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Monday, May 24, 2004 10:51 PM CDT Hi everyone. Sorry its taken me awhile this time to update, I've just been very busy!
The school semester is over for me finally!! But I did very well and I am proud of myself. I will not be going back until August when my nursing school begins. I am excited about it too !
Last Friday, the 21st, was a year since Chassidy's transplant. Time is really flying. It will be one year on July 27th. Only about 2 more months. I absolutely cannot believe it. Where does time go?
Other than that, not too much other exciting news in my life. Skylar is doing fine as well. She's anticipating the school year to end soon as well. She's ready for summer. I have to say that both of us are doing pretty well. Just trying to stay motivated. Trying to still exercise to help.
I am also excited that I am going to be an aunt for the very first time in January. My brother announced it a few days ago!
I feel that it is about time for the webpage to come to a close. Its been almost a year now. I will probably do one more update or maybe two and then close. I know you all are disappointed but you can always email me.
Until the next time... May Continue to Bless and keep you all. Love, Tonya
Tuesday, April 13, 2004 9:07 PM CDT No I haven't been lost. Just waiting on some news before I made another entry.
I RECEIVED MY ACCEPTANCE LETTER FOR THE LPN PROGRAM!!! I have been doing my general studies this year to get them out of the way in case I was accepted. There were over 200 that tested to get in and they only chose about 40 so I am honored! It will begin in August and then take about 11 months to complete. I can then go on to obtain my RN after I complete the LPN program. I am very excited and NERVOUS!!
Yesterday I went back to St. Louis Children's to visit. I felt I was ready and I really wanted to. Actually the visit went well. I got to see everyone except one that I really wanted to see. I don't regret going at all. I stood and looked in Chassidy's old room. She was in room 40 quite a bit and was in it the last month of her life except the last week when she went to PICU. It was hard looking in there. It hurt. But I could also see her just as plain rolling up and down the hall in her wheelchair like she always did when she felt good and was able to come out of her room. I felt close to her there today. I didn't really want to leave but I knew there was no need staying. I miss her so, so much. Such a void yearning for my child inside of me. I know it will always be there.
I had a dream about her the other night and she told me to hug her tight. I couldn't hug her tight for so long because she was so sick, sore, and fragile. I also asked a question pertaining to where she'd been (Heaven) and she replied "mama I can't tell you." I know that Heaven is such a mystery to all of us here and she still wouldn't even give me a hint!! But that's Chassidy- she would keep a secret. I am glad God allowed me to see that in my dream because it made me feel better.
Well, I have to wrap it up. I have things to do for school tomorrow! Unti next time- God Bless All Of You and please sign the book!
Love, Tonya
Monday, March 1, 2004 9:30 PM CST I guess its about time for my monthly entry so here it is!
I have been staying very, very busy with school. My anatomy class is a nightmare but I'm hangin in there with an "A" so far and its almost midterm! My other classes are not as intense, but they are also going well.
I will find out the first week of April if I was selected for the nursing program beginning this fall. I have a good feeling.
Skylar is doing pretty well. Staying very active and busy with school. She deals with Chassidy's death the best she can I guess. She doesn't talk about it much, but she will say sometimes she misses her or whatever. I imagine in her little mind it is very hard to comprehend what happened.
As for me dealing with it... I don't know if its getting any easier or not. Somedays I think it is and then bam- it hits me hard again on another day. I woke up two mornings ago with a bad dream about her and cried for a long time.
There is a part of me that feels the need to go back to the hospital. I don't understand why, maybe for closure. But its a really weird feeling that I have. I didn't even want to think about going for so long, but now I have this yearning to go back. I am also scared, but feel its something I need to do. Its almost like Children's Hospital was a dream, or should I say nightmare, in my life. Do I need to go back for a reality check? I don't know. But I don't think I will be at peace until I do go back.
Well I must end here and get some things done. Free time does not come easy around here anymore. Please sign the book if you have visited. Thanks!! Love you all.
Tuesday, February 3, 2004 10:26 AM CST I know everyone wants to know how I am doing after last Thursday. I guess okay... You know some days you really don't know.
Thursday was a very hard day. The day before and the day of. I went to the cemetary and placed new flowers with a close friend of mine. My mother then came and took me to lunch. Skylar and I wrote on 2 balloons and let them go. She thinks Chassidy really got them "up there."
I also went to Matt's benefit dinner. I had mentioned about Matt before. He is in 8th grade here where we live and was diagnosed with the brain tumor. He underwent chemo and is doing great. He is even back at school. Well, I went to the benefit on Chassidy's birthday. As I was walking up to meet him and his family, I could see him from the back. The hat and the little fine hairs (from the chemo) just really caught me off guard. So many memories of Chass flooded me and I could barely hold it together to talk to his mom. I apologized to her and she said Matt was used to it by now.
School is definitely keepin me very busy this semester. I am glad in a way though. That's about all I have time for in my life. Of course I make time for family events.
I am going to keep this one short. Thank you all so much for coming by and signing!!
Love, Tonya
Tuesday, January 6, 2004 1:07 PM CST I haven't been on this site since I last updated. I felt it was time for an update. I know you all wonder about me. I just finished reading all the guestbood entries. Thank you all for stopping by and signing. It really means alot.
Well, the holidays were just sort of "blah" I guess you'd say. I was not into them at all. I did the shopping thing for Skylar's sake but if I had my way I wouldn't have done any of it. I visited her grave on Christmas. Reality really hits when I read her name on the headstone. Still very hard to believe all of what transpired since last year actually did happen. I am glad the holiday season is behind me now.
I am so proud that I made it through this past semester with 3 A's and 1 B. I made an A in CHEMISTRY. I deserved it though because I definitely worked at it diligently.
I am looking forwad to starting another semester next week.
I will find out for sure if I am accepted in the nursing program by April. I am confident.
I have thought about Chass so much (like I never don't) lately with all the Michael Jackson stuff going on. I'm sure she's up there cheering for him and saying "those people just want money!" I can hear her now. She had a true passion for him.
Leukemia and Lymphoma society sent me a fundraiser to ask the school to do in honor of Chassidy. Its just brining in pennies next month. The schools that raise the most get a pizza party or something. She would have been going to the junior high this year. I took the fundraiser material out there today. The principal also assured me they would do a memorial page in this year's yearbook for Chass. As I left the school, I looked back at it with tears running down my face because Chass is supposed to be in that school right now. I know she's in a better place with our Lord and Savior but my feelings a grief are still normal. Its funny how people who never lost a child can tell you what you should feel like.
There is also a student at junior high who is a year older than Chassidy who is at St. Jude's with a brain tumor. Please pray for Matthew. I think his website is caringbridge.org/il/matthewhape. The last I heard he was doing good. But you know how things change so rapidly with cancer. The area we live in Southern Illinois is a high risk area. It has to be because of these plants around here that produce chemicals that are used in atomic bombs.
Well, I am closing now. I will be back in a month or so.
Please keep me lifted for January 29th. That day is going to be very hard for me not being able to have Chass here with me to celebrate her 13th birthday.
Love, Tonya
Wednesday, December 10, 2003 4:55 PM CST I know everybody is probably wondering where I've been!
Well, life has been very busy lately. School keeps me very busy and I am looking forward to the end of the semester next week. I have done well and I am proud of myself considering my daughter just passed away in July. I am looking forward to next semester. I won't have CHEMISTRY so that should make it better. Chemistry has been a challenge but I've worked hard at it.
My Thanksgiving was fine. My small family gathered at my house. Of course there was a void and everyone felt it.
There's a void everyday in my life now and there will always be for the rest of my life. I am not real excited about Christmas, but Skylar keeps me motivated making sure I decorate and stuff.
January 29th is the day I am so dreading because that will be Chass's 13th birthday. Holidays are one thing but a birthday is personal.
I went to the grave the other day to put a Christmas wreath on. I was fine until I turned into the cemetary and I started crying alot. I've gotten to where I do that now when I go. I guess its reality.
I hope everyone has a great Christmas. I will try as best I can. At least I have my little one to help. Please sign the book! Love you all.
Monday, November 10, 2003 10:19 PM CST Hi everyone!
Just posting something new for everyone while I have the time.
Things are still going "okay". I stay busy alot with school of course. I am proud of myself for keeping my grades up this semester. I am looking so forward to next year in the nursing program. So not only that keeps me busy but I've also joined the gym and I am working hard to see some results by next summer! It keeps me going as well. I feel so much better physically and emotionally. I even can get up earlier of the morning without feeling tired. I'm so proud of myself for taking the initiative to do it.
Skylar is now in Girl Scouts and we are looking foward to doing alot of fun stuff with them. She is doing pretty good as well. She did really well on her report card last week. I'm proud of her.
Tomorrow she doesn't have school because of the holiday so we are going to do some running around just the two of us.
I still miss my girl so much of course!!! I think about her all the time. In every thing I do there's something of Chassidy. I'm sure that will be that way forever. I still have my times where I think I can't go on without her, but thanks to all of your prayers God reaches down and pulls me back together so I can go on. The thing that haunts me so much is what she had to go through. I wish all those memories would fade away, but they won't. I know she is not going through any of those things now, but it still hurts no matter how I try to think about it. I hope I can finally find some peace about that part of it so I can move on.
I am not looking forward to the first Thanksgiving, the first Christmas, and definitely not the first birthday (Jan 29th) without her here. I think my whole family is dreading it. Its just such a void for us. I hope we can set around and tell good memories of her during those times instead of being sad all the time.
Until next time... Love you all & Please Sign Our Guestbook!
Friday, October 31, 2003 10:52 AM CST Happy Halloween everyone!! I am trying to keep it as happy as possible around here. I actually am doing ok. Of course I still have many, many moments that I look at things of hers and cry for awhile. I know that is a part of healing. I know I will always, not matter how much I heal, have a huge void in my life.
I have a picture of her from last year at Halloween. We were in the hospital. She dressed up as a hobo! It was the funniest thing ever and the staff all got a kick out her. They always did anyway because she was just that type of kid. She had on a halloween shirt, some "bubba" teeth (those ugly buck rotten looking fake teeth), I painted her face black, and an old sock cap. They took the kids trick-or-treating around the hospital. She was soon tired out though because of the chemo. But she had a great time making people take a second look when they seen her.
Skylar is a "cute" witch this year. Her outfit is purple and black hat and purple hair. She's got a black robe and black boots. She wants me to paint her face white with purple eyeshadow and lipstick. She will have a good time.
Skylar is a very blessed child and just doesn't realize it. She has me all to herself and doesn't want for anything. A healthy child- and I hope it stays that way. Her personality is much different from Chass's though. Skylar is not as loving as Chassidy always was. She's not free with her hugs to my grandmother and others as Chassidy always was. But I know that no two children are the same. I can't make Skylar be Chassidy. She is unique in her own way.
Well, I am still in school and doing pretty good. I've already signed up for classes for next semester starting in January. I am looking forward to them. I can't believe in a month and a half this semester is over already! It is flying.
This past Monday the 27th was 3 months since Chassidy left. I just can't believe she is still gone. I keep thinking one day she'll come in the door or I'll see her on her bed. She was literally "GONE TOO SOON" as I've often used the song in expressing her death. The 10 months of battling the horrible disease was very long, but her life of 12 1/2 years was Gone Too Soon.
My aunt told me the other night on the phone something that I hadn't thought about. She said "Tonya, don't feel guilty over anything. Chassidy is not sad about anything. She is a whole now. She is looking down saying Mama, please don't be sad." I cry everytime I think about Chassidy saying that because I know she is. Its so hard for me not to be sad though. That is one of the best things someone has said to me since she has passed.
Well, I still want everyone to sign in and let me know you've stopped by. I really appreciate all who do!! I love you all. Your support means more than you really know to me.
Love- Tonya
Sunday, October 19, 2003 7:33 PM CDT Ok, well its been about 2 weeks so I decided I need to write something.
I really appreciate everyone's thoughts and comments about me closing the site. I have considered, and I won't close it for awhile. I really do appreciate everyone caring enough to remember to check on me and Skylar and most of all remember Chassidy.
As for us, not much has changed. I just had mid-terms and everything is still going pretty good. School is flying by.
Skylar is doing well in school. I had a parent-teacher conference last week, and the teacher bragged alot on her.
Skylar stays busy playing outside with the neighborhood kids most of the time. She does take pride in studying her spelling words all week long and has been making A's. She enjoys reading her weekly story to me often also.
We have went to Chassidy's grave 2 times this week. About 6 weeks ago I put a little plastic flower arrangement on her grave that said "daughter". It was nothing fancy or special, but it was to me. It was gone. Nothing else was gone but it. I don't know who would've took it. It was stuck in the ground far enough not to blow off. Also, the cemetary is not really that big to where I couldn't see it sticking up on someone else's grave. I just don't appreciate whoever took it off. I went back to get another one and they won't have anymore until MAYBE Christmas if then.
