History

Journal History

Friday, March 18, 2005 11:21 AM CST

Oh my precious babygirl, has it already been a whole year since the last time I saw your beautiful face, some times it seems like an eternity has passed, then others it seems like only yesteray that I kissed you goodbye, I miss you every minute of every day, I don't think I will every get over losing you, you were such a big part of who I am. I know that you are in a much better place and it is selfish for me to want you back here but I would give anything for that to be possible.
We went to see your Aunt Steph and Uncle Justin and of course your cousin Chelsy, she reminds us of you in so many ways, her expressions look just like you, it is sometimes hard to look at her and see you in so many ways. The good news is this time she actually liked us this time, she came to me and your PaPa several times on her own and didn't scream like crazy when we picked her up, in that aspect she isn't like you, your favorite place was on our laps, and she isn't real thrilled with that, but she is getting there.
I think sometimes of moving out of this house because of all the memories, but then I can't even think of being anywhere else but here, because of the memories. I feel like if I left here I would some how forget all the wonderful times we had here. I see you in every room here, there is something funny you did, like climb in the dryer to play, or putting all the trash in the commode, or getting stuck on our bed, so many wonderful things happened here. We got a new living room suite and it was painful to get rid of our old couch cause you spent so much time there toward the end, that was the only place you would sleep for a long time, in fact you were there till you couldn't tell us "no" anymore. Just know that I am always thinking about you.

Monday, January 3, 2005 9:37 AM CST

Oh babygirl I am so sorry that I didn't update on Christmas, I just couldn't bear the thought of writing then, we went to see your cousin Chelsy she reminds us of you so much, it is unbelievable how much you two act alike. And so very difficult to see you in her and not to have both of you with us. I know you had a wonderful day where you are at, I just wish it was with us, I miss you so much. I don't think the pain will ever go away and I am also afraid that it will.
I see commercials for St. Judes Childrens Hospital and I wonder if we did every thing that we could, I pretty much drive myself crazy with questions, I sometimes wonder if we had taken you there if it would have turned out differently. Your Uncle Jim tells me not to do that, and I know he is right but still, I feel somewhat guilty wondering if we did every thing that could have been done. Always know that we love and miss you every single minute of every single day.

Sunday, August 1, 2004 8:55 AM CDT

HAPPY BIRTHDAY, BABYGIRL!!!!!

Are you having a big party today? How I wish you were here. Do you remember your last one, you were in the hospital and we decorated your room with balloons, and we had all kinds of presents and cake, and you finally ate some ice cream for your PaPa, but you just wouldn't eat anything else. I so miss you and your giggles and hugs. Your PaPa wants to go out to the cemetary today, but I am not sure I want to, I hope you don't mind, I just miss you so much and to see that little headstone just really hits home that I can't hold you or see you and I just don't think I can do that today. I don't update this much any more because it just hurts so bad, I remember all the other ones and how we were so sure that we had beaten this and to write now is very painful. Did you know that your cousin Chelsy is crawling and is pulling herself up and walking around furniture now? Your Aunt Steph is selfish though she says maybe when she is a year old that I can bring her home for a week. I think she is being pretty mean so if you can just let her know how much I would like to have Chelsy with us for just a little bit.

Monday, June 7, 2004 9:14 AM CDT

It has been almost 3 months since you left us babygirl, and not a minute goes by that I don't think of you, wondering what mischief you are up to, and what fun you must be having, I miss you so much, I wonder if I will ever get used to not having you here with me, most of the time I try to pretend that you are just with dad and mom and that we will see you soon, I can't bear the thought of not seeing you again.
It is so strange that life continues, it should have stopped. I think people get uncomfortable when I talk about you, I don't know if it is because they don't know what to say or if they think it would be easier if you were just forgotten, or if it reminds them that life is way to fragile, and if you could leave us then their child could also, but you remain my favorite subject, you filled my days with laughter and happiness, and to be truthful frustration, but what 3 year old wouldn't?
I know that you are happy and well and I am so glad that you have the peace you so much deserve, I just wish it could have been with us. Maybe one day I will understand and be able to live with only memories, I miss holding you and playing peek-a-boo and all the kisses that you gave me.

Sunday, May 16, 2004 12:54 AM CDT

Oh I don't know where to begin. Wanted to let everyone know that we are surviving one day at a time, sometimes one minute at a time. I don't want this to be a sad entry, but most days that is all I feel, I am so empty without our little baby girl, some days I feel like I am losing my mind. Steve and I were talking the other day, and wondering if Amanda could talk now, she was saying a some words and she could really let you know what she wanted, but she was behind on talking. Isn't it kinda of silly what things you think of? We were outside and still have her swing set up, it is so old it is getting dangerous and Steve said we really need to take it down and besides Amanda has a golden one upstairs, I asked do you think she still needs her hand held to to down the slide? We both agreed that she could do it on her own now!! Sometimes I think I can feel her with me if I could just reach out I would feel her in my arms but she is just out of reach. I don't know how to keep going without her, I miss her so much!! And I know there wasn't anything else we could do to cure her but I keep thinking maybe we just missed something and had we found it she would still be here. Why her?? Why couldn't she have been healed??

Monday, April 5, 2004 8:04 AM CDT

Has it been only 3 weeks since we last saw your beautiful little face and kissed you goodbye? It seems like a lifetime ago. We miss you so much, but we know that you are playing and eating lots of chipies and M&M's!
I know that you have been around here also, just letting us know that you are still loving us. Your PaPa was talking about you to a friend and they saw a white dove, you know they are pretty rare around here, that was the first one your PaPa had ever seen, and then the day we said our good byes, your little cousin Chelsy (who is 4 months old) wrapped her little arms around me and hugged and kissed me the way you used to. Did you show her how to do that? It was just what I needed!
I don't know what I am supposed to do now, without you running around here, life is so empty, I know everyone wants and loves me but you needed me so much and now you are not here, I just want to not be here.
I was cleaning out my flower beds the other day and was remembering when you helped me pull the dead flowers off only you pulled the live ones off, do you remember? You were a rotten little stinker, oh how I would love for you to be here to do that, I promise I won't get mad at you this time!
PaPa is talking about taking your swing set down, we were so afraid you would get hurt on it, it was so old, your daddy and aunt Steph used to play on that, but you had so much fun on it, I don't think he is ready to that yet though, just talking about it. We have everything just the way it was when you left, so if you feel like coming to play it will be alright.
Just remember we love and miss you like crazy around here.

Wednesday, March 24, 2004 5:05 PM CST

I think I am ready to do this. I have a few quiet moments before everyone gets home. On Thursday, I did not want to go to work, but I felt like I had to, I had some training that I felt like was very important, I told my boss when I got there I wanted to take the next 3 days off because I felt like the time was close, all during the day different people would ask how Amanda was doing and each time I would tell them that I really didn't think she would make it through the night, I came home for lunch about 3 and when I went back I gave her my usual kiss and hug and thought I heard a rattle, but I went back. About 7:30 Michael came into the store and I was thinking please be getting something other than me! I always knew deep in my heart that she would go when I wasn't at home, because she knew that I couldn't handle it as much as I wanted to be with her. She went quietly holding on to her Uncle Steven's finger, kind of strange since she hadn't grasped anything in weeks, but she really loved him alot, they used to play football in our hall way and she would laugh and giggle and have a great time with him, so it is only right that her last gesture was to let him know that she loved him. Her service was beautiful and there was so many there I didn't think the chaple would hold everyone, in fact from what Ashley told me there was several standing in the back, she was much loved and will be much missed. Thank everyone for there words of comfort. They truly help.

