty good right now. I got my son given back to me,and I have loads of family and friends for support who love us dearly. To that friend if you are reading this. I know we have never met face to face, but just know that I love you, and if you ever need me just let me know. Thank you for all the support you have given to me and Austin. You are an inspiration to all you come in contact with.
Thank you to all the new people checking out Austin's website. Please keep in touch an pass his website on. We love you all. Thank you.

Wednesday, February 16, 2005 10:11 PM CST

Hello everyone. Austin has been sick with this nasty stomach bug going around. We had to go to the hospital last tuesday and get I.V. fluids and meds. He got really dehydrated. He was scary. There is so much going around. I am scared everytime we go outside that he will catch some bug. He has come so far and I get so scared that something will happen. He gets ill at the drop of a hat. He has really bad crying spells. I know this comes from the meds, but it just gets to me sometimes. We were somewhere the other day, and a bunch of people just kept stareing at him. He looked up said he wanted to go, and started to cry. When we got outside he wanted to know why everybody wants to stare at him like his strange. I blowed it off, and told him it was because they had never seen anyone that handsome. I had dealt or tried to deal with every other aspect of this, but I didn't prepare myself for this. He can't understand why he can't go places, and why people don't come visit like they use to. I just don't know how to explain to a three year old and make him understand. There are so many people who ask about him and want to see him, but because of the illness going around they can't. But to a three year old that doesn't help. So please post emails to him, as many as you want that really cheers him up. I apologize Shoudn't have ranted to all of you. Just needed to get somethings off my chest. At least you can always scroll down or close the page. I am going to bed now. YOu all have a good night. We love you all. I have posted new pictures in view photos.

Wednesday, February 2, 2005 8:36 PM CST

Hello everyone. I believe everything is starting to get back to a somewhat normal pace. We have finally unpacked everything from Durham. I have went back through the house and recleaned it again from top to bottom. I have probably hauled off three loads of junk. I guess you could say I was a packrat.
I got use to dealing with just one child when we were in Durham, and now I am back to all three. I kinda had to readjust. I have to make sure I get Austin's bath, his line care, and all of his dressing changes done while the others are at school. It makes it alot easier when it is just me and him. Don't worry about who's got there mask on and who doesn't. Who will oopen the door and walk in the room while his dressing is off. Unfortunately that doesn't give us alot of rest time. Or me any housework time. My mom has been a great help. She comes during the day when she can an helps me get stuff done. God love em' my other two are great, but they are trying to catch up on so much lost time. It gets kinda hard, because I still have to give Austin so much extra attention.
We are still going back an forth to Durham. We go once a week on fridays. Everything (knock on wood) is still going good. His potassium and phospherous was low week before, so they put him on extra medicine for that. Which in turn caused his diarhea (spelling) to be worse, so this past friday they wouldn't lower his steroid they pushed it back up a little. On the plus side we did get to come off of one blood pressure med, and his IIG levels were high enough that we didn't have to get IVIg in the clinic. An we don't have to this friday. Just get his blood counts, and see the doctor. Still an all day process. The nurses are still wonderful, they make after him even more now because we are only coming once a week. He got this reindeer at christmas, that has a full rack on it and each point had a jingle bell on it. When you mash it's paw it sings jingle bells and dances. He named it after one of his favorite nurses, her name is NADIA. Well he took it with him on friday to show her. It tickled the pee out of him to see how happy it made her. He thinks alot of everyone down there. It's hard to imagine a child that gets excited about going to the doctor, but I have one. An he is almost always happy, and to me that is so much, considering how much he has been through.
I just want to thank all of you once again for all your prayers and thoughts. Austin is proof to me that there is power in prayer. Cuz for awhile I stopped believing, but I found my way back. Thank you all for everything.
Love all of the Wall family.

Sunday, January 16, 2005 10:39 AM CST

HEY EVERYBODY. GUESS WHAT? WE TURNED IN OUR KEY TO THE LITTLE WHITE HOUSE.. WE ARE HOME TO STAY. WE HAVE TO GO BACK FOR WEEKLY VISITS, BUT WE ARE HOME. I WILL WRITE MORE AFTER WHILE.

Sunday, January 9, 2005 12:37 AM CST

Hello everyone. As you all know we were supposed to come back home on Monday for good. Well it didn't work out that way. Austin had a drop in his cyclosporin levels which allowed time for a small infection known as graft versus host. Which just means that his body is trying to fight against his new cells. It not a serious case. But because of this he had to go back on more steroids and antibiotics. So, we have to spend more time in Durham. They have to be able to keep a close check on him so that it doesnt't turn into something else. So on the upside they let us come home for the weekend. We are going to leave back out again tommorrow. Not alot to report. I will hopefully be back home again next weekend and I will hopefully have better news. Love you all. Have a Great week.

