Journal History
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Friday, January 26, 2007 5:50 AM CST
Well, there's really not much for me to say today, for most it's just another day, for me it's a day to ask the same question I ask every other day, why? I should have a little girls waking up all excited about her birthday, I should be baking a cake today, I should be having friends over to sing Happy Birthday, there should be presents to open, but there isnt. The kids will go to school, Jonathan & I will do our normal stuff, and the world will go on around me.
You would be 8 today mushie girl, wonder what you would want on your cake? Wonder what kind of cake you'd want, would you want chicken nuggets for dinner? I miss you angel face...
Friday, January 26, 2007 5:50 AM CST
Well, there's really not much for me to say today, for most it's just another day, for me it's a day to ask the same question I ask every other day, why? I should have a little girls waking up all excited about her birthday, I should be baking a cake today, I should be having friends over to sing Happy Birthday, there should be presents to open, but there isnt. The kids will go to school, Jonathan & I will do our normal stuff, and the world will go on around me.
You would be 8 today mushie girl, wonder what you would want on your cake? Wonder what kind of cake you'd want, would you want chicken nuggets for dinner? I miss you angel face...
Saturday, May 6, 2006 10:43 PM CDT
Four years ago I was sitting on the patio of the Ronald McDonald House, a mom who was also staying there was walking in from Duke and asked me if I heard that they lost a child in the PICU today, she came closer and saw my face, and said 'no, not Kayleigh'. Yes, Kayleigh, at 4:08pm I held my daughter as she took her last breath.
Today has been a blur, I've kept myself busy, took the kids to the Spring Carnival at school, watched them enjoy themselves playing games and seeing their friends. Meanwhile my heart was breaking, my child was missing. To the other parents, I was just another parent having a fun day with the kids, nobody knowing my pain. Later in the evening I went to see Eddie Money in concert in Smithfield, the entire time I was there I kept thinking that this was one of the last places we took Kayleigh, we took the kids to see Santa. Every time I go there I think of her little face smiling and laughing with the fake snow that Christmas.
Now the day is over and I'm sitting her in front of the computer, with no distractions, thinking back.
Taylor was in my closet this morning and brought out some pictures of Kayleigh, she asked me if Kayleigh was in the same hospital she was in when she cut her finger, I told her no, she then asked me if the hospital that Kayleigh was at was only for people to die. How do you explain this to a five year old.
I'm just rambling and probably not making much sense, but, that's just where I'm at right now, nothing is making much sense to me anymore
Hugs and Love
Sandi
Kayleigh
Kayleigh's Battle In Pictures
Kayleigh's Kause
Friday, April 28, 2006 8:56 AM CDT
I know it's been forever since I've been here, things are going fine. The kids are doing great. John started a new job at the end of March and is really happy with his decision. Josh is playing baseball now, and loving it, especially since his team is The Marlins :) Taylor is doing T-Ball, and well, lets just say, there's a lot of work to be done :) But she's doing great! Jonathan is a ham, he's so big, about 37" & 40lbs! He's 21 months now, I can't believe it's been almost 2 years since he came into our lives. In the same breath, I can't believe it will be 4 years next weekend since Kayleigh left us. It just doesnt seem real. It kills me to think that Jonathan will have no memories of his sister.
I am asking if you could keep my best friend Debbie in your thoughts and prayers. Her dad passed away yesterday after being diagnosed with Stage 4 non small cell lung cancer 6 weeks ago.
Have I told you all lately how much cancer sucks!
Well, that's it from me for now, hug and kiss your kids and loved ones every chance you get!
Hugs and love
Sandi
Kayleigh
Kayleigh's Battle In Pictures
Kayleigh's Kause
Thursday, January 26, 2006 8:59 AM CST
I thought of you with love today, but that is nothing new
I thought about you yesterday and days before that too
I think of you in silence, I often speak your name
All I have are memories and your picture in a frame
Your memory is my keepsake, with which I'll never part
God has you in His keeping
I have you in my heart
~Happy Birthday Sweet Angel~
Kayleigh
Kayleigh's Battle In Pictures
Kayleigh's Kause
Sunday, September 4, 2005 5:57 AM CDT
Wednesday, August 17, 2005 1:47 PM CDT
Saturday, July 30, 2005 12:07 AM CDT
Friday, May 6, 2005 2:44 PM CDT
Tuesday, January 25, 2005 11:40 PM CST
Friday, December 31, 2004 12:08 AM CST
Friday, December 17, 2004 9:18 AM CST
Thursday, September 9, 2004 12:29 AM CDT
I know it's been a while since I've updated and I do apologize for that, things have been a little crazy getting adjusted to a new baby. Jonathan is doing great, he's getting so big, at seven weeks he weighed in at 14lbs8oz!!! I only wish that Kayleigh could be here with him, I know she's with him in spirit, but I wish she was here physically.
The Radiothon for Duke Children's Hospital started today (09/09/04), and continues until Sunday (09/12/04, I am asking that you take a minute out of your day and go to www.wralfm.com and check out the stories and pictures from the Radiothon, and if at all possible, make a pledge, or you could call directly, the phone number is on the website. Every penny that is collected this weekend goes directly to the children at Duke, for toys, games, etc., children just like Kayleigh. It's because of the radiothon that these kids have all the activities they do to help the time they spend in the hospital a little easier. I will be going up there on Saturday night to answer phones and take pledges like I did last year. To some people it may seem strange that I do this, but it gives me a sense of satisfaction, as weird as that may sound. So please, if you can, please make a pledge this weekend.
Well that's enough from me, as usual, HUG & KISS YOUR KIDS & TELL THEM THAT YOU LOVE THEM!!!!!!!!!
God Bless
Sandi
Monday, August 2, 2004 7:04 AM CDT
On July 19, 2004, at 9:25am, Kayleigh's little brother Jonathan Joseph made his appearance into the world. He weighed 9lbs 6oz, and was 21" long. We know Kayleigh bug is smiling down on us all, and loving her new little brother. I only wish she could be here to be the great big sister that she was.
Thursday, May 6, 2004 10:30 AM CDT
It's been two years baby girl, it seems like only yesterday you were taking your first steps, looking up at us with those big blue eyes, full of joy and laughter. We hold all those memories so tight, never letting them go.