Thursday, March 18, 2004 8:05 PM CST

Amanda earned her wings at 7:25 tonight. She is at peace.

Wednesday, March 17, 2004 9:25 AM CST

As I have been saying for weeks now, I don't think Amanda is going to be with us in body for very much longer, she can't swallow now, and how long can a person live without food or water? She hasn't had any pain meds in about a week now. And she is unresponsive to touch or sound. It is breaking my heart into a zillion pieces watching her and remembering her the way she was, how can we go on without her here? I know she will be in a far better place then we can imagine, but that really doesn't help much. I keep thinking that I will wake up and this has all been just a horrible nighmare! Someone please pinch me! Wake me up!

Monday, March 15, 2004 8:45 AM CST

Every thing is going the same here I guess, Amanda was having a little difficulty swallowing yesterday, she got a little choked when taking her meds. I haven't tried today yet, I am a little afraid to.
I want to thank Jackie, I am going to see today about that monitor. You are a very special lady.
I am so exhausted, I can't think of anything to write. I really don't think we have much more time with her, but I have been thinking that for weeks now.

Thursday, March 11, 2004 6:43 PM CST

Just wanted to let every one know that nothing much has changed, she is still hanging on, every time the Hospice nurse comes out she is she thinks it is getting closer but she doesn't know when, it is pretty difficult to tell since all her organs are healthy except the one that controls them. Her heart rate was about 140 this morning, it seems to stay pretty high these days, I wonder how much more it can take? I really appreciate all the words and prayers that are sent this way, they really do help. Just knowing that there are people who care and understand is helpful. I am so exhausted right now that I really can't think, so with that I wish every one a peaceful night.

Wednesday, March 10, 2004 7:56 AM CST

How much longer?????? That is what we keep asking ourselves, her little heart just keeps beating and beating and she just keeps on going, for what ever reason God put her here for. It is so not fair!! To see her just fade a little each day, and know there is nothing that we can do, I picked her up yesterday and she weighs next to nothing and didn't even have the strength to put up any fight, sometimes when I would pick her up she would put her arm around me she couldn't even do that. How can God expect us to have the strength to do this, I can barely function these days, I don't know how much more we can all take and still survive. And I don't know how Amanda is doing this her self, does she have any feelings left? Is she scared? Does she have any idea of what is happening? I am so frightened for her, I don't want her to be in pain or scared. And I can't tell if she can hear us or see us when she does open her eyes. IT'S NOT FAIR AND IT'S NOT RIGHT!!! And I am getting so angry, to see her like this. How can God let her go on and on and waste away a little bit at a time, he could be merciful and either heal her or just take her home. Why won't he do that? WHY? WHY? WHY?

Friday, March 5, 2004 7:19 AM CST

Just wanted to let everyone know that Amanda is still hanging in there. She is sleeping just about all the time, we can get her to eat yougurt in her sleep and drink a little bit through a syringe, I thought yesterday, I would try a bottle, and she took a very little bit through that, any suggestions on how to get her to drink would be appreciated. I feel like we are all walking on a tight rope around here and any little thing is going to push us over off. We all try to get away for a little bit but the thoughts is always there, is it going to be today or tonight? I truly don't know how much more we can take and not go crazy, it is so unfair to watch her and remember her laughing and playing and now she can't even roll over by herself. She has lost so much weight, she is literally nearly skin and bones, how much more is she going to have to go through? What is the purpose of this? I am so angry right now that I could just punch something over and over and over, but I don't think that is going to help any. I get up every morning and put my hand on her chest just to see if she is breathing and I do that dozens of times a day, and I feel her little heart just beating like crazy and wonder, how much longer can her heart beat that fast and not just explode?
I really keep expecting to wake up and find this to be an extremly bad dream, and that she will be up and wanting to play or just be held for a moment, she used to love me to hold and pet her and hug her, now I am almost afraid to pick her up. I so want our Amanda back the one that was always smiling and playing, and would get upset if we scolded her. Always the bubbly little girl, and never stayed upset for very long.

Monday, March 1, 2004 12:10 AM CST

Amanda seems to be doing about the same, her breathing returned to normal and she is still sleeping nearly all the time. We put her on our kitchen counter to wash her hair Saturday night, and she still has fight in her, she tolerated us washing her hair ok, but when I started washing her face, she got real mad and grabbed my shirt and tried to pull herself off the piece of foam we had there, it was kind of funny. She has started moaning alot, it doesn't seem like she is in pain, I guess it is just her brain sending funny signals. I went to eat with some friends after work last night, I had forgotten what it was like to just sit there with people and not talk about death and what to expect prior to that and not talk about illness, I had so much fun, just laughing and talking about everyday things, it was a wonderful time. I think everyone needs that every once in a while. I feel more relaxed today then I have in a very long time.

Tuesday, February 24, 2004 9:38 AM CST

Well after a very good weekend, things are not looking to good, I don't think, Amanda slept all day Monday and in the afternoon, she started breathing pretty funny, she would take 3 breaths then stop for about 45 seconds then start over, she has been doing that all night, Hospice came out and checked her over, and everything sounds good, when they got here I was holding her and her breathing seemed to be kind of normal just real slow. Like I say I just stay confused, we think it is the beginning of the end but then again we thought her kidney's were shutting down and they seem to be fuctioning just fine as of right now. Who knows what will be going on in a few minutes, hours, or days? While I am of sound mind(?) I want to thank everyone for their words of encouragement, they keep me going. There are some awesome people in this world, I just wish we had met some other way.

Monday, February 23, 2004 10:22 AM CST

I am not sure where to begin, things are going pretty good here. Amanda stayed awake all of Saturday and most of Sunday, she is eating pretty good, I have been trying to figure out what to feed her, I would think she would get tired of penut butter and jelly but that is about all we can get her to eat, Ashley fed her a banana and she liked that, and I got her some oatmeal last night and she ate alot of that. I just worry about what to feed her, she never was a big meat eater.
She is one amazing child, one day you think she can't last much longer because she hadn't eaten or drank in days, and the next she is awake and kind of alert. It seems like when she is awake she is staring at someone that we can't see. I sometimes wonder if she is even really aware that we are here? She has let us hold and cuddle with her some this weekend but she really doesn't look at us, I am not sure what is going on. The further we go on this journey the more confused I get. I have learned so much from her, but I just don't understand why this had to happen to her, and to us. If God wanted to show us something or teach us something he could have done it differently, I know I am not supposed to question him, but that is awful difficult to do at this time. I am so angry, I just want my beautiful little happy girl back, I haven't seen her smile in weeks, I am not even sure she could if she had anything to smile about, she has not been able to talk for awhile, the last word I heard her say she pointed at some one we could't see and said no. After that she quit talking or smiling so I am guessing that the tumors have affected that area, she has a high squell when she is upset, like I said I just stay confused as to what is happening inside her little head.