Tuesday, January 4, 2005 11:47 PM CST

Hello everyone. It has been a while. I have alot to catch you up on. When we went back down to do out hundred day studies Austin got really sick. He had a severe reaction to the reducing of his steroids. He had to go back on antibiotics and more steroids. So they would not let us come home for christmas, so we spent christmas in Durham. Wasn't home, but we made the most of it. My parents spent christmas eve with us and Chris's mom and brother spent christmas day with us. The kids had got to come down on the 22nd and stayed with me through the week after christmas. We got to come home on New Years Eve and spend the weekend at home. We went back on Monday hoping to be released, but Austin has developed a rash. Which they think is graft versus host. It just one of those things that can happen when you have an unrelated cord blood transplant. He had to go back on another steroid by I.V. and they put him on a light antibiotic. So we will now be staying for another couple of weeks. I had to come back home for the night to bring my dad and the kids back home. They rode down with me on Monday. So I will leaving again in the morning. Oh yeah on Monday the 27th Austin had his groin line removed. Other than that everything is still going really well. We are still at the little white house and everyone is still wonderful. They are going to let us come back home this weekend for a visit. So it won't be that bad this time.
On another note I know alot of you have heard me talk abouth and brag about a little girl by the name of Kylie Jae, well I want all of you to start putting in extra prayers and thoughts for her, because she has gotten her third chance at a transplant. IT will be taken place in March. SO everyone send your good thoughts and prayers to New Jersey to Miss Kylie Jae for a speedy and SIMPLE transplant, cause she is egaged to Elmo and really needs to be preparing f0r her wedding instead of layin around in the hospital. GOOD LUCK KYLIE JAE!!!!!!!!! WE ALL LOVE YOU VERY MUCH. AUSTIN WISHES YOU ALL OF HIS GOOD LUCK!!!!!!!!!!!!!!!!!!!!!!!!! Thank you to all of you who are still checking out our web page. Austin loves the messages. I will update again this weekend. Love you all and talk to you soon. Good Night

Saturday, December 11, 2004 3:47 PM CST

Hello everyone. This will just be a short message. We saw the Hendricks pit crew for kids this morning. All of the kids got lots of toys. They were all excited. My oldest is still speechless. ONe of the guys off of Jeff Gordon's crew give him a hat, then all of them signed it. These guys and girls are wonderful. Hello Courtney. That's from Austin. By the way I'm sending this from home and Austin is with him. We came in today for a visit. We go back Monday. As long as everything goes well we will be back next weekend for good. Love you all. Send messages, Austin is haveing a blast playing catch up.

Friday, December 3, 2004 10:18 PM CST

Hello everyone. I apologize for being gone so long. It has been a very busy time. What little time I get to spend at home. I have had to spend cleaning. We got more great news today. They took Austin off of all of his I.V. meds at home, and took away two meds, but they switched the two I.V. meds to mouth meds. They say he can come home next weekend to visit, and then the following weekend he can come home for good. We have to go back on the 27th to get his groin line removed. Everything else is going great though. It has been seven weeks since he had to have a blood transfusion, and a little over a month since he got platelets. His counts today were hemoglobin 10.6, platlets 93, and white blood cells was 9.6. His doctors just seem to be amazed. They can't believe how great he is doing. I am home this weekend to finish cleaning, and to steamclean the carpets. So I will try to update again, and put up some new pictures. Love Austin and Tammy

Monday, November 1, 2004 11:34 PM CST

Hey everyone. I want get to update the page for a few days so just bare with me, and I will be back. I am going back to Durham tommorrow. I haven't been able to replace my computer yet. Can't find one that I can afford. SO I will probably be out of touch until I come home again. I talked to my mom today, and all of Austin's counts are still doing great. He actually doesn't have to go to clinic tommorrow. We go monday wednesday and friday of this week. We are at day +46, and all is well. They express to me every day that we still have a long way to go, so we are just taking it one day at a time. His 100th day is christmas day. Since he was and unrelated cord blood he has to stay near the hospital for the first 100 days. So our thanksgiving and christmas will probably be in Durham, but everyone needs a change from time to time. The kids are a little worried about Santa finding us, but i'm sure they will be satisfied. We always find a way. I want to thank you all for your thoughts and prayers that have helped make this Thanksgiving and Christmas so special for all of us. For a special little girl in New Jersey I will be doing what ever it takes to get to Camp Sunshine with Austin. And since I got my Christmas wish for Austin, I am holding out for one more wish for you. You will never know how much you and your mom have meant to me through all of this. We may never get to meet, but I feel like we have been friends forever. Good Night to all. To all the other DBAers, good night and good days to you all. Keep sending your prayers and your emails and I will do the same. Love Tammy and Austin.

