Journal History
Click here to go back to the main page.
Thursday, December 7, 2006 1:34 PM CST
I want to start out by wishing everyone a Very Merry Christmas!
We have been very busy here on the farm. Derek and I stay busy taking care of the cattle, we have had alot of sick ones. They all seem to be doing much better now that the weather has cooled down some. We don't like the cold much, but they seem to. It is amazing how much better they act, when it is so cold out.
Dalton is still enjoying first grade, I can't actually believe how fast this year is going already. It seems like school just started and we are half way through it already. They have a Christmas program in a couple weeks, and Dalton has a part in it ( how exciting). We would have never dreamed he would actually do something like that, we ask him what he will say in it, and he tells us we just have to be there to see. (MR. SMARTY PANTS!) He just celebrated his 7th Birthday on Nov. 29th. We had the movie CARS for the theme. I can't believe he is 7 years old. He has changed so much, and is doing so good in school. We have seen that he is alot brighter and outgoing than he wants us to think. We see that he misses his sister though, just as much as we do. The gentleman that won 1st place and a beautiful belt buckle at Baileys' Memorial Team Roping gave the buckle back to Dalton. It was the neatest thing, it definitly brought tears to your eyes. Dalton was so proud of it, he had to put it on his belt. It is almost half the size of him. It is so awesome to see him want to do things like that, and honor his sister.
We are getting ready for Christmas, it is probably time to get started shopping, since it is only 2 weeks away. I think this is the hardest year yet. We miss Bailey so much, and just wonder what kind of things she would be interested in. We have to keep going for Dalton, and that is what we try to do. It is hard!!!!!
We hope everyone has a great Christmas and Happy New Year!!!
God Bless,
Derek, Crystal, Dalton and
Our Forever Angel Bailey
Sunday, August 13, 2006 6:36 PM CDT
Hey everyone! We are getting ready for the 4th Annual Bailey Kistner Memorial Team Roping. This year it worked out it will be on her birthday, September 2nd, how awesome is that! We will be doing a balloon release before the roping starts. Derek and I are thrilled that we will be honoring her and especially on her birthday. We know she will be with us and making sure everything will go smoothly for us. I am very anxious, and get a little worried about things. We are doing things a little different than we have over the past couple years. Our family is helping us with a food stand this year, we have never done that before. There are so many things to do for that, so far it is all going o.k. Bailey's Uncle Chad is smoking meat for it, and he does a great job. We are hoping to have a great turn out for the roping as well as eating.
We have posted flyers in towns all around us, and that helps get the word out. We have had great support the past couple of ropings, we feel it will be a great turn out, and what a way to celebrate her birthday!!
Bailey Kistner Memorial
Team Roping
Saturday September 2, 2006
12:00 pm
Weimer Arena
Melvern Kansas
#9 and #12 to run consecutively
3 for $24
USTRC number system
Buckle to High Money Winner
Bailey Kistner was a little girl who loved horses, the farm and going to rodeos. She enjoyed Sunday school and bible school. On Nov. 16, 2003, Bailey passed away after a yearlong battle with cancer. Her family uses her memorial fund to help Waverly Community Vacation Bible School and to help families of children who are undergoing intensive medical care.
Concessions on site-smoked meat and sides
That is what the flyer is, other than getting ready for that, we are staying plenty busy. Dalton will start school Aug. 17th, he is in 1st grade this year.
Thank you to everyone who continues to check in on us, we love hearing from you all. We hope everyone is doing well, and having a great summer, what's left!
Take Care,
The Kistners
Saturday, May 6, 2006 12:09 AM CDT
Yes, we are still around! I have been trying to update for sometime, I just don't make myself set down long enough to keep this updated.
We are all doing o.k. Dalton is about to finish up kindergarten and start playing t-ball for the summer. He actually will play only 6 games. We never thought we would have a sports person, but he is truely loving it. He needs some outdoor activities, and get out of the house. It is hard to get him interested in much of anything. We found a horse for him, he has been asking for a horse for at least a year. We want him to start having some responsibilities, and enjoy it.
I am working with my husband on the farm now. It has gone well so far, we actually have enjoyed spending the time together. We will see how the summer goes, I am sure I will have to learn alot, but it will be o.k.
We thought of everyone during the Remembrance weekend at St. Jude. We didn't attend this year, and all weekend we seem to keep bringing it up. We talked about it, and how we would have loved to see so many of our friends we made. We never thought we would ever want to go back if something were to happen to Bailey, but that all changes, we truely miss it. We have went the last two years, and like I said it was very hard not to go this year. We are planning on going to Memphis in September, the Ronald McDonald House is having a dedication and we decided we would like to wait and attend that. Dalton keeps asking us when we are going to St. Jude, he misses it as much as we do.
We continue to keep everyone in our prayers, and think of you often.
God Bless,
Derek, Crystal, Dalton and
Our Forever Angel Bailey
Friday, January 13, 2006 5:24 PM CST
Hello to everyone!
Tuesday, November 15, 2005 11:21 AM CST First thing, Thank you to everyone who continues to check in on us and leaves us a nice note. We are not as good as we should be at updating. We just have a hard time, and not a whole lot is changing.
Thursday, August 11, 2005 1:15 PM CDT It's a miracle, only after having this site for 3 years I have finally figured out how to put a picture on here. My broher-in-law had done the album part a long time ago. I knew if I could have enough patience I would get it accomplished. This picture was taken in August of 2002, right before Bailey's 5th Birthday and we found out about her tumor in November of that year. I can't believe the time that has gone by.
Thursday, June 16, 2005 12:11 AM CDT Update~Please keep Emma Grace's Family in your thoughts and prayers. Miss Emma Grace earned her Angel Wings on June 6, her caringbridge is caringbridge.org/ar/emmagrace.
Monday, April 4, 2005 4:35 PM CDT Hello to everyone-
Friday, December 24, 2004 3:53 PM CST We first want to say Merry Christmas to everyone!! We have a hard time getting on here to update anything, but we know everyone still checks in on us, and we greatly appreciate it.
Thursday, September 2, 2004 4:30 PM CDT Hello to everyone, and sooo sorry for not keeping this updated very well. We have a hard time, getting on here to type anything, but we do keep up with all of our St. Judes friends. There has been alot of good news, and some sad news this past year for everyone. We are very grateful for the good news. Today is a very hard day for our family, as Bailey turned 7 years old today in Heaven. I want her here with us soooo bad, we know she is celebrating with her friends and family in Heaven. We are getting together at the cemetary for a balloon release in her honor. We went to school this afternoon and did one with her classmates, and they really liked it. They all miss Bailey so much, and talk about her all the time.
Thursday, January 22, 2004 12:57 AM CST Hello to everyone. We are sorry for not having anything new to put on here, I have been saying for a few weeks now, that I needed to put something on here. We just have a hard time getting on here to say anything. Thank You to everyone who has continued to send us messages, and keep in touch. We have not been very good at it, and we are sorry. The days just don't seem to get any easier for us, actually they get harder everyday. Somedays, I could tear down the house, I'm so mad. I know it wouldn't bring her back, and we have to keep going for Dalton. We had an o.k. Christmas, it was really hard for everyone in our family, but we all made the best of it. Derek and I probably talk about it at least once a day, wondering when it will even get a little easier for us. I'm not sure if it ever will. It just seems so unfair, we did everything we could to make her better, and we will never regret taking her to St. Judes. Everyone was wonderful there, and we feel like it gave us this past year to spend and be devoted to her. We had alot of bad days, but we will always cherish the good days we had. We go to the cemetary and visit alot, Dalton is doing o.k., he has to pray for sissy and all of the kids at St. Judes everynight. We just don't want him to ever forget his big sissy, which I don't think he will. He remembers alot of things that Derek and I don't even remember. Dalton not only lost a sister, but a best friend. They played together all the time, and most of the time got along great. He is really lonely, we try to have cousins and friends come and play with him as often as we can. We all miss her so much!!!!!!!! I wanted to share a poem with everyone, that my 14 year old niece and her mom wrote for the funeral. My niece read it at the funeral and did a great job. Monday, December 1, 2003 2:54 PM CST To all our Friends and Family-
Monday, November 17, 2003 1:54 PM CST To all of our Dear Friends and Family-
Tuesday, November 11, 2003 10:50 AM CST Hello everyone! Hope ya'll had a good weekend. We are doing pretty good. Over the weekend, Bailey's head had a little more swelling than what it had been. We seen our doctor yesterday, and he ordered a CT scan for this morning. We have already been to the hospital today, but her appointments were kinda of spread out, so we came back over to Ronald for a little while. We have another appointment at 1:00 with her brain tumor doctor. We also started physical therapy this morning, it went alright. Bailey was pretty tired, and she was a little craby. We hope it will help her get her strength back in her legs, she is doing a little better, but needs the additional therapy to get her legs going again. The doctor said, it could be from the steriod she has been on since surgery. It can cause the muscles to tighten, and since she hasn't been up and going to much since this last surgery, they just aren't functioning correctly. We will see the surgeon again tomorrow, and get his opionion on the fluid still in her head, hopefully we will not have to put a shunt in. It has been 5 weeks since surgery, and her head is still real soft. We will start the second round of chemo next week, and then do tests after that, to see if this chemo is working on her or not. Friday, November 7, 2003 7:30 PM CST Hello everyone!! We don't have alot to update, its been a pretty easy week compared to most. Bailey had blood on Monday and platelets on Tuesday, after we got through those two days, they haven't been to bad. We just have to take her over for her gcsf, that will help her counts recover. One of us has taken her over, while the other one stays at Ronald to entertain Dalton. They did an x-ray on her stomach Thursday, because she had complained all week that it was hurting, but everything looked good. We are pretty sure it is just all of the medications she is on right now. We had to make a chart to keep up with all of it. They added a med to help with the acid in her stomach, and it seems to be helping. Her strength is still not very good, she has to have help to get around, and she gets kinda of whiney. It really upsets her that she can't walk and keep her balance, we know it is frustrating for her, and we feel so bad for her. We hope it is just because she has layed around to much, and her legs are weak. We will probably end up in physical therapy, she is very unbalanced right now. We think she would do better about walking for someone else, she knows how to work mom and dad pretty well. The grandmas were going to come today, but with her counts being down, we thought it would be better to wait a few more days. They will be down next week, I know it seems like forever for them. Her counts are coming up slowly, so we should be in good shape by next week. We will start another round of chemo on the 17th, and after that they will do an MRI and spinal tap to see if it is helping. PLEASE GOD MAKE IT WORK!!! Wednesday, November 5, 2003 11:02 AM CST Good morning to all! We are all doing pretty good, Bailey has had some stomach problems, the past few days. We have tried some different things to help her, and it wasn't getting any better. We saw her doctor yesterday, and he is thinking it is acid in her stomach from the medications she is on. She is on several different things right now, so it is totally possible for that to be the problem. They put her on some more powerful medicine to help the acid, and she seems to be alot better today, so far. Uncle Chad and Aunt Sherie left this morning to go home, we hated to see them go, but they will be back soon. Bailey was doing really good this morning, she was actually talking and playing a game with Aunt Sherie before they left. We don't have to go to the hospital until later this afternoon, so we are just enjoying the day and relaxing. Bailey has already received blood on Monday and platelets on Tuesday, so we are back into that routine again. Her counts are wiped out right now, we hope they are up by the weekend, so her grandmas can come visit. We were hoping this chemo wouldn't wipe her completely out, but it is. We are still doing good though with vomiting, it has been a week since she has gotten sick, and she is gaining weight, I think we are up to 34 pounds!!!! Bailey had gotten down to 30 pounds, 2 weeks ago. She is actually looking alot better.