I went "yard-saleing" yesterday. I passed by our local hospital for the first time since Chassidy's death. She spent a little time out there, mostly to be flown out to St. Louis. I just didn't deal well with it and had to go home. I miss her so much. I hate the memories that haunt me of what she had to endure. I hate that she didn't stay here with me. I know she's much happier now. But we are selfish in our human nature. I want her here with me. I was listening to the song "I Can Only Imagine" I'm not sure who its by, but its a spiritual song and he talks about he can only imagine when he sees Jesus how he'll respond, whether he'll dance or shout hallelujah, etc... And I just couldn't help but to wander what Chassidy thought when she felt no more pain or suffering and when she saw Our Lord and Saviour- HER HEALER face to face when He welcomed her in.
I can't even write this without it tearing me up.
I want to go back to St. Louis to see some of my friends at the hospital but I can't. If I couldn't deal with our local hospital, then I can only think of how it would be to see Children's and to not be able to see Chassidy there.
I hate this grief. I hold things in for so long and then it makes it worse when I do finally let it out. I call her name and hope she'll answer. I just want to touch her and laugh with her just anything. I hate feeling this way. I want it to go away but I know it never will. I made a collage of many of her pictures and its hanging in the hallway. I could just sit and stare at it all day and night and never move away from it.
Well, I need to get off here and study for a chemistry test tomorrow. I love you guys! Please continue to sign in!
Monday, October 6, 2003 8:43 PM CDT I just wanted to say that this time of year is going to be pretty hard for me. Even though I just celebrated my 33rd birthday on this past weekend, tomorrow will be one year that Chassidy was diagnosed. I remember a year ago tonight I was with her at our local hospital. She had to stay overnight until we could get to St. Louis the next day because she was so sick with the strep plus full of leukemia that we didn't know about yet. I was up all night with her because she was running a very high fever. I remember walking the halls and crying all night. Scared to death. I guess I had good reason to be huh, even though I didn't have any idea as to what was ahead of us.
My step-father passed away from cancer last tuesday. The funeral was Saturday. Another crappy thing around my birthday. My mom is doing fairly well. She lost her 2nd husband to cancer 4 years ago also.
School is going well. Skylar is doing well. We are trying to be "normal" as much as we can.
I am contemplating closing our site. I know not many people visit anymore. I will probably leave it open a few more weeks and then close.
Love and God Bless, Tonya
Wednesday, September 17, 2003 10:47 PM CDT Hi everyone, just checking in to say I'm still alive.
Since I last entered a journal, I have made another "A" on my second chemistry quiz. Today was an acutal TEST over 3 chapters and I think I did pretty well on it as well.
Yesterday was a very crappy day emotionally for me until last night, I went to English and the first paper I turned it I made a 99 "A" on and I was the highest grade in the class! I was very pleased. My other classes are going well also but no major grades yet to report.
Let's see. Skylar is still doing fine. Enjoying school. She signed up for Girl Scouts this week. That will be something else positive for her to keep busy with. She's still enjoying dance/acrobats classes. She still talks about her sister alot which is good.
I was able to clean out a chest of clothes in Chassidy's room and move it into Skylar's room since she needed one badly. I didn't really want to move it, but I had to for Skylar to use.
I am having some crappy days lately. I am having guilt trips as well. No matter how much the nurses still tell me what a great and involved mom I was, I can still find stuff to feel bad about. Mostly in the end. But I was tired and so burnt out and she was too. I never wanted to do or not do anything to feel guilty about. I just miss her so much that's all. I know the first journal or two after she died I wrote I was missing her but not like now. Its kinda like the numbness wore off and now I'm feeling the real effects.
I have also signed up for the national bone marrow registry. I feel good about doing that.
Well, until next time... Love, Tonya
Monday, September 8, 2003 11:48 PM CDT Just wanted to let everyone know I'm still surviving.
School is going great. I made an "A" on my first chemistry test!!! I am excited. I have been out of school since 1988 you know.
Skylar is doing fine also. She is in school and liking it. She is also enrolled in tap/ballet/baton/acrobats. She went for her first lesson last Thursday and really enjoyed it.
Well, now to how I'm really doing...
I finally got out Chass's video camera. I am so thankful one of the tapes has her on it some. I am soooo mad at myself that I didn't try to get more video of her. But at least I have some, that is better than none. I have to find the cord that hooks from the camera to the tv so I can see and listen in sound. A few nights ago was a very bad night for me. I didn't go to sleep until about 4:30 a.m. I have trouble sleeping now anyway. My sleep patter was broken along time ago from staying in the hospital so much and now with Chass being gone, it doesn't help any. Anyway, I was just on her bedroom floor crying and crying. I have a Nike bag of hers that she also packed and took to the hospital. I will not unpack that bag. I look in it and there are all of her favorite pajamas that she wore so much in the hospital. I just can't believe she's gone. I see her face and still hear her voice in my head and it just feels like she shouldn't be gone. I had that bag open just digging the clothes out and holding onto them sobbing. It hurts so much.
I know one day I will see her again, but I wanted to see her everyday and finish raising her and see her get her drivers license and see her graduate, etc... she was stole from me!!!
I know she's not suffering anymore and people often say that. BUT IT DOES NOT TAKE AWAY THE PAIN OF MISSING HER IN MY LIFE HERE ON EARTH. I think well why did she have to suffer to start with???? Questions that we will never have the answers to until we see Jesus Christ face to face ourselves. I do know that Chassidy would not come back from where she is at now for anything. She is waiting on me to get there. I am glad that she is not thinking about leukemia anymore or when am I going to get out of this hospital? She was such a bright and loving child. Everyone loved her personality. She touched many, many people's lives. That was shown at her Homegoing Celebration. My Pastor even said that she did what many preachers try to do which is break segregation. He said if you look around you'll see what I"m talking about. There were white and black people mixed together all over that church. That is the way God wants it to be. There is not a white heaven or a black heaven or a chinese heaven etc... We all better learn how to love each other here or we won't make it to where God is.
I have been to the gravesite a couple of times since the funeral. I don't get real excited about going to her grave. She is not in that grave. She is with our Father in heaven. But I do go and I put flowers on it. I've got to put some purple ones on there next time or she'll be mad at me!
Ok, I guess I've pretty much said all I wanted to. :)
Love you all!!
Thursday, August 28, 2003 10:40 PM CDT Yesterday was a month already that my baby has been gone.
I can't explain what I feel. I just know that there is a void that can't nor never will be filled. I do okay some days and some days I don't. Sometimes I don't even want to think about it because its so painful, but I must to heal.
I have begun school and its going fine so far. Challenging and I like that. I have decided not to work yet. Too much for me right now. Just keeping busy with school and homework and other things. I can always find something to do it seems. But it doesn't matter what I do, there is always a reminder of my Chass everywhere. I stand in line at the grocery and there is her favorite magazine, I watch tv and there is her favorite movie or tv show, we eat and it happens to be something she loved, etc...
Our children are so much of our lives and we don't realize just how much until they are gone.
Well, I just wanted to let everyone know I am still here and hanging in there by the Grace of God.
Love, Tonya
Monday, August 18, 2003 10:19 AM CDT I felt it was time to update our page again. I see many people are still checking on us still. I really appreciate that!
I am doing "okay" still. That's the only way I know how to describe it. Some days are better than others. The nights are hardest though. Friday night I was in her room laying on the bed crying my heart out because I missed her so badly. Skylar comes in and says "mama, are you crying cuz you miss sissy?" and I said "yes" and she gives me a big hug and says "it'll be alright, maybe someday you can go to Heaven and see her." Now this is a 6 year old.
She was so sweet.
Yesterday I did decide I would come in and straighten some things up in her room and dust 'n stuff. I did pretty good. I just pretended that she was coming home and I wanted her room to look nice and neat when she seen it. I put her new quilt on her grandmother had made for her (which is orange and butterflies)right before she passed. It had a stain of blood on it from the hospital. I didn't think she ever got to use it, but evidently she did. Usually a stain of blood would make someone upset on a brand new quilt, but I just smiled and I'm not even going to attempt to get it out. Its probably too late anyway. Skylar ended up wanting to sleep in here last night instead of her room. She claimed it was because sissy's room had cable and her's doesn't and she wanted to watch cartoons. Then this morning she's been in here alot too. She's been listening to Michael Jackson's "You are Not Alone" over and over. Its what we played at the funeral. She's not upset though.
Well today is my first day of school. I am excited but at the same time, I'm scared. I hope I can keep motivated to do a good job. Wednesday, Skylar is signing up for gymanstics. She's excited. She's very naturally athletically built. I hope she goes to the olympics!!
Until next time, I love you all!!!
Friday, August 8, 2003 8:55 AM CDT Just wanted to let everyone know how things are going.
I have been doing "okay". Trying to stay busy by doing some things in my apartment that I've been wanting to do for so long but couldn't.
Last night was not a good night for me though. Missed Chass so badly. I just wanted to hear her say "mama" again. I just have to take it day by day.
I am getting ready to go back to school on August 18th. I am taking all my general and prerequisite classes for the nursing program! I wont' be able to start the actual nursing program until Fall '04 but I can go ahead and get the other general stuff out of the way this year. I want to give back to others what was given to us at Childrens.
Skylar seems to be doing okay. She does want to visit the cemetary alot. She is a typical 6 year old though. Just trying to understand,but yet still out playing with her friends and stuff.
I have made up my mind that chass's room will be Chass's room until we move. I am not going to rearrange anything. There's no reason to and plus she'd probably fuss at me if I did!
I will be still updating periodically. Make sure you leave your email address when you sign the guestbook for me. Thanks!
Saturday, August 2, 2003 11:04 PM CDT I know everyone is wondering if I was going to update the site anymore.
I wanted to tell everyone that Chassidy's Homegoing Celebration was absolutely beautiful yesterday. She looked great also, very much like herself.
We played "You are Not alone" by Michael Jackson since it was so fitting for the time and she dearly loved him and that song.
I dressed her in a school shirt that all the kids had signed awhile back and gave to her but she was never able to wear it. She loved her school and friends. She was also not a dress clothes kid at all. I dressed her in what I knew she'd like to be seen in. And of course one of her favorite hats and her glasses.
I miss her so much. I just can't believe she's gone.
Its funny how life changes so drastically so quickly.
Many people wonder why I was taking it better than they thought I would. I grieved for 10 mos. every since she was diagnosed. I would lay in bed after I would come home from the hospital at night and boohoo like a baby many times. I went through all the stages and emotions that goes along with grief throughout the 10 mos. I started preparing myself a few months ago as best I could for this. I began to realize that this is a tough thing to beat and I had to accept that this could happen to my daughter. It was so hard, but I'm glad I did accept reality back then because it made it a little easier to deal with now.
I have made one wall in my hallway her "memorial wall" with several things about her and pictures on it because she will never be forgotten in this house. She will live on forever in my heart. I will see her one day when I get to where she is.
I want to thank everyone for cards, gifts, or anything they have done for us throughout these last 10 months and this last week. I appreciate it so greatly.
I will not be updating the webpage much more. I will update in a few weeks or so to let everyone know how I am doing.
Tuesday, July 29, 2003 11:52 PM CDT I wanted to let everyone know when Chassidy's Homegoing Celebration will be.
It is Friday, August 1st. Visitation will be from
11 a.m. to 1 p.m. and funeral will be at 1 p.m. at
St. John Praise & Worship Center in Pulaski, IL.
Massie Funeral Home in Cairo, IL are in charge of the arrangements.
If you know how to get to Shawnee College just keep going past Shawnee College about 7 or 8 miles west. You will come to a stop sign. Make a left. Go about 4 miles. Church is on right. You can't miss it.
If you are coming from Interstate 57 South, Get off on exit 18 and got right (west) for about 1.5 miles. You will come to a stop sign. Go left for about 4 miles and you will see church on right.
As far as me-
I am doing "ok". I've been keeping busy and not really been too much alone. I miss her terribly. Its hard getting used to the idea that she is no longer here. I feel so very close to her in her room. I hope she visits me sometime while I'm here. A part of me has accepted and knows she's gone but a part of me is struggling with it also. Its almost unreal.
Some of our nurses from St. Louis are making the 2 1/2 drive down Friday. I appreciate that sooo much. I love so many of them. I will always stay in contact with some of them. They are such a huge part of my life then and will always be. They were the ones who came closest to understanding the battle we were going through.
I am not ready to deal with the things in her room yet. I guess that will come whenever I am ready. Some things will remain out forever. She will never ever be forgotten in my heart or my house. I can't do anything without thinking of her. I can't go to the store and I see her magazines she liked, I can't eat anything because she liked it... everywhere I turn there is Chassidy.
We are playing "You are Not Alone" by Michael Jackson at the service. She dearly loved him. She loved that song as well. It is fitting also for this time.
I will update more after services on Friday. I will be getting back to all of you who have emailed me eventually.
I love you all so much!!!
Sunday, July 27, 2003 4:39 PM CDT TODAY CHASSIDY LEIGH DENNIS WENT TO BE WITH JESUS.
She was in intensive care for a week as you all know.
Friday night her lung started filling up with fluid and she was swelling everywhere. They couldn't get the fluid off. They tried everything. This morning she started having heart problems. They were giving her medicine to keep her heart beating. The breathing tube was pumping as much as it possibly could into her lungs but they were so full with fluid that she just couldn't make it anymore.
She passed away at about 12:30 p.m. at St. Louis Childrens
Hospital. I helped wash her up. I cannot even explain how I feel. I miss her terribly. I did not want to leave her today but I knew I had too. I also know that she was not in that sickly body any longer, she is in Heaven with our Father and free from all pain and sickness.