You made us laugh all the time, like when you drank from one of Taylor's bottle in the hospital, or when you got angry at the horse at the ranch, and stormed off with your little pony tail bobbing up and down, when you would tell me 'I not no raganuttin' when I told you you were a ragamuffin, the day you asked me to get your skin and put it back on after you fell and scraped your knee, the way you would point your finger at Josh, while saying 'YOU HEAR ME!!', the times you stood in front of Grandma's fridge, saying 'OH MAN!!' or the Easter you picked up a giant Easter egg from Grandma's lawn as you yelled happily 'I got one' Oh Mushie girl, we miss you and love you so much.
Sunday, April 11, 2004 11:11 AM CDT
Happy Easter sweet baby girl.... I can't believe it's been two years since we've spent Easter together. I hope you like your flowers, Taylor was worried that you would not be able to get them, but I told her you would. She added some 'stuff' for you, I hope you like it.
We love you and miss you so, so very much. What we wouldnt give to have you here with us.
Links to other Kayleigh Sites
Picture Trail
Kayleigh's Kause
Memorial
Kayleigh's Quilt
Wednesday, March 31, 2004 8:37 AM CST
Two years ago today we had our little girl home with us for Easter, It all seems so clear, she was sooo happy. The kids were going crazy looking for Easter eggs, Grandma and Grandpa were here from Florida and Kayleigh was basking in all the attention she was getting. She took her first 'new steps' on this day, I only wish my scanner was working so I could share the pictures from that moment. We went to church and she was soooo happy to be there, she just sat with me and smiled the entire time.
Jouranl Entry from two years ago...Life can certainly throw us some cruel blows
Sunday, March 31, 2002 at 08:44 PM (CST)
Happy Easter everyone! We are home again. Unfortunately she was not able to stay for her entire 6 days last week. She ended back up in the hospital on tuesday night, she was retaining too much fluid, and ran a slight temperature early tuesday morning, so back we went. She started her chemo on thursday, and had 4 doses, ending on friday afternoon, then she was released until next thursday when she will go back to finish her chemo, providing she does not get a temp or anything this week.
She's doing really well, came home with no pumps, only oral medications, which is awesome! She actually walked on her own today! About 2 feet, but it's a start!
I will try to add some more pics to her page tonight, but the computer is being difficult :0)
Thanks for all your prayers, and lets just pray this round of chemo is easier on her than the last one :0)
Love,
Sandi
Maybe I'm weird, but it's as if part of me is still living at Duke, I still see myself walking down the hallway, talking to the nurses, doctors, social workers, child life specialist, etc. I don't think my spirit will ever leave there. I miss it alot up there. In my mind if I were still there, Kayleigh would still be alive. Unfortunately, I only have the memories to live by.
Please consider stopping by Share The Love and adopting a child, there are so many kids out there that would love to get a special hello, and so many families who have lost kids that would love to know people are still thinking of them.
As always, thank you for stopping by, if you do, please let us know by signing the guest book. Also, kiss your kids and tell them you love them every chance you get, life is too short.
Love
Sandi
KAYLEIGH'S OTHER SITES
Picture Trail
Kayleigh's Kause
Memorial
Kayleigh's Quilt
Tuesday, March 16, 2004 6:00 PM CST
Well, I guess it's time for me to update. I know it's been a while, I've been having problems staying online with dial up, so I caved and got dsl, makes life a helluva lot easier!
I just can't believe in a few months it will be two years since Kayleigh left us, it just does not seem that long ago. It seems like only yesterday she was riding her bike down the hallway at Duke with shamroks stuck to her gown and a special blue bear attached to the front of her bike. We had just received the news she was in remission, amazing how short lived that news was. I sit and look at her smiling face every day and long to see it again, just one more time, to be able to hug her, hear her tellytubby awaken me from sleep, wake up to 4am labs, just one more time. It gets harder and harder each day watching Taylor, and wondering if Kayleigh would have done the things Taylor is doing. We started Taylor in preschool last week, which was very bittersweet, I know Kayleigh would have loved going to preschool, she loved people more than anything in the world.
Well, we found out what our new addition is going to be, and we're having another boy! We have not 100% decided on a name for him as yet, but as of right now he will be named Ryan Joseph. Joseph is my dad's name, he passed away while I was pregnant with Taylor. I keep some sense of sanity by thinking that Kayleigh is with him now, and he is loving his grandaughter that he never got to meet here on earth.
Well, I guess that's about it. Please check out the links below for Kayleigh's other sites. Also, again, please hug, kiss and tell your kids you love them every chance you get. Life, as I have found out, is too short.
Love
Sandi
Links to other Kayleigh Sites
Picture Trail
Kayleigh's Kause
Memorial
Kayleigh's Quilt
Monday, January 26, 2004 4:47 PM CST
Friday, January 2, 2004 10:59 AM CST
To sum it up in the words of Pink Floyd, Comfortably Numb.. I guess that's the best way to describe my mental state right now. It was two years ago today that I was on the phone with John who just got off the phone with the peds office about taking Kayleigh in later that day. She was so excited because it was going to snow that day, and the kids had never seen snow, even through her being sick she was so looking forward to that first snow. I guess two years ago today was the day my world stopped. I remember walking over to the peds from the lab and it started snowing, I was carrying her and she was smiling as she felt and saw snow for the first time. I smiled with her but knew in my heart my life was about to change in a way I could never imagine. We sat in the peds office and watched the snow fall, then I got the news, her blood work was irregular, and she possibly had leukemia. We called John and I somehow drove home, I got there and collapsed in the doorway, Josh was outside playing in the snow with the kids from the neighborhood they were laughing and having a good time, meanwhile, my world, our world was crashing down. We took the longest drive in the ambulance to Duke, the night, the next day was all one long day. This just was not happening, this perfect little girl, that had done nothing in her life but bring smiles to people's faces was now going to be fighting for her life, against a monster so ugly and so strong.
Taylor is now just beyond the age Kayleigh was when she left us, and I look at her and wonder if Kayleigh would have done this or that had she made it to this age. I can't believe my little girl would be five this year, in a few weeks we would be celebrating her birthday, she would be starting school this year, her first tooth would be getting ready to fall out. So many things that we will never know, never experience, never feel the emotions. Instead the only emotion we will feel when we think of these things is sadness.
Sweet, sweet Kayleigh bug, our mushie girl, you brought so much joy to our lives in your short time with us. We love you so much and miss you more than anybody could possibly imagine.
Take care, don't forget to hug, kiss, and tell your kids you love them. Please keep all the other families out there in your prayers, the ones who have lost their children, as well as the ones who are fighting along with their children for their lives.