Friday, October 29, 2004 8:39 PM CDT

Hello everyone. Sorry I have been gone for so long. We have been busy and my computer crashed. So I haven't been able to get to a computer to update. We are on day 43 his counts are all still up. He hasn't had a transfusion in three weeks tommorrow and his counts today was 12.2. They have decreased alot of his meds, he is not on pain meds anymore, and he got off tpn last friday. We went a whole five days without getting platletts. Dr. Parihk told us for all purposes Austin acts as if he got a sibling match instead of an unrelated cord blood match. He got to go trick or treating in his costume today at the hospital. We still have to stay for our 100 days, but that's okay because everything is going great for now. There are still those possibilities of problems, but we just look at the positive, and take it one day at a time. So for all the other dba patients out there, please don't ever give up. We are not totally out of the weeds yet, but we are peeking through the trees. I am at home this weekend to trick or treat with the other kids, so I will get some new pictures put up, and update you some more.

Thank you again for all of your support. Love Tammy and Austin.

Thursday, October 14, 2004 5:16 PM CDT

Hello everyone. Hope you are al doing geat. We ar kinda tired, but doing good. We checked out of the hospital yesterday. Moved back in to the little white house. I have been given all my training. We had our first clinic day today. His potassium was a little high and he had to have platelets. Everything is still on track today, white blood cell count is 9.9. An also hope you are setting down, or holding on to something. We got the result back from the other test, and he is 100% female donor cells. For anyone who is not up to date, we want this. This is great news. It means everything was a success. Everyone can do the happy dance an scream an yell out loud. I feel like a 300 pound elephant has been lifted off my chest. Thank you all for your prayers. Keep checking in, I will still be updating his website daily. Love you all. Tammy and Austin

Tuesday, October 12, 2004 10:45 AM CDT

Hello all. I got back to the hospital yesterday to get great news. I had been in the room about 5 minutes when everyone came in to start training me to take care of Austin at the white house. We get to leave and go there tommorrow. YAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHhhh
I am excited, but really nervous. His count this morning was 8.0. They have sent off the other test, and we will know that answer by thursday or friday. I will still be updating his webpage so keep logging on. I have put a new address on the homepage for any of you needing an address to send cards and things. We have been packing up his room, an training this morning. Well I have he just sits there an thinks I have lost my mind. He got fourteen feet for his walk around the hospital sunday. They also took his picture holding his string of feet, and are going to have it put on a t-shirt for him, for getting fifty feet. We now have seventy some feet. Well I have to go. More packing and training. I will write later and give you more info. Love Tammy and Austin

Sunday, October 10, 2004 7:43 PM CDT

Hello everyone. I am still at home in Pilot Mountain, I will be leaving in the morning. I talked to mom and dad a couple of times today. Austins count is 4.7 today. They drawed blood this morning for the other test. It should be back by thursday. They say if it is ok he can probably leave by this weekend. He got a free pass to leave the hospital for a short time today. He got to be out about 3 hours. Him and my parents walked and he rolled in the stroller all the way around the hospital. That's about 5 miles. So so far so good.. Everybody keep praying an we will get there day by day. Love you all, and thanks for all the prayers and thoughts. If anyone wants to send card you can send them to the little white house. The address is 2634 kirk road, Durham, NC 27705. I will be back at the hospital tommorrow and I will report from there.

Saturday, October 9, 2004 7:03 PM CDT

Hello everyone. I am sending you this email from my home in Pilot Mountain. I came home to spend the weekend with my other two kids. My mom and dad stayed with Austin. When I called this morning his WBC count was 4.2. He was still doing amazingly. The nurses seem to think that as long as all of his tests go well, he may get to go back to the little white house as soon as next week. I am really excited, but still in away scared to get to excited. I don't want to jinx anything. When I talked to dad a little bit ago, he said that Austin had been up walking, riding the tricycle, and playing in his room. His best buddy Emily was over her cold so she had got to come and visit yesterday and today. So he was happy. Thank you all for the prayers. Please continue and maybe we will be back in our real home in Pilot Mountain sooner than we think. Love you all.

Friday, October 8, 2004 10:07 AM CDT

Hello everyone. Just wanted to let you know what his counts were this morning. He is 2.9 today. I guess reducing the meds didn't hurt. HUh! I am taking a short break away from the hosptital for a couple of days. So I may not be writing. If not I will be back monday night. I'm going home to see my family. My mom and dad will be staying with Austin. So I will write again as soon as possible. Love Austin and Tammy

Thursday, October 7, 2004 10:23 PM CDT

Hello. I'm back. We have had another good day. He has been in a great mood. Laughing, talking, and just feeling better. He went to his activity today with Mary Margaret. Then he walked for a while. Them him and Megan went to the playroom and filled up his paint cups so he could paint some more. He got to be off his iv for about three hours today. Christine bought by his footprints, and his thirty day bead. We got our number 50 foot today. His legs got to bother him pretty bad, so we got Andre to hook him back up. He layed down and took a nap for awhile. Then he got back up and ate some suppper, and we played for awhile. He checked out a Thoma the Train book to work on his christmas list. He checked out his website, then we took night meds, and done mouthcare. He is wearing his bandaid pajama's. He has showed off for all the nurses, and is ready to go to sleep again. You know how tiring flirting can be. Well he is off to sleep, so I think I will be to. I will let you know how the counts are in the morning. They had to split his GCSF into two doses, because it was hurting his legs, so his counts might not be as high in the morning. This medicine is a growth factor that helps the white cells grow. Sometimes it can cause there bone pain to be worse, and unfortunately it did in Austin. So he gets the same amount in a 24 hour period, they just give half in the morning and half at night. So will see in the morning. He seems so determined now, maybe it won't mattr. See you all tommorrow. Love Austin(aka Romeo) and Tammy