Skylar stood by her bedside and looked at her sister and cried. She asked many questions. I had to raise her up so she could listen and see that sissy's heart was no longer beating. Its hard for her to comprehend that sissy is gone to heaven but her body is still here.
I will be making arrangements tomorrow. Please continue to pray for us. I love you all.
Friday, July 25, 2003 3:08 PM CDT Things are still pretty stable today. They did try to remove the breathing tube, but she didn't tolerate it very well so they put it back in. She had some very thick mucus in her mouth and trachea that she was choking on and they had to suction it out. They are going to try to remove it again in a few days. She is still pretty sedated and doesn't really know if you're there or not.
I may not be able to update over the weekend because the computer room is closed. Thanks for everyone checking on us and praying for us!!
Thursday, July 24, 2003 3:33 PM CDT The update for today is basically that Chassidy hasn't gotten any worse, and they feel like she is trying to improve from the looks of things. There is no significant improvement yet. There is still a long way to go though. She seems to be bleeding less in her stomach, and they hope it will continue. She may be able to get the breathing tube out tomorrow. That was placed in her after surgery Monday due to being sedated so much, not because her lungs weren't functioning properly. She is still sedated quite a bit to keep her out of pain.
Just please keep praying for her continuing to show better signs.
Wednesday, July 23, 2003 4:22 PM CDT The update for today is basically the same as yesterday.
She's stable, but no change for better or worse.
They put in a catheter in her leg to do a procedure that I can't spell. But what it does is take out her blood and kind of "freeze" the white blood cells so they will stop doing what they are doing to her, and then it goes back into the body. That's good, but the bad is that we don't get immediate results. It takes like a week to see if it worked or not. I am scared with the way things are she won't have that long. They are doing all they can, but running out of things to help her.
I am holding up pretty good. My mind is running 1000 mph.
She is still pretty sedated most of the time. Sometimes she's kind of alert and you can talk to her a little.
I will update as soon as I know something else.
Tuesday, July 22, 2003 6:38 PM CDT I will try to inform everyone the best I can right now. My brain is dead. I only got 2 hours of sleep last night.
Today she has not improved any really. Stable but not really improvement from what the doc told me this morning. I have not got to talk to her since then due to her being in clinic so maybe she will have some encouraging news for me this evening. She also told me that her liver is not doing very well, it has worsened.
They did a CT Scan on her abdominal area yesterday and decided there was a piece of her intestine that was dead and had no blood flow. They said it needed to be removed or it would very soon develop a hole and feces would start leaking out into her body which would be fatal. They really did not want to do this surgery because it would be so high risk for her at this time, but they felt they did not have a choice. They got in there and looked and there was not a dead piece of intestine, so basically they looked around and sewed her back up. She has about a 5 inch vertical incision on her stomach now. They did say the intestines are very swollen and angry, but there is nothing they can do surgically for that. She has to respond to the all the meds that are fighting the GVH, or she's not going to make it. The doctor told me that the GVH is getting way ahead of them. They are definitely giving it all they have within their power for her.
So anyway, she came out of surgery still sedated with a breathing tube. She stayed sedated all night. I went and cried by her bedside late. I know God is not forsaking us and I am not giving up, but this is just normal emotions for us to have going through things like this. Jesus wept too. Today, she has been awake some. Pretty "druggy" still but able to shake her head yes or no because she can't talk with the breathing tube still in her. They still have the tube going into her stomach also cleaning it out. She is still in some pain. Hard to tell how much now with her being so drugged and unable to really move much. She has been pretty stable throughout today as far as blood pressure and such.
The doctor still says the next few days will tell us one way or another. Whether she will start responding to the meds and improving or not. The main two things they are looking for to show improvement and turn around is no or less hemorraging in the gut area and the liver to start doing better. I am always anxious in the morning to talk to the doctor but at the same time not.
Several friends and family have driven up yesterday and today. Much support. I am completely worn out.
I love you all so much who check on our page continuously and offer so much love and support. You all just don't know how much it means to me. I read each and every entry thoroughly. Even though Chassidy won't be getting your messages for a few days until she feels better, please continue to leave them. They help me and she can also look at them later. I know there are millions of prayers all over the world being sent up for her. There's been plenty going up here in St. Louis as well. Prayer does change things. But I ask the Lord that His will be done and whatever He does to please do it quickly because she deserves to be out of pain and suffering one way or another.
Love, Tonya
Monday, July 21, 2003 10:11 AM CDT Day 61
Yesterday was NOT a good day. I had been home for the weekend and was on my way back to St. Louis yesterday morning. Chassidy's aunt called from the hospital and told me that the doctors wanted to see me right away. My stomach immediately started hurting. The only thing she could really tell me was that Chassidy was going to PICU (Pediatric Intensive Care Unit). Gosh, its so scarry because I know so many kids from our floor that go down and don't return. (But yesterday I did learn of some that have went down and have returned back to the floor.) The doctors have never called me in before.
When I got here, I talked to our primary doctor right away. She said the GVH had taken a turn for the worse. Chassidy was peeing blood which made them very concerned about the kidneys (renal failure) at this time. Also, they could not hear any bowel sounds which is why she was starting to throw up. The bowels are not moving anything through so it has to come up the other way. They wanted to place a tube through her nose into her stomach to keep it cleaned out until they can get the bowels working again. As far as the kidney issue, they wanted to place a catheter in her to keep the bladder flushed out. The doctor stated "this is a very critical time of transplant and I do not know whether she will respond or not to the medications."
So at about 2:30 p.m. she went to PICU. Wasn't long the kidney doc came and told me that her urine was clear (PRAISE GOD!)coming out of the catheter, so evidently the blood was coming from the rectal area (all the diarrhea from the GVH). That was a huge relief for everyone because that was the biggest concern for taking her to PICU. The gut is still very inflammed from all the GVH and that is why the bowels have quit working. Also when the lining is very inflammed like it is, they have to try to make sure it doesn't get perforated. That would not be good, because then the feces would get out into the body causing shock.
So anyway, she will probably be able to come back to the floor today since the kidney issue has been resolved. I haven't went to see her yet because you have to wait until 10. So I will be going as soon as I finish this.
I also just wanted to briefly explain what Graft vs. Host (GVH) is. It is when the donor's marrow that was put into Chassidy is seeing its environment (Chassidy's body) as not its owners and starts attacking her body because of it seeing it as foreign. Just like when a foreign germ invades our body, our body starts attacking. But with medicine they can help to control it and also get the new marrow to start eventually excepting her body. GVH is just very hard on the gut, liver, and kidneys.
Thanks for all your prayers,
Love,Tonya
UPDATE: Well, I guess I updated too soon. I spoke with the doctors after I gave this update before I went to see Chassidy. She has gotten worse since yesterday. Her gut is very inflammed and irritated from the GVH. She is loosing alot of blood internally. It is not coming out through the bowels because they aren't working. The tube in her stomach is only able to suck out so much. They are worried about perferation in that area still. They will be doing a CT scan today to see if that has happened. The doctor said that the next few days are critical. She has to either get better or worsen. She won't stay like she is. They are giving her the best that they have, she is just not responding. Everyone on the oncology floor is upset becuase we are like family after being here so much for 10 mos. I have called several family and friends and everyone is coming today and tomorrow. This is very scarry. The hardest part for me right now is watching her suffer. She is in so much pain in her stomach. She's on 7 mg of morphine and still in pain. I can't stay with her long without breaking down. I have to leave because I don't want her to see that. She's not talking. I know she's hurting alot. They are working on more pain management. I will update more if anything changes.
Wednesday, July 16, 2003 11:40 AM CDT Day +56
Yesterday Chassidy did get the colonoscopy and upper GI done again. They decided to go ahead with it because she was still very tender in her belly and still having diarrhea. It did show alot of inflammation in the gut. The linings of the stomach and intestines were all inflammed. This is definitely GVH. They said if it was just an infection, then it would be localized to one area. GVH attacks everywhere.
Needless to say, I was relieved to finally have a definite answer. The skin biopsy did come back as GVH also. So the plan basically now is waiting. They already upped the steroids last Thursday and the GVH does seem to lessening. The liver is settling down. She still looks jaundiced some in her eyes. Her rash is getting better and her counts are rising back up. All this is a good sign. Hopefully over the weekend she will begin to feel better and soon come home again. They will not add any new medicines for the GVH unless it shows it is worsening. Even when the GVH subsides, the gut area will take some time to heal from the inflammation.
Monday, July 14, 2003 8:52 PM CDT Day +54
Not a whole lot new to update today. Everything is still going about the same. She is still having stomach cramping on and off. The diarrhea has subsided quite a bit today. The rash is looking better.
The doctors are pretty sure she is having GVH. They were wanting to put the scope down here today, but since the diarrhea is better they are going to hold off. This is the 4th day the steroids have been increased and sometimes it can take a week or so for them to fully kick in, but they seem to be helping the GVH. So right now, its pretty much a waiting game. She is still getting morphine for pain. No time frame of coming home yet. She just has to start feeling much better. That can happen overnight because I've seen it before.
Her counts are down. Her anc is 935 today and white count is 1.2. Its kind of normal for GVH to suppress counts.
She also had to get platelets and blood today. She hasn't had to have platelets or blood for a couple of weeks but they dropped too low.
Her spirits are still okay. She just doesn't feel good. She still sleeps alot. The whole body is attacked with GVH. Its kind of like the flu feeling where you just don't feel good.
Just please remember her in your prayers.
Love, Tonya
Friday, July 11, 2003 10:03 AM CDT Day 51
So we are now officially one day past our 50 day mark which means we are now more than half through our 100 days post transplant period. It won't be long and she'll be able to be at home for good. The 100th day will be August 29th.
She is really looking forward to that day.
As far as her condition today, it is still about the same.
The doctors are not for sure that she has GVH. I know she has alot of the signs, but they aren't positive. They did increase steroids in case it is. Everyone is saying the rash she has does not look like a GVH rash. It looks more like a drug reaction rash. The bad thing is that all the drugs she's on she really needs. Dermatology may be doing a skin biopsy for that. Also, the nurses told me that GVH diarrhea is really really bad and consistent. Hers hasn't been that way. It has been bad at times, but it lightens up and she goes for a long time without any.
Last night, she did have a severe pain episode with her stomach. I just don't understand. They may be doing another CT scan for that. She also started running pretty high fevers yesterday afternoon as well.
I am to the point now where I am just not alarmed by anything now. I just know that God is going to make her alright but I wish the pain and suffering would stop!!!
Tuesday, July 8, 2003 5:50 PM CDT Day +48
We are still here in the hospital. She is not doing any better and not really any worse so I guess that's the positive side. Still stomach pains and nausea. She did start having diarrhea on Sunday. The rash seems to be doing better. She has had one fever early Monday morning but none since. They added Vancomycin (an i.v. antibiotic) when she spiked. She's not ate anything since Thursday so they have her back on i.v. nutrition.
They haven't determined that this is GVH (graft vs. host) but it definitely has all the signs of it. Dermatology is keeping an eye on the rash. They may do a biopsy tomorrow.
That's about all I know at this point. God is still good and still in control.
Sunday, July 6, 2003 10:40 AM CDT It hasn't been a very good holiday for Chassidy.
Friday she woke up not feeling very well after such a great day on Thursday. She laid in bed all day with stomach pain on and off. Finally, later that night we decided she neeeded to go ahead and go to the hospital. She has been throwing up and having stomach pain ever since. They have her back on morphine for the pain. She hasn't eaten or drank anything since Thursday. We haven't found out much over the weekend. It will probably be tomorrow before they decide what they are going to do. This is like the same type of thing that was going on before she left transplant. They've did all sort of tests before we left transplant and didn't find anything.
Everyone please pray that we find out what this is and for it to stop so she can get back out and get on with her life. We are both so tired of it.
Thursday, July 3, 2003 12:15 AM CDT Today is 43
We are still at home!! Things seem to be going pretty good. If you judge by her appetite, they are going great!
She is still weak, but getting her strength back will just take a little time.
We had to go to the clinic on Monday and Tuesday of this week and everything was fine. We don't have to go back until the 8th as long as everything goes well.
She is on the Cyclosporin i.v. twice a day at home. I give it once in the morning and once at night. It runs for 2 hours. It doesn't make her feel very good while she's getting it. This will continue until she is 100 days transplant. This medecine helps to prevent her body rejecting the transplant. She is on several oral medicines including steroids for a little while longer.
She is starting to sleep better (me too!). Today we are taking it easy. No plans really. Just to go get her some watermelon that she is craving! I won't update probably until after the holiday weekend if everything goes ok.
Everyone have a safe and blessed 4th of July!!
Love, Tonya and Chassidy
Sunday, June 29, 2003 9:24 PM CDT CHASSIDY IS HOME TODAY!!!!!!!!!!!!!!!!
She left the hospital about 3 p.m. today. We are staying about 45 minutes from the hospital with a relative.
She came home and ate a good meal. I think she ate too much!
She is resting now. I think she wore herself out. She is pretty weak. Her stomach is also bothering her.
She kind of had the "heebie geebies" earlier today. She is so used to being cooped up in that hospital room that she didn't know how to act to be able to be out and about.