Wednesday, December 24, 2003 4:26 PM CST
Well, it's Christmas Eve... almost time to get the cookies out for Santa, get the kids off to bed and get the presents under the tree. Kayleigh loved Christmas, or as she called it 'Chrisum', she loved 'Santa Closet' as long as she didnt have to sit on his lap! He brought her presents, and that's what was important. I could make this a lengthy entry, but there is really no way of putting my feelings into words right now.
I pray that you all have a wonderful Christmas and New Year. To all the parents who have the memories instead of the child a special hug goes out to you.
Please don't forget to take a moment to hug and kiss your kids and tell them you love them.... and please, say a prayer for all the other parents going through yet another holiday without their child.
Merry Christmas
Love
Sandi
Monday, November 24, 2003 10:45 PM CST
Monday, October 27, 2003 9:13 PM CST
Wednesday, October 8, 2003 8:22 AM CDT
I know it's been a while since I've update, things have been a bit out of sorts. Monday was one year and five months since Kayleigh left us, it just doesnt get any easier. She would be turning five in January, and starting Kindergarten next year, getting on the bus with Josh, coming home with tales to tell, so many things that are not going to happen. Every day it hits me harder and harder, I'm not getting her back, she's never coming home, and it just doesnt seem real. As a parent your child is supposed to mourn for your loss, not the other way around.
Josh goes to Camp New Horizons this month in South Carolina, it's for the children who have lost their sibling to blood related cancers. He really enjoyed himself last year, and I think it was a great experience for him. He is so looking forward to going again.
Our Light The Night walk was a few weeks ago, we had a small but strong team. I believe everybody had a good time. The Florida walk was the same night as ours, a couple of local papers interviewed my mother in law and as soon as I get the articles I will post a link to them. There is a slideshow below with pictures from both walks.
Tuesday, September 9, 2003 11:00 AM CDT
This past weekend was so full of ups and downs. It was the Children's Miracle Network Radiothon at Duke. We spent some time up there, and it was so bittersweet. I hated seeing the kids with cancer, and another part of me wished that one of them were Kayleigh. I know that may seem odd to some people, but that would mean she would still be with me.
A friend and I volunteered on the phone bank, which was really great. I got to see a few Dr's and Nurses that I had not seen since Kayleigh left us, which was great. There were times that it was hard to answer the phones, especially when the montages were being played of kids that have left us, but I held tough and went on. At one point at home Butterfly Kisses was on the radio and I started crying, Taylor came over to me and said 'It's OK mommy, don't worry, Kayleigh soon come back' Well that did me in for the day. I was useless to the world, I just sat on the couch and listened to the radio and cried pretty much all day. I'm not even sure what my family ate that night.
Well, we've got less than two weeks to the LTN walk this year, we really don't have a great turnout here, but hey, it's not too late, if anybody wants to join us or sponsor us, we've got time!!! :0) I don't think Kayleigh's Kause will have a team next year, I think I'll just volunteer instead. We also have a team walking in Pompano Beach, FL on Sept 20. I want to thank everybody that is participating with us this year.
We will be carrying a banner with Kayleigh's picture on it, we will also be remembering other friends of ours that lost their battles with Leukemia.
If you want to register to walk either with us in either state or on your own please visit Light the Night, once you start registering you will see the team names and then choose Kayleigh's Kause from the list. Or you could email me and I will be more than happy to assist you with either walk
A Bit of Info:
Leukemia is the Number 1 killer disease of children under the age of 15, and that by the age of 20, 1 out of every 330 children will be diagnosed with some form of cancer.
On an average day, 46 family’s lives are turned upside down as they are told their child has cancer. Approximately 2300 American children die per year.
While more and more children are surviving, the rates are not good enough. ALL (Acute Lymphoblastic Leukemia) has an approximate cure rate of 85whereas, less progress has been made in treating other, for example AML (Acute Myelogenous Leukemia) has an approximate 40urvival rate.
I guess that's about it for today, as always.. HUG, KISS & TELL YOUR KIDS YOU LOVE THEM!!!!
God Bless
Sandi
LINKS
Kayleigh's Fight with AML in Pictures
Jan - May 2002
Non Profit Organization in Kayleigh's memory, to assist families at Duke
Kayleigh's Kause
Memorial Quilt, stop by and add a square
Kayleigh's Quilt
Kayleigh's Memorial Page, made by a WONDERFUL person, thank you Phyl
Kayleigh
Day of Remembrance
Remembrance
Light The Night Walks that Kayleigh's Kause teams participated in across the US
Light The Night 2002
Monday, August 18, 2003 11:12 PM CDT
I'm sorry for taking this long to update the page, things have been a bit hectic here. Josh started back at school last week, which he is ecstatic over! I think the kids had a good summer, we took them to Carowinds a couple of weeks ago, sort of an end of summer hurrah. They had a blast! I only wish Kayleigh could have been there to see all her favorite Nickelodeon characters.
I keep thinking of all the things that she never got to do, things that Taylor does on a daily basis. Little things, the kind that you normally would not notice if you werent thinking about it, like playing in the snow, blowing out 3 candles on a cake, going swimming in the ocean, riding rollerblades, riding a real bike (not a therapy bike). Just day to day things. Taylor is starting to remind us so much of Kayleigh these days. We were in VA for a birthday party this weekend, and Taylor was walking across the park, her little arms were swinging, she was a wreck and she had that 'attitude' about her, anybody who knew Kayleigh, know's what attitude I'm talking about. My friend and I just looked at her and smiled a happy/sad smile.
OK, well enough of that.. Time for me to ask for your support. Once again Kayleigh's Kause is participating in the Leukemia and Lymphoma Society's Annual Light the Night Walk. The walk here is taking place in Raleigh on Sept 20. We have a team formed here in Raleigh and another one in Pompano Beach, FL.
Please help us support this event again this year, either by walking with us, or in your own state, or by sponsoring our team. So far we only have 11 registered walker's in NC, last year we had over 40, so if you're here in the area and would like to walk with us, please, please contact me.
Once again we will be carrying a banner with Kayleigh's picture on it, we will also be remembering other friends of ours that lost their battles with Leukemia.
A Bit of Info:
Leukemia is the Number 1 killer disease of children under the age of 15, and that by the age of 20, 1 out of every 330 children will be diagnosed with some form of cancer.
On an average day, 46 family’s lives are turned upside down as they are told their child has cancer. Approximately 2300 American children die per year.