Thursday, October 7, 2004 10:25 AM CDT

Hello again. I think I forgot to put it in yesterday's journal, his white blood cell count was 1.5. Sorry about that. Today it is 2.2. So we are getting there. His ANC was above 500 again today, so he is considered engrafted. Now we just wait to see if it is his cells or donor cells. Pray for donor cells. They are suppose to do the test sometime next week. He is a little tired this morning, but is still up and moving. We have already eat, and took our medicine, and done mouthcare. Miss Lexie is in with him now. She comes once a day Monday through Friday. He thinks she is totally cool. He also likes the fact that his teacher comes to his room. That's one of those my teacher is better than yours to Amy and Christopher. Didn't get to see the doctors yesterday. So I will know more about all of the testing today. I will let you go for now, and I will update you on the rest of the day tonight. Love US

Wednesday, October 6, 2004 8:47 PM CDT

Hello all. Hope you are all doing ok. We have had a great day. Austin has felt really good today. We got up a little late, but that just gave him an extra boost. We started off by doing our morning chores, taking meds, mouth care, weighing, and washing up. Then he ate some of his breakfast. He sat in the chair while me and Nikki changed his bed. He then had his session with Lexie, his preschool teacher. He kinda relaxed for a little while after that and watched Bob the Builder. Then at two we went down to the lounge and played bingo. He won a little lego thingy. Then he played with some ink stamps. He started getting tired an wanted to go back to his room. Then when we got back to the room, he wanted to go paint on the easel outside his room. So we did that and then we walked 5 laps. Then he played with the ink stampers, and with playdoh for awhile in the room. Around 5:30 it was time to do his line changes so they unhooked him from his pole, and we went again. He painted in the hallway, and walked 5 laps and rode 2 laps on the trycycle. Then we painted again. Then it was time to be hooked back up. He was getting tired then, and so we started our nightly chores. We did his mouthcare, then took his medicine, and he now has two medicines to take by mouth. He has his medicine to keep his liver cleaned out, and some more blood pressure medicine. He wasn't happy about that but he took it. He was itching a little from his cells growing so they ordered some medicine for his face and body. Also one of the drugs they give him through iv to help the cells grow, was causing him severe leg pains. So they have it ordered now to split it an give it to him twice a day instead of once a night. His TPN(nutrition in a bag) is being cut back, and he only has to be on it 18 hours a day instead of 24. Which means he can start being off his pole longer at a time. Also his heparin drip only has eight more days, then we lose it to. That was because of the chemo causing bleeding problems. He went on off to sleep around 8:30. Aside from our first couple of days here this is our best day yet. An today makes it exactly one month since we checked in. What a month. Talk about a roller coaster ride. Thank you for your thoughts and prayers. As a sweet little girl named Kylie told me once there is power in numbers. An we have proved it. Good night Kylie and all your brothers and sisters. Good night to all. Love Austin And Tammy

Tuesday, October 5, 2004 3:25 PM CDT

If you are just now checking in, then go back and read the previous entry first. You have to, don't ask questions. Just do it now.

The doctors just made there rounds, and they are very happy about his counts. If he continues this week then they are going to go ahead next week and do the test to see if it is donor cells or his cells. Also they will start reducing some of his iv meds. Yes, I am still doing the HAPPY DANCE. I don't think I have stopped smiling all day. They say he is doing exceptionally well, and seen really confident that everything is going great. I'm not a doctor so I will take there word for it, because they are a great bunch of doctors, and people. They have all been so wonderful, an supportive. It makes the tough decision we made so much easier. Austin got all excited when I showed him all of his emails. So keep praying, and emailing. Love Tammy and Austin day+19 unrelated cord blood transplant.