Friday, October 31, 2003 3:26 PM CST Happy Halloween everyone!!!! We wish we were home to enjoy it with our family and friends, but we are not, so we are making the best of it. The kids definitly did not get deprived today, as they had enough candy at St. Judes for the whole U.S. We got out of the hospital yesterday, late afternoon. Bailey is doing alot better, still not alot of energy, but she hasn't gotten sick since Monday, that is a major improvement!! We have even been getting her to eat something, she hadn't ate anything solid for several days. We are on tpn and lipids as outpatient. It takes us about an hour to get everything ready to hook up to her every evening, but it is helping her weight, so it is worth it. Friday, October 31, 2003 3:26 PM CST Happy Halloween everyone!!!! We wish we were home to enjoy it with our family and friends, but we are not, so we are making the best of it. The kids definitly did not get deprived today, as they had enough candy at St. Judes for the whole U.S. We got out of the hospital yesterday, late afternoon. Bailey is doing alot better, still not alot of energy, but she hasn't gotten sick since Monday, that is a major improvement!! We have even been getting her to eat something, she hadn't ate anything solid for several days. We are on tpn and lipids as outpatient. It takes us about an hour to get everything ready to hook up to her every evening, but it is helping her weight, so it is worth it. Tuesday, October 28, 2003 5:43 PM CST Sorry, I haven't updated since last Friday. It has been a busy weekend. I had said in the last update on Friday, that Bailey was being admitted into the hospital, for some extra fluids and to start the tpn, which is basically a liquid feeding through her line, since she hasn't been feeling well for the past 2 weeks. We are still in the hospital, and probably will be for a few more days. They also started her on lipids, which gives her more calories through her line, she only weighs 30 pounds, she just feels so fragile, when you pick her up, and she just hasn't had any energy for anything.
Tuesday, October 28, 2003 5:43 PM CST Sorry, I haven't updated since last Friday. It has been a busy weekend. I had said in the last update on Friday, that Bailey was being admitted into the hospital, for some extra fluids and to start the tpn, which is basically a liquid feeding through her line, since she hasn't been feeling well for the past 2 weeks. We are still in the hospital, and probably will be for a few more days. They also started her on lipids, which gives her more calories through her line, she only weighs 30 pounds, she just feels so fragile, when you pick her up, and she just hasn't had any energy for anything. Friday, October 24, 2003 10:38 PM CDT We haven't had the best day today, Bailey got sick twice before we even left to go to the hospital this morning. We had to be there at 9:00, they wanted a MRI of her head, while we were waiting on them to call her back, she got sick again. We have been vomiting everyday for 2 weeks now. They finally decided to admit her into the hospital for some additional fluids, and to start her on tpn, which is fluids through her line, to hopefully get some weight back on her, and get her to feeling better. We are supposed to start chemo on Monday, but she is going to have to get alot better over the weekend before we want to start that. The surgeon that did her surgery 2 weeks ago, did come in and see her, they were thinking that maybe she had to much fluid on her brain, and would have to put in a shunt. Derek and I actually said a little prayer before he came in to see us, that we would not have to put her through that. Our prayer was answered, he said, she had some fluid, but not enough that he was concerned about it at this point. We sat in a little room from 11:30 this morning until 8:30 tonight waiting on a room to open up on 2nd floor, needless to say, we were getting a little antsy. Today is Derek and I's 11th Wedding Anniversary, and he is staying with Bailey at the hospital, and I'm at the hotel with Dalton. We will be inpatient at least through the weekend, since they are starting tpn. We are just really frustrated, we just want her to feel better, we are not giving up on her, it is so hard to see her feel so bad, and you sit there wishing it was you, or you could wave a magic wand and she would be all better, but it doesn't work that way. We just continue to pray and hope that everyone is doing the same for us. We have seen many sick children down here, and God has worked miracles on them, so we have to have positive thoughts. Thursday, October 23, 2003 8:25 PM CDT Well, it has been a long week for all of us. Bailey just hasn't been feeling good at all. We went to the hospital on Tuesday, and really didn't get much done that day. On Wednesday, she had her spinal tap, and we got the results of that today, not the news we were hoping for, there are several cells in her fluid. I guess we weren't shocked, but were hoping for better news. We are really stuck in a hard spot, there is no way you will give up on her child, but you hate to see them go through all of this again, not knowing if it will even help them. I think we have decided to try more chemo, they wanted to start tomorrow, but then decided to do another mri of her head tomorrow to get a baseline. We will begin Monday on chemo, she will have 5 days of 4hours a day IV chemo, it will be outpatient. We just feel we have to try something, or we would never know what could of been. You just can't give up, and you hope and pray that the decisions you make will be the right ones. Bailey got a package from an elementary school in Osawatomie, and in it she got a little rock with an angel in it, she carried it with her to the hospital today, and we said it would give her good luck. We just continue to need the thoughts and prayers coming our way, it is totally up to God. Monday, October 20, 2003 9:41 PM CDT Well, we have arrived back in Memphis today. We left home yesterday, so we could break up the trip and not drive it all in one day. Bailey didn't have a very good few days at home, we even had to take her to Topeka for a CT scan on Friday. We got home last Tuesday night late, and she was pretty good until late Wednesday, and then everything that went into her mouth came back up, and she didn't want to do anything the whole time we were home. we tried to get her to eat anything, and nothing made her happy. We finally got her to keep fluids down, but never ate to much at all. They wanted a CT scan to see if she had to much fluid on her brain after surgery, and if she did we would of had to put a shunt in. The scan didn't show anything abnormal, and her swelling has gone down alot in the past couple of days. She just has no appettite, and she is so thin. We will meet with nutrientists and her doctors tomorrow, so hopefully we can get her to feeling better, she just doesn't have any energy right now. We don't want to start any chemo, when she is this weak, and not feeling good. We will keep everyone updated on things. Thursday, October 16, 2003 8:27 PM CDT To update everyone on what's going on with us right now, we went to the hospital on Tuesday morning, and Bailey's doctor told us to go home for the rest of the week, and be back next Tuesday. We were glad that we got to come home, even if it is for a few days only. Bailey has been doing pretty well, except for today, she hasn't been to perky. Bailey's doctor at St. Judes also told us that the spinal MRI didn't show anything, so we don't really know why the surgeon told us that there was something there. We just hope that the St. Judes doctor is right, and we don't go back next week and they hit us with more bad news. We will be in Memphis for at least a month for sure. They are going to start Bailey on a different chemo (topotecan). We don't for sure how many rounds we will do at this point. We are not giving up hope, that something will work for her. We will let everyone know how things are going next week. Sunday, October 12, 2003 7:56 PM CDT Well, for anyone who hasn't heard by now, we are back in Memphis. Bailey had not been feeling well for the past several weeks, so we took her to her pediatrician back home. We all decided that an MRI might be a good idea to do, but never thought it would show up anything. We really thought and hoped that it was just the chemo still effecting her. Well it wasn't, we found out on Oct. 1st that her tumor was back in the same spot, and was the same size as before, we were all very shocked and upset. We had one day to get to Memphis, so we headed out on Oct. 2nd, Uncle Chad and Aunt Sherie followed us down, so they could help us out with everything. Bailey had surgery on Tuesday the 7th, and was out of the hospital by Friday afternoon. She did not bounce back quite as well as before, which is totally understandable to us. We also found out after doing a spinal MRI that there are tumor cells in her spine now. We just can't believe it, we spent the past 7 months trying to get rid of all of this, and now things have gotten worse. We will meet with her brain tumor doctor on Tuesday to see what we can do at this point. We have done the most aggressive chemo that they can offer for her. They do have some new drugs that we have discussed with them, we just have to keep faith and trust that she will be cured of this. We continue to need all of the thoughts and prayers coming our way, so please keep it up!!! Friday, October 10, 2003 9:24 PM CDT Well we are back at Ronald McDonald's house as of around 2:00 today. We were kinda of surprised that Miss B was able to get out, she hadn't really gotten out of bed until late last night. Derek and I got her to get up and go to the bathroom, and we walked around the hallway. It seems like the more people that are around, the less she will do for us. Sometimes, mom and dad can work miracles. Bailey's Aunt Sherie and Uncle Chad had to go home today, we will miss them alot. They pretty much took care of Dalton this past several days, and kept him in line for us. Dalton has done really well, he has spent long days at the hospital and been pretty good. I don't think he knows what to think about everything, he likes Memphis. We think he is the only one that does!!! Grandma Rosie and Granny Lynda are still here for a few more days. Bailey wanted Kentucky Fried Chicken for supper, so g'ma Rosie and I went and picked some up for all of us, she ate pretty good, better than she has all week. We have a few days to catch up on some very needed rest, we don't go to St. Judes until Tuesday morning at 9:00 to meet with Bailey's brain tumor doctor to discuss our options. We hope and pray that we can do what's right for her. We still need all the continued thoughts and prayers coming our way, so keep it up!! Wednesday, October 8, 2003 5:59 PM CDT Bailey went into surgery yesterday at 10:17 am. She was out of surgery at 3:00 pm. Everything went pretty good, she has some swelling today and she is a little bit on the cranky side today. She is down getting an MRI right now to get pictures for the surgeon. They are going to move her up to a regular room when she gets out of her MRI. She will probably be at LaBonheur for the rest of the week, and then will move back over to St. Judes. We knew everybody would be wondering how things were going, so we will try to keep the site updated the best we can for Crystal & Derek. Please keep them in your prayers! Monday, October 6, 2003 2:32 PM CDT We had an early morning at the hospital today, and then had a couple of hours back at Ronald McDonald House to get our things together. We have to check into LeBonheur Children's Hospital around 3:00 this afternoon, and surgery is scheduled for tomorrow, not sure what time right now. We didn't tell Bailey until today that she was having surgery, she did good, she cried for a little bit, and then the childlife lady took her to play for awhile. She seems to be doing good for now. Friday, October 3, 2003 10:10 PM CDT We made it to Memphis last night around 7:00. We had to go to the hospital and check in with them, and find out what time to be there this morning. We met with Dr. Gajjar, and did not get the news we were hoping for. Bailey will be having surgery Tuesday at another hospital here. Derek and I don't really know what to think, we are honestly scared to death. We don't know at this time what our options are after surgery. We will just take it one day at a time. We will try to keep everyone posted on how things are going. My sister and Chad came down here with us, which we are very thankful for. Our moms will head down Sunday afternoon. We brought Dalton with us, I could not leave him home again after being away from him for so long during her chemo. We will have lots of help for us and taking care of him. Wednesday, October 1, 2003 8:37 PM CDT To friends of Derek, Crystal and Bailey - I'm Bailey's Granny - Derek/Crystal ask me to put a note out to all of you. Bailey went to Topeka for an MRI today and the pediatrician called them about 4:00 this afternoon and told them her cancer has grown back. It is in the same spot and about the same size as before. In July she was clear. Their Dr. from St. Jude called them and they are to be there Friday, he said they would start over. They are leaving for Memphis at 8:00 AM tomorrow. Needless to say, we are all devastated - but praying it is God's will that she be healed. Hopefully Crystal will have access to a computer in Memphis and will update you, if not I will be back!!...we appreciate your prayers and concerns...love...lynda kistner
Monday, September 29, 2003 5:10 PM CDT Hello to everyone! We hope everyone is doing good. Bailey has had alot of bad days here lately. We try to go to school, but she gets really worn out fast. The first day of school, she got the flu, and was sick for several days. Then, she had allergy problems and ended up on some zythromax to get her over that. She will be real good for a couple of days, then she will have several days, where she gets sick every morning and has really bad headaches. We have been to her pediatrician several times in the past few weeks. This Wednesday we are doing an MRI here back home, just to ease our minds that nothing is going on. When she gets the bad headaches, she will just lay there and scream that it hurts really bad. We don't go to Memphis for a few more weeks, and we didn't want to wait that long. We pray that it is just her body still getting over all of the treatments. We just want her to feel better, she hasn't went to school that much at all. She just doesn't feel like going, but she is keeping her work up at home, she says kindergarten is to easy!! We are also trying to get her to eat and put on some weight, she has lost some since we have been home. If we could get the vomiting under control, that would help alot. Thursday, September 4, 2003 1:55 PM CDT Hello to everyone! We hope this finds everyone doing good, especially all of our St. Judes friends. We think of everyone all of the time. We don't have a computer at home yet, we hope to get one soon. I update when I am able to get to my moms house, to use the computer. Thursday, August 21, 2003 2:01 PM CDT Well, we are adjusting just great to being at home. Bailey is feeling good, and we took her to her first day of kindergarten today!!! We are just very glad that we are home and she is feeling well enough to go. She had labs done a couple of weeks ago, and everything looked great. We go next week for a physical exam and more labs. She was very excited to get ready for school this morning. We only have half day kindergarten, so she is going in the afternoon. Friday, August 8, 2003 12:06 AM CDT We have been home 2 weeks now, and are trying to adjust. Bailey has been doing really good, her appetite has really picked up. She will eat all day long if we let her! Dalton is very glad to have us all home again, he won't let us out of his site for very long at all. If I leave the room, you have to tell him, or he thinks I left again. Bailey had labs done for the first time yesterday in Topeka, we hope everything is staying stable. We will have a physical exam and more labs in two weeks from now. Hopefully, we can get her off of all the meds, she is having to take right now.