While more and more children are surviving, the rates are not good enough. ALL (Acute Lymphoblastic Leukemia) has an approximate cure rate of 85%, whereas, less progress has been made in treating other, for example AML (Acute Myelogenous Leukemia) has an approximate 40% survival rate.
If you want to register to walk either with us in either state or on your own please visit Light the Night, once you start registering you will see the team names and then choose Kayleigh's Kause from the list. Or you could email me and I will be more than happy to assist you with either walk.
Once again, I'm asking that you keep Cameron in your prayers. He was able to go to Disney last month, and from what his mom wrote, he had a ball!!!
I guess that's about it for today, as always.. HUG, KISS & TELL YOUR KIDS YOU LOVE THEM!!!!
God Bless
Sandi
LINKS
Kayleigh's Fight with AML in Pictures
Jan - May 2002
Non Profit Organization in Kayleigh's memory, to assist families at Duke
Kayleigh's Kause
Memorial Quilt, stop by and add a square
Kayleigh's Quilt
Kayleigh's Memorial Page, made by a WONDERFUL person, thank you Phyl
Kayleigh
Day of Remembrance
Remembrance
Light The Night Walks that Kayleigh's Kause teams participated in across the US
Light The Night 2002
Thursday, July 10, 2003 7:53 AM CDT
Well, it's that time again.. SUMMER! Man is it hot! The kids have been keeping me busy, as well as helping me lose my sanity, but oh well... the joys of motherhood! :0)
Things here are going relatively well. We are participating in the Light the Night walk again this year, but I doubt we're going to have as big a turnout as last year, so far I've only got about 10 people walking with us. But hey, 10 is better than none right? If you're interested in walking with us, or forming a team in your area, please do so by contacting us!
Kayleigh's Kause is holding a Back to School raffle, the drawing will take place in August. We're hoping that this one will be as successful as last years raffle. If anybody is interested in helping us out with this, please let me know.
Now that I have my mind occupied on other things right now (raffle/walk) I seem to be becoming less of a hermit, it seems to be a cycle. If I'm involved in helping others in some way my days seem to be a lot easier, it's the times I'm not doing anything that I seem to sink lower and lower. But, I guess that's all a part of the entire grieving process.
A very special little boy to us all, and Kayleigh's 'boyfriend' Cameron is not doing so well, if you could please keep Cam in your prayers I'd really appreciate it.
I guess that's about it for today, as always.. HUG, KISS & TELL YOUR KIDS YOU LOVE THEM!!!!
God Bless
Sandi
LINKS
Kayleigh's Fight with AML in Pictures
Jan - May 2002
Non Profit Organization in Kayleigh's memory, to assist families at Duke
Kayleigh's Kause
Memorial Quilt, stop by and add a square
Kayleigh's Quilt
Kayleigh's Memorial Page, made by a WONDERFUL person, thank you Phyl
Kayleigh
Day of Remembrance
Remembrance
Light The Night Walks that Kayleigh's Kause teams participated in across the US
Light The Night 2002
Tuesday, June 17, 2003 4:33 PM CDT
Well, here we are, two weeks into summer vacation. Man, does time go by quickly. It's hard to believe it's been over a year already, the hospital bags are still in my closet, still packed from our last trip home (yes Caroline, I am still in possession of 'Patient Belonging' bags), the clothes are still in the closet, my excuse for not boxing them away is, 'Taylor will fit into them soon enough'.
I've been doing alot of soul searching lately, and I've noticed something and just want to say.... 'We're not contagious' I don't know if this has happened to other families who have suffered the same loss we have, but it's as if friends and relatives who have become, or are becoming parents for the first time, are limiting their contact with us to nil. No phone calls returned, no phone calls answered. Now I know I rarely talk on the phone, but John does, and he calls to see how people are doing, so, please, remember, just because our child got cancer and died does not mean yours will. I know it's scary, but people, we're not contagious, we are still the same people, minus one.
Well, it's that time of year again. Time to keep my mind occupied. The Light the Night walk is coming up in September and we have once again formed a team here in NC, we also have one in South FL. Last year between all the teams I know we raised well over $5,000, I'm hoping we can beat that this year.
Prayers Please
I just learned of two children diagnosed within the past week, a little boy about 16mos old here in NC and a little girl about 5 or 6 in PA, I do not know what type of leukemia they have, as I find out more information I will pass it on, but please, could you keep these two children and their families in your prayers? Thanks
Adopt A Kid
There is a wonderful woman Chris, who's son Gooch has ALL. With the help of a friend of hers, they have started ADOPT A KID (go to the link that says Caring Bridge) There you can find many children who are fighting a variety of diseases. If you could, check in on some of these kids, drop them a line in their guestbook, hey, maybe even 'adopt' a family. Also, please don't shy away from the families who have lost their children, trust me, they need support as well.
Carry Over
I'm still looking for pictures of Kayleigh that some of you may have, also, please share any memories that you may have of times spent with her, either in the hospital or at home. Thanks
Well I guess that's it for now from me, may God Bless you all and thanks for stopping in.
Love
Sandi
LINKS
Kayleigh's Fight with AML in Pictures
Jan - May 2002
Non Profit Organization in Kayleigh's memory, to assist families at Duke
KayKayleigh's Kause
Memorial Quilt, stop by and add a square
Kayleigh's Quilt
Kayleigh's Memorial Page, made by a WONDERFUL person, thank you Phyl
Kayleigh
Day of Remembrance
Remembrance
Light The Night Walks that Kayleigh's Kause teams participated in across the US
Light The Night 2002
Tuesday, May 6, 2003 6:09 AM CDT
Thursday, May 1, 2003 5:34 PM CDT
One year ago today started the beginning of the end.. this would be the last time I would hold my baby while she was still with us.. I will never forget the doctor leaving the room after telling us Kayleigh was going back to PICU and starting radiation again, and if it did not work, there were no other options... I sat on the bed with her and pulled her up to me and kept telling her I loved her and cried. I knew at that moment that would probably be the last time I would feel her breathing against me, the last time I would bury my face in her neck and smell her sweet smell, the last time I would feel her little arms around me, as weak as they were.
In five days it will be one year since Kayleigh left us, and it just does not seem to get any easier. Yes, I put on a great face for the world to see. You see, life goes on, no matter what, the seasons change, and people continue. It seems as if I am stuck in a time warp of some sort, the world is going on around me, but I'm just not catching up with it. It's as if I have crawled into a shell and I'm observing it all and I just don't like it.