Tuesday, October 5, 2004 6:11 AM CDT

HELLO EVERYONE. WANT TAKE UP MUCH TIME. JUST WANTED TO LET YOU KNOW AUSTIN'S WHITE BLOOD CELL COUNT IS 1.1 (NORMAL IS 3.8-14) HIS ANC WHICH NEEDS TO BE 500 OR ABOVE FOR THREE DAYS TO BE CONSIDERED ENGRAFTED IS 814. SO KEEP PRAYING, AND HOPEFULLY WE ARE ON OUR WAY. I WILL WRITE AGAIN LATER, TO LET YOU KNOW HOW OUR DAY WENT. SO FOR NOW EVERYBODY DO THE HAPPY DANCE. LOVE TAMMY AND AUSTIN

Monday, October 4, 2004 3:35 PM CDT

Guess what? We are at .5 today. We can still have some ups and downs with his counts, but at least we are up for today. He is feeling pretty rotten. As usual they say that's a good sign. He got to be unhooked for about an hour today. We went to childlife an played with playdoh. He has really gotten into playing with playdoh and rubber ink stamps and stickers and paint. Those are the things he really likes to play with now. along with his Bob the Builder. Don't forget his Bob. Grandma sent him a Bob pillow case with his name on it, and a new movie today. That got a smile out of him. When he wakes back up I have it all washed and ready to go on his pillow. He also has gotten in to making his own decorations out of construction paper, and those little foam shapes. Since we have been stuck in here, he has really gotten into the art stuff. He loves it. Just to see what he can make next. He has had alot of down days, but just to see his face lite up when he sees what he has made is so exciting. That may sound silly to some of you. But if you ever have to make a decision like we have made and watch what you can't fix, and don't know what's coming next, and not knowing what the end will bring you will enjoy every smile, and laugh. So from one parent to another: don't take it for granted, enjoy every moment, watch every little thing, and spend every moment possible with them. You can miss so much, in such a very short time. Please look over me, I just have alot of time to think down here. Thank you all again for your thoughts and prayers. I will never be able to tell any of you how much you have meant to our family.

Sunday, October 3, 2004 7:50 PM CDT

Hello all. How are you? I hope everyone is doing fine today. Austins counts are still at .02 today. Again that's ok. He got to spend a little bit more time with his daddy and nana this morning, before they had tgo back home. He has felt pretty good today, and we have actually got him to eat some today. They told us if we could get him to eat normally, that he could come off of his TPN and he could spend more time off of his iv pole. Maybe even go on visits off the unit. So we are not rushing it, but we are going to try a little more each day. We had a really special family come to the unit today. There son was transplanted here six years ago the 14th. They come back every year on the 3rd and decorate the unit for halloween. They bring each patient a bag full of decorations, and they bring a meal for the parents. They were awesome, they were so nice and great with the kids. They bought such great stuff for the kids. Austin actually got unhooked so he could go out in the hall and decorate his windows. He walked a couple of laps just to check out the decorations. Then we finished decorating his room. Although he doesn't think he has enough decorations and wants more. He ate a little luch and then took a nap. When he woke up he got to be unhooked again, and he actually walked six laps. He has checked out his website several times today. He has made some halloween decorations of his own, and ate some more supper, and now is asleep again. So I believe I will go for now, and get some rest while he is resting. I will write again tomorrow. Keep the prayers and thoughts coming, and the emails. Love Austin and Tammy

Saturday, October 2, 2004 9:22 PM CDT

Hello everybody. Sorry I haven't written. The last couple of days have been kinda bad. He has alot of the bone pain that they said would start. The pca pump doesn't really do anything for that, and the tylenol he is still not taken. So we just kinda work through it. His counts were down to .02 on friday an still there today. But they say that is a good sign. Everything you would think is a bad thing is a good thing. He has been really tired and sleepy. So hopefully we will have some cells growing next week. I again want to thank everyone for your thoughts and prayers. An a specail thanks to the rescue squad association (scars) for the books and card you sent. Thanks to everyone for the emails. Keep them coming because this is an excuse to get him out of bed somedays so he can see who all has wrote to him. I will write more tommorrow. Love Austin and Tammy

Friday, October 1, 2004 0:55 AM CDT

Hello again. I hope everyone is doing well. Austin is still doing ok. He was really tired today. He got his halloween costume in the mail from grandma, so that cheered him up. We got it washed and he went and showed it off out in the hall. People were coming from everywhere to take pictures. I walked them, and the he walked to his childlife activity. He came back and played doctor for a while, then layed down. He slept til about 10:00 then he got up sick and complaining that his legs were hurting. Which all of this is good signs. They say the fact that he slept alot and was real tired hopefully means cells are growin. His counts were down a little today. His was back down to .03, but that's ok. It is to be expected, but it did kinda get to me when I saw his lab report. Maybe they are going to make up for it tommorrow. He is doing amazingly well though to hear the doctors and nurses talk about it. He is trying so hard to still do stuff even though he feels bad. Our day was rather uneventful. So keep your fingers crossed for more cells tommorrow. Talk to you again soon. Love Austin and me.

Thursday, September 29 11:32 p.m.