Monday, July 28, 2003 5:47 PM CDT YEAH!!! We finally made it home! It worked out good, since Memphis didn't have any power anywhere yet. It was a very interesting week last week, with the storm hitting on Tuesday and having to stay at motels Tuesday and Wednesday, we were very happy to be getting out of Memphis. We arrived home Friday evening, and got to see our families, that we hadn't seen for 4 months. Dalton was the happiest of all. We teased him that he had to go to grandmas house, and he was not impressed with us at all. He said NO, I stay here with you and daddy. Wednesday, July 23, 2003 8:43 PM CDT Well, it has certainly been an exciting couple of days in Memphis. Tuesday morning, we were awakened by a big storm going thru. They were knocking on our doors about 7 a.m. telling us to get downstairs, because of them. We had 100 mile an hour winds, and all of Memphis was without power. Target House doesn't have generators, so we were in the dark. The hospital is running off of back-up generators for now. They said it could be a week, before the power is back on in places. We had our appointments at the hospital yesterday afternoon. Met with Bailey's brain tumor doctor, and he asked us when we wanted to go home, and we told him whenever he would let us. He said that Bailey was doing great, and that if we wanted to, we could leave this weekend. He didn't have to twist our arms by any means. We were so excited to hear him tell us we could go home. We have been waiting fo those words for so long. Last night, we drove to Mississippi to find a motel, we didn't really want to be in Memphis without any lights after dark! Some people toughed it out at Target, it was a little stuffy in the rooms, without any air on. We had to drive about 60 mile south, before we found a room. Today, they made everyone pack-up what they needed for the next few days,and put everyone in a hotel downtown. Downtown is about the only part of Memphis that has power and water. It is a big mess down here right now. Sunday, July 20, 2003 6:36 PM CDT We just got through watching the Nascar races, and my guy won today!! I like Jimmy Johnson and Derek goes for Kevin Harvick, he got second. It was an exciting race for us! Bailey doesn't watch it to much, she usually goes in the other room and watches cartoons. We are so ready to go home! We talked to Dalton last night, and he asked me if we were home yet? I think he is ready to get back to his house with mom, dad, and sissy. Thursday, July 17, 2003 3:13 PM CDT Bailey is doing real good. She is completely off of the tpn, and her appettite is picking up real well. About every 30 minutes, she is wanting something to eat. Her Aunt Sherie and I found a good mexican restaurant,last time they were here. They have Bailey's favorite white cheese dip, so we promised her that when her counts came up we would take her there. Her counts finally came up to 1000, yesterday. The first thing she said, is can we go to the mexican place tonight. She ate really good, and it was nice to get out of the target house for awhile. Monday, July 14, 2003 3:49 PM CDT Hope everyone had a good weekend. We had a pretty good one, except Saturday we spent most of the day at the hospital getting platelets. It should have been a pretty short day, it seemed like it took forever to get the platelets going. Bailey's counts are starting to come up, but not very quickly. Her doctor said today, she thinks we will see a good jump in them in the next few days. We met with the nutrientist today, and they are taking Bailey off of the tpn (yeah)! She has really picked up on her eating, in the past several days. We just offer her things quite often, and try to keep things that she really likes to eat. Her favorite thing right now is hotdogs. We say whatever, as long as she eats! Friday, July 11, 2003 9:03 PM CDT Bailey has been doing real good! She tried to run a fever on us earlier in the week, but it never got to the point of being admitted into the hospital. We are glad of that. Her anc has been sitting at zero all week, until Thursday it came up to 100, so we are on our way up. (we hope) Bailey had her last hearing tests this week, and they are very impressed with her hearing. They said her hearing is as good, or better than when we started. We asked them how often they see this, and they said they could count on one hand the number of kids that don't lose any hearing. Most of the children on the same protocal, end up with alot of hearing loss, by the time they are done with treatment. Monday, July 7, 2003 1:06 PM CDT Hope everyone had a good 4th of July! We watched some fireworks out of our 4th story window at Target House. (yippy) Bailey at least got to see some, she didn't seem to bothered not to be outside. Her counts were going down quickly this weekend, so we just kept her inside. Saturday, they had a carnival in the front yard of Target House, she wasn't very impressed not to get to go to it. We had to talk to her a little, to make her feel better. It is hard, when she sees all the other kids out there having fun, and she can't. We just want to get her well, and come home. July 3, 2003 YEAH!!! We have completed round 4 of chemo. We had to stay an extra day in the hospital, since she got the bone marrow back also. They like to keep them overnight to make sure all is going well. Bailey did great through everything. She was ready to get out on Wednesday, they had a end of treatment party for her. She got balloons, and a t-shirt. The nurses sang songs to her, and threw confetti all over in her room. She didn't know what to think of all of that. It was quite exciting for all of us. We didn't ever think we would be to this point of it all. Now, we just hope and pray that she recovers quickly, and no fevers!! Friday, June 27, 2003 11:35 PM CDT Bailey has made it through her first day of chemo. This is her last round, and the first day is always the longest and hardest on her. She had some vomiting, but by this evening she was doing better. They had her on so much nausea medicine, that she slept most of the day, which is good for her. At least, if she sleeps, she doesn't get so sick. Tomorrow and Sunday, she will get chemo for 1 hour each day, and then Monday is just a rest day for her. Tuesday she will get her stem cells back, and hopefully we will be out of the hospital Tuesday evening or Wednesday. We told her this would be the last time she would have to feel so bad!! We just look forward to getting her recovered and coming home soon. Wednesday, June 25, 2003 7:05 PM CDT We have had a very nice weekend! Grandma Rosie and Granny Lynda brought Dalton down last Friday. Bailey only had to go to the hospital on Monday for labs, and we have had the rest of the time to spend with them. They had to head back home today, I think Dalton wanted to stay with us, but we told him the next time we see him, we will be picking him up from grandmas to go home to our house. We can't wait for that!! Wednesday, June 25, 2003 6:51 PM CDT We have had a nice weekend! Dalton has been here since last Friday, but they had to go home today. He didn't really want to leave to bad. We had several days off from the hospital, so we were able to spend all of our time with him and Bailey together. They have so much fun playing, and watching movies. Sometimes they just can't decide on the same movie, so then we have some problems. It was actually nice for awhile to listen to them argue. HA! Friday, June 20, 2003 9:16 PM CDT We have made it through round 3 without any fevers or infections!!! The first 2 rounds we were back in after each round with a fever, but this last round Bailey has done really good. Bailey's counts have bottomed out and are now recovered. Today her anc was 4100, which is real good. We are glad everything has went real well the past couple of weeks. Monday, June 16, 2003 6:01 PM CDT Hope everyone had a nice weekend, and a Happy Father's Day to all the dads. We had a pretty good weekend, we just had to go in for labs and gcsf. The gcsf helps bring Bailey's counts back up. We are still sitting at 200 as of today. Hopefully by tomorrow, they will be above 500. She has felt really good, even trying to eat a little more than she has for the past 3 months. She is still on the tpn, so it makes her not feel as hungry, but I think once we get through the last round and they can cycle it down more, she will start eating. Friday, June 13, 2003 12:10 PM CDT We have made through another week! We are just praying that Bailey's counts will recover and we won't start running a fever. Her counts have been at zero all week, until yesterday they were up to 100. It still has to get up above 500 for her to be out of the woods for infection. Hopefully by the weekend, they will have recovered. This would be our first time without fever, if we make it through the weekend. (YEA!) Monday, June 9, 2003 6:49 PM CDT We have made through another round, and one to go!! We got out of the hospital last Tuesday, and of course have had to go back over everyday for lab checks. Bailey has done really well, since we've gotten out. Of course, her counts are at zero right now. We just keep her mask on, and stay away from large crowds. By the end of the week, they should be coming back up. Hopefully little brother will be able to come and visit again next week. We are really missing him a bunch!!! Friday, June 6, 2003 6:06 PM CDT We got our second negative result back today, so we were able to get out of isolation and back into our regular room. We were glad, it was kinda of a pain to go back and forth to get things that we needed. Bailey has been feeling really good. Her counts are still doing well, we received blood yesterday and probably will need platlets tomorrow. Her anc will probably start going down over the weekend, thats usually the routine.
Thursday, June 5, 2003 6:19 PM CDT We finished round 3 on tuesday the 3rd. Everything went fairly well other than her blood pressure droped alittle more than usual. Then that afternoon one of the cultures they take started growing. We were able to leave the hos. but had to go to an isolation room at Target. The next culture came back negative and will have results on another one tomorrow. We should be able to go back to our regular room tomorrow night. She had another MRI today, we should know the results in the morning. Hope everything is fine. Well thats about it for now, check back in a few days. Saturday, May 31, 2003 11:55 PM CDT Bailey went in on Thursday night for round 3! We had a really good time last weekend, Grandma and Granny brought Dalton down for a visit. Bailey and Dalton had alot of fun playing and watching movies. Dalton asked us if we were going home too, I think he is really missing home. It is so hard to see him leave each time, but we know before long we will be home all together again. Saturday, May 24, 2003 2:16 PM CDT After spending a week in the hospital with a fever, from Monday the 12th until this past Monday evening. Bailey has been doing really good. The bacteria that was in her line is cleared up and we haven't had any more problems. Her counts have come back up for right now and her little brother came for a visit this weekend. The grandmas brought him down. They haven't been down for awhile, so it was really nice to see them. We are having alot of fun with Dalton. Bailey and him are having a ball playing, you can tell they really miss each other alot! I think Dalton would love to stay with us, and we wish he could. Tuesday, May 20, 2003 1:52 PM CDT YEAH!!! We have finally gotten out of the hospital. We didn't think we were getting out until this morning, but last night they had everything ready, so we could get out. We got out around 7:00 or so. It was actually nice to get back to target house. We had been in the hospital since a week ago Monday, a very long week. Bailey started running a fever, so we had to take her in and do cultures. They did find some bacteria growing in one of her lines, but was able to get it cleared up. It just happened when her counts were just going to zero. It took all week for her counts to come back up, but they are looking great now. Saturday, May 17, 2003 3:28 PM CDT It is late Saturday afternoon and we're still in the hospital. Things seem to be going ok, the last culture taken wed. night hasn't grown anything yet. Her temp. has been up and down but has not ran a fever. The doctors are waiting for her counts to come up before they will clear her to leave. She is still getting antibiotics everyday and blood or platelets. Had a tornado warning for Memphis last night. The nurses said we were to get in the hall way but would wait for someone to tell them when, and we were on the 4th floor. Doesn't seem like the best plan. They don't think a tornado can hit them but even mention a snowflake and everybody scatters. Well we hope to get out next week and get back to so called normal. Wednesday, May 14, 2003 2:58 PM CDT Well we've got to stay at the hospital since Monday night. Bailey got blood and vincristine monday after noon, then started running a fever about 8pm. They took the usual cultures and have not showed anything so far. She is still getting the IV antibiotics today but we don't know if they will continue. Chest x-ray on tues. did't show anything. Her counts are down and will get blood again today, had platelets tues. and GCSF everyday. Doctors said we may not Saturday, May 10, 2003 4:48 PM CDT Well, I think it was Wednesday the last time we updated anything. Bailey is doing great! We had to get blood on Friday, but should make it through the weekend without needing anything. We still have to go over and have labs checked over the weekend. We think she has done better through this round than the first one. She has her times that she gets sick, but not as much. Saturday, May 10, 2003 4:35 PM CDT Well, I think it was Wednesday the last time I updated. Bailey is doing great!! We had to stay Friday and get blood, but all of her other counts are doing good. Her anc is dropping pretty quick, but the doctor said that is good. The faster they bottom out, the quicker they will come back up. We don't think she has felt as sick with this round. She has her times!
Wednesday, May 7, 2003 6:05 PM CDT Bailey got out of the hospital yesterday afternoon. She received her stem cells in the morning and they monitored her for the afternoon and she was getting along fine. We were able to spend the evening with her aunt and uncle before they went home today. She has had little vomiting so far with this round. She will get sick in the mornings when she first gets up and then she is usually o.k. Today she has felt great. We had to go to the hospital for labs and right now her counts are doing fine. They will begin to drop probably in the next few days or so.