Please, cherish every moment you have with your children, and say a prayer for all the children who are battling various dieseases.
Love to all and God Bless
Sandi
CARRY OVER:
I am trying to collect all the pictures that people have of Kayleigh, if anybody out there has pics that I don't have, family and friends, please let me know. I will cover the copying fee's, I really need to have moments that you captured which I did not. Also, if anybody has any memories good or bad that they want to share about Kayleigh, please put them in the guestbook.
LINKS
Kayleigh's Fight with AML in Pictures
Pictures Jan 02-May 02
Non Profit Organization in Kayleigh's memory, to assist families at Duke
Kayleigh's Kause
Memorial Quilt, stop by and add a square
Kayleigh's Quilt
Kayleigh's Memorial Page, made by a WONDERFUL person, thank you Phyl
Kayleigh
Day of Remembrance
Remembrance
Light The Night Walks that Kayleigh's Kause teams participated in across the US
Light The Night 2002
Monday, April 14, 2003 8:54 AM CDT
It's so hard to believe this weekend is Easter, last Easter our Angel was home with us, playing, laughing, making Easter eggs, going on an egg hunt. Being a kid! A kid that was alive and happy. What the hell happened! In two days we would have started our fatefull PICU journey, as I sit here and look at her picture, I ask God why did her journey end the way it did. I know it's not my place to ask why, but dammit, as a mom I have to ask why. Is there something that I did that could have prevented her life to end so young? Should we have seen the warning signs, should we not have postponed her chemo for a few days while waiting for her platelets to come up? All these questions that I will never know the answers for. I heard a phrase last night 'survivor guilt' and I know that technically I was not a 'survivor' since I was not sick, but the guilt is still there, why her? why not me?
I hope you all have a wonderful Easter with your children, cherish the memories, inhale the scents, feel their joy.
I find myself etching memories in my brain of Taylor and Josh just so I will never forget them. My memores of Kayleigh, especially in the hospital are forever etched in my brain.
Take care and God bless all of you
Sandi
CARRY OVER:
I am trying to collect all the pictures that people have of Kayleigh, if anybody out there has pics that I don't have, family and friends, please let me know. I will cover the copying fee's, I really need to have moments that you captured which I did not. Also, if anybody has any memories good or bad that they want to share about Kayleigh, please put them in the guestbook.
LINKS
Non Profit Organization in Kayleigh's memory, to assist families at Duke
Kayleigh's Kause
Memorial Quilt, stop by and add a square
Kayleigh's Quilt
Kayleigh's Memorial Page, made by a WONDERFUL person, thank you Phyl
Kayleigh
Day of Remembrance
Remembrance
Light The Night Walks that Kayleigh's Kause teams participated in across the US
Light The Night 2002
Thursday, March 6, 2003 8:12 PM CST
Ten Months, I can't believe it's been ten months since Kayleigh Bug earned her Angel Wings. I see more and more of her in Taylor as each day goes by, she's got her sisters attitude and facial expressions. At times it can be very comforting, others it's more bittersweet.
I really wish I had more to say tonight, but the words are just not coming to me. Thank you to everybody who has sent pictures, or put their memories in the guestbook. Thank you all for coming by and checking on us, and please sign the guestbook to let us know you were here.
There are so many children out there battleing cancer and other childhood diseases, please, if you see any links in the guestbook, stop by and see how that person is doing and drop them a note, it doesnt have to be much, every little word means so very much.
CARRY OVER:
I am trying to collect all the pictures that people have of Kayleigh, if anybody out there has pics that I don't have, family and friends, please let me know. I will cover the copying fee's, I really need to have moments that you captured which I did not. Also, if anybody has any memories good or bad that they want to share about Kayleigh, please put them in the guestbook.
LINKS
Non Profit Organization in Kayleigh's memory, to assist families at Duke
Kayleigh's Kause
Memorial Quilt, stop by and add a square
Kayleigh's Quilt
Kayleigh's Memorial Page, made by a WONDERFUL person, thank you Phyl
Kayleigh
Day of Remembrance
Remembrance
Light The Night Walks that Kayleigh's Kause teams participated in across the US
Light The Night 2002
Friday, February 14, 2003 8:16 AM CST
Friday, February 7, 2003 5:58 AM CST
Well, I was going to update yesterday, but last night when I went into my room and was clearing papers off my bed I came across a small sheet of white paper which had Kayleigh's counts from Feb 6 last year, I can remember so clearly how happy we were that she finally had an ANC, even though it was only 36, it was an ANC none the less! It was as if I was hit by a ton of bricks, so I opted to go and lose myself in tv land and try and concentrate on the shows. Not that it worked, but I tried.
I saw this on a friends page, and it really made sense to me, I hope you don't mind Rita that I snagged it :)
Article in Good Housekeeping Magazine.
The dawn of a new year can be a joyful time, filled with excitement of new beginnings, But for those who are grieving, breaking out the new calendar is yet another reminder that a loved one is gone forever.
I know it is hard for family and friends to stand by and watch what we are going through. One question we're often asked is "what can I do?". Everyone genuinely wants to help, but they don't know how. We know we will come out on the other side of this someday, but until then, I offer ten suggestions to help loved ones begin to understand what's happening to us.
1. Don't try to fix us. There is no magic pill.
2. Don't tell us to snap out of it-we can't. We know you are uncomfortable seeing us in pain, but we will recover at own pace, not yours.
3. Don't take it personally if we don't return phone calls. We are just trying to get through each day intact. If you care about us, keep trying.
4. Don't be afraid to talk about our loved ones. We find comfort in knowing that other people miss them too. We want to hear your stories and special memories.
5. Don't assume the role of stand-in parent for our children. It hurts to see someone trying to fill in. For us, there is no substitute.
6. Don't tilt your head and look at us with puppy dog eyes. We don't want pity.
7. Don't ask about our financial situation. It's none of your business.
8. Don't harp on how strong we are. We're not trying to be role models. You may see us as strong, but chances are we fall apart when you're not around.
9. Don't be put off by our moodiness. Some days we want to be social, other days we don't.
10. Don't abandon us. We need you just as much a year later as we did a month later. And when things are better, we will remember how you were there for us.
Written by: Jill Goldstein
If there is anything you do today, please hug and kiss your child and let them know you love them. I thank God that I always did that. I remember when I was a little girl and thought to myself one day 'Suppose I don't tell my daddy I love him and he dies, he'll never know that I did love him' and from that day on, I made sure to say I love you.