I'm sure another day or so she'll figure it out.
We will be going back in the morning at 9 a.m. for a clinic visit. We will be doing that frequently for awhile.
I pray tonight goes well and we won't be going back for any inpatient stays for awhile.
Love, Tonya
Thursday, June 26, 2003 9:38 AM CDT Today is day 72. She is doing better. No fevers for over 24 hours. She hasn't been throwing up. They weren't for sure that the spot they seen was pneumonia. It was so small. Also, they couldn't hear anything when listening to her lungs. They put her on the antifungal and that's when the fevers stopped. They said the spot could have been fungal or a bacterial infection. Anyway, whatever it is seems to be getting better. Maybe will be getting out in the next few days.
Tuesday, June 24, 2003 5:33 PM CDT Today is the 70th day that Chassidy has been in the hospital continuously. I don't even count last week when we were released for 12 hours. She came in on April 14th and has been here ever since. This is getting really old and I am really burnt out. I know she is feeling like this is her permanent residence.
Today her fever has been about 104 to 104.7 pretty much all day. Still severe stomach cramping. They did a CT stan of the pelvic, abdominal, and chest area. They only thing they did see is a spot on the right lower lung that could possibly be pneumonia. They don't see a large amount. They've got her on antibiotics to cover it. They have told her she needs to be more active getting up and down and blowing in her spirometer to exercise the lungs. As for the stomach cramping, still no definite reason. It is just routine here everyday to draw blood because they watch it constantly for numerous things, so I know they are culturally it routinely. They culture her stools for everything as well. They definitely try to find out what is going and why. It could possibly still be GVH trying to develop. She hasn't felt like talking much today or anything. They said everything else still looks pretty good.
Dear God, please let her get well quickly and stay that way so we can leave her for more than 12 hours. I want off this ride now.
Monday, June 23, 2003 3:49 PM CDT I know everybody's wondering what is going on and what the results of the colonoscopy and upper G.I. are.
I just found out today. They came back fine. She was going to be able to go home today, but spiked a fever last night. So now they want to keep her at least until Wednesday to keep an eye on her. She's on 2 i.v. antibiotics and an antifungal. She is still having quite a bit of stomach pain. She's not throwing up a whole lot but at least once a day. No diarrhea for about 2 days now. I just can't imagine what it is.
I am beginning to wonder if she's ever going to get out of here!
I went home over the weekend. I have Skylar with me now, because I was anticipating Chassidy getting out today. Skylar and I will be staying with our relative where Chassidy and I had planned to stay post-transplant. She's got things that will keep Skylar occupied. I'm glad to have her with me. Even though she can wear me out!!! But she's my baby. She wants to go see "From Justin to Kelly" the American Idol movie. She's 6 and loves it.
Well, I'll update again when we find something else out!
Thursday, June 19, 2003 1:06 PM CDT PRAISE GOD!! They said her bone marrow aspiration was very good and showed NO signs of disease!!! They said everything was looking good and where they wanted it to be. I am so pleased!!
However, I guess it wasn't meant for us to go home and stay just yet. We did get released yesterday about 3 p.m.
She was still having a little nausea and a small amount of diarrhea, but I guess they felt she was ok to go home.
At 5 a.m. we were on our way back to the hospital. She felt she needed to be back here. She had thrown up quite a bit and had a large amount of diarrhea.
They have done a stomach x-ray that turned out fine. They are going to take her down later and do a colonoscopy so they can find out if this is graft vs. host or a infection or what is making her have all of this. They don't anticipate us being inpatient very long this time. They said if it is GVH it can be treated with different medications and get under control. She doesn't have a rash or anything. A few minutes ago she said she felt perfectly normal. So I am sure this will only take a few days to clear up and we'll hopefully be out to stay for awhile.
Alot of people have asked me what graft vs. host is. It is where the her white cells are viewing the new donor's cells as foreign. Her cells will fight against the new ones. It can be severe, but they have been giving her medication since she's been in transplant to keep it from occurring.
I will let everyone know when and what we find out.
Tuesday, June 17, 2003 1:19 PM CDT WEDNESDAY UPDATE: We are getting out of here today!!! Today has been exactly 4 weeks since transplant. We will be staying in Illinois about 40 minutes from the hospital with a relative for the remaining 2 months we have to be close to the hospital. We will be back and forth frequently to the clinic at the hospital for awhile. They did do her bone marrow aspiration today. No results yet, but I know they will be good news!! Will post those results at another time when we know.
Day 27
I know, I haven't updated in a few days. I had a good weekend at home and just didn't touch a computer.
Chassidy is still doing very well. In fact, WE ARE GOING HOME TOMORROW!! Well, not home home but you know- getting out of here!!! We are really excited! Chassidy was ready to go yesterday!
She has been a little sick to her stomach today and has had just a little diarrhea. They don't think its GVH, but they are going to keep her here another day just to keep an eye on it. Other than that, she is doing excellent. What a miracle God has given us! Everyone here is really impressed with her progress. She was so very sick when she first came to transplant. She's so ready to get on with life now. GOD IS A GOOD GOD ALL THE TIME AND ALL THE TIME GOD IS GOOD!!!
I know we don't always understand why things happen in life, but if we dwell on the "whys" it doesn't help. We just need to put our trust in God and go on. He always knows best. In Isaiah he says "His ways our higher than ours." We were not created to understand Him, but to trust Him. He's a very loving God and would never harm us. Its the enemy that brings these terrible things in our lives. He wants to destroy us. God says in His word also that He will always bring good out of bad things for those who love Him. He is also true to His word and It is impossible for Him to lie!
I will update our page as much as I can while we are gone from the hospital. Just please continue to pray for us!! I appreciate it so much! Glory Be To God!
Thursday, June 12, 2003 12:33 AM CDT Day +22
A.N.C. is 1250 today!!!!
Platelets are still low and they are trying to infuse her more to get them up and hopefully keep them up. Platelets are hard to get a good bump up sometimes when infused.
The doctor made the statement this morning "The end of tunnel is near." I look for her to be getting out next week sometime hopefully from the way things are going.
No signs of GVH (graft vs. host) so far so good!
Her tummy is a little upset today. Probably a combination of things. She is resting quite a bit.
I am so looking forward to getting out of here, but not until she's ready.
Wednesday, June 11, 2003 12:54 AM CDT Day 21
Another day of Good News!
Chassidy has an actual a.n.c. of over 500. I can't remember the actual number (please forgive me) but I know it is between 500 and 600. Her white count is .7
The doctors said she is doing great.
They are decreasing her morphine. Her a.n.c. doesn't have to be some magic number in order for her to be released, but she does have to be weaned off the pain meds, the antibiotics, and she has to be where she doesn't need infusions everyday. Right now, she needs platlets almost everyday. She has nose bleeds and stuff very easily. Her platelets will recover but when who knows. She hasn't had to have blood infusions as much, at least not everyday.
So I'd say if everything keeps going good like it is, we should be ready to get out of here in maybe a week or so.
I know she's ready, but she doesn't complain about getting out. She told me last night as long as she's been here, she just has gotten used to it.
Thanks to all of you for your thoughts and prayers! I know God is answering them!
I forgot yesterday to give the update on our Bone Marrow Drive that was held in our hometown in Chassidy's honor on Saturday, June 7, 2003. Only 25 people came out to be tested. There were over 100 signed up. I was very disappointed. There was alot of advertising and work put in to getting minorities to come out. Its sad that people don't see how important this is. Usually people don't until it hits one of their loved ones. On top of everything, we don't live in an area where we have like blood banks or anything. We have blood drives regularly, but there are never any bone marrow donor drives. So it was a very rare opportunity for people to get tested.
Tuesday, June 10, 2003 12:29 AM CDT Day +20
WOOHOO WE HAVE COUNTS TODAY!!!!! White count is .3
I know that is not much but it has to start somewhere.
Her a.n.c. is not a true a.n.c. so I'm not going to tell that until they can count 100 cells. They only were able to count like 10 or so today. But the white count itself is a good sign the a.n.c. is about to take off.
She is still doing good. Her mouth and throat are doing well. Her kidney's are still looking better, not normal but better. The kidney problems are a result of some of the medications she's on. The liver is pretty much normal now. The problems with that was from the intense chemotherapy and radiation she had to have right before transplant. But it is settling down. She is eating good. She has been playing with some of her stuff that people has sent. She's been on the laptop playing games. We can't get on line in the room because our internet carrier at home is long distance from here. They are supposed to be looking into how to fix that for families like us.
So we'll just keep praying!
Love, Tonya
Saturday, June 7, 2003 10:34 AM CDT Day +17
Things are still looking up today. Last night, she was up tidying up here little table and things. She tried to mess around with the laptop computer in the room, etc...
I am really pleased to see her stronger and feeling like getting up. She actually said she was tired of t.v.
Still no counts today, but will be soon I'm sure.
Her mouth is still not well, but its getting better. She is able to talk much more. Just a few days ago she was communicating by notes. She is still on morphine for her mouth pain. The liver is looking good and kidneys are doing pretty good as well. Still no fevers in several days and no pain anywhere else other than her mouth.
My grandmother is coming to visit today. Chassidy is looking so forward to getting her homemade soup and banana pudding she is bringing. My grandmother loves to feed her! It really worries her when Chassidy doesn't eat. Skylar will also be coming and staying the night with me. Hopefully this visit goes a little better than last weekend.
I won't be updating anymore until Monday. The resource center where I use the computer is closed on Sundays.
Love, Tonya
Friday, June 6, 2003 10:32 AM CDT Day +16
God is definitely answering somebody's prayers!
Things seem to be getting better everyday. Yesterday evening, I was so happy I cried. Out of the blue, Chassidy got up out of the bed and came over and sat on the bed where I sleep by the window. She looked as if nothing was wrong with her. I had not seen her up and moving like that for so, so long! She sat down and we hugged and I cried. Then she wanted the blinds to be open more and she looked outside over the Forest Park area. We have a really nice view. She also asked for a cheeseburger and fries!!! She had not asked for a "meal" in at least 2 months!!! I could not believe it! I ran to the meal cart because it just happened to be time, and told the foodserver Chassidy wanted to eat. She was so surprised. So when she got her food, she took a bite. It hurt her so bad to eat because her mouth is still nasty. She really wanted to eat it, but she had to go lay back down because it hurt too bad. She said I need something softer. So she settled for a banana and some grapes. I felt so bad for her, but I told her it wouldn't be long and she could eat whatever she liked. This morning she seen a Long John's commercial. She loves shrimp and she was pointing at it. I said do you think you can eat it? She shook her head yes. So I will try to get her some today.
The doctors did tell her this morning her mouth was looking better. I do know within the last 24 hours or so she hasn't been throwing up all the blood and stuff. I am hoping that is a good sign her mouth and throat are doing better. They've also been trying to keep platelets in her, so that's probably helping. Still no white count yet, but they feel that with her feeling better that is a good sign it is soon to come!!
Thursday, June 5, 2003 2:02 PM CDT Day +15
Everything is still going about the same. However, her liver enzymes and kidney functions are looking even better. They are still pretty pleased about her progress. No sign of counts yet, but hopefully soon. I'll be glad so the mucositis will go away and she'll stop throwing up all the blood.
The nurse told me yesterday that the bone marrow transplant coordinator said she feels that Chassidy is engrafting. She doesn't know that for a fact, but she just feels she is from the way things are looking. It will be about another two weeks before they do a bone marrow aspiration.
Last night the nurse told me that her hemoglobin is holding at about 11. That is higher than it has been in a very long time and I'm impressed its staying there. Hopefully it will continue this.
She has been eating some. I'm glad to see she has an appetite.
I did go home for Skylar's kindergarten graduation. My mother was supposed to come stay on Tuesday night for me to go home, but she got very ill at the last minute before she left so she couldn't make it here. My mom has these "seizure" type of things that scare me. She's had tons of tests ran to see what could cause them but they have not found out a reason. She is very sore all over afterwards for a few days. So please say a prayer for her.
Anyway, so I didn't get to leave Tuesday night. I left at 4 a.m. on Wednesday morning. Got home, went to the graduation, got Skylar's things ready to go to grandma's, and then drove 2 1/2 hours back to St. Louis. I was exhausted when I got back, but glad I could go. Nobody was here with Chassidy but she was stable enough to where I could leave. I was back in less than 12 hours.
Tuesday, June 3, 2003 11:21 AM CDT Day +13
Not much of a change today so far, but her labs for her kidneys and liver do look better so that is a blessing.
One of them that they were pretty concerned with has droppped significantly. Praise God!
She ate cereal at 4 a.m. and asked for a banana last night before bed. She wants to eat so bad bless her heart, its just bery hard for her. She is still spitting up quite a bit of blood, but I'm sure that is just the mucositis that is so bad in her mouth and down into her esophogus. Once she gets some white cells that will start healing. Her spirits seem to be fine. She gets a little grouchy with me but considering all she's been through I guess I'll let her!
I have to go home today and prepare for Skylar's kindergarten graduation tomorrow morning. My mother will be staying while I'm gone. You know I told you all that my mom was great support until her husband became ill and had to have a tumor and kidney removed in February. He started receiving treatments afterwards. They made him pretty ill, but he made it through. She had her hands full with him so she couldn't really help me anymore. Well, he had some tests ran last week and he has knots in his lymph nodes and they are pretty sure its cancerous. They will know more this week. Just please pray for them when you pray for us.