Sunday, May 4, 2003 9:17 PM CDT We have made it through round 2 of the chemo! Bailey has really done great. She had a little bit of vomiting, but not as much as the first round. Tomorrow she has nothing, it is just a rest and relax day for her. Tuesday she will get her stem cells back and then we should get out of the hospital that evening or Wednesday. Thursday, May 1, 2003 4:52 PM CDT We are getting ready to start round 2!!! We go into the hospital tonight and start tomorrow. It seems like April has gone by fast. Bailey has really done well for the first round. Her doctor said she did above average for the first one. They say that it is always the worst, because noone knows what to expect or how she will do. We were only in one time with fever. We just hope things continue to go as they are right now. We should get out Tuesday or Wednesday of next week if everything goes well.
Monday, April 28, 2003 1:51 PM CDT We have had a great weekend! Bailey got out of the hospital on Wednesday night. Her brother and grandparents arrived in Memphis Wednesday and came to the hospital to see her. We got all the stem cells collected and was able to leave the hospital around 7:30. Dalton was so excited to see his sissy! He remembered everything about the hospital from when he was here during radiation with us. He kept saying he wanted to go to D clinic! That is the clinic that Bailey went to during radiation. We got to go do some fun things with everyone while they were here, we had a great time. Wednesday, April 23, 2003 11:42 PM CDT We have had quite a week, so far. Sunday evening, Bailey started to run a low grade fever. We had to take her in around 11:00 to see what was going on. They of course kept her in the hospital. They took some blood cultures, and had to wait 24 to 48 hrs to get results. The fever came down on its own, and the cultures came back clear. YEAH! We would of been discharged out of the hospital yesterday, but they wanted to get the rest of her stem cells they need for the rest of the treatments. They put a line in her leg and took the stem cells out that way. We put the line in yesterday and then they collected the stem cells today. It was a 5hr procedure to collect the stem cells, but was much easier on her than the first time. We got the line out this evening and then was able to get out of the hospital. Her counts are recovering very well. We are hoping to get round 2 started next week. Friday, April 18, 2003 8:52 PM CDT Not alot to report today!! We had a long day at the hospital yesterday. We got there at 9:00a.m. and finally got out of there around 7:00 last night. Bailey's counts were low enough that she needed blood and platelets. The platelets take around an 1hr to give, and the blood takes around 3hrs to give. Of course, they can't be given at the same time. Today was much nicer, we got there at 9:00 and was out of there by 10:30. It's nice to have days like that, when you have to go everyday.
Tuesday, April 15, 2003 10:41 PM CDT Hello everyone!! We are all doing well, here in Memphis. Bailey is feeling real good. Yesterday, her blood counts were down low enough that she needed a blood transfusion. They had a some trouble finding her match, but they found it. We were at the hospital from 7:00 last night until 10:30 getting her blood transfused. She did just fine. So far everything has went according to schedule, we just hope it continues. We have talked to other families that are 3 to 4 weeks behind their schedule on this same protocol. We don't want that to happen, so we are trying to keep her from getting sick or catching anything. She feels so good, she doesn't understand why we can't go out and play and do things. We told her when we get home to Kansas, she can do whatever she wants to. Sunday, April 13, 2003 1:58 PM CDT We are settled back in at Target House, we got out of the hospital on Friday. It was nice to hear the doctor tell us we could get out on Friday instead of Monday. It had been a week since I had been outside. Bailey is doing very well. We have to go to the hospital everyday to have her counts checked, yesterday they had to give her some platelets to bring the counts up. We got there at 8:00 yesterday morning, and finally got to leave around 3:00, it was a very long day. She did great through it all. We went back over this morning for labs, and everything looked good, but her anc (absolute Neutrophil Count) was at zero. The anc estimates the body's ability to fight infections. It is normal for this to happen, it should bounce right back up in a few days. We just have to keep her out of large crowds until they do come back up. Other than that she feels great, she really wants to go out and play at the playground that they have here today, but we told her it would probably be best to stay in. It is so nice here, that's hard to do. Thursday, April 10, 2003 11:56 AM CDT We have made it through our first round of chemo. We started last Friday morning. Bailey did pretty well, she had a little sickness for 2or3 days. Everything went better than what we were expecting, which is always good. We are still in the hospital, and will probably be here until Monday at least. They started her on tpn, which is a nutrient supplement. She hasn't ate anything since we came into the hospital last Thursday night. So this will give her all the nutrients she needs. It is given through her central line. We will be doing it when we get out of the hospital just at night hopefully. They have to come teach us how to run the pump and to hook her up. It has been a very long week, but we are all doing o.k. Friday, April 4, 2003 6:28 PM CST We have made it through our first day of chemo. It has been a very long day for sure. Bailey has done real well, they took her down to icu this morning. The one drug that they give her can cause her blood pressure to drop real quick, so they like to keep a real close eye on them the first time it is given. Her's dropped a little, but it recovered pretty quick. Wednesday, April 2, 2003 7:48 PM CST We had a very nice day today. Bailey has been able to spend time with her grandma and granny, so she is having alot of fun. The weather has been very nice here, so we have been spending alot of time outside.
Sunday, March 30, 2003 11:02 PM CST Hello!! Bailey did not get admitted into the hospital today. They did labs on her Friday, and one of her counts was not where they would like it to be to start chemo. We had to go to the hospital this morning to have it checked again. It was up some, but not where they want it. They will keep checking it, and maybe Thursday they will be able to begin. She is doing really good right now. Wednesday, March 26, 2003 8:08 PM CST Hi everyone! Not much to tell today, we have had a nice day. We didn't do much of anything, slept in. It was nice to be able to sleep till we wanted to. We had to get some laundry done, but that was about it. Tuesday, March 25, 2003 9:21 PM CST Bailey is doing much better since the bone marrow harvest. For a few days after, she was really sore. She is finally starting to get around pretty good and acting like herself again. Thursday, March 20, 2003 3:38 PM CST We've made it through another day in Memphis. Bailey had her bone marrow harvest done yesterday morning, she was very uncomfortable all day. Then around 4:30p.m. she was running a fever, so we headed back to the hospital to have her looked at. They hooked her up to some i.v. fluids and gave her an antibiotic to cover any basis of infection. She didn't even want to be moved, she hurt so bad. We finally got out of there around 9:00p.m. Tuesday, March 18, 2003 6:25 PM CST We have just got back to the hotel, it was supposed to be a short day at the hospital. The one blood test that they did on Sunday evening, which they couldn't draw from her line. They had to poke her in her arm to get it, came back a little high. So, before the bone marrow harvest they had to do it again today, to see if it was o.k. It came back high also, but they are not worried about not doing the harvest tomorrow. She was not impressed to have to be poked. Today they put the num cream on her arm, so she wouldn't feel it. (much better) Sunday, March 16, 2003 6:37 PM CST Well we have arrived back in Memphis! It really didn't feel like we were ever gone. We got here around 3:00p.m. and had to go to the hospital for some labs. Tomorrow we have nothing going on, which will be nice to have a day to do whatever we want. It is going to be a very busy next few weeks after that. Bailey is taking a little nap right now. We ordered pizza in for supper. The weather is really nice down here right now. It was very hard to say good-bye to everyone back home. Especially our son, he wanted to come with us. He will be staying with grandparents, so we know he will be well taken care of. Be back tomorrow or the next day to update.
Sunday, March 9, 2003 4:29 PM CST Things are going much better now, than they were last Thursday and Friday. Bailey started not feeling to good on Thursday, she just slept most of the day and got sick to her stomach on Thursday and Friday morning. We got very concerned on Friday, when she got sick again and was just not being herself. Things had been going so well till then. We called St. Judes and told them what was going on, and they wanted us to get her into her pediatrician right away. We have to go about and hour from home to get her to the doctor. She was very dehydrated and they put her in the hospital overnight to replinish her fluids. They determined that she was having a side-effect from the radiation and all of her blood work came back o.k. except for the dehydration part. By Saturday morning she was not doing real well, but they felt she was doing well enough to go home. Today, she is doing much, much better and we are just trying to make her keep plenty of fluids down. We thought we had until the 24th of March, but we were told last week that we might have to be back on the 18th to meet with transplant team. We were hoping for a little more time at home, but we will do what has to be done to get her well. Sunday, March 2, 2003 12:48 AM CST Things are still going very well! Bailey is feeling really good, and is having alot of fun seeing all her little friends and family. We are at Grandma's today to have a dinner together. The weather has been a little nasty, it has been cold and snowy. Today is chilly, but the sun is shining. We haven't been able to get out much this week, so we looked forward to coming to eat at Grandma's. Time is going so fast, we have to be back in Memphis on March 24th. It seems like we just got home, and before long it will be time to pack-up and head back. Dalton will be staying with family here when we go back, that will be really hard. He has really gotten used to being with us at home. Hopefully, he can come down sometime to see his sister. It all depends on how she is feeling, as we will have to be very careful not to pass anything on to her. We are not looking forward to spending the summer in Memphis, but we will do what we have to, so Bailey will be able to get home and start Kindergarten. Friday, February 21, 2003 3:42 PM CST We have changed our looks on our page, because we are so happy to have been able to come home for a short stay. We thought the sunshine explained how we felt to be here. Bailey has done so well since we have been home. She has been able to go outside some with daddy and feed cattle. She loves to go with him and do things outside. The weather has been really nice the past few days, but we are suppost to get some snow this weekend and it is to turn really, really cold. We are enjoying the time outside while we can. Tomorrow, she and her brother are going to stay with Grandma and Grandpa for the day, so mom can go get her hair cut. We are just trying to do things and enjoy our time home, it is already going by rather fast. Will update again soon. Sunday, February 16, 2003 12:53 AM CST We are finally back in Kansas! We arrived home Wednesday night around 9:00p.m. The kids were so excited to be in there own territory. There were x-mas presents that they never got a chance to play with before we left for Memphis. Bailey is doing very well. She has kept me busy playing with all her toys from Santa. This morning she went to Sunday School with her Granny. She was so glad to see everyone at church. In a couple of weeks we take her to see her pediatrician, just for a check-up while we are home. Derek has a eye appt., and I have to go see my doctor for a check-up. We will be busy!! We will go back to Memphis around the 24th of March or so. Then will be there for 4 months of chemo. It will be a long 4 months, but we know it has to be done.