There are so many families out there that need support, those with children who are fighting diseases and those who have lost children, please, I am asking you all, if you do visit another site, sign the guestbook and let them know you were there. Even if you don't know them, if you don't know what to say, say hi!
Also, this valentines day Saturn Car dealerships are doing a free bone marrow donor registration. You could save a life
DONOR DAY
I know I said I was going to put a table on here, but I lost the email from Chris, I need to get it again and work on it!!! I'll get it here, I promise.
Well, that's alll from me for now. Thank you all for stopping by
With Love
Sandi
Tueday, February 4, 2003 1:04 PM CST
A friend of mine sent me a quote, and it really hit home with me. I wanted to share it with you
"I think about how much I miss her, and start to feel sorry for
myself.....but then I think about all the people who never got the
chance to meet her, and I start to feel sorry for them."
If you knew Kayleigh, you know this is so true. A person I met the other day told me that one of the first things she is going to ask God is WHY? I told her I know why, Kayleigh was the most special little girl, there was not a person that met her that did not fall in love with her, attitude and all. It just added to her charm. I feel we were all blessed to have her in our lives, if only for a short time. But a short time is better than no time in my opinion.
I've been out of touch with alot of people, and I feel like crap for that. I've been doing alot of reflecting and soul searching these past few months, it's just what I need to do right now. I do want to thank everyone for all their support, it's hard to believe that one year ago at this time, we were waiting for her counts to come back up, her kidneys to start on their own, and praying that she not be put on the ventilator. I wish it were one year ago again.
Please sign the guestbook to let us know you were here.
God Bless
Sandi
Sunday, January 26, 2003 at 08:41 PM (CST)
Happy Heavenly Birthday baby girl.... I hope you are playing and having fun with all your new friends. We're still waiting for you to blow your candles out. Did you get the balloon Josh sent to you? He lost sight of it and said you must have caught it.
There really is no way to put my emotions into words today... it's not been easy, that's for sure. I honestly don't know how to thank everybody for their support, not only today, but over the past year and especially the past 8 months. We were at my sister's house today, and we took the kids outside to play in the snow, I could almost see Kayleigh playing right along with us, her hair pulled up into a pony tail and her little face filled with laughter. Maybe I did see her? who knows....
To Debbie, Lindsey, Steph, Becky, Rach & Candi, thank you so much for the purple and white balloons and the Happy Birthday one. Josh sent the Happy Birthday balloon up to Heaven and the others are here at her resting place. To Tracy, how can I thank you for getting a 'Samantha Doll' in Kayleigh's memory, there are no words to express my thanks. To Phyl, the Birthday Page.... thank you.. from the bottom of my heart. To my Mother in law, thank you for your kind words and thoughts. To everybody who has stopped by today, thank you for all the emails and entries, they mean so very much to us.
It's so hard to write today, I should be getting an overly excited four year old calmed down now to go to bed after a day of presents and cake, family and friends. Instead I'm sitting here wondering what she would look like now, what would she be into, what would she be saying. We went by her resting place today, and each took our own time to be with her. Now I have four candles lit on the mantel and honestly, I don't want to blow them out....
I don't know how many people have heard of the Adopt A Kid that has been started. What it is basically is, there is a site that has links to Caring Bridge pages of kids who are fighting various illnesses and also of kids who have gone on ahead of us. A Caring Bridge Mom, Chris came up with this idea. You can go to Gooch's Page to find out more about it. Every family that is on there needs support, words of encouragement, even if it's just to say hi, whether their child is fighting or they have lost their child, so, please, take a minute out of your day and adopt a child. Thank you Rita for adopting us.
I guess that's it from me for today. May God Bless you all, and thank you...
Love
Sandi
Tuesday, January 14, 2003 at 08:32 AM (CST)
Life really does throw us some cruel blows doesnt it? I am sitting here this morning, while Taylor is sleeping in, and going over other Caring Bridge pages, there are so many children out there fighting this horrible disease. It's too often that another one loses their battle.
I found my journal from last year this time when Kayleigh had just started her treatment, and wanted to share these two days with you.
01/14/02
Her second round of chemo started today, she did great the first round. Saturday she started running a fever and getting sick, she's the same today, vomiting and diarrhea. Judy May, Kitty and Christine left this morning, they came up last Wednesday, that was a definite God send.
It's still somewhat surreal to have her diagnosed with leukemia. Dr Carpenter ended her rotation on Friday, which was upsetting, considering she was the one who admitted her. Dr Kreissman is still listed as her attending, but I did not see her today, hopefully tomorrow.
The doctors are saying that she is doing everything she should, so that is promising. I just sit here looking at that beautiful little face, and wonder why? Why her? She is such a perfect little girl.
I was going to cut her hair, because it is just so matted, but as I changed her sheets today, I noticed some strands of hair on her pillow and sheets, so I guess the inevitable is happening.
She is such a trooper though, thru all this, she knows she's very sick and I know she's scared, but still being a trooper through it all. She won't eat, really has not since we've been here, so she's getting her nourishment from TPN. Poor little pumpkin has an IV in her foot, as well as her central line.
We've been down to the OR four times now, twice for a bone marrow aspiration, and twice for chemo treatments.
1/15/02
Well her temp is back up, the vomiting has somewhat eased up. We saw Dr Kreissman today, and spoke about a BMT, so now I have to get all of us tested as they will do a transplant after her chemo. Let's just pray that one of us are a match for her.
Big day here, we took a bath and I washed that hair!!! Yay!!! I think next Wednesday I am going to get my hair cut so that we will be somewhat similar when she loses hers.
She's on her third transfusion today, hopefully by Thursday she can go to the playroom. She keeps telling me that Grandma is taking her to the playroom :*)
So optimistic I was, who would think that one year later I would be sitting here, going through bags and trying to salvage Kayleigh's smell from her clothes from the hospital. It's as if this is all a cruel nightmare that I can't wake up from. What saddens me the most is, how many other parents are doing what I was doing last year this time, only to be sitting in my shoes in the future?
I am going to get with a friend of mine as to how to put a table on this page, so I can place links with different ways to help. We all have to come together to help to bring awareness out there.
Thanks again for stopping by.