Thanks!
Love, Tonya
Monday, June 2, 2003 1:37 PM CDT Day 12
GOD IS SMILING DOWN ON US!!
The doctors came in today and said that they feel Chassidy is stabilizing out compared to last week. Her liver and kidney labs are still not where they'd like them to be, but if they don't get any worse than she should be okay. They said they expect some counts to start showing up soon. I hope by the weekend, so that mucositis goes away. She is really suffering with that. Its all the way down in her esophogus. She can't eat anything, however she does ask for quite a variety of things to drink. She has to write notes most of the time because it hurts her to talk. She told me today that she is looking forward to an icecream cone. I am glad that she has an appetite. I believe she would eat if she could. That's the way it goes though, when you can have it you don't want it, but when you can't you want it.
They only downside to her counts coming up is that is when graft vs. host may set in. They are giving her drugs to help stop it, so hopefully she won't get it too bad. Her blood pressure has been high, but that is due to one of the medications she is on. They are giving her BP medication for it. I am very amazed at her. She is definitely a fighter. Even at her sickest moment, you can tell she is determined to not give up. Most kids get a chance to recoup before they come to BMT, but not her. She was so sick for over a month and then came straight off the floor to BMT. She didn't have much strength to begin with for a bone marrow transplant. That was one thing that worried me about her, but she has fought so hard and is really doing remarkably well considering all of the above. God is definitely in her corner!!
She has perked up more. She has been better since Friday afternoon. She is not sleeping as much and is back to watching some t.v. Skylar did get to come up this weekend. Her behavior was absolutely horrible even though I took her to the Magic House, to see Finding Nemo, and to the zoo. I guess this all is beginning to take a toll on her. I have noticed a change in her probably in the last month. She's done really well since October but I was also able to be home a little more than what I have been able to be in the last 2 months since Chassidy has been here. I will be glad when we are out of this place and she can come stay with us. Maybe it will help her. I hope it doesn't have too much of long-term effect on her. If it does, I think I will run away!
I seen a shirt the other day that said you don't know peace until you know suffering. I thought that is so true. After all of this, the things I used to think were stressful, won't be anything to me anymore. We will just have a huge testimony after all this to tell about how God has blessed us. At our benefit on May 2nd, our choir sang a sang that is called "the sun is gonna shine if I hold on." I try to think about that alot. I am coping pretty well though. I think after awhile, this just begins to be a part of life and you get "used" to it. I don't like it, but after 8 months of it, I am used to it.
I also want to thank everyone for your cards and prayers and gifts you have sent. They really mean alot. To the lady in Tupelo, MS we did receive your package. Thanks SO much!
Love, Tonya
Thursday, May 29, 2003 4:56 PM CDT Day +8
Many things are going on right now. The doctor came in this morning and told me that he was a little worried about her, so he wanted to have a catscan of her head done and another ultrasound of her liver area. I know the catscan has came back fine, and I'm pretty sure the ultrasound did also or he would've tracked me down by now.
One of the things that going on is she is throwing up alot of blood. Some blood is normal when your platelets are extremely low like hers, but they have been giving her platelets alot and have got them to a level where she shouldn't be throwing up that much blood.
Another thing is that some of her labs on her kidneys and liver are not where they should be. Her electrolytes and things are off. They are concerned about her sodium level and other things going on with the kidneys and liver. These problems mostly stem from alot of the chemo she's been given, but the liver can also be effected by the transplant. Also there is the issue with she can only have like 3 literes of liquid going in her a day which has to include everything she drinks and all her i.v. medicines,e tc.. because during this time its something to do with too much liquid can cause her capillaries to lose water into places that we don't need them too like lungs, etc.. So the fluid thing is an issue. But yet at the same time, we can't dehydrate her either. So the kidney dr. came by this morning to try to help us figure this out. They did some labs on her urine. I will find out later what is going on with that. Like the doctor said this is the time that things get "hairy" during transplant. This is a very critical period, especially with her whitecounts being zero, and will be for awhile yet. All I know is that anything is possible at this point in time. I never know what tomorrow will bring.
I can't get into trying to figure everything out, because its too confusing and actually nobody except God knows why they are all happening. So when I say things are happening, don't expect me to have too good of an explanation.
She is a very sick little girl right now. She does nothing but sleep, use the bathroom and throw up. She's not even been watching t.v. like she was just a few days ago.
I try to stay in the room as much as I can. I try to lose myself in a book or crossword puzzle. If its nice I go out on the rooftop garden or somewhere to get out for a little while. I'm coping pretty well I think.
Skylar is coming up this weekend. Its hard finding someone to bring her up but I have the opportunity to get her up here. She hasn't seen her sister in almost 2 months. She has began to be inquisitive about everything of couse because its been so long. I have to stay realistic- If something were to happen to Chassidy now, it wouldn't be fair that Skylar hasn't seen her in such a long time. So that is why she coming. We are also going to go the zoo and other things so we are not constantly sitting in the hospital room. That would not be good for a 6 year old. We are also going to get a hotel room. Chassidy's aunt will be staying with her the weekend so we can leave the hospital and not have to worry about Chassidy being alone.
I just pray that all of this suffering is not in vain.
Love, Tonya
Tuesday, May 27, 2003 12:26 AM CDT Day +6
Chassidy's weekend went okay. She has been hurting on and off with the mouth sores even down into her throat. They still have her on morphine for it. She's been on morphine pretty much ever since she's been here. This is week 6 straight for her being here. Its kind of went by fast, but yet not. At least we are in BMT and have some light at the end of the tunnel.
She's also having nausea and vomiting. Not sure if that is from graft vs. host or what. I've stopped trying to figure every little thing out. You will drive yourself insane. I've just learned that she is a very sick little girl and those things are just going to happen in transplant. They are giving her all the meds they can to help her with all the side effects. Her i.v. pole looks like its going to topple over at anytime with all the meds it has hanging. She's also been having to get platelet transfusions almost everyday because they are so low that she's been having nosebleeds. This morning she got a blood transfusion because her hemoglobin is so low. All this is common to us though. No fevers really since her transplant though!
The doctors says she is doing pretty good considering all she's been through in the last 6 weeks. Everyone says she looks good. She does, but then again she looks very sick to me too. She still carries alot of her weight in her face which helps her to not look so sickly. She is still sleeping alot. She gets alot of benadryl and things for premedications so it makes her sleepy. She doesn't want to talk alot anyway due to all the mouth pain. She's still got those big eyes though. You can't miss those when she's awake!
I went home this weekend to see Skylar. She's still doing good. She is a little more inquisitive about what's going on with her sister. Something I found funny- She asked me how was I going to get money if I can't work. Its funny a 6 year old would be worrying about finances. I assured her everything was okay. She was a little more sad this time when I left. This routine is getting very old for her. Next Wednesday (June 4th) she will graduate kindergarten. She can then go stay with grandma until she can come stay with us here in St. Louis after Chassidy gets released. I'll be so glad to have her with me, even though she drives me up a wall sometimes!!! :) But I love her anyway!
We are still holding the bone marrow donor drive on Saturday, June 7th at the Middle School in Metropolis. We are really trying to target minorities to come out and be tested since they are so badly needed on the registry. I hope I am able to be there for it.
Love, Tonya
Saturday, May 24, 2003 1:45 PM CDT Day +3
Chassidy has had a fairly good last few days. No fevers and very little pain in those spots she was having pain in. She doesn't eat hardly at all still, but that is common when kids are this sick. Her days mainly consist of sleeping and watching t.v. when she's awake.
This morning she woke up with a swollen jaw and pain in her mouth. The docs checked her over and she has mucositis which is very likely to happen during transplant when her counts (immunity) are low. She has no immunity system now, and it will probably stay that way for about 2 or 3 weeks.
She has never had any mouth sores throughout all of her chemo treatments until now. (She did have the rectal issue though which that area is linked to mucus membranes also).
Mouth sores can be very, very painful and she probably will feel like eating less than she already does. The mouth will pretty much stay that way until her counts start recovering. Since she has no immunity now, this is the scarry time when all kinds of infections and things can happen. They do still have her i.v. antibiotics and antifungals. It does help, but sometimes it doesn't help enough.
She doesn't talk a whole lot. She doesn't really want to talk to anyone when they call. Her spirits seem to be still ok. I've always heard how hard bone marrow transplant is, but Chassidy has been so sick that she is used to this stuff unlike some kids who haven't had it as hard as she has prior to transplant. Its really hard on those kids because they don't know what its like, but we do. I think that is one thing that is making it a little easier for me to deal with.
I came home for 2 days today. I had to take care of Skylar. Chassidy's aunt is staying with her until I go back. When we get out of the hospital, Skylar can come stay with us in St. Louis for the summer. I'll be glad. I was just thinking today on the drive home, IS THIS NIGHTMARE OVER FOR US NOW?? WILL THE LEUKEMIA NEVER RETURN? IF IT DOES, WILL IT BE A LONG TIME? SHE NEEDS SOME GOOD DAYS AHEAD!!!
Love, Tonya
Thursday, May 22, 2003 5:15 PM CDT Well, it is done. She received the marrow last night right at about 8 p.m. It was pretty uneventful as I'd heard it was. The bone marrow coordinator had about 3 larger syringes with the stem cells in them and she manually pushed them into her central line. It took about 20 minutes. Chassidy slept through it all. They premedicated her with benadryl so she was sleepy. I was going to tell her about it last night, but she cut me off and said she doesn't want to remember any of it. She didn't want pictures of anything so I respected her wishes. She didn't have any kind of reaction to it during the procedure.
So now we are in the waiting period. The next 100 days will be a critical period. Graft vs. host could take place, even though they have the meds to control most of that. There are just many side effects that can happen though. That's why we have to stay in the St. Louis area for around 3 months after being released.
They said they will do a bone marrow aspiration in one month to really see where things are. They can tell a little before then just by some bloodwork and if her pain is decreasing or not. They are pretty sure the pain she's been having is leukemic deposits. The doctor said her disease was progressing very rapidly just since the last bone marrow biopsy. So, hopefully the chemo she had and the radiation this week took care of the leukemia and will allow the new, healthy marrow to graft and keep the leukemia away for good.
The doctor said that if the bone marrow transplant doesn't work or say it does work but she relapses before a 6 month period, there is nothing more they can do for her. If she relapses after a 6 month period, they could possibly try more chemo and another transplant, but that would totally be up to Chassidy if she would want to go through another hell. Let's just hope we don't face all of that. Its hard not to think about it though, because we've had so many hard knocks in the last 7 months, you kind of get to where you don't expect good news. Every time I've been hopeful, we have received bad news. The doctor said I have a pretty realistic outlook on it. Many parents feel the same after such a long battle.
Chassidy's spirits seem to be ok. She doesn't talk a whole lot. She sleeps alot because her poor little body is just worn out. She's been awake today and watching t.v. I wish I could lay with her but they won't let us lay together in isolation. Its very difficult watching your once healthy child go down the way she has. Hopefully, she will bounce back soon. One good thing, NO MORE CHEMO!!!
I will update in a day or two to let you all know her progress.
Wednesday, May 21, 2003 12:42 AM CDT TODAY IS THE BIG DAY!!!!!!
I know everyone's been wondering how things are going.
She got her chemo on Sunday and Monday. She did pretty well with it. No vomiting or anything.
Yesterday she got the radiation treatment. She did experience some pretty severe joint pain afterwards and she did get sick once. She ran some fever also. But this morning she seems to be doing pretty good. Doesn't feel like doing anything but at least she is talking and eating popsicles.
As far as the transplant today, it will be at least 5 p.m. or after. Its a pretty uneventful day. We are just waiting. Some people think she has to be operated on or something, but its just like a blood transfusion through her central line and will take about an hour or two. Most kids do pretty good with it. The thing is waiting the 100 day period after the transplant to see if graft vs. host is going to happen and also waiting to see if her body has accepted or rejected it. This will all take awhile. So just because today might go okay, you never know what tomorrow will hold.
I will definitely update tomorrow.
Also, if any of you all can record any of those shows for Chassidy we'd really appreciate it. I know some of you already said you would. The list is on Saturday, May 17th's journal if you want to know what she likes. THANKS!!
Saturday, May 17, 2003 8:30 PM CDT Well, test results are in. Chassidy's ultrasounds, CT Scan and bone scans all came back fine. The one thing they did find was from the skin biopsy. She has either the chicken pox or herpes virus on her face. The viruses are so close they aren't sure which one but they are treated the same. She has had chicken pox and shingles when she was younger. They said she could've had a fever blister when she was little which could be where the herpes came from. Both viruses live in your body for the rest of your life after you get them.
They are treating it with the medicine for three days but she is still going to transplant. As a matter of fact, she has been moved to the isolation room already and will be starting the chemo tomorrow for transplant. PRAISE GOD!!!!
Could I get any of you out there to do Chassidy a big favor? The cable at Children's Hospital is very limited. She really misses some of her favorite shows. I just don't have the time to record them and won't. Could any of you get some blank VHS tapes and record them for her? She would love that while she's in the hospital for the next month.