Saturday, February 21, 2004 9:45 AM CST

I am sorry that I have not updated in a while but as the saying goes no news is good news. She is still hanging on for what ever reason, she hasn't eaten much, but still drinking. I asked her nurse if we should get something like pedisure or a nutritional drink and she told us if it made us feel better, but that Amanda just didn't require the food or nutrition like we do, I got her some Carnation Breakfast Drink and it has taken her two days but she has drank nearly a glass of that. We got up this morning and she is laying in her bed, awake and just looking around, she has stayed awake for several hours, you would think that is good news, awake and not in pain, but anymore, when she does something different it just plain scares me,why is she doing that is something fixing to happen? I wish I knew what is going on in her head, and what she is thinking. She is letting us hold her more, I don't know if she is just to weak to fight us of if she wants us to, at this point I don't care, I just want to hold and cuddle her, and for what ever reason she is letting me.

Thursday, February 12, 2004 8:15 AM CST

Just wanted to let eveyone know that Amanda is still hanging on, she still wakes for a bit and eats a few bites and drinks, but for the most part she sleeps, which is good, she is not having much pain, we usually just have to give one dose a day. I came home from work on Tues. and guess where she was?? On PaPa's lap I couldn't believe it!! She stayed there for about 2 hrs, his hinney was asleep, but he wasn't about to put her down. I don't blame him, I wouldn't either, she let me hold for awhile yesterday. We had some good news also, my brother in CA is coming in this weekend! He got in touch with Angel Flight and they are flying him in, so he can see her before she passes, we are so amazed at how God works, he didn't have to money to make 2 trips, and they had a donor that wanted his frequent flyer miles to go to someone in the military, Jim is in the Navy. We can't wait to see him.
On a sadder note we went to the funeral home yesterday and made all the final arrangements, that was pretty hard, but it is over now and we can just enjoy her as much as possible and not have to worry about all that stuff when the time comes. I hated picking out the coffin, they are so tiny and there shouldn't be a need for them, it makes me so angry and I truly don't know who to be mad at but it is there, I try not to be I try to bury it, I know that is not good either, but I don't know where to focus it on, and I don't want to yell at my family, it is not their fault.
I want to thank everyone of you that signs the guest book, it makes my day, every morning when I get up I check to see who has been here, and your words of encouragement help so much. Amanda has touched alot of lives, and she continues to even now and forever, I pray each night that she will be healed so that she can continue to so. I wish I knew the meaning of why she has to do what she is doing. It's just not fair!!!!!

Monday, February 9, 2004 7:50 AM CST

Well not alot to report today, Amanda is still sleeping alot and when she is awake she just stares into space for the longest time, she was doing that yesterday and she put her hand out and said "no" I wonder who she is seeing? I like to think it is the Angels come to guide her home, actually I hope it is Jesus come to heal her, but I fear that is not the case. We think her kidneys are starting to shut down, I won't go into any of the details but there are signs that other parts are starting as well. The only good thing is that she doesn't seem to be in any distress or pain, she doesn't take just a whole lot of pain meds, I am so very thankful for that.
My friend Linda is making her dress and she is going to look like a little angel, I just wish she were making it for Easter. I want to send a special Thank You to her, she is a special lady. Also her daughter Kerry is much like her, she talked to friends of theirs and helped raise much needed funds, another very special Thank You to her and all the people that helped someone they had never seen or met, there are some very awesome people in this world. I had lost alot of faith in people until this happened to us and so many have reached out to us with words of support and encouragement. Thanks to all who have visited and left messages, they help us make it through another day.

Sunday, February 1, 2004 10:05 AM CST

I really don't know where to start with all the stuff that has been happening around here. Lets start with the good things...where Steve works started a donation to help with Amanda (much needed) and it was a tremendous success, they also did that where I work and also a success, it is getting a little tight around here supporting 3 extra people, so I really thank each and everyone that contributed.
I got home from work on Thursday and on the way I was getting kind of upset thinking about the ways that Amanda has changed because of the pain and meds, but when I got here she was sitting up and talking and playing around it sure did my heart good to see her that way, she still wouldn't let anyone touch her but we are learning to deal with that even though it breaks our hearts, we just want to hold her and try and comfort her and she won't let us, anyway I think that was the calm before the storm, when I got home on Friday, she was crying and hitting her head and the pain med just wasn't working. I called Hospice and they came out with some different stuff and stayed till she calmed down, which was about 3 in the morning, they are wonderful people!! She never woke up yesterday, and she is still sleeping right now, though not as deep as it was, when we touched her yesterday she never moved, and today she will move a little when we touch her, so maybe she will rouse up some, though if she is in pain, she will be knocked out with the oxycotin. I would rather her be asleep and not in any pain then awake and crying.

Wednesday, January 28, 2004 8:27 AM CST

I just wanted to let everyone know that Amanda is doing as well as can be expected at this time, she is taking codene now for the pain not a lot but it does make her sleep more, I am already missing the old happy Amanda, the smiling giggling,always on the move Amanda, I feel so sad for the new Amanda, when she is awake most of the time she just lays or sits there, sometimes she will peep out and tell us to "chill" or smile but most of the time she doesn't want anyone to hold or touch her and she just sits there with a sad look on her face and it just breaks my heart. The nurses say it it a good thing that she doesn't understand what is happening but I wonder if she does and just can't express her fear? She told me the other day that she had a "boo boo" and I asked her where and she pointed to her head. I had to hold back my tears, I sure wish my kisses would fix that boo boo. I feel like my chest is going to explode most days and if I start crying that I will never be able to stop. We try to maintain happy faces when she is awake. How am I supposed to do this? I hurt so bad, why does anyone have to face this? Why can't they find a cure for this? I try so hard to not be angry because I am not sure who to be angry at. No parent or grandparent should have to go pick out a little bitty casket and know that their precious baby will be laying there, it just isn't fair or right.
On the bright side (I guess) she is still eating real good. I made chicken and dumplings last night and she loved that, then I decided I wanted some chicken soup (that a special lady brought over) and she ate quite a bit of that. I really like to see her eating, so many times she couldn't because of the chemo, and she still likes her chipies (potato chips) and M&M's and Dr. Pepper, Yeah we have taught her the right junk food habits!

Wednesday, January 21, 2004 12:10 AM CST

Just a quick update, we took Amanda to see her neurosurgen today, even though we figured it was a waste of time, and we were right, we saw the MRI pics and her right side is just about covered and it is starting to push her brain over, there just isn't anything that can be done, he said he could take out maybe 50ut without chemo or radiation that the rest would keep on growing and there wasn't anything that they can do.
So far she isn't in to much pain. I think the hardest part right now is watching her smiling and playing(a little) and just being herself except for walking and knowing that she is so ill.
I don't know where I am going to get the strentgh to do this. I have read everyone's pages that have done it but I still don't know how to let her go and for me to go on, I try to let God take over but the pain is still there and I keep hoping and praying that a miracle will come along. Please keep her in your prayers that is all that will help.

Monday, January 19, 2004 10:46 PM CST

Well we got some bad news today, Amanda had an MRI today and it showed 4 new tumors growing in different places and is not even a good candidate for surgery she would probably die on the table. I just can't think of what tell everybody, I wish it was better news. I will update as often as possible to let yall know how she is doing. Please pray extra hard for our presious baby, that either she will be healed or that she goes peacefully.