Saturday, February 8, 2003 1:39 PM CST Hello everyone! We are counting the days before we are home. It's seems harder now because we know we have a short time here. Bailey and Dalton have been busy this morning making valentine's cards and playing games. A group brought lunch in and had valentine's for all the kids. We have a dinner tonight, so don't have to worry about what we are going to fix today. Then we have a lunch tomorrow that someone is bringing in. It's so nice when different groups come in with things to do for the kids. It helps pass time. We have pretty long days Monday and Tuesday at the hospital, just because we will be getting ready to come home. Wednesday all we have is treatment at 8:00a.m. then we are getting out of Memphis for awhile.yeh!!!! Be home soon!!! Wednesday, February 5, 2003 2:20 PM CST Hello! It is Wednesday at 2:15p.m. We just got thru with lunch, I left Derek and the kids cleaning up the mess. Bailey and Dalton are both needing naps. Bailey had school at nine this morning and treatment after that. She finally slept last night without coughing all night long. We all slept much better. Her medicine they gave her has really helped, now she just has to blow her nose all the time. She is really looking forward to next Wednesday. We have treatment at 8:00a.m., then we should be able to head for home shortly after that. If the kids are doing well traveling, we will come home in one day. We will just have to see. See everyone soon!! Sunday, February 2, 2003 3:13 PM CST Sorry I haven't updated for awhile. Somedays I just can't make it up to the computer room. They have a computer room here at Ronald McDonald, but you can only come up here certain time of the day. I don't have alot of update. Grandma Rosie and Aunt Sherie came in on Thursday and will leave on Tuesday. We have had a nice weekend together. The weather has been beautiful. Saturday we went to a I-MAX theater and museum. The kids thought it was pretty neat. Bailey has had a little cold and cough, has had some rough nights sleeping with the cough. But, seems to be doing fine otherwise. Dalton is running out of patience being in the computer room. Is driving all of us nuts.Ha!! We only have 10 days left and then he can run loose on the farm again. He misses all the animals. We are all ready to be home. (daddy is really getting anxious to get home). He is driving me nuts!! HA!HA!HA! He is not used to being so confined in small place. I hope Mark has alot of free time when we get home, because I'm sure Derek will be calling him alot when we get home. See everyone soon. Tuesday, January 28, 2003 at 05:00 PM (CST) Bailey is taking a nap right now. She had to get up pretty early this morning to go to school. Then she had her weekly follow-up with her Radiologist Onc. He said she is doing so well, didn't expect her to have any further complications during treatment. She has had the sniffles and a cough. Doctors gave her some medicine, she is doing much better today. We have 2 weeks left after tomorrow. We are counting the days. We will probably be back here in Memphis around March 24 or so. They will do all tests over again, just like when we got here. That will be a little scary. I'm sure everything will be just fine. We just keep praying everyday. Sunday, January 26, 2003 at 08:36 PM (CST) It's Sunday evening, Grandad and Granny came to visit this weekend. We went to the Little Britches Rodeo last night and Bailey was in the Victory Lap and rode a horse all by herself. She thought she was pretty big stuff. Dalton rode one also. They had alot of fun. We went and ate lunch today and went to Wal-Mart of course. Derek, Dalton, and Grandad are watching the Super Bowl. We are getting ready to eat some apple pie and ice cream. Bailey has had a really good weekend. We have 2 weeks and a few days left for radiation treatment. yeh!! Then we will be home for about 4 weeks or so. (not long enough). Then we have to repack our things for a 4 month stay in Memphis. Bailey will go through Chemo. We are hoping everything will go well. She has felt so good during all the radiation, no sickness at all. She has lost all of her hair from it, but she has all different colors of bandanas to wear and it doesn't seem to bother her to much. Will be back tomorrow to update things. Friday, January 24, 2003 at 01:29 PM (CST) It's finally Friday, We look forward to having a couple days to ourselves. Bailey had radiation treatment this morning at 10:00 and then went to school at 11:00. She loves going to school. We are all doing well, Dalton seems to think he is a big boy and can wonder where ever he wants to here at Ronald McDonald House. He keeps us going. He actually has adapted to being here real well. I'm sure he wonders sometimes why we arn't going home. He says he misses all the animals at home. Bailey is really looking forward to the weekend as her Grandad and Granny are coming to visit, and we are going to a rodeo on Saturday evening. It's a youth rodeo called Little Britches Rodeo. Bailey is going to be in the opening ceremony riding a pony. She is real excited about that. We should only have about 3 weeks left of radiation. They told us to plan on being home for about 4 weeks, as they have to have her here a little early to get her ready for chemo. We look forward to seeing everyone! Wednesday, January 22, 2003 at 03:17 PM (CST) Bailey had a good day today. She had school at noon, which she loves to go to school. She was mad yesterday, because all her appointments ran behind. So, she didn't get to go to school. Then she had her radiation treatment at 1:00. Probably the shortest day we've had at the hospital since we have been here. Derek and Dalton stayed back at rmh and cleaned up our room. We are getting so many things, we are running out of room. Bailey loves getting mail, she checks our box everyday. She is feeling really good. We haven't had any sickness at all. She almost has lost all her hair, but she is dealing with it all great. Today put us at our halfway point, we should have last treatment on Feb. 12. We can't wait to get home for awhile to see everyone. We miss everyone alot. See ya soon!! Tuesday, January 21, 2003 at 03:05 PM (CST) Bailey had a pretty long morning. Everyone was running a little behind. She didn't get to attend school, so she was a little upset with us. But, otherwise she is feeling great. Dalton is back at the room with daddy & sissy taking a nap. We are all a little tired. They told us today we have 16 treatments left after today's. Looking forward to coming home for awhile.
Click here to go back to the main page. ----End of History----
Hope you all had a very Merry Christmas, and are off to a good new year.
We have started the new year off with a bang. Derek's dad had a severe heartattack the Tuesday after Christmas. They were able to fix the problem with stints, instead of doing open heart surgery. He is doing well, but not being able to do much right now. Derek has been extra busy, but we owe him for sure. Derek's dad kept everything Derek had worked so hard for going, while we were in Memphis taking care of our Sweet Miss Bailey. We are so thankful to have been able to dedicate everything to her and spend the quality time we had together with her.
Dalton had a good Birthday and Christmas for sure. I hope he was happy with everything he got. I think he was! It seems like Christmas break went so fast, he spent alot of it at my mom's, so we could go see Derek's dad and help them out. I don't really think it bothered him at all, anytime he can go to the grandparents he is thrilled!! He was not ready to go back to school, he loves his time at home. (He takes after his father)!!!! They are both quite happy just being home, me on the other hand like to do things.
We know alot of our friends will be going back to St. Judes for check-ups during January and Febuary. We will be thinking of everyone and pray that all goes well.
Our Sweet Miss Bailey~ We can only imagine how wonderful your Christmas was in Heaven and one day we will all be together again. Thank you for my ring, you and daddy did a wonderful job. We love you soooooooooooooo much!!!!
Thank you to everyone for continuing to check in on us, we love to hear from you.
Love, Derek, Crystal, Dalton and Our Forever Angel BaileyMy Heart Will Go On (Love Theme From "Titanic")
I can't believe it has been two years since our precious baby girl passed away. It will be two years on the 16th, and at times it feels like it was just yesterday, and others it feels like a lot longer. I just wish we knew when it will get just a little bit easier on us. I'm not sure anyone can tell you that answer. It seems to be harder on us now than it was two years ago at this time. I guess then we just didn't want her to be in anymore pain, and to be free of the cancer, but now we would give anything to have her back with us. Some days, we just don't care if we even get out of bed. We just know we must keep going, she would want us to. Dalton is doing really well in Kindergarten, and seems to be enjoying it. We are amazed how well he is doing, and he is making lots of friends, which he needs that. Before school, he could of cared less about writing anything or coloring, now he comes home and wants to know how to spell something and loves to draw and color. I am working just part-time at our schools after school program. It is for kids who don't have anybody at home when school is out, so they stay at the school until 5:00. We do study hall, so that they can work on any homework they might have. We also do fun things with them. My study hall group is 2nd and 3rd grade, I wasn't sure about that when I started, since Bailey would be in 2nd grade. They all miss her as much as I do, someone in the class says something about her about everyday. I think in a way it is good therapy for me. I just look at how they all act and just have to wonder about Bailey and how well she would have done in school.
We are staying pretty busy on the farm. Derek and his dad just got all the beans cut, and we are getting new cattle in, that takes alot of his time. By the time he feeds everything in the morning its lunch time, which I am here to cook for them everyday. I am glad that I am able to be home and get Dalton off to school on the bus. I don't go to school until 3:00. Dalton stays at after school with me and he loves getting to do crafts and other fun things. He stills has hard days, just like we do. He will talk about his sissy everyday. I want him to though, I don't ever want him to forget all the fun things they did together.
We continue to check in on all our dear friends we made while at St. Jude. We pray that everyone, continues doing well. We have some rough days ahead, as we get through tomorrow, and the holiday season, that is really hard. We don't even enjoy it that much, we just have to try to make it a special time for Dalton. He has a Birthday on the 29th of November, then we jump right into Christmas. I think he is more excited about his Birthday than he is Christmas.
Again Thank you to all who check in on us, and God Bless you. We hope everyone has a Happy Holiday!
Bailey~ we want you to know how much we love you, and we know you are watching over your brother and you see how well he is doing in school. He really wants to make you proud. Help us to get through the holidays, and we are sure you will be fine. I can only imagine Christmas in Heaven. You are and will always be our Tater B!!!! WE LOVE YOU!!!!!!!!!!!
God Bless,
Derek, Crystal, Dalton and Our Forever Angel Bailey
p.s. I am putting new pictures in the photo album, so be sure to check them out
I hope everyone has had a good summer. We have been pretty hot here in Kansas, with not much rain as usual. I am tired of all the dust, especially when you live on a gravel road. We have been very busy also, Derek has been putting up hay and when they get that done it will be time to cut corn. We are hoping to get a little time to get away, even if just for the weekend. It is sad how you get back into the same old routine of work, work, work and before you know it another year has went by. I am very lucky to have been able to stay home with Dalton since Bailey passed, he has had a very hard time coping with everything. I cook lunch for the guys and just try to help Derek wherever needed. Dalton and I have been able to do some fun things, before school starts. Dalton will start Kindergarten in a week. I don't know how excited he is. I am sad no doubt, but I know it will be so good for him to be with other kids and learn new things. Bailey started kindergarten, but didn't get to go for very long. My Uncle runs the bus service here, and Dalton told him not to pick him up until winter. I guess he thinks you can decide when you want to go. I told him it doesn't work that way.
We are getting ready for our 2nd Annual Bailey Kistner Memorial Team Roping on August 26th. We had t-shirts made up this year to sell, so we can keep the Memorial fund going to be able to pay for Vacation Bible School each year, which is held the first part of June. We want to be able to give to the children in our community, and what better way to do that, we usually have over 100 kids attend. One of Bailey's joy in life was being old enough to attend VBS, and her favorite song was "Jesus loves Me".
We were in Memphis in 2003, when they had VBS, and she was very upset that she couldn't be home to go. All she had to do though is tell her Granny who is in charge of VBS, and when Grandma, Granny and her brother came to Memphis to visit they brought VBS to her. Each day she did her class and everything as if she were there. Bailey was tickled pink. We are also giving away a saddle this year to the winner. We hope to grow bigger and bigger each year, so that we can also give some back to St. Judes. Hopefully one day they will find a cure for this horrible disease.
We continue to pray for all the St. Jude children, and all of our dear friends that we made while there.
Bailey we love you with all of our hearts!!!!!!!!!!
God Bless,
Derek, Crystal, Dalton and Our Forever Angel Bailey
We are all doing o.k. It just seems like things can't roll along without something happening. We were getting ready to leave for Memphis in April for Remembrance weekend. On that Monday before, a very, very dear friend of ours was burnt very bad while burning a pasture. Something that these guys do every year. Unfortunetly, he didn't make it, Derek and him have been close for many years. They both farmed and raised cattle, so they knew sometimes things didn't always go the way you would like them to. I worked with his wife for a few years, and we had kids around the same age, the very sad thing is he has three beautiful little girls, age 8, age 4, and age 2. Dave was very proud of his girls. Derek and him talked alot when we were going through everything with Bailey, and it really tore him up thinking of his own children. Dave's wife is a very strong person, and she is taking everything day by day. We told her that is all she can do. We still live life that way. There are alot of friends that will never forget him and the kind of person he was. We are just trying to help his wife and kids any way we can.
We did make it to Remembrance weekend, and had a nice weekend seeing everyone. Dalton was very excited about seeing Miss Angie in D clinic. The minute we walked into the hospital, he took his daddy and headed to her office door, he didn't forget where that was. We ran into Bailey's doctor and talked for a little bit. Dalton asked him where Miss Angie was, and so he took Dalton and had her paged. Miss Angie was there in less than a couple minutes. Dalton's eyes just lit up, when he saw her. They played for quite awhile. My brother and sister went with Derek and I, and our mom's came down together. My brother had never been to the hospital and seen what all Bailey went through. We showed him all over the hospital, and introduced him to some of the dear people who took care of Bailey on our journey. My brother made the comment when we left, about how sad that there are so many sick children. It makes you totally appreciate what you have. I try to tell my nieces and nephews that when they think their lives are just terrible, or things arn't fair. They don't know how well they have it.
We are so glad we were able to visit Emma Grace in ICU, and her wonderful parents Barney and Trish. Emma Grace was just so peaceful, it is so unfair that children have to go through this horrible disease. It just brought tears to our eyes to see her. Barney and Trish are so strong, but as parents going through this you don't have a choice. You just do everything you can for your child, and that is all that is on your mind. We just feel blessed to have been able to visit them, and let them know they are not alone.
We had our Vacation Bible School here in Waverly last week. It is always an emotional week for our family. We fund Bible School with Bailey's Memorial Fund. Bailey loved Bible School with all her heart. We hope to be able to do for lots and lots of years to come. We have around 100 kids all week. They have alot of fun. We have a program at the end of the week, and we end it singing Bailey's favorite song "Jesus Loves Me". I just wish she was here to enjoy it with the other children. I know she is watching over us and keeping us safe.
The summer is going by fast, and Dalton will be going to Kindergarten in August. I'm not ready for him to go, but I know it will be good for both of us. Somedays he wants to go and others he says his not going. We will see what he does on the first day. We are together everyday, so I will be lost when he is gone all day. I have a feeling Derek won't let me get to bored, as there are plenty of things to be done.