Hey everyone. How are you all doing? Our day was so so. He wasn't feeling as good today as he was yesterday. He got out of his room a little. We rode in the wagon and went to Bingo (he won a hotwheel racing motorcycle thingy). Late yesterday we went out and rode in the wagon, done two laps on the tricycle, and painted as you see on our home page. He had to have platelets early this morning. When his counts came back this morning his white blood cell count was .04. He didn't get up til late this morning, and I new he wasn't feeling good. He tried though to get up and go. They say that we wanted officially know that he has engrafted until his anc count is 500 or above for three days, and they are going to start testing for that tommorrow. They want test to see if it is his cells or his donor cells until around day 30. Even if the anc shows he has engrafted it will be a while before we know if it was complete or partial. So we are looking atleast three more weeks to a month in the hospital. An then we go back to out little white house donated to us by Guess Road Baptist Church. Austin has really been good about the whole in the hospital thing. He will ask from time to time about going home, and so far we just tell him in a few days. He accepts that an goes on until the next time. I am missing everyone an home alot these past few days. I guess it comes from looking at the same walls day in and day out. So I just once again want you all to know how much we apprecitate the thougts and prayers. An we miss you all very much.
Love Austin and Tammy

Tuesday, September 28, 2004 2:53 PM CDT

Hey everyone. I am writing earlier than ususal today. I have good news. His counts are .03 today. In the next couple of days they are going to start the testing to make sure it is the donor cells and not his cells. Everything looks good so far though. The whole issue with the billy rubin(his liver) seems to have fixed itself. His count was back down to .07 today. The doctors say everything is on track still and looking good. I am not doing my happy dance yet. Don't want to get hopes up to high, and then me get disappointed and upset him. So I will just do it in my head for now. The prayers are working, so please continue. Gerry from the church that is letting us use the little white house called today and they are getting the new floor down this week. So everything will be nice and neat for Austin when we are ready to return to there. Hopefully soon, but we don't want to rush it. As much as I want to leave here with him, in a way it is really scarey. Here I am surrounded by help and wonderful nurses and doctors, there I have to make that phone call. But I know everything will be ok. He is a tough the Austin the Builder. His transplant certificate has Bob the Builder on it, and at the top it say Building A New Life. And it is true in so many ways. Well I am going to go for now, and get me some air while he is asleep. I will write again soon. Keep praying and keep emailing him. His website is the only way we got him out of bed a few times.
See ya soon. Oh yeah, I will post some new pictures of him in a couple of days. His bald head is adorable.

Monday, September 27, 2004 10:35 PM CDT

Hello all. Today is about the same. He is still feeling yucky. He walked just a little today, but his legs went to hurting. Althought they keep saying all of this is good. It means he is trying to grow cells. When I checked his labs this morning I got a shock. His white blood cell count is .02. For those of you who don't know the drill that is goooooooood. Not to get your hopes up yet, it could drop again. It is just another one of those good signs. The only bad thing today is that his liver enzyme went from .04 to 251. There are several things that could cause this. They rechecked this later and it was down to 100. So right now they are hoping it is just a fluke thing. They are going to start checking it every day. He went out tonight while they were changing out his iv's and i rode him up and down the hall in the wagon. Then he set in my lap for a while, he wanted to read his website. He says you people need to get writing. Then he fell asleep. Only to wake up sick. But he is doing ok now, and is in his bed resting. On another note in my DBA support group we are trying to get the word out about this beast that is turning our lives upside down. We are all emailing the Oprah show and telling our stories. We figure the more emails she gets the greater the possibility that she will do a show,and maybe we can get some support for research and other things. There are not a tremendous amount of people with DBA but that doesn't mean that this disorder should be ignored. So we need to get the word out. My request is that in honor of Austin and all the others, will you email Oprah and tell Austins story or just voice your concerns that you think there need to be more research. I am pleading with you all please take the time and help us out. I am going to turn in tonight, but like a bad dream I will return. Keep up the prayers. Thank you all

Sunday, September 26, 2004 1:11 PM CDT

Hello everyone. It has been a couple of days since I wrote. My aunt, mom, and oldest son came down friday night. I got to get a couple of nights good sleep and we all got to spend some time together. I am afraid I don't have any good news as far as how Austin is feeling. They last few days have not been good. They say it is all normal though. He has had to have several platelet transfusions, and his blood pressure finally got to the point that they have put him on bp medicine twice a day through iv. His hair is all gone. Now we are in to the point were they say he will feel like he has the flu. He hurts all over, they have uped his pain meds 3 times in the last two days. He is running fevers, and has a rash all over. His urine is a funny color, so we have gone back to putting cotton balls in his diapers. He just lays there kinda life like. I guess in a way that is one of the hardest parts, othe than the not knowing if it is working. Knowing what he used to do all day long, and now seeing him lay there and not want to move. It is killing me inside, and I keep trying to remind myself that it is ok, because if this works he want have to do all this bad stuff anymore. I will have a happy healthy little boy, and he will be my little boy for many many years to come. On to better thoughts. He has gotten so many cards from so many people and people we don't even know. We have them taped up all over his room,and he loves it. So keep them coming. Thank you for all your prayers and thoughts. They mean so much more than words can ever express. I know that my little Bob the Builder is a tough one, but I also know we need the lord and all your prayers. Thank you Keep emailing He loves to read them.