Her favorites are "Golden Girls", "Newlywed Game", "Whammy" (game show), Martin, Living Single, The Parkers, Charmed (old episodes and new), I Love Lucy, "That's my baby" on the Animal Planet and that's all she could think of for now. If there's anything else I'll let you know. You can just mail them to the hospital. She is now still on 9 West, BMT #4. THANKS A BUNCH!!!!
Thursday, May 15, 2003 9:20 PM CDT Today the doctors decided to do some more extensive testing to find out what in the world is causing this pain in her stomach area and the fevers. I know she hasn't had a whole lot of pain in the last 24 hours or so, but she's also been on morphine which is helping to keep her comfortable.
Today she had to go through another of those ugly CT Scans she hates because of the contrast the shoot through her veins that makes her feel hot and weird. They wanted to do another one to make sure they aren't missing anything. She also had to get more ultrasounds done. Also, something else new that's developed. She has some bumps broken out on her face. I noticed one about a week ago on the side of her nose and it scabbed over. Then a few more in the last few days. She thought it was just a pimple. The doctors were concerned so they had them do a skin biopsy on the big one by her nose. She will have a scar there. She said it stung really, really bad. Poor baby. She is so tired of all this crap. I am tired myself and I am also tired for her. She is constantly being looked at, poked, and prodded on. She is beginning to be more crabby with the nurses but can you blame her?
Well we should find out results of everything on tomorrow.
I will update. Everyone just please be praying we make it to transplant and that nothing ugly is going to stand in our way!!!!
Wednesday, May 14, 2003 1:48 PM CDT Sorry I haven't been on in a few days. I went home over the weekend. Chassidy was doing pretty good after her surgery last Wednesday and not in anymore pain. She was still running fever so they kept her to make sure everything was healing up ok.
I got back on Sunday. Monday morning they took her back in O.R. to see if rectal area was healing up well and it was. Yesterday, she had to finish up some tests prior to the BMT. One was the pulmonary test which is hard. It required alot of different breathing exercises. She started having pain pretty bad on her right side around and under the rib cage. She had to come back later to complete the testing. They went ahead and did an ultrasound of her lungs, liver, spleen, gallbladder, kidneys, and soforth to make sure there were no infections there causing the pain. Everything was fine. The pain seemed to subside after awhile and finally at 6:30 p.m. we were released to come home. Yeah!! Well not quite. We got home around 9:30 p.m. I had to get all her i.v. stuff going. I got to sleep around midnight. At 4 a.m. she woke me up with bad pain again in the same area. I called the oncology doctor on call. She suggested I give her some of the pain meds we had and wait to see how she did. About an hour later she was worse, so guess what?
At 5 a.m. we were heading back to St. Louis.
They still cannot figure out what is going on unless she pulled a muscle in that area. Her blood work is all good. Her CT scan and ultrasound and chest x-ray are all fine. She is still running high fevers on and off though. They think its just inflammation from the surgery healing up, but aren't sure. I know they are doing all they know to figure all this out.
She did lay in bed quite a bit for a month and like I said that pulmonary test yesterday took quite a bit of effort. So they are thinking maybe that's what happened. She's back on the morphine for pain. She's in quite a bit of pain once again. I'm about to lose my mind. I can't hardly stay in the room anymore when she's like that because I am tirede of seeing her suffer and I can't do anything about it.
She will hopefully still be going to BMT on Sunday to begin the chemo for it. She will get the actual transplant next Wednesday the 21st. Please pray we make it!! I'm worried we won't.
Her counts are very good though. She had an a.n.c. yesterday of 3000 and something. Platelets are still low around 45. Hemoglobin is low like 8.5 but that never goes up very much anyway.
I just knew we had a few days at home until the BMT. She was so excited to get out of here after being here a month.
Well, we'll just have to deal with whatever this is.
I may have a friend of mine update this page whenever I can't get on or its not convenient for me, because I do want to keep it updated.
Thursday, May 8, 2003 5:46 PM CDT Chassidy is doing pretty good today as far as pain. She is able to get up to the bathroom and shower without being in pain the whole time. She's still pretty shaky on her feet. So it looks like the rectal issue has been resolved, hopefully permanently. She still doesn't feel really good though. Alot of it is probably post-anesthesia related. Plus the fact that she has not ate in a week and a half and she's laid in a bed for almost 4 weeks. Physical Therapy has been coming in and they've also got her on nutrition through her i.v.. I hope that will help strengthen her.
She did have a fever of 103.3 today, but doctor said she felt that was normal after surgery. Not a for sure date to go home yet. Everything has to be "good" to go home. For one, she has to get weaned off the morphine and she still needs to be on the i.v. antibiotics. They are definitely trying to get us out of here as soon as possible because
OUR TRANSPLANT DATE IS SET FOR MAY 21ST!!!! DONOR IS AVAILABLE!!! So we have to come back in on the 17th to start getting the chemo and radiation.
God definitely heard our prayers because while she was in surgery they got another bone marrow sample to see how it looked. The doctor said it still looked good. Maybe about 9 percent blasts, maybe a little less. She said this a very good time to get in transplant. This is such a timing issue and I was so afraid we wouldn't make it, but it looks like we are going to be there!! Thank GOD!!
Wednesday, May 7, 2003 9:31 PM CDT Chassidy had her surgery late this evening. She's done pretty well. What they actually found was different than what they anticipated. They did remove the rectal skintag. They did not find a cyst in the vaginal area like they thought the CT Scan showed. The CT Scan is not a real clear way of knowing definitely what is there sometimes. What they did find was a "hole" up inside the colon that was getting infected everytime she gets neutropenic (immunity is suppressed). They drained puss out of it. They also did another bone marrow aspiration while she was under. We haven't heard anything on that yet. Probably won't until in the morning since its late.
The surgeon said that the hole they found should be okay now. He said he's never found one in a child. Its an adult problem usually. However, he is going to review the CT Scan with the radiologist again tomorrow. He said that he can't say for sure if this thing with be a problem or not in the future. He is going to do a little further research on it.
She was in excruciating pain after the surgery for about an hour. It took much, much morphine and demerol to finally get it under control. She's sleeping pretty well right now.
Hopefully we can get out of here soon. This is our 23rd day here!
Tuesday, May 6, 2003 10:43 AM CDT Sorry I haven't updated in a few days. I went home over the weekend and just have been busy.
Our benefit on Friday went very well. Everyone really seemed to have a good time. Skylar had a great birthday also.
Now, back to Chassidy. Yesterday they decided to do a CT scan on her pelvic and rectal area due to all the pain she is still in. The "skintag" has never given her this much trouble this long. She was pretty upset about getting the CT scan because she had one before and the dye that's injected in her i.v. made her feel very bad. However, yesterday they premedicated her and she tolerated it a little better. She didn't vomit at least.
The results are that she has a cyst in her vaginal area deep under the skin and that is what is causing so much pain. They said her rectal area looked good. So she has been having pain in two areas. Bless her heart. Her rectal pain seems to be doing better because her counts are increasing! Today we have a true a.n.c of 860 and white count of 1.0. That is really good (for her). Her platelet counts are 33 which is still pretty low. Hemoglogin is 8.5 which it never does seem to get above 9 or 10 anymore for the last 3 months.
We are waiting to talk to the gynecologist and the surgeon today to see what is going to be done. They said most likely it will have to be drained under anesthesia. If it wasn't for this problem we could be gone home because her counts are good now. At least she has something to help fight this infection.
Last night they thought she was going into septic shock because her blood pressure dropped, she had a high fever, and she was just really sick. But she pulled out of whatever it was. One of my favorite doctors came back in at midnight just to see how she was doing. I thought that was so nice of him.
I will be updating again soon.
Wednesday, April 30, 2003 3:10 PM CDT PRAISE GOD ABOVE FROM WHOM ALL BLESSINGS FLOW! Chassidy's back in remission! The bone marrow showed 10-12 blasts (leukemik cells) which is good enough to go to transplant. I just hope that she stays this way until we are able to get into transplant. As far as a date, the doctors are wanting to go around mid-May but we have to wait on the donor's availability. We should find out that the end of next week if they can be ready then. I'm so scared she'll relapse before then, but I can't focus on that. This has been a very stressful day for both of us!!
The bone marrow aspiration itself was absolutely horrible this morning. Chassidy is obviously building up a tolerance to pain meds probably from all the morphine. She still had the morphine going this morning, but the other anesthesia they used just didn't work. They gave her as much as they could without being dangerous. She felt every bit of that big crochet needle being put into her back. It was just awful. I had to leave the room crying. They also wanted to do another procedure were they take out some spinal fluid and replace it with chemotherapy in the spine. She's had this done before, but today she could not go through it. Getting the marrow was bad enough on her. It was a very traumatic morning for us. It took her a long time to settle down. The nurse said it was the worst aspiration she'd ever been in on. She's been a nurse for awhile. God, I just don't understand why this stuff just keeps on and on and on. Why my poor sweet child has to keep suffering with so much.
Her counts still haven't improved any. She's still on 3 i.v. antibiotics and an antifungal. Still running fevers on and off. I guess this all pretty much means I can't take her home tomorrow with me for Skylar's birthday or our Benefit Concert on Friday night. She wants to go home so badly and I want to just steal her out of here. She's feeling okay though, besides still having rectal pain at times which can get pretty severe. I have to take care of her like a baby as far as bathing her, dressing her, waiting on her, helping her walk (she's weak), etc...
but I don't mind. She's mine. I do get a work out though and defintely worn out at the end of the day. We had to put a sign on the door today to tell people to come back later if they weren't a doctor, nurse, or PCA. There is just a rediculous amount of people coming in the room everyday. There is no rest.
Tuesday, April 29, 2003 1:52 PM CDT DAY 16 IN THE HOSPITAL
Chassidy is doing "ok" today. She is still having the rectal pain on and off. They have decided that there is probably a fissure attached to the skintag that is protruding on the outside. She runs fever on and off but they don't know the source. I would say it is in that area. Nothing has indicated there is any infection in her broviach line to cause fever. The pain seems to be a little better, but still happens alot when having to use the bathroom.
Counts are 100 today. That's really not an actual a.n.c because there were only like 25 cells to count in the blood specimen. WBC is still .1
Unless her counts really skyrocket in the next 48 hours, I don't believe she'll be getting to go home. Plus we need the fevers to stay away!!! The only time I've notice a real fever is with the amphoterisin (sp) medicine. That can be one of the side effects from it. She is premedicated w/ tylenol but I guess its still happening.
I want her to be home so badly Friday for Skylar's birthday and our Benefit Concert that night. She may not be able to go the Benefit, but I thought she may be able to at least come for 5 minutes to make an appearance. Everybody please pray her counts come up so we can get out of here!!! She has been crying some to go home.
Also, Please Pray that the bone marrow aspiration goes well tomorrow morning and shows that we are in remission again!!! so we can go to transplant soon. I will let you all know later tomorrow what the results are.
Saturday, April 26, 2003 11:29 PM CDT Today seemed like it started off rough, but then got better.
I talked with Chassidy's aunt (who is staying until I go back tomorrow)this morning and Chassidy was in quite a bit of pain again. The ativan that they give her yesterday didn't seem to work as well as it did. She is still on the morphine.
She was still running some fever so they put her on a medicine that is an anti-fungal called amphaterisin (I am not sure I spelled that right). The side effects are horrible from it so she gets alot of premedication with it. I talked with them again this afternoon and she was doing much better. No fevers and she had even gotten up to hunt Easter eggs that nurses were hiding for her since she didn't get to celebrate Easter much. She has even ate good today. She finally has felt like getting up and doing something. She gave me a list of stuff to bring back with me tomorrow. I felt relieved to hear all of this. I just pray the pain stays away!!
We got to do our television segment this morning on Channel 6. It went well. Everyone said I did a really good job. I was nervous!!! But everyone said they couldn't tell. That is out of my norm, but anything for Chassidy I will do.
I really hope she able to be home Friday, May 2nd for Skylar's 6th birthday and our Benefit Concert at our Jr. High School. That would be so great!! That a.n.c. has to hurry and rise though!!!
Friday, April 25, 2003 11:44 AM CDT Chassidy is still being tormented by the rectal pain from the "skin tag". She is crying alot with it. I am so sick of seeing her feeling this way, and nothing that I can do. It is very painful for a mother to watch this happen to her child. They have increased the morphine again. We are using anusol and ice also. Not too much helps until her a.n.c. starts increasing and I don't look for that to happen for a few more days.
I really hope she's able to be home for her Benefit Singing event next Friday night and Skylar's birthday.
I am going home later today. I have some business to take care of. Her aunt will be staying with her and my mother is right down the road at another hospital with her husband. She will be coming over also. I hate to leave but sometimes you have things to take care of. She's okay with me leaving. I won't be gone long though. Also, while I'm home tomorrow morning we will be on Channel 6 (Paducah) somewhere around 8 or 8:15 in the morning. Hope everyone watches!