Wednesday, October 1, 2003 9:59 AM CDT

I am sorry that I have not updated in awhile, but as the saying goes no news is good news! Amanda is doing very well, no hospital stays in over a month and tolerating her chemo very well, she goes to see her regular pedi. dr. today and I expect no bad news other then she is small for her age and maybe a wee bit behind on some things such as talking, but you know who can blame her, look at all that child has been through, she can take her time doing whatever she wants to do!! We had the fair here last week and I think I created a monster, I took and her dad and it didn't take her long to realize how much fun the rides were, she got a little upset when she couldn't ride something cause she was to little, but she rode everything that she could, it was so much fun watching her. I am still trying to get over to my friends so that I can put some new pics in, I know everyone is waiting. She only has Oct and Nov. for chemo then another MRI, I hate those things, I am trying to stay positive but I kind of wish we could wait till after the holidays to do it. We all get so nervous!!

Monday, August 11, 2003 9:31 AM CDT

I am so sorry that I have not kept this updated very well, so many things are going on. Amanda went back into the hospital on July 24th, she had just finished her round of chemo and got a fever blister that just went wild and went into her mouth and throat, we didn't think they would ever get rid of the blisters, she quit eating and they finally put a feeding tube in her nose on Wed the 30th. and finally let her out this past Wed. She still has the tube but hopefully she will get it out this week as she is starting to eat very well. I will try to get some pics in here this week. I don't have a scanner and have to go over to a friends to do it and with her in the hospital and me working like crazy I just haven't had the time. I did go to see Stephenie (our daughter) over the weekend and she is 5 months and we found out that she is having a baby girl, every one keep her in your prayers for a healthy baby and good weather around Christmas so MiMi can go up there to see her newest grandbaby.

Monday, July 14, 2003 7:22 AM CDT

We took Amanda to San Deigo on Wed. It was a scary week leading up to that though, she had a bacteria in her central line and was in the hospital from Sat. till Tues. afternoon, we decided to take the line out on Mon. and they did it Tuesday morning and finally let her out that afternoon. She did very well, she was very cranky and tired that night but got up the next morning in a better mood. Now to the fun stuff, I thought she might either be a nurse or dr. being around them so much but I have decided that she will probably be a pilot, she just loved the plane ride so much, she was laughing and looking out the window just about the whole time. We took her to Sea World on Thursday and she loved the shows, she had so much fun watching Shamu and they had a dog and cat show that she thought was so funny! Then we took her to the zoo on Friday and she liked to watch the animals, so we took her to the petting zoo and that scared her soooo bad, they had goats and sheep and she wouldn't touch them, I had her sitting on my lap and a goat came up and put his head next the hers like he was loving her and that was so cute till she turned her head and saw him and started crying. I really think she liked Sea World best, I kind of wished we had gone there twice instead of the zoo, but that was ok, she did like to watch just not touch. Friday we took her to the beach, the water there is to cold to really swim in but she played a little in the sand it was kind of chilly so we didn't stay long. I think she was really glad to get home though and sleep in her own bed, she hadn't been there in over a week. I know I was, she rode in the stroller and I had to walk and we walked a very long way every day. We all had lots of fun and made lots of memories and are all very glad to be home again.

Sunday, June 1, 2003 7:53 AM CDT

GREAT NEWS!!!Amanda's MRI came back clean. There is no sign of the tumor!! So the next step will be to start back on the Timador next week I would imagine, she sees her oncologist on the 9th and he said we would probably start back then.
We also have gotten our plans for CA, we will leave here on the 9th of July and go to Sea World on the 10th and the zoo on the 11th then have a free day and come home on the 13th. We are all very excited.

Monday, May 26, 2003 10:26 AM CDT

I am sorry that I have not updated in awhile. Amanda is doing fantastic!! She is walking and starting to say new words and we are trying to potty train UCK!! No really that is going so so, we all know how well everyone likes that. We have had visitors for that last couple of weeks, first of all my brother came for a visit and Amanda really enjoyed playing with him, she finally decided to let him hold her the last day that he was here, she can get kind of peticular on who holds her sometimes, then our daughter came to visit, who Amanda loves very much so she really enjoyed that one, and may I add, she is also expecting, her due date is Dec. 21, so everyone please keep her in your prayers that she has a healthy baby, she is kind of worried considering all that Amanda has gone through.
Amanda's next MRI is May 30, we are all kind of holding our breaths this one should really show what the raditation has done to the remainder of the tumor. I am expecting a clean one as usual, but it is still worrisome, you know what I mean.
We are all very excited about our trip coming up, I don't think it can get here fast enough for any of us. Just some time to not think about MRI's or cancer or anything, you know what I mean?

Monday, April 28, 2003 11:26 AM CDT

Well I wanted to share the great news with everyone, Amanda decided to start walking Friday, I kept asking everyone if they were sure they wanted her to walk again, it was kind of nice to be able to put her on the couch and know that she wouldn't go anywhere, now we are back to chasing her all over the place. No really that is great news and we are very happy to be chasing her again!!

Saturday, April 19, 2003 9:25 AM CDT

Great news!! Amandas MRI showed no tumor anywhere, so the dr is figuring there is a little swelling where they radiated and that it will go away with the streiods, and everything will go back to normal. Thanks for all the prayers and thoughts everyone sent this way.

Thursday, April 17, 2003 9:00 AM CDT

We have a little bad news, Amanda quit walking last Friday and the dr's don't know why, she will walk if someone holds her hand, but if we let go she sits down and starts crying, she won't drive her car or try to get off the couch to get her toys, everything else is normal, she doesn't seem to be in any pain or anything. The dr. said since we decreased her streiods it may be swelling so we have increased them, he also said that it could be the tumor growing or it may have moved into her spine. Her MRI is on Friday the 18th and they couldn't move it up since she has to be sedated. So everyone please say an extra prayer for her.

Wednesday, April 9, 2003 12:05 AM CDT

We have gotten some wonderfull news from Make-A-Wish, they are going to send us to San Deigo and they are going to send us to the Zoo and Sea World and also maybe to the Wildlife Preserve. I am so amazed!!! We are so excited!! And the best news is...is that all of us get to go, we were not sure if we would get to all go or not but we do, so that is fantastic!!!

Monday, April 7, 2003 10:47 AM CDT

Today was the last day of radiation, we are finally through!! They gave her a big party and they gave her so many things like clothes and toys and then they gave her an electric barbie car, I was just so amazed!! So now she is off the chemo for 6 weeks, and then we will see where we go from there, it just depends on what her MRI shows up. So yall keep up the prayers that it comes up clear.

Monday, March 31, 2003 11:26 AM CST

Well we are starting on our last week of radiation and still no ill-effects, Thank God!! She is going strong. We are keeping head shaved because she lost all her hair in the back and on one side so it looks better that way, I am hoping we only have to shave it one more time and then hopefully it will start coming back in. She seems to be learning as she should like adding new words and remembering things that she had already learned so maybe no brain damage from the radiation, of course I know that that might not show up for a long time. Right now we are not to worried about the long term effects as I am sure all of yall can understand.

Thursday, March 13, 2003 10:55 AM CST

I know that alot of people have visited our web page and we really appreciate it. I have a favor to ask of any one that visits this page, Amanda has been granted a wish from our make-a-wish, she is wanting to go to the San Deigo Zoo and to meet her great uncle and his family, what we are asking is that anyone that can please make a donation to the make-a-wish foundation their phone number is 806-785-wish and their address is 3407 73rd St. Lubbock, TX 79414. Any one that can it would be very muchly appreciated.