We hope that everyone is doing well, and we continue to pray for all our dear St. Jude friends. They will always be like family to us.
Miss Bailey~ We love you so much and miss you everyday, you know we talk about you everyday and are looking forward to the day that we are reunited with you.
Lots of hugs and kisses coming your way!!!!!!!!
XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXO
Lots of Love,
Derek, Crystal, Dalton and Our Forever Angel Bailey
Update June 6, 2005 We have just lost another precious child. Miss Emma Grace Age 4 has earned her Angel Wings, please let her family know your are thinking of them. caringbridge.org/ar/emmagrace
I know it has been awhile, it is just so hard to get on here. I hope that time will ease the pain, but is has been more than a year. We still miss Bailey so much, and I know we always will. My heart breaks everyday thinking of her, but we cherish the memories of all the wonderful things we were able to do with her. I just wish she was in school and having fun like other children. We see her classmates dailey, and we know for sure that she is not forgotten. They all miss her alot too. I do little treats for them on all the holidays, and I didn't get my Easter stuff done. I'm sorry kids!! One child asked my mother-in-law, she is the school librarian what Bailey's mom was doing for Easter. I had just done Valentine's Day. I just wasn't very organized. We are known as Bailey's mom and dad, which is just fine with us. I don't care if anyone ever knows my name. As long as I am always going to be Bailey's mom.
We have been staying busy on the farm. I cook lunch everyday for the guys. They are getting rather spoiled!! If I'm gone I certainly hear about it. HA! Dalton went to Kindergarten round-up last Friday, mommy is not doing so well with that. I know it will be so good for him though, he is just so lonely. I just can't believe he is my last one, and is already going to school next August. He seems to be pretty excited about going.
We will be leaving Thursday to head to St. Judes for Day of Remembrance weekend. It is always a hard trip, but we look forward to seeing everyone at the hospital. They have such a nice event for Parents and families who have lost children. Dalton is most excited about seeing Miss Angie, she is a child life person at the hospital. We will update to let everyone know how our weekend was. Thank you to everyone who checks in us,and we keep praying for all our dear friends.
We love and miss you so much our Sweet Miss Bailey!!!!!!
XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXO!!!!!!!
Lots of Love,
Derek, Crystal, and Dalton
We can't believe a year has gone by without our Miss Bailey here with us. It was a year on November 16, and it just isn't getting any easier for anyone. I think last year everything was just a big blur for us. We made her funeral arrangements, and then it was Thanksgiving, and then her little brother turned 4 on November 29. We just went through Christmas in shock still. We have had alot harder time this year with trying to plan things. It just isn't right that our sweet baby had to go through what she did, we will never understand WHY!!! These children that have to go through this horrible disease, in our eyes are the toughest little people around. Our whole family has a hard time making it through the holidays, and just any day for that fact. We all just stick together and not a day goes by that someone isn'ttelling something funny or sweet that Bailey did, she just had a way about her to make everyone smile. Dalton misses her so much, and wants to bring her back, as do we, but it is hard to explain it to a 5 year old. We continue our thoughts and prayers for all the children at St. Judes and plan on going back for Day of Remembrance next April. You wouldn't think you would miss a place so much, but it was our home for so long, and you make some amazing friends.
Dear Bailey- Daddy and Mommy miss you so much, and think about you everyday. Daddy misses all the things you helped him with outside, but we know you are right by his side. Mommy misses the fun things we did in the house, your brother just doesn't like to comb mommy's hair like you did. Somedays when we just don't think we can make it, daddy and I talk about all the fun times we had to share with you. We know you are in good hands, and oneday we will be with you again in Heaven. Daddy says sorry for not getting all the lights fixed on the house, he will get that done soon. We will make it through Christmas, knowing you are with us, and looking down on us with your beautiful smile. We can only imagine how beautiful it is in Heaven, and we are sure you helped with the decorating, as you always did here. We love you with all our hearts, and wish you a Merry Christmas in Heaven!!!
Daddy, Mommy, and Dalton
We want to wish you all a very Merry Christmas and a Happy New Year!!! We will continue to keep everyone in our thoughts and prayers.
Lots of Love,
Derek, Crystal, & Dalton
We went to Memphis in April for the Day of Remembrance at St. Judes. I remember when we were there with Bailey, and families were coming in for it, Derek and I looked at each other and said "if that is ever us, and we pray that it isn't, we would never want to come back. Well, that changes when something does happen to your child. We thought about all the good times we had with Bailey while at St. Judes, and all the wonderful nurses and doctors we had there. It was soooo hard to walk through those doors without our Miss B, but I do think it helped in some way. It will never make it any easier, but that was our life for quite sometime. They had a nice Memorial service, and a butterfly balloon release. We just take it one day at a time, people say it will get easier, but I can't imagine when that will be. My days seem to get harder, everday without seeing her sweet little face.
To our Tater B,
Mommy and Daddy just want you to know how much we love and adore you. We know you are watching over us, and helping us get through each day. We want to wish you a very Happy 7th Birthday, and we know you will be counting the balloons as we release them to you. We even got your favorite color PINK! Bubba talks about you all the time, and wants to be with you sooo bad, and misses you sooo much.
We will meet again someday, and we can't wait to hold you in our arms, and give you lots of hugs and kisses. Until then, give us the strength to get through each day, and take care of your brother. We love you and miss you soooooo much.
Love Always,
Daddy, Mommy and Bubba
BAILEY
B-is for the beautiful little girl you were and
always will be.
A-is for the angel you now are in Heaven.
I-is for the many "I love you's" you told your
mommy and daddy!
L-is for the life you had here on earth with us,
even though it was short.
E-is for the everlasting love that we will have
for you in our hearts now and forever.
Y-is the question that's on all our minds of why
you were taken away from us so soon.
by Pam and Destiny James
Thank you again to everyone, who continues to pray for us, and keep in touch. We pray for everyone everyday, and hope to stay in touch with each and everyone of you.
God Bless, The Kistners
We are sorry for not updating sooner, it has been very crazy around here. We don't really have alot to say anymore, it isn't near as fun to update this when you don't have good news to share with anyone. We are getting by, day by day. I thought the days would get alittle easier, but it seems to get worse. Bailey's service was on the 20th of November, and believe it or not Derek and I were doing o.k. then, but now it just doesn't seem possible that our little girl is gone. I'm sure that anyone who has lost their child goes through the same thing. One day, your just mad, and the next day, all you can do is cry. It was such a busy week before the funeral, all of the family was here, and people were bringing food right and left, which we were very grateful for. We had a slide show at the funeral, pictures of Bailey throughout her life. Everyone really enjoyed it, we had to have her service at the High School Gymnasium, there was 400 to 500 people there. That is the kind of support we have had back here at home. There were so many beautiful flowers, I wanted to bring everyone of them home, but we wouldn't have gotten them all in our house. I still brought quite a few home, it looks like a greenhouse here. My family took the others to their house, so I can still see them. We had a hard time going through pictures of her when she was just a healthy little girl. We laughed alot, and cried alot too. Derek and I just try to think of the goodtimes we had with her, and all of the funny things she used to do. We just never thought we would leave Memphis on the 14th, and by the 16th she would be gone. We really wanted to make it home with her, but we feel that God had his reasons. It was when everyone was gone after her funeral, I think it hit the most. It was just so quiet around here, everything you do or see reminds me of her. I can't even cook without crying, she used to love to help me, her favorite channel on t.v. was the cooking channel. We would put on our own little shows while we cooked. Daddy misses her when he goes out to feed the cattle, not a day went by that she didn't help him do that. Dalton talks about her all the time, he is doing o.k., but you can tell his hurting right along with us. We pray for her and all the St. Jude children everynight. The holidays are really hard, I went with my sister the other day shopping, and everything I saw, I thought of Bailey. We hope in time, things will get better for us, it will be a longtime. We know that we are not the only ones who have lost someone special to us, it just doesn't seem right that a child has to go through things like this.
Thank you to everyone who has kept in touch with us, and prayed for Bailey and our family. We will be forever grateful for that. We continue to pray for everyone!
The Kistners
Our Home Address-2385 Verdure Rd NE
Waverly, KS 66871
We left Memphis last Friday evening, our only goal was to get our little girl home, and cherish every moment we had together. Our plans did not workout the way we would have liked them to, we stopped in Jonesboro, AR to give Bailey a break from riding in the car. We had a good evening with her, she was watching t.v. and talking to us all. We were getting ready to go to bed and rest for our trip home the next day, around 10:00 she had a seizure for the first time, after that she never responded to us. We had discussed it with her doctor, but never thought it would happen before we got her home. We went to the hospital in Jonesboro, just didn't feel comfortable loading her up on our own and heading the rest of the way home. The staff at Jonesboro bent over backwards to help us in any way possible. We will never be able to Thank them enough. They kept her stabilized until we could get an ambulance that would transport her to our house. We spent the night in the hospital, she had another seizure the next morning. We got her in the ambulance around 2:00 p.m., and started home with her. We all prayed that we would make it before something happened. We got 23 miles from West Plains, MO and her condition was getting worse. The two men that took us in the ambulance were wonderful. They told us that they would do whatever we wanted them to do. They didn't feel comfortable heading on home, so we stopped in West Plains, hoping to get her more stable. We got her in the ER and she did settle down somewhat, they too were wonderful to us. They gave us a room, so that we all could be with her in private. Derek and I set in the bed with her from 5:30 until 11:30, we had to move around a little. She was fighting so hard, but just didn't want to give up. We kept telling her it was o.k., if Jesus was calling her to go and to not be afraid. We didn't want to see her suffering anymore. Daddy picked her up and held her, and then he set down and rocked her. It was probably 10 minutes or so and she just layed her head against him, and went to sleep. She looked better than she had since her surgery. The fluid in her head was gone, and she looked so peaceful. We held her for a longtime, and Dalton came in and saw her. We feel that he totally understands what has happened, when he came in we told him that sissy was with Jesus, and that she wasn't sick anymore. He cried really hard, and we told him it was o.k. to cry. We also talked about her on our way home yesterday, we had one of her medicine pumps in the back seat. Dalton found it and said "mommy we have to get this to Jesus, so that he can hook sissy up tonight". We told him that sissy didn't need anymore medicines, and that she would never be sick again. It just amazes us that he could think of something like that, but he did really pay attention to everything that we did for sissy. We were very fortunate to have our family there with us, when it all happened. We would like to Thank everyone for the love and support that you have shown for Bailey and our family, it will never be forgotten. We are doing as well as can be expected at this time. We feel a huge void that we know can never be filled. Everything you do, and see reminds you of all the goodtimes we had with her. She could brighten anyones day. We will always have her in our hearts and we love her very much.
Bailey you have always been an Angel to us, and now you have the wings too. Daddy and Mommy have talked alot about all of the goodtimes we had with you, and we Thank God for having the time with you that we did. We will always love you "Little Tater B".
Visitation will be at Jones Funeral Home in Waverly on Wednesday. The family will be there at 7:00p.m. Funeral Services will be on Thursday morning at 10:30, in the Waverly High School Gym. Memorial contributions can be sent to Jones Funeral Home or to us. The fund will be set up in her name.
Thanks again to everyone for helping us and our family during this past year. The support we have had is so overwhelming, and we will be forever grateful.
The Bailey Kistner Family
Our home address- 2385 Verdure RD NE
Waverly, KS 66871
Grandma Rosie and Granny Lynda will be here on Thursday, the kids are ready to see them, it seems like it has been forever. Dalton is doing good, he still gets in trouble alot, if you can imagine that!! ha! He does really good though, for all the time we spend at the hospital some days. If we could just get him to go to bed a little earlier, it would help. It is hard when we are all in one room together. The little guy knows if sissy is having a bad day, if she cries, sometimes he will cry too, especially if we are at the hospital and they are doing something to her that upsets her, then he gets upset. It's so sweet. Mom and dad are doing o.k., we just hope that everything we are doing will help her, and we can come home with a healthy child. We just live day by day, and pray for any good news. It is so hard to see her not be able to get around on her own, and she gets so mad. It just seems like when you have a few good days, something has to happen, that sets you back. We hope that they can do something about the fluid without putting a shunt in. I don't know how much more she can take, or us.
Please continue to pray, and thank you to everyone for leaving us little notes, we look forward to reading them.