Thursday, April 24, 2003 12:30 AM CDT Today is the 11th day in the hospital. Chassidy's a.n.c. is still at zero. I guess I did "jinx" her, because last night she woke up about midnight and tried to use the bathroom. She was in excruciating rectal pain again. I am so tired of that "skin tag" as the doctors call it. Its basically a hemorrhoid. It does this everytime her counts are extremely low. I get so tired of seeing her cyring with pain. They upped her morphine dosage. She was finally able to go to sleep and has been sleeping most of the morning. She is still somewhat uncomfortable though. She has to keep ice on that area. They've also added another antibiotic to try to keep infection from setting up there.
Depending on how things go between now and transplant, we may not be able to get that thing removed before transplant. I hate that she may have to suffer with that during transplant and the infection it could possibly cause during that time.
ALSO, Tracy Troutman (Chassidy's teacher who has been a tremendous blessing in our lives getting all the fundraising organized) and I will be on Channel 6 (Paducah) on Saturday morning around 8 a.m. to talk about Chassidy's illness and the benefit singing fundraiser on May 2nd. I hope everybody will be able to come to that.
Tuesday, April 22, 2003 7:02 PM CDT I know I haven't updated this page in a few days, but actually there isn't much to update.
Her a.n.c. has now dropped to zero, and she can't go home until it shows some signs of going back up. Her arm pains seems to be a little better. She hasn't shown any signs of the rectal pain this go around. Hopefully I just didn't jinx her!! She is still on morphine though, so that could be why she's not feeling it if it is there.
They were going to let her come home Sunday morning, and had taken her off all her i.v. antibiotics Friday to see how she'd do over the weekend before coming home.
She spiked one temp on Saturday and that blew it. They started her back on Ceftaz and she hasn't had another fever since. This is now her 9th day here.
Mood wise, she seems to be doing okay so far.
I went home Saturday to be with Skylar over the weekend and just got back to the hospital today. The sense of home is just not the same anymore. You know its not a permanent stay when you go. I won't update for a few days unless there is a change.
Thursday, April 17, 2003 6:29 PM CDT Though he slay me, yet will I trust him. Job 13:15
I was thinking about Job today and all he went through beyond his control. But in the end, Job was blessed with twice as much as what he had before his tragedy. I believe God loves us just as much as He loves Job, and that He will give us double for our trouble!!
Chassidy is about the same today. Still on the morphine for pain on and off. No fevers for about 1 1/2 days now!! Treatment will end Saturday. Not sure when we will be able to go home though. We defintely need those fevers to stay away to even think about going home though!
I got out today and went to the store and got Chassidy some snacks. She does eat a little. Just trying to pass time. It does go much faster than you think it would in a hospital al day long. I just try to find things to do. Yesterday we rented a couple of movies, I was up until 1 a.m. this morning watching them.
I feel like I'm in limbo. Just don't know which way this thing will go at any given time. I read others caringbridge webpages and I definitely realize our situation could be much worse. Chassidy is abiding in the shadow of the almighty is all I can say. I know I have faith, but I still get a little scared a times. Chassidy's AML subtype M2 is the best to respond to treatment and she still relapsed twice. Also, the very best chemo out there Ara-C for AML was given first and she still relapsed. It makes it look like the odds are stacked against us. I just have to remember 2 Corinthians 5:7
For we walk by faith and not by sight. I also have to remember that Peter walked on the water as long as he kept his eyes on Jesus. When he looked at the storm he sank. If I look at our storm, I start sinking too. I am just trying to keep my eyes stayed on Jesus to make it through. I am so very grateful that I am a believer during this time. What a privelege and honor it is to know the Lord. I'm glad I know there is more than doctors and medicine in this battle. I can't depend on them. I can depend on Jesus though because He said he is our physician. Some days are just harder than others in this battle.
Wednesday, April 16, 2003 11:16 AM CDT Yesterday and today seem to be going about the same.
She has been on and off the morphine for the joint pain. It gets pretty severe at times.
She started her chemo yesterday. She seems to be tolerating it very well. I really can't even tell she's getting it. That's a blessing. The last thing she needs is nausea on top of the pain she already has. I hope the pain will subside after a few more doses of the chemo. Hopefully it will be ridding the leukemia out of her joints.
She also had to get 2 units of blood yesterday. Her hemoglobin was extremely low like 6 point something. She ended up having to have platlets during the night as well because they are low and she had a nosebleed.
Her spirits seems to be okay even though she's sleeping alot from the morphine. Not eating good either, but I'm used to that now. I think both of our spirits will be okay, being hopeful, until we find out if the chemo worked or not. We are in that hopeful state again right now.
They will not do the bone marrow aspiration to know until about 15 days after the chemo started.
God is still on the throne today and still in control of this!
Monday, April 14, 2003 10:37 PM CDT Today we came to St. Louis to the clinic. From the bloodwork, there were definitely blasts. The plan is to now switch her chemotherapy (again) and get her into remission one more time so we can then go to transplant. The doctor feels optimistic that she will go into remission long enough for us to go to transplant.
The new chemo she is on is a combination of chemo drugs now which consist of Ara-C, Mitoxantrone, and Fludarabine.
For those of you who already know she was on Ara-C back from October thru December are probably wondering why she is back on it if she relapsed in February after getting it. Because the doctor said that it makes the other two medications work better when combined with it. So that is why. And yes, it will make her lose her little bit of hair she's finally grown back again. But that will grow back.
She is in alot of pain tonight. It appears to be joint pain similar to what she had when she was first diagnosed. We will find out more tomorrow. Everytime she has pain somewhere she gets a fever, so guess what? She got a fever so now they've started antibiotics. Her chemo will last for five days. She may not get to come home after she is finished due to her counts being low and fevers.
Her spirits have been pretty good yesterday and today. Mine too. We are back to battle again!! Satan will be defeated! No matter which way God chooses to heal my baby she wins!
The bible says to die is to gain. She will be with the Lord if that be the case. But if God chooses to let her continue to be with me, we still win! Victory is ours in the matchless name of JESUS!
I will be frequently updating while we are staying here.
Sunday, April 13, 2003 0:00 AM CDT I started not to get on the web tonight, but I am so glad that I did. I just want to tell you all who signed the book today how much I appreciate the encouragement. It feels good to know someone else cares and really knows what you are going through.
Today, I met my mother for lunch. She lives about an hour away. I needed to see her. My mom is so great. She's a nurse and has taken care of 3 people with cancer in our family until death including her 2nd husband. I had her for my main support until early this year when her current husband was diagnosed with kidney cancer and had to have one kidney removed in February. She now has her hands full with taking care of him. What a time for my step-dad and daughter to be sick simultaneously. I miss my mom's being able to be there whenever so much. I think she is going to be able to go with us on Monday to St. Louis.
I just go out today and went to the mall. I felt like I was in a "zone" of my own. Chassidy is still over at our friends having fun. My friend said that Chassidy didn't do much today though, was tired alot. Sometimes I wonder if its tiredness or depression. Skylar was with my boyfriend and his girls today playing and riding bikes and stuff. She adjusts to all this very well. You would never really know what was going on if you had to tell by her. She is looking forward to her 6th birthday on May 2nd.
I am looking forward to going to church in the morning. Something I haven't really got to do in quite a while. I pray that the spirit moves mightily and gives me a sense of peace and comfort. I know I've written quite a bit tonight, but I guess I needed to vent.
Friday, April 11, 2003 11:48 PM CDT Yesterday and today have not been very good days emotionally for us.
Yesterday, our doctor called and said that our bloodwork from Tuesday's checkup showed what looked like 12% blasts (leukemia cells). Anything over 5% is considered not in remission anymore. I was really not surprised to hear it. Just a feeling I've had. I guess because I've learned to be on guard in this battle.
We have an appointment Monday morning at the clinic in the hospital for some more extensive bloodwork to know for sure.
The worst news is that we cannot get the transplant if she is not in remission. They will switch her chemo medication to try to get her back in remission, but with each time it can become more difficult.
Chassidy and I had a long talk last night. She wanted me to be honest about everything and I was. It was a terrible night emotionally for both of us. We are trying to hang on to hope but at the same time we are SO TIRED of getting kicked in the teeth everytime we turn around. We are so tired period. This is going on 7 months now. We only had that one month break in January. Its so very emotionally draining. My body feels like I've walked 100 miles.
I can tell she is losing interest in alot of things. I try to stay strong in front of her most of the time, but it seems anymore that is not keeping her upbeat. She just wants to have a normal 12 year old life back. Its so hard for me to see her having to deal with such an enormous burden at such a young age.
She is staying the weekend at a friend of mine and her husband's house. She really enjoys being with them and their kids. They do alot of fun things with her. She said it will help take her mind off everything. So I said you do whatever you feel like doing then.
I will post more Monday hopefully, if not Tuesday. Thank you all so much for your prayers and support. I don't know where we'd be without them. I'm going to try to get some sleep. Its beginning to become difficult though.
Tuesday, April 8, 2003 5:54 PM CDT Today we went to St. Louis for a check up visit. Chassidy's
a.n.c. was only 276 yesterday but today it was up to 490!! Its coming back. The clofarex (her chemo) is known to bounce around like that, but she should be on her way up to stay this time.
Our visit was good. Chassidy has a ingrown toenail that is bothering her. They gave her an antibiotic for it so it will not give her fevers!
We also had more encouraging news! WE MAY HAVE A 6 OUT OF 6 BONE MARROW MATCH!!!! A PERFECT MATCH!!! The Bone Marrow Coordinator said they should know for sure by the end of this week. If not, we still have the 5 out of 6 match. Found out it is a 36 yr. old male. Still don't know what race. I also found out that the race stuff is not always true about matching. They've had African Americans match Caucasians before. It really depends on your family background. You never know what trickles down into your bloodstream. Just because you might "look" something doesn't mean that there isn't something else in your blood!
So that was encouraging news.
We still don't know for sure when we are going to transplant, but it will be very soon. I'm quite anxious. Looking forward to it, but not if you know what I mean.
Chassidy acts as if nothing is happening.
She wants to write some things on this site so be watching!
Thursday, April 3, 2003 8:03 PM CST Today we were able to go to my grandmother's and help with the yardsale. It was just nice to be at grandma's. We aren't able to go there much anymore. Chassidy was the cashier. She made a few dollars from some old stuff she had to sell.
Julie, our nurse from the clinic at the hospital, called today. The home health nurse drew blood this morning and our counts have fell back down. Her a.n.c is like
580 and her wbc (white blood count) is 0.9. Just Monday they were like twice that high. But this chemo, Clofarex, can do that. So no going to school tomorrow for the pizza party. I know everyone is disappointed.
Also, we have good news and bad news. Julie also relayed a message from our doctor. They are working the bone marrow donor up now and really want Chassidy in bone marrow transplant by end of April. That's great, but now we don't get to go on our DisneyWorld Make A Wish Trip. But really its a good thing because I don't think Chassidy is up for a week at Disney. She tires out over small things now. So, I know in my heart the best thing is to get her good and well and then go.
Another good thing is that they are not giving her any more chemo treatments until transplant the end of this month! So as long as she does good, no fevers, etc... WE GET TO BE AT HOME FOR A WHOLE MONTH before transplant!!!!!!!!!!!!!!
I'm excited about that part. So just please pray that everything goes well and we're able to enjoy this time at home. This is the longest we've ever been able to be home!
Wednesday, April 2, 2003 10:15 AM CST Chassidy's been enjoying home the last few days.
Yesterday, she visited her school and classmates. She is
going back Friday for a pizza party.
Her appetite has picked up and she seems to be doing fine.
Her a.n.c on Monday when homehealth drew blood was
over 1,000! Everything else was looking pretty good except
her platelets were still in the 30's. Hopefully they've
started coming up.
Tomorrow she's looking forward to helping great grandma
with a yard sale. She has plans for the weekend too. She wants to spend time with some friends.
HEY I PUT SOME NEW PHOTOS ON TODAY!!
Sunday, March 30, 2003 9:41 PM CST Chassidy seemed to be feeling better today and even eating better. I knew she would, or at least hoped she would, after
being home a few days.
She's acting more like her normal self. She's looking forward to a yardsale at grandma's this week. She loves
those.
Chassidy pretty much just stayed home and watched t.v. today, and I cleaned. We are looking forward to a nice week at home doing whatever we want.
Saturday, March 29, 2003 9:41 AM CST Well. we made it home yesterday! Hooray!
We are not scheduled to go back until April 8th.
We have like 10 whole days at home! That is the longest
we've ever had in between treatments.
We'll find out then what's in the plans as far as
our treatments, trip, and bone marrow dates.
Today is sunny. We are talking about getting out and
doing something fun. I think her mind wants to but her
body is still drained. I'm not going to push her.
Later in the day-
We did get out for just a little while. The bowling alley wasn't crowded so we went. She bowled 1 1/2 games and then tired out. So we came home. I finally got her to eat some homemade chili. She ate good. I'm glad because her eating is not improved much this time. I stress to her that's its important to be strong in her body come transplant time. She just doesn't have an appetite.
She was depressed some this morning, saying home didn't feel like home anymore. It just felt like a hotel we get to visit a few days every now and then. I encouraged her. I think she'll perk up after she's here a few days. I'll try to do as much with her as she can tolerate while she's home.
She probably needs the rest. Maybe tomorrow will be
better for her.