With love and God Bless
Sandi
Tuesday, January 07, 2003 at 10:22 PM (CST)
It just does not seem real, it's hard to believe last year this time my baby girl had just started the first part of her induction chemo, we were all reeling from the shock of the diagnosis, and now we are trying to fathom her not ever being here again. KAYLEIGH'S QUILT
Christmas was bittersweet, Josh and Taylor were two very happy children, for that I am so thankful. Josh still misses his sister terribly, but he's so strong. Taylor is now starting to associate things with Kayleigh, if she picks something up and says 'mine' and I say 'no' she replies with 'Kayleigh's?'
We were surprised on Christmas Eve with Kayleigh's headstone, which was generously donated to us by the Men's Brotherhood at our church. We stood in the freezing rain with our friends and the pastor and his wife, said a prayer and cried. No parent should be putting flowers and a headstone on a child's grave in lieu of toys for Christmas. It's hard to believe that this was last Christmas Christmas 2001
December is a month of hard anniversaries for us, Kayleigh first started to get sick on 12/20, and we had many trips to the dr and ER before her diagnosis, so it's as if every other day is an 'anniversary'.
Her first birthday in Heaven is coming up, and I'm really not sure how we're going to deal with that.
A lot has happened in the past couple of months since I last updated. Kayleigh's Kause held a fundraiser raffle through December, and I'm happy to say it went really well. I delivered our first basket to a family at Duke on 12/19, it was a wonderful feeling. I know I've been really bad with keeping in touch with everybody, I rarely answer my phone, and I don't want anybody to take that personally, but lately I just have not felt like talking. I still love and care about you all, please know that.
In November there was a Day of Remembrance in Durham, for the kids at Duke Children's. It was a very hard thing to go to, but I am really glad that we went. We were able to catch up with Doctors and Nurses that we had not seen in a while. REMEMBRANCE Also, a wonderful person that I met online is in the process of doing a memorial page for Kayleigh, as soon as she is through I will post the link here.
Anyway, that's it from me for now.. please let us know you were here, it helps alot..
Pictures from our Light The Night walks
LTN WALKS
ALSO
New!!! The Wonderful Quilters at Spreading Smiles made a memorial quilt for Kayleigh, stop by and take a peek, also feel free to email them to add a square!!!
We Walked Together
We walked together, you and I
A mother and her child.
We had hopes and dreams for tomorrow
But tomorrow didn't come.
We walked together you and I
We talked, we laughed, we loved.
We shared so many happy times
And for that, I thank the Lord above.
We walked together you and I
But only for a short time.
For all too soon it ended
Leaving pieces of broken hearts behind.
And even though I miss you
More than words can say,
I thank God that I got to walk with you
Every precious second of every day....
Author Unknown
Wednesday, November 06, 2002 at 09:05 PM (CST)
Time passes but the pain does not go away... It's been six months without Kayleigh here, and it seems as if it were yesterday. Does it get any easier? No.. Does it get more bearable? No.. Does it get more believable? No... I still expect to see her chubby face and sparkling eyes with that million dollar smile every time I turn around.. but it's not there... It never will be there again. I am so tired these days and I think this poem sums it up the best... KAYLEIGH'S QUILT
I Am So Tired. . .
I am tired of crying for my child.
I am tired of being depressed.
I am tired of longing for my child.
I am tired of not being happy.
I am tired of telling people that my daughter is dead.
I am tired of my daughter being dead.
I am tired of not being able to remember what joy feels like.
I am tired of being angry.
I am tired of feeling guilty.
I am tired of missing my daughter.
I am tired of being told that it is a blessing to have an angel in heaven.
I am tired of being misunderstood.
I am tired of having to explain myself when I am depressed.
Again, I am tired of being depressed.
I am so tired of death.
I am tired of grieving.
I am tired of grief.
I am tired of asking why.
I am tired of not getting an answer.
I am tired of having to learn to live without my daughter.
I am tired of being indirectly told to "get over it".
I am tired of re-living the night of my daughter's death over and
over, complete with tears and emotional upheaval.
I am so tired off not being able to remember...
every moment of her life.
I am tired of being tired.
Author Unknown
On another note, Frank is doing well, he had one tumor removed, and it was not cancer. He's home and recovering from surgery.
I went and saw Cameron and JT up at Duke this past weekend, and am ecstatic to say they are both doing great! JT was asking where Kayleigh was, we told him she was in Heaven and he got upset, saying she was all by herself... One of Kayleigh's nurses told me that he sometimes goes to Kayleigh's old room and looks for her.
Anyway, thats it from me for now.. please let us know you were here, it helps alot..
Pictures from our Light The Night walks
LTN WALKS
This holiday season, the National Childhood Cancer Awareness Tree will be standing tall once again on Capitol Hill, Washington DC. The 25 foot tree will glitter with thousands of gold ribbons, each bearing the name of a child who has, or has had cancer. Please honor our cancer children by supporting this year's Awareness Tree Event. Order your ribbon and have it added with your child's name to the National Tree.
GOLD RIBBON TREE
ALSO
Compassionate Friends is holding their 2002 candle lighting on December 8, 2002. Please light a candle
CANDLE LIGHTING
New!!! The Wonderful Quilters at Spreading Smiles made a memorial quilt for Kayleigh, stop by and take a peek, also feel free to email them to add a square!!!
Tuesday, October 15, 2002 at 07:21 AM (CDT)
Hi Kayleigh's Quilt
I know it's been while since I updated.. sorry about that. Anyway, the Queens walk went really well, thank you to all that participated and sponsored us! I do not have a total on what all the Kayleigh's Kause teams raised, but as soon as I do, I will post it here. Our Ohio team made the front page of the local news, pretty cool huh? I have not added the new pictures to the Light the Night page, but I will do so this week. LTN WALKS
I'm in the process of getting a fund raiser raffle together to raise money for Kayleigh's Kause, I sent letters to local restaurants and am waiting to hear back from them. The prize will be 'Dinner for a Week', hopefully we will get the gift certificates and the raffle will be a success.
Things here are going slowly, I keep hearing Kayleigh's voice, her laughter, her cries. I don't suppose that will stop.
If you could, please keep John's brother Frank in your prayers. Frank was rushed to the hospital last week having seizures, and it was discovered that he has two brain tumors. We do not have all the details as yet, but if you could please keep Kayleigh's 'Uncle Fankie' in your prayers we'd really appreciate it.