Tuesday, March 11, 2003 9:10 AM CST

Well we are starting week 3 of radiation, and so far no ill effects from either the radiation or the chemo, she did start losing her hair, and last night was the final episode, she started getting hair in her food, so after supper my daughter and I cut her hair and then tried to shave the rest, she is pretty much bald again, but she looks so cute that way. We contacted make-a-wish and they came out last week and interviewed us, and it looks like we may be going to San Deigo, to the zoo and to visit her great uncle and his family!! I think she will really enjoy that, she like animals so much. Anyway if we go it will be in June or July, I will let everyone know what is going on. I am so thankful that she has not been sick, though some days I do wish she would get tired!! I had forgotten how much energy it takes with a 2 year old around the house. I am wearing down fast!!

Tuesday, February 18, 2003 8:50 AM CST

Tuesday, Feb. 18, 2003 Well things are going as planned, we went for radiation treatment yesterday and the machine went down and they didn't want to keep her asleep any longer so we went home and went back today, and everything went well. We are giving her Temodar at home, it is kind of scary you have to use gloves to break apart the capsules and plastic cups and spoons to mix it with something, we found pineapple juice works real well, then after she takes it we put all the stuff in a biohazard bag and take it to the drs. to dispose of, like I said kind of scary that we are putting this stuff into our baby and we can't even touch it. So far no ill effects from it, we give her Zofran before so maybe that is why she is not getting sick. I hope it continues!! Please everyone continue to pray for her as this is pretty much our last hope. She is an amazing little girl, I can't put into words how strong and determined she is to be just herself. I don't believe she even realizes that she is ill. Just 4 days after surgery and she was like she was before, if that had been me I would still be crying and not wanting to do anything!! But not her, she is like any normal 2 yr old into everything!!! And I am not complaining at all. She will be in radiation for 6 weeks.

Thursday, January 23, 2003 at 08:12 AM (CST)

Thursday Jan. 23, 2003 Amanda is doing very well, her left eye is still swollen but it looked like it is going down, she is still a bit mad but who can blame her?? Anyway, we have decided to try radiating the tumor bed and a little chemo to help boost it, nothing radical though just something like Vincristine, so tommorow they are going to put another broviac in. Steve just came in and said it looks like she might get to come home today, which is good in a way, it just means we will have to get up about 4:30 in the morning to have her at short stay surgery at 6. I kind of wish they would just let her stay another night. Please keep her in your prayers, she is such a fighter. I hope we are doing the right thing, I just am not ready to give up the fight yet, though. I wonder just how much more we will have to put her through before we just have to give up and let nature take its course?

Thursday, January 23, 2003 at 08:12 AM (CST)

Thursday, January 16, 2003 at 11:17 PM (CST)

Thursday, Jan.16, 2003
Well the dreaded news that we have been sorta waiting to hear finally came today. Amanda had her regular 3 month MRI on Wednesday, and there is new tumor growth, so on Monday the 20th they will operate again and hopefully remove up to 99% of it and then I guess chemo again, and then maybe she will make it to her 3rd birthday, by which time they will feel she is old enough for radiation, if it comes to that. I was so hoping and praying that was the end and she would be ok, she is doing so well you can't tell that anything is growing, she is playing and into everything. The only thing different is her sleeping, she is starting to tire very easily and sleeps for long periods of time, like last night she fell asleep around 8 and then I had to wake her up a 8 this morning to go to the dr. and her naps are starting to last for 3-4 hrs. other then that she is a normal 2 yr. old. It is very difficult to think of her as being sick. I will keep everyone posted after surgery to let yall know how it went. Please keep her and her dr. in your prayers as we know they work wonders.

Monday, October 28, 2002 at 03:22 PM (CST)

Oct. 28,2002 I can't believe that I have not updated in a month!! Time passes so fast. Amanda is still doing fantastic, and her visit in Ft. Worth went very well, they don't want her back till April. They will do an Echo and chest x-ray then, and after that they want to see her once a year. I hope and pray that she continues to do well. I will try to update more often just to let everyone know that she is a typical spoiled little girl. The only sad news is...is that we dropped her off at her dads in Abilene and that she isn't living with us any more. It is very quiet around here now. Maybe we can finally become grandparents and spoil her rotten and send her home. That will be alot of fun!!

Thursday, September 26, 2002 at 09:51 AM (CDT)

Thursday Sept.26,2002 Amanda went in for her MRI on Tuesday, and so far no tumor is found, it was clear!! Thank God for his miracles. There is scar tissue and a cyst but that hasn't gotten any bigger. She is doing extremely well, a typical 2 yr old, driving us crazy!! But that is ok. She is getting into everything and her BIG temper is showing. She was such a sweet baby through all this and now it is like she is making up for it. She gets so mad at the littlest things. But I do believe she has every right to scream and yell to her hearts content. I am hoping that soon she will be back to her normal happy self, she will cry at the littlest things and she gets so frustrated when she can't do something, like I said a typical 2 yr old!!
I do want to thank every one that has visited and prayed for her, we couldn't have gotten this far without all the prayers and thoughts sent our way. God Bless each of you.
There is some sad news though, Michael moved to outside of Abilene, about 150 miles from here and Amanda will move there after we go to Ft. Worth at the end of October. I don't know how we are going to deal without her here all the time. Maybe we can become real grandparents and take her for a week and spoil her worse than she already is and then send her home. That will diffenantly be something different.

Friday, September 06, 2002 at 09:28 AM (CDT)

Friday Sept.6,2002 Amanda went to her dr yesterday, and she is still doing ok. She looked like she had lost a lot of weight, but she had only lost maybe an ounce, her dr said it might be the steriods finally getting out of her system but that if she had lost any more at her next appt. we would discuss putting her back on Magase (appitite increaser). She goes back the 23rd of this month and then she has her MRI done on the 24th. Just 3 weeks to worry!! She is doing so well, we really don't expect any changes but you know how this thing goes. I will let everyone know what it says as soon as I know.

Wednesday, August 07, 2002 at 01:47 PM (CDT)

Wednesday, Aug.7, 2002 Amanda went to the dr. yesterday and she is still doing good, she has lost a little weight but not to much the dr just said to make sure her appitite was ok. She also said that the dr's in Fort Worth had a big meeting about doing raditation and they do not recommend it because of how big the tumor was and how much of the brain they had to take out, the rest of her brain is making up for the lost part but if they radiate they are going to get that part that is making up and there is no way that the rest is going to make up for that. So they just recommend praying and hoping that it doesn't come back for a few years.

Wednesday, July 24, 2002 at 12:21 PM (CDT)

Wednesday July 24, 2002 Not alot happening at this time, Amanda is doing fantastic, walking everywhere, and she has learned how to open drawers, what a thrill, there is no telling what she will come in with. The only bad news we have had is that she is going to have to wait a year from transplant to start her immunizations again, and more than likely she will have to start over from the beginning.

She did give me a scare Saturday, she woke up real cranky and wouldn't eat or drink anything, and I thought oh no!! When I came home at noon for lunch she had taken a little nap and had ate and was drinking, I guess she was just tired and didn't feel like doing anything. I realized how little it takes to make you feel like you are right back at the beginning of this nightmare.