Thanks so much, Derek, Crystal, Bailey and Dalton
We want to thank everyone for checking in on us, and leaving us a note. We greatly appreciate all of the thoughts and prayers for Bailey, we continue to need them. We pray that she gets her strength back, and can run with her brother.
Thank you all so much, Derek, Crystal, Bailey and Dalton
We have alot of St. Jude friends that will be traveling here or going home in the next week or so, so please pray for all of them a safe trip. Please keep up the prayers for Bailey, she is doing better each day, so they are working. Thanks to everyone for checking in on her, and leaving us a note, we greatly appreciate it.
Thanks so much, Derek, Crystal, Bailey and Dalton
P.S. Be sure to check out the websites below!! Bailey is the patient of the month for November.
Bailey had her last round of chemo this morning for two weeks. Dalton was rather thrilled, since he has had his costume for a longtime, he finally got to show it off. Bailey could of cared less about putting hers on, it makes us upset, because the things she used to just love to do, she doesn't care anything about anymore. She didn't even trick or treat today at the hospital. Dalton and I went around and filled her bag with lots of stuff, his bucket got to heavy for him to even carry! They go all out at the hospital for Halloween that is for sure! He had a great time. Bailey put her costume on this morning, just because mom and dad wanted her to, but no one really got to see her, because she was in a room getting her chemo, and she didn't even want to leave it on very long. I did get some pictures, for the grandmas!! We get to rest tomorrow, and then Sunday, her doctor wants to see her and get some labs. Aunt Sherie and Uncle Chad are coming down Saturday, for a few days, so that will be fun.
Please keep up the prayers, we know that prayers work, and we continue to need lots of them! Thanks to everyone who has checked in on Bailey and left us a message. We look forward to reading them everyday.
Our New Address-Ronald McDonald House
Bailey Kistner Room 32
535 Alabama Ave.
Memphis, TN 38105
Thanks so Much, Derek, Crystal, Bailey and Dalton
P.S. Be sure to check out the websites down below. Bailey is St. Judes patient of the month for November. She also had a quilt made on the computer personally for her. It is really neat.
Bailey had her last round of chemo this morning for two weeks. Dalton was rather thrilled, since he has had his costume for a longtime, he finally got to show it off. Bailey could of cared less about putting hers on, it makes us upset, because the things she used to just love to do, she doesn't care anything about anymore. She didn't even trick or treat today at the hospital. Dalton and I went around and filled her bag with lots of stuff, his bucket got to heavy for him to even carry! They go all out at the hospital for Halloween that is for sure! He had a great time. Bailey put her costume on this morning, just because mom and dad wanted her to, but no one really got to see her, because she was in a room getting her chemo, and she didn't even want to leave it on very long. I did get some pictures, for the grandmas!! We get to rest tomorrow, and then Sunday, her doctor wants to see her and get some labs. Aunt Sherie and Uncle Chad are coming down Saturday, for a few days, so that will be fun.
Please keep up the prayers, we know that prayers work, and we continue to need lots of them! Thanks to everyone who has checked in on Bailey and left us a message. We look forward to reading them everyday.
Our New Address-Ronald McDonald House
Bailey Kistner Room 32
535 Alabama Ave.
Memphis, TN 38105
Thanks so Much, Derek, Crystal, Bailey and Dalton
We did start the chemo yesterday. It was a rough first day for her, they had to put an IV in her arm, to run the chemo through for a few days, until they get the level of chemo that they want for her, so that was not fun. She did pretty good through the chemo, it runs for 4 hours a day, after the chemo was done yesterday, she had alot of nausea. By last night she was doing alot better, and was actually talking and laughing at things on the t.v. Today, she has had no nausea, so that is a blessing. Dalton and I came back over to Ronald McDonald for awhile, and when we were leaving, she actually wanted to try and eat something, she decided on tator tots. I hope they stay down. It would be nice if she could eat a little bit, she hasn't ate anything solid for several days.
We just need the continued thoughts and prayers coming for Bailey, we know they work. Be sure to look at our website links down below, Bailey will be the patient of the month in November, just go to that website and click on patient of the month. Another exciting thing is the quilts of love, it is really neat, so be sure to take a look at it.
our new address- Ronald McDonald House
Bailey Kistner Rm#32
535 Alabame Ave.
Memphis, TN 38105
Thanks so Much, Derek, Crystal, Bailey and Dalton
We did start the chemo yesterday. It was a rough first day for her, they had to put an IV in her arm, to run the chemo through for a few days, until they get the level of chemo that they want for her, so that was not fun. She did pretty good through the chemo, it runs for 4 hours a day, after the chemo was done yesterday, she had alot of nausea. By last night she was doing alot better, and was actually talking and laughing at things on the t.v. Today, she has had no nausea, so that is a blessing. Dalton and I came back over to Ronald McDonald for awhile, and when we were leaving, she actually wanted to try and eat something, she decided on tator tots. I hope they stay down. It would be nice if she could eat a little bit, she hasn't ate anything solid for several days.
We just need the continued thoughts and prayers coming for Bailey, we know they work. Be sure to look at our website links down below, Bailey will be the patient of the month in November, just go to that website and click on patient of the month. Another exciting thing is the quilts of love, it is really neat, so be sure to take a look at it.
our new address- Ronald McDonald House
Bailey Kistner Rm#32
535 Alabame Ave.
Memphis, TN 38105
Thanks so Much, Derek, Crystal, Bailey and Dalton
Thanks so much, Derek, Crystal, Bailey and Dalton
Please keep up the continued prayers, we need all that we can get right now!!!
Thanks so much, Derek, Crystal, Bailey and Dalton
Please keep up the continued prayers, we still need lots of them!!!
Thanks so much, Derek, Crystal, Bailey and Dalton
Our Address- Ronald McDonald House
Bailey Kistner
535 Alabama Ave.
Memphis, TN 38105
Thanks so much, Derek, Crystal, Bailey and Dalton
Our Address- Ronald McDonald House
Bailey Kistner Rm#48
535 Alabama Ave.
Memphis, TN 38105
Thanks so much, Derek, Crystal, Bailey and Dalton
Love, Aunt Sherie
Grandma Rosie and Granny Lynda arrived just in time to eat some lunch with us. The kids were glad to see them. We will keep everyone updated on how things go tomorrow. We have to get headed for the hospital soon.
We need all the prayers we can get right now!!!
Love, Derek, Crystal, Bailey and Dalton
Please pray that all will be o.k., we need all that we can get right now.
Love, Derek, Crystal, Bailey and Dalton
We think of everyone all of the time, and especially right now for Marissa Burgharts family. They are in our thoughts and prayers everyday.
Take Care, Derek, Crystal, Bailey and Dalton Kistner
Bailey is doing really good. The first day of school went well, except that night she came down with the flu and was sick for several days, not a good way to start school. We had been home exactly 1 month, just when you think things are going good, it seems like something has to happen. It seems like you can never stop worrying about things. We just take one day at a time, and are very thankful we are home, and that Bailey is in school and so far, other than the flu, she is doing really good. We celebrated her 6th Birthday, this past Sunday with all of our family. Everyone had a good time, and she got plenty of presents. Her Birthday was Sept. 2. This weekend Bailey's dad is riding our horse in a trail-ride for St. Judes. We have been getting ready for that all week. The horse hasn't been rode in awhile, so I hope it does o.k. Dalton thinks it is his horse, and wants to pet him all of the time. We had over 12 inches of rain in two days, this past weekend, but it cooled down alot, which made it alot nicer to be outside.
We will be back in Memphis in October, I think around the 21st. We think of everyone, and continue to pray.
Take Care, Derek, Crystal, Bailey and Dalton
Next weekend, she is having her 6th Birthday Party, she picked out Princess plates and accessories. We even had to get a pinata. It seems like time has gone by quickly since we have been home, and it will be time to go back to Memphis before we know it. We go back the end of October for just a couple day check-up.
We still think about all of the friends we made, while at St. Judes, and hope everyone is doing well.
Take Care, Derek, Crystal, Bailey and Dalton
We went and enrolled Bailey for Kindergarten, yesterday. It doesn't seem like she should be old enough to even go, but she is very excited about it. She will start on the 21st. We are just glad that we are home, and she is feeling good enough to go. We will go back to Memphis towards the end of October for check-up.
We are still praying for all of Bailey's St. Judes friends that are having some bad times right now. We hope everyone continues to get better.
Love, Derek, Crystal, Bailey and Dalton
Bailey has been feeling pretty good, she is eating real well. She was real happy to see all of her cousins and Aunts and Uncles that she hadn't seen for quite awhile. We hope she contiues to improve each day, so she will be ready to go to school in a few weeks. We were hoping to get her central line out, but the doctor recommended that we leave it in, as long as it wasn't bothering her. We will have to take her to her pediatrician in Topeka for labs and check-ups, so it will be good that they won't have to poke her. It is just one more thing that you have to worry about, especially when she goes to school.
We are just trying to get reorganized at home, and get things put away. I do a little each day, and the kids are having fun being together, and playing with their toys from x-mas.
Love, Derek, Crystal, Bailey and Dalton
We are just trying to get by the next few days, and get out of here, and back home. We are so ready to see Dalton, and all of our family and friends!!
Love, Derek, Crystal, and Bailey
Bailey's MRI of her head came back good. There was no change since the last one, a month ago. The cat scan,they did on Thursday to see for sure what the spot on her back was, came back o.k. as far as we know. Dr. Hale gave us the report on it, Friday when we met with him. He said they are saying it is a group of blood vessels, that just happened to form on her bone in her back. He said, we would have never known about it, if she didn't have the brain tumor. We don't know about the MRI done on Friday of her spine. We are sure that everything is fine. At least all of the major tests are complete. Next week, we go back to her brain tumor doctor and hopefully find out when we can go home. We are hoping in a week or two!!
We also have new pictures of Bailey on here, so be sure to take a look. She got to put her handprints on the wall in the hospital. The fourth floor is the transplant floor, and all of the kids get to do it, when they are completed with treatment. Bailey thought that was alot of fun.
Lots of Love, Derek, Crystal, and Bailey
Tuesday, she had her mri of her head, don't know anything on it yet. We figure no news is good news. Today, she had her cat scan of her spine, to determine what the spot is on her back, that showed up last time in the mri. Tomorrow, she has her mri of the spine. We will be so glad when this week is over, and we know that everything is o.k. We may only be looking at a week or two, before we can come home.
Thanks to everyone for leaving us a message. We have new pictures on here, so be sure and take a look!
Derek, Crystal, Bailey and Dalton
Tomorrow, she has her MRI of the head, and then her spine MRI is on Friday. We will be glad when the week is over, and we know that everything is fine. We don't know for sure yet, when we are coming home, but it shouldn't be to much longer we hope!
Derek, Crystal, Bailey and Dalton
We are now trying to get her to eat, so she can get off of the tpn. She has been trying alot more things here lately, than she had been. They cut her tpn back to a 12 hr. cycle, instead of 14 hrs. Normally she wants things that we don't have! ha!
We are counting the days until it is time to come home! We can't wait to see everyone back home. Thanks for all of the notes and keeping us in your thoughts and prayers.
Love, Derek, Crystal, Bailey and Dalton
Sunday, we spent the whole day getting platelets and blood at the hospital. Today, she had her last push of chemo put through her line, and we are officially done with it. (YEAH!) If we can get through this week, with no fevers or getting sick, then we should be o.k. By the weekend, her counts should start to recover. We are just waiting for that, and all the scans that will be done before we come home. They are going to try her on the steriod, to see if her appetite will pick up, so we can get her off the tpn. She will be very glad of that.
Thanks to everyone who has checked in on Bailey, and left us a little message. We pray for all of Bailey's other St. Judes friends!
Love, Derek, Crystal, and Bailey
We are also hoping to get her off of the tpn, which is her nutrients, since she hasn't been eating. She has tried to eat alot more than she was the past several months. They are going to try a low dose steriod, she was on it during radiation, and ate all of the time. We hope it works!!
Thanks to everyone for leaving us notes, and Have a Happy 4th of July!!!!!
Love, Derek, Crystal, and Bailey
Thanks to everyone for checking in on her, and leaving us a note! Have a good weekend!
Love, Derek, Crystal, and Bailey
Bailey didn't get to go to Bible School this year, and she loves to go. Granny Lynda is in charge of bible school back home, so guess who brought all the bible school things with her and we had bible school here each day! Bailey learned all of her bible verses for each day and the songs. They had alot of fun, she even got to do the crafts. Yesterday, she received her certificate and pin for attending, she thought that was just pretty neat. I don't know if Dalton will go next year or not, he didn't seem to interested in it, but maybe when we are back home next year he will want to go.