Friday, September 24, 2004 2:05 AM CDT

Hey everyone. Yesterday was kind of a blah day. He slept in really late. When we fianlly got him to get up, and go walk, his blood pressure was up. So his nurse had to get him some medicine, and unfortunately he had to take it by mouth. This made him mad and he got sick. Although after he threw up he felt better. He did several laps and went to art class. THen he played in his room for a while. He then met with his physical therapist. After that he was pretty well pooped. We didn't get him up any more today after that. He let me comb and play with his hair some so we could get some of the loose hairs out. His bp went up again, and he had to take more of that medicine. An of course he threw up again. So his night nurse Kelly which I think he is kinda sweet on talked to our attending. Her name is Michelle and she wrote orders for him to get a different one that he can get through his IV. Kelly was the nurse he met the friday before we came into the unit to stay. His dressing had came off of one of his lines, and we had to come in to get it fixed. When she is off and not here he wants to know where she is at. He is that way for the other nurse that he had when we were first here on the unit for the first few days. Her name is Amy. He is kinda sweet on those two. There is one more who has gotten use to also. She is in training and doing a good job to if you ask me for everything they have to remember. Her name is Christine. He likes it when she checks him out, she finds all sorts of animals in his belly. I am up late tonight. I napped with Austin today. I got to take a nice long shower, and even helped one of the new moms on the unit set up her caringbridge website. Well I am going to go for now, and I will be back today. ha ha

Thursday, September 23, 2004 4:17 PM CDT

Hello. Yesterday was day +6. Austin did ok. We only had three sick spells. He walked about 15 laps. And he even went to bingo. His hair is falling out more and more. They are going to have to change his pain meds from morphine to phentanyl. The morphine is itching him. The doctor says he is on track with everything though. They say that the mucusitis should plato around the end of next week, but to expect the fevers to start. So we are just making it one day at a time, the only way to do it. They are having a problem with his blood pressure being to high, so he is having to take meds by mouth which at this point is nothing but a fight. So they are discussing going ahead and putting him on an iv med to keep it controlled. Keep your emails a coming and we will write again soon.

Tuesday, September 21, 2004 11:05 PM CDT

Hello again. Today has been a sleep day. He had to get his last dose of ATG and his weekly dose of IVIG, so he has been hooked up to the monitors all day and getting benadryl. So he has been pretty sleepy all day. He got up for a little while tonight and sat in my lap to read his emails. He has only had two throwing up spells today, and neither one was to bad. His hair is coming out more and more. He had me picking it off his pillow today and putting it in a ziploc bag. He doesn't have to be hooked up to any extra meds tomorrow so maybe he will feel like doing more tommorrow after resting today. He fell asleep watching his Bob the Builder. Well I will write more tommorrow. Keep up the prayers and thoughts. We appreciate them all so much.

Tuesday, September 21, 2004 9:09 AM CDT

Hello all. I haven't written in a couple of days. Austin has two pretty good days. Sunday he got to be unhooked from his iv's for a little while, so he played and walked quite a bit. We did the same on Monday. He actually rode one of the tricycles on the unit for 15 laps. They have an incentive program for walking. For every 5 laps they walk they get a plastic foot to go on a Duke blue shoelace, that hangs from there iv pole. When they get 25, 50 and so on they get special prizes. He still has some bad sick spells, and he hasn't had anything by mouth for 5 days. He is suppose to do mouthcare 4 times a day, and we have been having a hard time with it because of the mouth sores. We are going to try and do an incentive thing, were he gets a treat when he does it. They hooked him up to a morphine pca pump on saturday. Then yesterday they also added a continuous drip. We also noticed yesterday that his hair is starting to come out. Well he is waking up now, so I am going to go check on him, and I will write later. Love you all. Thanks for thoughts and prayers.

Sunday, September 19, 2004 1:40a.m.

I forgot to tell you all about his nurses. He has got the best in mine and his book. He loves them. They are great. Some of the nurses, he has only had a couped of times, but they will come to the room anyway just to check on him. Two of them went out and got him presents for transplant day. Now in my book that is a great nurse and a remarkable person. Technically there job ends at 7:00, but most of the nurses down here that we have met so far, don't just walk out the door. They will tell you goodbye, and sit an talk and just be a friend. They treat each child and family as if they are a part of there own family. They deserve so much credit and praise for what they do. I don't think I myself could ever tell any of them how much they have meant to me and Austin. They make a really tough time a little easier. If any of you are reading this I would just like to say THANK YOU FOR BEING A GREAT FRIEND AND NURSE!