Monday, July 08, 2002 at 10:13 PM (CDT)

Monday, July 8,2002 We took Amanda to the Dr. today, she is doing very well, she is a behind on her shots, she still needs her 15 month ones, we made the app with her pediatrition then her oncologist tells us that she didn't think she could have them until she was post-transplant 6 months, but she would talk to the transplant nurse and let us know. We also talked to her about radiation to the tumor bed, and she said she would investigate it and discuss it with the brain tumor board at the hospital and also her dr. in Ft. Worth. So as soon as I hear anything I will pass it on. She is still not sure about the radiation on one so young, but we will see what happens.

Monday, June 24, 2002 at 02:36 PM (CDT)

Monday, June 24, 2002 GOOD NEWS!!! We got the results of the MRI this afternoon, and there are no signs of tumor, I was just a little bit worried. Dr. Oblender did say there was cyst growth and that it was a little bit bigger than last time, but since it wasn't causing her any problems then they weren't going to mess with it, just keep their eye on it. We feel so fortunate. I wish they would pronounce her cured, but I don't guess that is going to happen any time soon, if ever. She is doing so well, just like nothing has ever happened. I sometimes wish I could see into the future, I wonder if that would do any good? I just can't imagine that thing growing back!! And how do you go day to day without worrying? We will just have to enjoy what we have and try not to think to much about the future.

Friday, May 31, 2002 at 07:34 AM (CDT)

May 31,2002 Amanda is doing so good, she has gained a pound and dr. said if she kept that up we would have to put her back on the Dr. Pepper diet, sometimes there is just no pleasing her!! Gain weight but not that much, come on is there no end!! Anyway her counts are doing so good, that next week she won't have to have them done, just go in for a weight check. Thank goodness. I hate to see her get poked, but she does so good, I am amazed at this little girl, I have learned so much from her courage. No matter what they do to her she soon has a smile on her little face and a kiss for her Mi-Mi. She finally decided she like walking better than crawling and now I have to be very careful or I trip over her, she follows me everywhere. I am sure talking is next, she babbles continusly and sometimes we can catch words. Her next MRI is June 21, I will be so glad when that is over with, I really don't think anything will show up, but you just never know.

Tuesday, May 21, 2002 at 07:25 AM (CDT)

May21,2002 There is not alot happening right now. Amanda is doing very good. She is eating alot and the dr. told us that the Dr. Pepper she is drinking could be suppressing her appitite (wish it would do that to mine!!) so we finally got her to drink kool-aid, I don't know if that will help or not we will just have to wait and see. Her next MRI is June 21st. I hate to know this far in advance, it scares me, the wait and see part of this. Is it going to come back? And if it does what do we do then? How are parents supposed to deal with this. We are really enjoying having her home though, she is such a joy most times, she does have a temper though!! Gee I wonder why??? She had her blood drawn a few days after she pulled her catherter out and she didn't make a sound other than giggling a few times, I bet she thought I better not cry cause I caused this myself!! She has another dr. appointment on Thursday and she will have to have her blood drawn again I wonder how she will do?? She is really starting to walk pretty good, still a little unsteady but she is getting there, is this a good thing? It is pretty hard to keep up with her just crawling!!

Tuesday, May 14, 2002 at 09:53 AM (CDT)

May 14, 2002 Amanda is doing very well, her counts continue to rise, and she is now allowed outside without her mask, and that made her very happy. I was very surprised at how well she did with that. She very seldom tried to take it off and I know it was very aggrivating as they don't fit right on a small child like that. She did pull her catheter out yesterday, and man was she mad!! I imagine it hurt just a little. The dr. decided to leave it out as they are through with chemo and all they are using it for is to draw blood. Another no win situation, she is more comfortable without it but now she will get poked every week for blood. She is eating pretty good but all she will drink is Dr. Pepper and tea, no milk or juice. I don't know what to do about that, I guess her taste buds are not back to normal yet, and they don't taste good, I just hate giving her all that caffine and sugar, though it doesn't seem to be affecting her any. I guess it will be ok.

Friday, May 03, 2002 at 09:06 AM (CDT)

May 3,2002 Sorry that I haven't updated in so long, computer problems and all that!! Anyway we got Amanda home April 22, YEAH!!
She has gotten so spoiled, we are having a time with her, but we are not complaining to much. It is so good to have her home!! We are going to her oncoligist once a week to have her blood counts done and so far they are climbing on up there. We had a little scare Sunday night she wouldn't quit crying and was grabbing her head, so off to the ER we went, they did a cat scan and nothing showed up and she finally calmed down, we still don't know what the problem was, but as long as it wasn't the tumor coming back we can handle anything else. She has lost a little weight and her dr. told us that if she lost any more that we would have to discuss putting a tube in her nose, but she is eating and drinking real good, so maybe it is just her coming off the TPN. He did tell us that a little weight loss was to be expected with that. So keep up the prayers that we don't have to do the nose thing, can you imagine a 21 month old with a nose tube, I don't think it will be very good.

Wednesday, April 17, 2002 at 08:40 AM (CDT)

April 17,2002 Amanda got out of the hospital on Monday like expected, they gave her a "break-out" party, they put paper streamers across the door and she breaks out they also served cake and punch. I was kind of sad that I missed it, but they took some pictures, I hope they turned out good. She is at the Ronald McDonald House now and is doing very well, she is starting to eat and drink, they still have her on TPN at night though. She goes to the doctor this morning for a check up and to see if she needs platlettes and then again on Monday before we bring her home. I guess the dr took me serious when I told him we didn't want Granpa staying with her to long lol!!
I can't wait to get her home, and get back to some sort of normal life, I know we will have MRI's and blood tests and all that but it will be here and not Ft. Worth. I am also kind of scared about what to expect next. I am so afraid this will come back.
Some of the other parents are writing the Oprah show to try to raise awareness about this if anyone who reads this would write her maybe if enough people write her she will do a show about it. All you have to do is type in Oprah and it will take you to her web site. We would really appreciate all the help we could get on this.

Saturday, April 13, 2002 at 10:08 AM (CDT)

April 13, 2002 Amanda is still doing about the same. They have started giving her some medicine to increase her appitite and it is working she ate a whole viena sausage yesterday for lunch!! They are saying she may get to go to Ronald Mcdonald House early next week and if everything goes ok she may get to come home around the 22nd if her counts are coming up the way they should.
I have a suggestion, it seems like we hear of no research into this type of cancer, I was wondering what everyone thought of writing our congressmen/women and trying to get some funding for research, what does everyone think of writing at the same time?
Let me know maybe we can do some good!!

Monday, April 08, 2002 at 10:10 AM (CDT)

April 8, 2002 Well me and Michael made it back home yesterday. I am glad to be back home but I really feel guilty when I'm not with Amanda, I know Connie takes very good care of her, but since I feel like her mother I guess I feel like I should be with her all the time. She is doing fairly well she still wont eat or drink other than a few bites or sips but she is on a TPN drip so she is getting all her nutrients and stuff, they were talking about putting a tube down her nose to feed her hoping that it would stimulate her appitite but since she is still throwing up some they don't want to do that yet. I keep telling her she better start eating and drinking or they are going to do ucky things to her and she just smiles at me!! Like they haven't already!! She is such a happy baby, they will come in to change her dressing on her central line and she just lays there the nurses tell me most of the other kids have a fit and that she is unusual in that she tolerates whatever they do to her and just smiles at them when they are through. I told the dr that she had to come home in 2 weeks because Steve would be staying with her after that and if he did, she would be so rotten that we couldn't stand her, and that he would teach her some very bad habits. I also asked Steve last nite since she calls me MiMi does that mean she would call him PiPi?? He wasn't to fond to that, he says she is going to call him Duuude!!