Friday, March 28, 2003 9:59 AM CST Hi everybody, well today is a great day! SSSHH! don't tell Chassidy but I think we're going home today!! Her a.n.c is in the 700's and she's had no fevers. This is the "good" time to go home. When her counts are rising. She can get out and do fun things. Not sure yet when we are coming back. Her primary doctor is on vacation this week.
But last night I got the best news!! The Bone Marrow Coordinator told us that they have found a 5 out of 6 match for Chassidy!!!!!!!!!! GOD DOES ANSWER PRAYER. They will continue to search for a 6 out of 6 up until transplant time. What this means is there are 6 markers they look for. They can use a 5 out of 6 match if the one that is missing is not "crucial". Which the one missing is not crucial in our case, so they can consider it. I didn't expect them to find one so soon from they way kept talking. There are 2 more possibles in the lab that we haven't heard results on
yet.
We are not sure when transplant will be yet. I asked them if we could take our Make A Wish Trip to Disney in May first. I'm sure they'll consider it. Yes, the donor match is a relief, but the road ahead is still long and hard.
Transplant is not joke. She will be very sick. She will not be able to leave out of the room for at least 4 to 6 weeks. Then we will have to "live" in the St.Louis area for 2 to 3 mos. after we are released. She has to be very close to the hospital because something bad could go wrong quickly.
I think we are still planning to go ahead with the drive. I know since we have a 5 out 6 match the doctors will not wait for the results from our drive to be put into the registry. That would be like July probably. The doctors would say that is too long and the chances of finding a match from our drive are slim anyway. But I think its a good thing to go ahead and do in our community anyway.
Chass should be on her computer when she gets home talking to some of you. I'll let her be in charge of communication for awhile!
Thursday, March 27, 2003 9:37 AM CST Yesterday was a little better day for Chassidy. She did have to go back on the morphine drip due to some rectal pain during the night. Her counts had improved a little yesteday also. I made her get up and go out on the rooftop garden also. It was such a nice day. We were able to stay out there for about an hour. She was watching t.v. also, which is something she hadn't been doing.
This morning, we got good news. Her counts have improved even more. Her a.n.c. is in the 400's but its not an accurate count. Its hard to explain. They need at least 100 cells in her blood sample to get an accurate count, but they only had 79. They did see more segs which are the type of white cells we need. But out of the 79 cells the a.n.c is calculated in the 400's. I know that its not quite that much but it is probably close. If her cells keep growing this way, tomorrow they should have 100 cells to work with and we can get an accurate a.n.c. If she keeps this up and has NO fevers, I'm sure we'll get to go home in a few days.
YIPEE!!! She had to get platelets this morning because they are like 21 and her nose started bleeding. I'm sure she'll get blood as well today because her hemoglobin (red cells) are only a 7.8. She still wasn't eating yesterday and the nurse talked to her about it. She promised me today she was going to eat. It seems like when she knows she's close to going home everything does improve, including eating. I think they are cutting back on the morphine today also because it keeps her groggy. The more her counts come up, the less she has the rectal problems.
Thank you all for your prayers!!
Tuesday, March 25, 2003 6:35 PM CST Today was a little better. She was more perky and talkative. They did another chest x-ray and it was still clear. Praise GOD! She has been tired throughout the day. She doesn't get much rest at night in the hospital.
The doctors even seem to think she has improved. She is still running fever on and off, and she is still on the 3 i.v. antibiotics. She ate some cereal this morning. We are still waiting for her counts to improve so we can go home! Its hard being 2 1/2 hours away from home, especially when I have another daughter who is 5 there.
I am so glad I did this webpage. I have been in contact with some great and helpful people. I look forward to it everyday while we are here in the hospital especially.
Monday, March 24, 2003 9:58 PM CST Today was not a good day all day long for Chassidy. She was pretty nauseated all day. Still not eating. She wouldn't talk much or even watch tv. I just left her alone and let her rest. Around 4 p.m. they gave her marinol, which is for the nausea. It seemed to help. She asked for something to eat about 9 p.m. I about jumped over the bed to get it for her I was so excited. Hopefully the marinol will help her eat. She didn't have a fever at 8 p.m. either! Doctors came in twice today which is unusual. They know there's an infection, but haven't found where yet. She's still on all the antibiotics to fight whatever it is. I made her get up and walk the hall 2 times today and will again in a little while. She needs to get up and walk around so pneumonia won't set in her lungs. Hopefully tomorrow she will improve even more. Her a.n.c. is about 52 today.
Sunday, March 23, 2003 9:44 PM CST Since the last journal entry, up until today not much had changed. Today she has been vomiting some. She has a cold. Colds are harder on her than us because she has no immune system right now. They had ordered chest xrays but her lungs are clear. I was so scared they were going to say there was something in her lungs. She is still on several intravenous antibiotics. She does not look good. She is still having some rectal pain and needing the morphine at times. She did not even smile when I came in after not seeing me for a few days, so that definitely let me know she does not feel good. They have ordered her to be up walking the halls at least 3 times a day and she has to blow into a machine 10 times an hour to expand her lungs since she's not getting up out of bed much. Pneumonia can definitely set in if she doesn't exercise her lungs. She hasn't ate hardly one thing since she's been here. I really just wanted to cry when I walked in and seen her. This is tough, very tough for me to deal with, especially here by myself. But with prayer I will make it through.
Thursday, March 20, 2003 6:56 PM CST There has not been much of a change since Tuesday night. She is still in the hospital on morphine. She has been very tired sounding when I've talked to her. She has been running fevers on and off. They have her on i.v. antibiotics to rid whatever infection is causing the fever. Most of the time it is an infection in her broviach line.
She hasn't felt up to talking much. I think she's probably sad also knowing that she can't come home for a while.
Please just keep her in your prayers. Many things can happen when her white count is this low.
She finally did get a room to herself. They don't have private rooms there yet. There is one isolation room though and she was lucky and got it this time. So we don't have to worry about noisy and rude roommates or germs!
Tuesday, March 18, 2003 11:17 PM CST Today started out to be a pretty good day until about 2 p.m. when the pain started. It is the rectal pain that she suffers frequently from after her chemo treatments and her counts drop very low. I took her to our local hospital where they got her on morphine. That is the only thing that takes away the pain for her. It is very hard to see your child rolling around in the bed crying out with pain and you are helpless. On a scale from 1 to 10 she is at a 10 in pain at times. I get angry because I'm so tired of her having to suffer.
St. Louis Childrens came to get her by ambulance. I always feel such a sense of relief when she gets back "home" to St.Louis. Even thought we don't like the long stays, I know she's in good hands. She will probably be there for awhile until her immunity comes back up.
I didn't go up because I needed rest. She was stable, on the morphine and not in any pain. She was not running a fever so I felt ok about it. Besides, she knows everybody at childrens on the oncology floor. She is highly favored among all the nurses and they spoil her rotten. She is definitely treated like the princess that she thinks she is there.
Tuesday, March 18, 2003 11:07 PM CST Today seemed like it started out pretty good. She was feeling fine. Then about 2:00 p.m. the pain started in. It is rectal pain that she suffers from every time her a.n.c drops after chemo treatments. I took her to our local hospital where they got her on morphine. The morphine is the only thing that can stop the pain for her. On a scale of 1-10 she is at a 10 at times with pain in that area. Its so difficult to see your child rolling around in the bed and crying in tremendous pain and you are helpless. A part of me is angry that she has to keep going through this.
St. Louis Childrens came to get her by ambulance tonight. She is on her way back for probably a pretty long stay until the counts recover to where her immunity is built back up. Its the hard part now when the counts are low anything can happen in her body. I needed rest so I didn't go tonight. She wasn't running a fever so I felt ok about it. She knows everybody there and the nurses definitely favor and spoil her to death. Its such a relief when she's sick like this to get her "home" to St. Louis. Even though we hate the long stays, I know she is in good hands.
Monday, March 17, 2003 5:24 PM CST Chassidy started feeling a little better this afternoon. Was able to hold some soup and juices down. She has perked up and doing better.
Home health came this morning to take her blood. Her a.n.c has already dropped to 20 which is basically zero considering 500 is the magic number to where she's not so prone to infection. I just wonder how long we'll be able to be at home now. Her potassium was low so we are trying to get that back up through i.v. fluids and powerade drinks.
It will take probably 3 to 4 more weeks for her counts to recover well. That's the scarry part through this whole thing. When your child has no immune system, anything can happen in their body since your body has its own bacterias and infections that can attack its ownself. So far we have really been blessed to have nothing but central line infections (her catheter line for her medications and blood
draws) which have been cured with long periods of staying in the hospital on antibiotics.
Sunday, March 16, 2003 4:06 PM CST We were able to come home today. Chassidy is still feeling the side effects of the chemo though. She is very nauseated and has been vomiting on and off. She did well until Friday night when her chemo started then she got sick for some reason. She didn't do very well yesterday either. Just laid around alot. She's very worn out. She is getting the Zofran and Marinol for the vomiting but it doesn't seem to be helping much for some reason this time around.
Saturday, March 15, 2003 12:24 AM CST We didn't do too much yesterday. But Chassidy did want to eat at Denney's again. She loves the steak and shrimp.
Last night about 30 minutes after her chemo began, she started getting nauseated and didn't feel good all night.
I don't why she'd done so well the past 3 days and then gets sick on the 4th treatment. I guess that's just how it is sometimes.
This morning she woke up not feeling very good, but she still wanted to leave the hospital on pass again. We tried to visit the zoo, but she got sick so we had to come back early. She is sleeping now. Tonight is her last treatment and we will be able to go home tomorrow as long as there are no fevers. She is looking very forward to leaving. We are both tired of being here.
Thursday, March 13, 2003 5:17 PM CST Yesterday and today were great days for Chassidy. We were given a pass out of the hospital both days. Yesterday we went to Wal-Mart and to the movie. Today we went to the mall and to the Magic House. She has enjoyed herself. She is doing so well with this new chemo, which is called Clofarex, its unbelievable compared to the last time. I still think the marinol, which helps with the nausea/vomiting has helped to do the trick. If she continues to do this well, I look for us to be able to go home Sunday morning.
I am still working on getting a bone marrow drive set up in our community. Its going to be very hard to find Chassidy a match since she is bi-racial. Especially since me, her sister nor dad was a match. Its going to take alot of work to get this drive organized. Its also going to take money. I have to get some fundraising going as well. If anybody wants to help with anything please feel free!! I'd greatly appreciate it. Or if you have any ideas on fundraising, please email me!
I am going to get some pictures of her on this site soon. Just be patient with me! I have my plate full!
Wednesday, March 12, 2003 9:56 AM CST Chassidy did well last night with her first dose of chemo. She was able to get the marinol before her chemo started so she was not nauseated or vomiting like she did the first three days the last time. She did have some jaw pain in the middle of the night that was strange. They gave her some pain medication and that finally made it go away.
She's in a good mood this morning and eating. Since her counts are good, she's not on any antibiotics, and she doesn't get chemo again until tonight we were able to get a pass to leave the hospital today for awhile. Its a beutiful day to get out here too. She is excited about it. It definitely helps the stay here.
Tuesday, March 11, 2003 4:54 PM CST We are back at the hospital today after a great week at home. Chassidy had a lot of fun at home. After a 16 day stay, any time at home you learn to appreciate. We spent today talking to several people who will be involved in our life everyday when she receives her bone marrow transplant.
We don't know when that will be yet. We don't have a match as of yet. We are still waiting on her dad's results.
Today, we had good news. She had to get another bone marrow biopsy done to see if the new chemotherapy is still working. She had only 5% blasts (cancer cells) in her bone marrow which is good and "normal". So they are going to give her another round of the same chemotherapy starting today. She will have it for 5 days, then hopefully if things go well we can come home for a few days.
The doctor basically told me today to sum it up that she is giving her another round of this chemotherapy. Possibly another one after this. But she can't keep her on it too long because the leukemia becomes resistant so she will have to switch her to something else. In other words, sort of buying time to get her a donor match. One thing she did say that I didn't like was the fact that the first chemotherapy she was on before this relapse was the very best for her type of leukemia (there are several subtypes of AML) and it didn't work.
But as long as God is still on the throne, I am believing for a miracle. That is definitely what it will take. The odds are definitely stacked against us in every area.
They did say that unless she is very ill or we have a donor match located, we will be able to go to DisneyWorld in May.
I also am getting in gear to do the donor drive soon. I will be getting with many of you to do this.
Wednesday, March 5, 2003 8:34 PM CST Well, Chassidy got to come home yesterday on Tuesday. She is happy and doing good at home. She is eating better. I know alot of not eating in the hospital came from depression from being there so long and sick of the hospital food! She told me tonight she is already dreading going back to St.Louis next week. I told her not to focus on it already, because it would ruin her good days at home.
She is looking forward to her grandmother coming and staying tomorrow and to maybe going to the movies this weekend.
Sunday, March 2, 2003 7:27 PM CST Chassidy seemed to be doing fine today. Her a.n.c. is rising and she may be able to come home tomorrow. Today is her 15th day in the hospital. She has been depressed at times wanting to come home. Its really hard being that far away from home and basically being confined to your hospital room. Hopefully things are looking up and she will be coming home for a few days before her next chemo treatment.
Sunday, March 2, 2003 7:21 PM CST This page has just been created. Please check back for additional updates.
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