Sunday, September 19, 2004 0:16 AM CDT

Hello everyone. Saturday started out being a great day. Austin got up, and was feeling pretty good. We had special visitors coming, so we got up and got dressed. He was really excited. The people from Rick Hendricks pit crew for kids came by. When they came in his room he didn't know what to think. They had all sorts of presents for him. They even had a matchbox hero city toy for him, and they stayed and helped him put it together. He got a huge poster of Jeff Gordon. He made me hang it up behind his bed. He asked after they left, if Jeff was coming back. He talked about off and on the rest of the day when he wasn't feeling bad. I think it is just awesome that they take time out of there schedules to come and give the kids a reason to smile. Austin still doesn't know what to think about it all. The bad part of the day is that his mouth and stomach sores are getting worse, and he had to be put on a pca pump with morphine. He loved the pit crew guys, he wants to meet them again, and maybe Jeff come. He said he wants a hat now. He has gotten into his hats lately. I guess this is a good thing, at least I know he will wear one this winter while his hair is growing back in.

Friday, September 17, 2004 11:19 AM CDT

Hey yall. yesterday was the big day. everything went according to plan. He had lots of visitors and got all sorts of goodies. He even got to keep the bag his cord blood came in. he stayed out of it pretty much the entire evening. Mama stayed with him last night so I could get some sleep. He didn't throw up any last night. They say it will be any were from 10 to 30 days before we see any cells grow. So now we just wait, and quietly chant grow cells grow. Austin had a really good match for his donor, so that is in his favor. So just if yu haven't been praying before please do so now. We can use all we can get. We send hugs and kisses to everyone. Love you and miss you all.

Tuesday, September 14, 2004 11:41 AM CDT

Hello! Austin has had a couple of rough days and nights now. He is feeling so so today. His preschool teacher is in with him right now. He is finishing up his chemo today. He gets a day fo rest tommorrow then his transplant is thursday. I know yu all can't be here, but just have a little party at home and be with your family. You never know how precious they are. Enjoy every minute of it. Austin is gettting a second chance thursday to start over with a clean bill of health. Just pray alot that its a good chance. He has been a trooper so far though. So no reason to expect anything less. Will write again soon.

Sunday, September 12, 2004 11:22 PM CDT

Hey everyone. Today was our second dose of the second round of chemo. The first round has finally started effecting him. He has been throwing up today. He has been asleep off and on. They are giving him alot of nausea medicine, so he is pretty out of it. He starts another drug called atg monday. They say this drug makes you sick right on the spot, so I look for tommorrow to be worse than today. But he is still my little hero, so I know he can do it. He is like a little Bob the Builder. Can we do it, Yes we can. I will hopefully have time to write tommorrow. We love you all and miss you lots.

Thursday, September 9, 2004 4:57 PM CDT

Hello everyone. Today is Our 4th day. Austin is being a total trooper. He takes all of his meds like a big boy, and he even use the syringe and squeexes it into his own mouth. So for no effects from the chemo, tommorrow is his last day of the first round. Then the other starts friday. We are adjusting very well. I guess you do what you have to do when you have to do it. The nurses and doctors are great. I will talk to you again soon.
love the both of us

Wednesday, September 8, 2004 3:19 PM CDT

Hello. We have fianlly made it to the unit. We checked in on the 6th. He started chemo on the 7th, everything is going really well so far. He is taking all of his meds really well with no fighting. As of right now he is scheduled to have his transplant on the 16th. He is adjusting rally well to everything right now, I think he is doing better than I am. I am going to sign off right now and I will talk to soon. GOODBYE

Friday, August 27, 2004 7:27 PM CDT

Hello everyone. We finally have gotten some good news. We went down on Monday for a transfusion. While we were down there they set up for us to come down on Monday, and we will have pre-op on Tuesday, and his surgery on Wednesday. Then he will be admitted to the hospital on the following week. So unless something else happens we are finally on our way. So once we get settled in I will let yall'' know how things are going.

love ya!

Friday, August 20, 2004 9:43 PM CDT

Hello, everyone. We still don't have a date to go down. I am leaving on Sunday to go down and stay the night, so that he can get his transfusion on monday morning. They are supposed to have a meeting on monday. So maybe before I leave that afternoon, I will have some answers. So right now I would just like to thank everyone for their thoughts and prayers. Hope to give you some good news soon. Love Austin!

Friday, August 13, 2004 7:12 PM CDT

Hello, everyone! As of yesterday, we have been postponed again for the third time. They say it is due to a bed crunch. I am trying not to get aggravated or angry, because I know that somewhere down the line that we could, be in the position as these other kids and parents. We also found out that a young boy that we had met here at home that was waiting on a liver transplant, has received his, and is doing extremely well. So, we know that he is one of the reasons we are postponed and that makes it all seem like it has worked out for a reason. In the meantime Austin has been getting in plenty of playtime, and I have been getting in time with the kids and Chris. We have gotten to be here for alot of special events, so maybe everything is working out for a reason. We will write again soon. Love Austin

Thursday, July 22, 2004 4:09 PM CDT

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