Thursday, April 04, 2002 at 11:04 PM (CST)

April 4, 2002 Sorry I haven't been able to keep this updated the computer is down where I am at. The nurses have been kind enough to let me use one at their desk. Amanda is doing the same as before, she has done so well, we are so pleased, her counts have not started dropping to bad yet, but it is expected to. Michael and Connie will be here tomorrow and I will be home on Sunday. There is no new news so don't be mad at me. If there had been any adverse reactions I would have made Steve do this. Anyway keep up the prayers they are working!!

Wednesday, March 27, 2002 at 09:16 PM (CST)

Wednesday,March 27,2002 Hi this Steve filling in for Cheryl. Amanda is doing real good.Her counts are still to low to start next round still at the Ronald McDonald house.she goes back to the doctor Thursday for blood count hopfully they will be up.Just hanging out til time to back to hospital.

Wednesday, March 20, 2002 at 08:59 AM (CST)

March 20, 2002 We have talked to Connie several times yesterday and they finally moved over to the Ronald McDonald House yesterday afternoon, I imagine that we will need a U-Haul truck when we come home to move all her stuff she has gotten, I would like to thank all her special friends that have sent her toys, they were very appreciated, it is so difficult to keep a baby entertained in one room. Not that I am complaining!! I would much rather be exhausted than her being sick and not feeling like playing. She should be out of the hospital till Sun. or Mon. then back in and depending on her counts they will start with her last round. I sometimes think this is the easiest part, because after all this then we just wait and watch and probably go balistic every time she gets sick. I wish there was some way of knowing what was going on in her head every minute. We are staying positive that she will be the miracle baby and beat this, but there is days that it is hard to stay that way. I want to yell and scream and throw a big fit!! It is not fair or right that our little babies have to go through this. She is such a trooper, when she does get sick she still has a smile for everyone and when she feels better it's like she never was sick. It just amazes me!! A special friend got us a digital camera so as soon as we get there and Steve can get back we will have some new pics for everyone. I would like to thank her here for her very kind gestures through all this, you are a very special lady.

Saturday, March 16, 2002 at 10:06 PM (CST)

March 16, 2002 Steve talked to Connie today and the dr said Amandas counts were up to 1800 and that they would probibly go over to Ronald McDonald House Wed. for a few days and they are talking about starting her next round of chemo on Sunday. She is doing so good. Maybe it will continue and she can come home the middle of April instead of the last. I am probably getting my hopes up but that sure would be nice. I hope she does this second round as well as she did her first, oh no!! the baths start again, I better take extra clothes this time lol!!

Wednesday, March 13, 2002 at 01:45 PM (CST)

March 13,2002 I just talked to Connie and Amanda is still doing good. Her counts have dropped to .1 so she is very suseptible to getting sick but other than that she is doing fine, no rashes or vomiting. She is just getting more spoiled by the day.

Monday, March 11, 2002 at 09:35 AM (CST)

March 11, 2002 Connie and Michael came in Saturday and me and Michael came home yesterday, she is still doing good, she did develop thrush but they are giving her antibiotics and gave her some platletts last night. I am so happy there is no bad news!! It did break my heart to leave her, I was nearly crying, I know she is in good hands though and I will be checking on her all the time, not the same thing though. She has recieved so many new toys in the mail I want to thank everyone that has sent something, it is so kind!! and she really enjoys getting things in the mail. The nurses there think she is Miss It, she will blow them kisses when they leave, and most won't leave till she does, it is so cute. She is already spoiled rotten when she gets home it is going to be even worse (if thats possible!!) Once again thanks to everyone that is praying for her it is sure helping!!

Friday, March 08, 2002 at 07:27 PM (CST)

March 8, 2002 Nothing new to report, Amanda is doing so good. she did get sick this morning, but after she threw up it was like nothing was wrong, she was playing and driving me crazy!!! It gets kind of difficult to entertain a 19 month old in one room all day!!! Not that I am complaining it could be much worse. Any way Connie will be here to relieve me tomorrow and she will stay till the 23rd. Then either I will come back or Amanda will come home for a few days then we will both come back. Every one keep the prayers up, they are working, and we always seem so surprised when they do!! We call it lucky or what ever when we should just say our prayers were answered. I can't remember if I told everyone or not but her MRI last Friday is still not showing any cancer. Thank God!!!

Wednesday, March 06, 2002 at 10:43 AM (CST)

March 6, 2002 Amanda had her stem cell transplant yesterday, and she did very well so far none of the ucky side effects of the chemo have come up, keep your fingers crossed that she flies through this. She is even eating a little but not drinking much, so last night they put her on what is called TPN it is an IV drip that supplies all her vitamins, minerals, and everything she needs. Today they are giving her some red blood she is right on the verge, so they decided to go ahead with the blood. I will keep everyone updated, so far nothing but good, oh!! the preservative they used in the stem cells smell horrible, I have to escape from the room every so often just to get some fresh air!! The nurse said it only lasts for a day or two, thank goodness.

Monday, March 04, 2002 at 02:42 PM (CST)

March 4, 2002 Amanda is doing very well, she finished her chemo treatment on Sunday and just got sick (throwing up) once on Sat. and once on Sunday, she had quit eating but today she ate most of her eggs and some of her ham for breakfast, but then wouldn't eat any lunch, still 3 or 4 baths a day, so after her 2 bath (and my 3rd shower!!!) I stepped out and just got back in when the nurse told me she had thrown up, so I guess that is why she wouldn't eat lunch. Her transplant is tomorrow and then its a wait and see what happens till the next one.

Saturday, March 02, 2002 at 06:19 PM (CST)

March 2,2002 We made it to Cooks here in Ft. Worth and Amanda got her central line in yesterday and did very well in the operating room, thank God!! She took her first round of chemo this morning and so far it has not made her sick. She has been up and playing and getting into all kinds of mischief!! I will keep everyone updated as I can.

Wednesday February 20, 2002 9:26 AM CST

Feb. 20,2002 There is not alot happening here yet. We took Amanda to the Dr yesterday and she is doing fine, she is eating and has been a little stinker this past week, we had gotten pretty lax on keeping doors closed because since her surgery she has been keeping pretty close to us, not venturing down the hall, well this past week she started and man is she into everything, I have gotten her out of the bathroom, playing in the commode (UCK!!)
and out of Stevens room playing with the cat food (I don't think she ate any lol!!). Anyway she is pretty much back to her old self, she still isn't walking, but when we get back from Ft. Worth we will have a therapest come check her out. We found out that we need to be in Ft. Worth on the 27th so wish us luck it is coming up fast and the closer it gets the more scared I get. A friend loaned us a digital camera so as soon as I figure out how to use it I will put some new pics in, have a little patance I am not very computer literate!!!