We go into the hospital tomorrow night for the last round!! It is hard to believe that we are getting closer to coming home everyday. We just hope and pray that all goes well, and we will be coming home by the end of July! Please keep us in your thoughts and prayers. We look forward to seeing everyone back home.
Love, Derek, Crystal, and Bailey
We told him the next time we see him, we will all be home and we can't wait!! We go into the hospital tomorrow night to get ready for round 4 (last round)!!! It will probably be another 4 weeks or so before we will be able to come home, but it is getting closer. We are starting to get a little anxious, because we didn't think we would ever get to this point when we first started all of this.
We will keep everyone informed of how the last round is going, throughout the weekend. Thanks for all the messages, we look forward to hearing from everyone!
Love, Derek, Crystal, and Bailey
Grandma Rosie and Granny Lynda arrived this evening with Dalton. Poor Dalton loves to go across the Mississippi river, and he was asleep still when they arrived here at Target House. They will be here until Wednesday, so we hope to have a nice weekend with them. Bailey doesn't have to go to the hospital until next Tuesday for labs. Thursday we will go into the hospital and begin round 4 on Friday. Aunt Sherie and Uncle Chad are coming back again for the last round. Bailey loves having them here, so do mom and dad.
Thanks to everyone who has left us notes, we enjoy hearing from you. We hope to be home real soon!!!
Love, Derek, Crystal, Bailey and Dalton
Bailey is counting the days this week, because her brother is coming to visit on Friday for a few days. Grandma Rosie and Granny Lynda are bringing him down. Bailey is also excited to see them. I talked to him on the phone the other night, and he told me to be home in 5 minutes!! I told him I wished I could. He is definitly ready for us to come home.
We will go in for the last round on the 26th. Probably, will have to be here for another 4 to 5 weeks after that. Bailey's counts will have to recover and she will have all the scans done, before we leave to come home.
Thanks to everyone for leaving us a note, and can't wait to come home!!!
Love, Derek, Crystal,and Bailey
Grandma and Granny are planning on bringing little brother down next Friday, so we hope everything starts coming up. Dalton is ready to come back to Memphis! He tells his grandma and granny that he wants to come to the target house about everyday. We can't wait to be home again with him all the time. We really miss him!!
We will go in for the last round on June 26th, if all goes well. After that, we just have to wait for Bailey's counts to recover and go through all the scans again. Probably 4 to 5 weeks. We hope to be home in time to get Bailey enrolled for Kindergarten, she is so excited about that. Hope she feels good enough to go. It will be good for Dalton to have some alone time with mom and dad, since we haven't seen him much for the past 4 months.
Thanks for everyone who has left us a message, it is nice to hear from family and friends. Hope to see you all real soon!!!
Love, Derek, Crystal, and Bailey
Derek talked to Bailey's brain tumor doctor today, about the spot they found on her back last week in the MRI. He said right now, he doesn't want to do anything, or run any tests. He doesn't seemed real concerned about it, he thinks it may be a blood vessel (we hope)! He said after round 4, we'll go through all of the scans again, before we go home. If something needs to be done, we will deal with it then. Right now, we are just focusing on getting through round 4 and going home!!
Thanks so much for checking in on us,and leaving us a note! It is so nice to hear from family and friends, and we look forward to coming home soon!!
God Bless, Derek, Crystal, and Bailey
Her MRI was done yesterday, and we talked to her doctor today. He said everything looked good. There is one spot on her back that showed up, but they are not really concerned about it right now. It is not on her spine, it is on a backbone. So they say, that it more than likely does not have anything to do with her brain tumor, and we shouldn't worry about it. They are going to do a cat scan next week, just so they can get a better idea of what it actually is. We were glad to hear everything else looked great!
Thanks to everyone for checking in on us, and hope to see everyone real soon!
Derek, Crystal, and Bailey
DK,CK,& Tater
Bailey has done well so far with this round! She had some sickness yesterday, but it is always the worst day of it all. She slept all day, and then at 11:00 last night she was wide awake and ready to watch movies. Aunt Sherie and I stayed at the hospital with her, so daddy could get some rest. Her dad and Uncle Chad are staying with her tonight. It is very tiring, so it is nice to have someone here to help take breaks. We just hope everything continues to go well and we can get round 4 started on time.
Thanks to everyone for checking in on us and leaving us a note! We greatly appreciate it!!
Derek, Crystal, and Bailey
Next Thursday, we go in to start round 3!!! We are starting to get very anxious, because that means only one more round to go!! Everyday is one step closer to coming home. We just hope and pray no problems arise.
Thanks again to everyone for checking in on us, and leaving a little note!!
Derek, Crystal, and Bailey
We had to learn one more thing, they put her on antiobiotics as outpatient. We have to hook her up every 8 hours to her line for 30 minutes of meds. She is feeling really good, so we hope to stay on schedule.
Thanks everyone for checking in on Bailey and leaving us a little note! We really enjoy hearing from all!
God Bless, Derek, Crystal, and Bailey
Dk,Ck, & Tater
be able to leave untill the counts come back up. Last round it was 10 days, hope we don't have to stay that long.
Thats all the news for now, don't forget to sign in so we'll know who's been here. thanks
Dk,Ck,& Tater
The exciting part is we are halfway done!! We just hope that all stays on schedule and we can return home by the end of July or first of August. We just try to keep her in and away from large crowds as much as possible. It gets kinda of boring, but you just have to. We hope that Dalton can come back down real soon for another visit! He is ready to go to the shop with his daddy!!!
We have pictures on here now for everyone to see Bailey! We can thank her Uncle Chad for that. The pictures on here are of round 2 in the hospital. She has her Cinco De Mayo hat on that she got at the hospital!
Happy Mother's Day to all the moms!!!!!!!!
Take Care and God Bless, Derek, Crystal, and Bailey
The exciting part is that we are halfway done! Just hope we are able to stay on schedule and come home. We hope to get Dalton back down here real soon! We are really missing him. He will be so used to being with the grandparents, he probably won't want to come home when we get there. I'm sure when daddy says lets go to the shop, he will be ready to go!!!
Happy Mother's Day to all the mom's!!!!!
Take Care and God Bless, Derek, Crystal, and Bailey
Only two more rounds to go, time has not been as slow as what we thought it would be. We are just hoping and praying that all stays on schedule and she continues to do as well as she has been. She keeps asking when can we go home to Kansas? We are ready just as much as she is!
Thanks for all the Love and Support!!
Derek, Crystal and Bailey
Bailey's Aunt Sherie and Uncle Chad have been here to help us out, and Bailey has enjoyed having them. She gets them to play games with her.
We just hope that everything stays on schedule, and we get home towards the end of July or first of August. Bailey is really missing everyone at home and can't wait to see everyone.
Thanks for the love and support!
Derek, Crystal, and Bailey
God Bless!!
Derek, Crystal and Bailey
We had to go in on Saturday to check Bailey's counts,and they said she was doing great. We don't have to go to the hospital until Tuesday. It is nice to have a couple of days to rest and catch up on things. She will go back in on Thursday night to start round 2 of chemo. Her Aunt and Uncle are coming to help us out during that. We are excited that they will be coming soon.
Thank You for all the love and support!!
Derek, Crystal, and Bailey
Bailey's little brother got into Memphis today with his grandparents. We were very excited to see him, as it has been 8 weeks since we have seen him. They will be here until Sunday. We hope to be able to do some fun things while they are here.
Thanks again for all the love and support!!!
Love, Derek, Crystal, Bailey and Dalton Kistner
The Easter Bunny had to get some things for Sunday, so we went shopping for awhile. Bailey said she hoped the Easter Bunny would find her in Memphis. We told her we were sure that he would.
She is still not eating much, every once in awhile we'll get her to try something. But, she never eats to much. At least she is trying, and has not gotten sick for quite sometime now. We are very glad of that. She is very excited that her brother is coming to visit us this week. It has been 6 weeks since we have seen him. It feels like forever. It has been very hard, we think about him all the time.
Thanks again to everyone who has dropped us a note, and keep us in your thoughts and prayers. We couldn't do it without the love and support.
Happy Easter to everyone!!!!!
Derek, Crystal and Bailey
Today everything was o.k. that she didn't need any transfusions. We don't know what each day will bring. It was nice to be done early today.
Thanks again to everyone for keeping up on Bailey's caringbridge and writing notes. She looks forward to looking at them.
We are doing really good with the tpn, which is the nutrients she needs through her central line. She still has not ate much food since last week before chemo started. She wants to, but she is afraid she will get sick. It is hard to convince her to try something. We will keep working on it. Will be back tomorrow for more updates.
Yesterday she wanted to go out and play some games, so that was nice to see her up and going. I think she is getting tired of the hospital scene. She asks me everyday, when are we getting out of here. Ha!! We hope that the next three rounds go this well. They put her stem cells back in her on Tuesday and she did very well.
We want to Thank everyone for all the thoughtfullness and prayers, we couldn't make it through all of this without the love and support of family and friends.
Bailey got sick to her stomach a couple of times, but she has slept most of the day. It has been better than what we expected the first day to be. Tomorrow she will have one more chemo drug and then Sunday is just a day of rest. Monday she will get her stem cells back, should be a fairly simple procedure they told us. We will probably be in the hospital most of next week, but not real sure. We will try to keep everyone updated as best we can.
We have to go to the hospital tomorrow morning for labs, and then the rest of the day free to do whatever miss Bailey wants to do. Then tomorrow night she will be admitted into the hospital, and we will start chemo Friday morning. We are hoping and praying that everything will go just fine. She has been feeling really good, so you hate to see them feeling bad again.
We will update when we have gone through a day or two of chemo to see how things are going.
Her grandma and granny came in on Saturday, so she has been entertaining them. Showing them around everywhere. They came to help us out while Bailey was in the hospital, so we don't know how long they will be able to stay with us. Bailey is missing all of her friends and cousins very much. Dalton is staying with Aunt Sherie right now. He is having a big time up there. We are really starting to miss him alot though. Hopefully, he can come down soon. He doesn't want to talk to us when we call him, so he's doing o.k. We are ready to get things started so we can get back to Kansas. Be back later!!
This afternoon the race car driver John Andretti came to see all the kids at Target, he signed pictures and handed out big boxes of cherrios. They also had some characters dressed up to play with the kids. Then we had pizza for supper.
We have to go to the hospital on Friday for a couple appointments, then we don't go back till Sunday and she will be admitted for the first round of chemo. We will be so glad when we get through the first one, so we kinda of know what to expect. We will probably be in the hospital for at least 7-10 days. Be back later! Thanks to everyone for checking in and leaving a little note.
We had her follow-up MRI and spinal tap yesterday, that's always very scary. We met with the doctor today and he said everything looked great. YEAH!!! So glad that is over for now. We will be admitted on Sunday the 30th to start chemo, very anxious to get started and hope that everything goes o.k. Both grandma's are coming on Saturday to help us out through the first round. Little brother will be going to stay with his Aunt Sherie, he is very excited about that. I know he is missing us, but he never wants to talk to us when we call home.
We took Bailey to the zoo on Sunday, she really enjoyed that. It was a very nice day to be outside. We are getting settled here in our little apartment. It is a very nice place and we are lucky to have it. we actually have the next couple days free, we don't have to go back to the hospital till Friday to meet with the bone marrow doctor.
Will be back later to update!
She is doing better today, still pretty uncomfortable, but at least she is more awake and has ate some food today. She hasn't been eating the best. They took her bandage off of her back today, didn't hurt her, but she still didn't want it done. They got enough marrow for 2 rounds of chemo. So, hopefully we'll only have to go through this one more time.
We are hoping tomorrow to get to move to the Target House, which is an apartment that we will be staying in for the next 4 months. At least it will feel a little homey. Will be back again tomorrow.
We have to be at the hospital at 6:30a.m. tomorrow(Wednesday) and they will take her back to surgery at 7:30. They said it would take about an hour, and she will be pretty sore from it. But they said kids do so well, better than we would. I think she is a little concerned about it, just what she has heard the doctors tell us. But she knows that she will be asleep and won't know it even happened. She is not quite back in the groove of things being back here. She won't talk to anyone, being shy!!!
We hope to get moved to the Target House by the end of the week! We are ready to get settled somewhere.