Wednesday February 13, 2002 8:21 AM CST

Feb13, 2002 We took Amanda to the dr. yesterday, she is doing good, hasn't lost any weight, which is really amazing since she hasn't been eating. She just started a few days ago. She had been throwing up and diareha, thanks to the rotovirus. We also changed our minds about the chemo. The dr told us there are only 2 more rounds left, which will be done in Ft. Worth and stem cell transfusion. Anyway if we didn't do it we are looking at losing her in less than a year (maybe) and if we do it then we may buy her a few years (maybe). No difinite answers!!! So now we are waiting for a call from the dr. to let us know when we go. She could be there for a least a month and maybe three. I wish the dr. had some good answers, its all maybe. We started feeling like if we didn't do it then we had not tried everything, and we were feeling guilty about that, but also guilty about putting her through what she will go through with the chemo, it is so much more intense than what she has had, and she gets pretty sick with that!! It seems like a no win situation. Steve believes she will be healed, he says he keeps hearing someone (?) telling him to keep on. I hope he is right.
I know alot of people are looking on this web page, so let me take a few minutes to explain our family. I am Cheryl, Amandas Grandma, Steve is her Grandpa, Michael is our son and her Father, they both live with us. There is also our daughter Stephenie, and Steves son Steven and daughter Ashley.
her mother has not been around since she was a few weeks old. She is more our daughter than granddaughter, and we really realized that when she got sick. Maybe that was Gods way of waking us up, we don't appreciate what we have till we are faced with losing it. Thank you everyone that has visited our page, I wish we had more answers and less questions. The dr says this is a rare cancer, but it sure seems like a lot of kids have it. That is why she dosen't have any answers there just isn't any statistics for this especially for a girl this young. I will let everyone know when we go to Ft. Worth, I will go first to get her settled in and then we will play it by ear as to who goes next, Connie (my mother-in-law) or Stephenie, Steve doesn't have any time off till April, and Michael doesn't have any for awhile since he just started a new job right after Thanksgiving.
I will try to keep this updated while we are there, maybe one of them will do it if I tell them what to write, they are leaving this to me,as they think they can't write (or something).

Sunday February 10, 2002 10:47 AM CST

Feb.10,2001 As you know Amanda went in the hospital Monday for blood and platlets, well she didn't get out till Friday, her platlets were so low they had to give her 3 transfusions, we thought she would get out on Wed. but the little stink ended up getting a fever and throwing up so they did some blood cultures so she couldn't go home till they came back, anyway she has a rotovirus, it causes vomiting and diareha.

I don't know how we are going to handle what we know is going to happen. I have read so many web pages and seen the strengh of so many other parents, I wish I knew where they get it from. I know God has his own plans for our little Amanda but I just wish he would let us in on the plan. I hate to think of her suffering and I don't know what to do. Sometimes I think we should continue with the chemo, even knowing it won't do any good. I feel like we are just giving up, I hate to see her so sick though. I know we made the right choice in that. I really feel helpless and out of control!! We will see the doctor on Tuesday to discuss all the things that will be coming up like pain control, which is real hard to imagine considering she looks and acts perfectly healthy, she is even starting to eat again!! I just wish I could see into the future, and predict what and when.

Tuesday February 5, 2002 7:53 AM CST

Feb.5,2002 We have come to a very difficult disission, Michael has decided to stop the chemo, she is still sick from the last one and is in the hospital now getting a blood and platlet transfusion. The doctor really dosen't think it would be helpful to continue. So we are just going to love her and make her days as happy as possible for as long as possible. I think that if she is meant to be here she will be healed wheather or not we do the chemo, and if she isn't then it dosen't matter what we do she wont be healed. Just keep her in your prayers and send positive thoughts our way

Thursday January 31, 2002 8:08 AM CST

Jan. 30, 2001 Some great news finally!! Amanda came home this morning!! They decided to wait till she goes to Ft. Worth to put her catheter back in. That is what we were hoping for, she will probibly go in about 2 or 3 weeks, so she has a little free time. The only bad part is that when they have to draw blood right now they are going to have to poke her. Maybe they won't have to do that very often in the next few weeks, I know they will when we go in on Friday, but after that I don't know. They are still telling us she could be in Ft. Worth for 3 or 4 months, we are hoping that is not a continous time, we will find out later, I guess.

Tuesday January 29, 2002 10:00 PM CST

Jan. 29, 2002 Some more bad news, is there ever any good news, they took an x-ray and Amanda central line is coming out so they pulled it out, so that means they will have to put another one in before her next chemo. It wouldn't be so bad, I don't guess, but this makes the 4th one she will have had. I know this is pretty common, but some of those were just mistakes, the first one they put in a single line and had to replace it with a double, then they took it out to put in the catheter for her first stem cell harvest, which didn't work, and it was totally unnecessary, so they had to put another one in, now this one came out. We are hoping they wait till right before her next treatment before they put another one in, it would give her little chest time to heal a little, maybe. The drs in Fort Worth thought I was nuts when I asked them if they were going to take out her catheter, I told them the ones in Lubbock did and they wanted to know why, they claimed they were afraid of infection, but the ones in Ft. Worth said the stem cell catheter is only in for a few days and it wouldn't matter. I guess the doctor here likes to torture babies. I saw the tech that oversaw Amanda at UMC the other day and he acted like he had never seen me before, and to top it all of he had been drinking, I know what you do on your own time is that but the way he was it was bound to affect his work the next day. I am not real happy with those people over at UMC, I doubt they could do anything to please me at this point.

Sunday January 27, 2002 1:24 PM CST

Jan.24,2002 The drs. wanted to give Amanda a hearing test, and they had to put her to sleep, they gave her two doses of clorahydrate should have put her, it didn't, they gave her 50mg of penabarbetol should have put her out, it didn't, gave her 20mg more and finally after 5 hours of having a very drunk baby, she passed out. They gave her the test and the next morning we found out the test was not readable, so we went through 60mg of penabarbetol and 1 1/2 hrs of a very drunk baby she passed out, and they got a good (?) test. We found out her right ear is in good shape she hears very well out of it, but she can't hear out of her left one, that was a little discouraging, but overcomable. I know that is not a word but it works!!
Jan.27, 2002 I was hoping that she would do better this time on chemo, but she has stopped eating and drinking and this morning she was running a 100.3 temp. so I don't know when she will get to come home, today is her last day of chemo, and as soon as she starts drinking again and not running a fever she can come home, it's a waiting game again.

Thursday January 24, 2002 8:33 AM CST

Jan.24,2002 Amanda just left to go to the hospital. She is feeling real good, finally got over the virus, and is eating good, I feel guilty putting her through this, I hope it works. I'll let you know how she tolerates the chemo this time, I worry that each round will be worse than the last.

Tuesday January 22, 2002 9:19

Nov.1,2001
We took Amanda (15months) to Covenant Childrens Hospital because she had been running a fever and throwing up. They discovered a tumor in the front left side of her brain, she had emergancy surgery that same day. They origanlly thought it was a P-NET. She came home on Nov.6,2001
On Nov. 16th she started chemo, it didn't make her as sick as we thought it would, but she did quit eating or drinking for awhile, she was in the hospital for a week that time. She went to University Medical Center on Dec 20th for a stem cell harvest, it did not work, they used the wrong size catheter and it kept collapising, we found out later she was the first baby they had tried to do.
Jan 4,2002 Another round of chemo and she developed a virus, they also flew her to Ft. Worth for the stem cell harvest. It worked great!! Also found out while we were there she didn't have the P-NET but an Atypical Teratoid Rhabdoid Tumor, much worse then the other, the only good news (??) is that when they operated they got all of the cancer, her MRI's are not showing any cancerous cells right now.
Jan 21,2002 Found out today Amanda goes back into the hospital on the 24th for another round of chemo, we were hoping to keep her home for awile, she was in for 2 weeks this last time

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