Also, if you could say a prayer for Kayleigh's little buddy Cameron. Cameron recently went through transplant. He is such a little sweetie, his family is very dear to us. Thank you
This holiday season, the National Childhood Cancer Awareness Tree will be standing tall once again on Capitol Hill, Washington DC. The 25 foot tree will glitter with thousands of gold ribbons, each bearing the name of a child who has, or has had cancer. Please honor our cancer children by supporting this year's Awareness Tree Event. Order your ribbon and have it added with your child's name to the National Tree. Gold Ribbon Tree
ALSO
Compassionate Friends is holding their 2002 candlelighting on December 8, 2002. Please light a candle Candle Lighting
We also want to say a HUGE THANK YOU to the person who annonymously is donating a grave stone for Kayleigh. Whoever you are, we appreciate this more than you know. Thank you!!!
New!!! The Wonderful Quilters at Spreading Smiles made a memorial quilt for Kayleigh, stop by and take a peek, also feel free to email them to add a square!!!
Thank you to everybody for stopping by, it means alot that our angel is still in your thoughts. Please sign the guestbook, so we know you were here.
Take care and God bless
Sandi
Monday, September 30, 2002 at 10:38 AM (CDT)
Well we're leaving tomorrow to go to NY for the walk in Queens, we are leaving a little earlier than anticipated, but John needs to be in NY for work, so thats why.
The Virginia and Chicago walks were last week, and from what I hear, everybody had a great time!! There is such a good feeling that comes over you when you participate in these walks. I have added pictures from the FL and VA walks to the picture page.
LTN WALKS
Thanks AGAIN to EVERYBODY!!!
Mia
Please keep Mia's family in your prayers, little Mia lost her battle with this horrible disease yesterday afternoon, she was at home with her family and friends. I know the pain they are going through right now, so please if you could just say one little prayer for them, I'd really appreciate it.
Thanks
Sandi
Wednesday, September 25, 2002 at 08:36 PM (CDT)
Tonight was the walk in FL, thank you to Sunshine and Christine for all their hard work in getting the team together down there!!! We really appreciate it!! From what I hear, the walk went awesome! Kayleigh's Kause team had a great turnout and are ready for next year!
Our second walk in Raleigh on Saturday night went off great! We had a good turnout and I really think everybody enjoyed themselves. John and I are ready for next year, we're going to go at it with a bigger bang than this year! I have a photo page up with pictures from our walks, and will be adding the Florida pictures as soon as I get them, along with the other walks as they come up.. LTN WALKS
Thanks AGAIN to EVERYBODY!!!
On another note, please keep little Mia in your prayers, Mia was diagnosed with Stage 4 Neuroblastoma last year. We met at Duke, she was Kayleigh's neighbor, and one of the sweetest little girls you could meet. I found out today that Mia is not able to beat this cancer. She is now at home with her loving parents until the angels call for her. Please keep this family in your prayers.
Thanks
Sandi
Thursday, September 19, 2002 at 07:02 AM (CDT)
Well, today is our first walk in the Leukemia & Lymphoma Society's 'Light the Night' walk. I've been up all night putting transfers on the sleeves of t-shirts, sorry to say, transfers, as I have found out, are not my forte, but hey, it's the effort, right?! :) John got the banner done last night, and it looks great! We have our second walk on Saturday night. I am so happy to say, Kayleigh's Kause team is the 3rd largest for these walks! THANK YOU SO MUCH to everyone who is coming out there and walking in Kayleigh's memory, and thank you to all who have supported and sponsored us!!! We really appreciate it!! I'll be sure to add a link for pictures of the event this weekend after Saturday's walk.
On another note, things here started looking up... John got a promotion on Monday! YEAH!!! He's soooo happy, and so am I, he deserve's it! Also, he gets a company vehicle, so I get my van back! Woohoo!!! Josh has started playing soccer, which is quite funny to watch :0) He has his first game on Saturday, should be quite entertaining!
I know I've been really awful with keeping in touch lately, with all that's been going on, I've been running in circles. Hopefully, after this weekend I'll be back to some sense of normality.
Thank you again for visiting, and please sign the guestbook so we know you were here :0)
Take care and may God bless you all
Love
Sandi
Friday, September 06, 2002 at 07:42 AM (CDT)
Well another month has passed, does it get any easier? Hell no! Does it get more believable? Of course not! No parent should ever have to go through this pain.... No child should ever have to go through that kind of suffering....
I can see where birthday's are never going to be the same again, Happy Birthday to me... how in God's name can I be happy today without her? Do I reflect back on the birthday's I shared with her and live for the memories? I guess that's all I really can do, but I shouldnt have to do that. We only had THREE years together, and dammit, it's just not fair. I guess I can look at every birthday as one year getting closer to being with my baby girl.
Sorry for the downer of a post... but hey, I'm not a hypocrite, and this is just how I feel today.
Thank you to all those who still visit, and please sign the guestbook.
With love, and God Bless
Sandi
Thursday, August 08, 2002 at 03:55 PM (CDT)
Well, its official, Kayleigh's Kause is now a real Non Profit Organization, we got the Incorporation Documents last week. It was bittersweet in a sense that they were filed on August 6, three months after her leaving us, but like so many other things, I take that as a sign :)
Things here are going day by day, we are working on raising money and recruiting walkers for the Leukemia Society for the Light the Night walk, so thats been keeping us busy. We had a fundraiser yard/bake sale this weekend, but the outcome was pretty pathetic, so we're going to try and go at it again in a few weeks, also we are waiting to hear back from WalMart on doing a bake sale there as well.
I guess thats about it really, Josh started at his new school today,he's a first grader now, and so proud!!!
Thanks again everybody for stopping by and sending emails, its so nice to know that you are all still there.
God Bless
Sandi
Friday, June 28, 2002 at 07:30 AM (CDT)
COME AND JOIN US AS WE 'LIGHT THE NIGHT' IN SEPTEMBER....We are putting together a team of walkers to walk in this event to raise money for the Leukemia Society....Remember, SEPTEMBER IS NATIONAL CHILDHOOD CANCER AWARENESS MONTHThere are two walks for the Raleigh area, one on Thursday 9/19 and one Saturday 9/21....We are most likely doing the saturday one, BUT....I would LOVE to be able to do both, so if you can come out and walk with us please let me know which day....We will have a banner to walk with which we will put Kayleigh's picture on, I will have gold ribbons for everyone to wear, and I am hoping to get buttons made for all walkers as well.....There are also walks in South Florida, Virgina and New York that are being organized by friends and family who will carry a banner honoring Kayleigh....if you are interested in either of these, contact me and I will put you in contact with the appropriate people......HEY we're only missing TWO states between FL and NC.......is there anybody who wants to do on in either of those states?????? Click the link at the bottom of this page for more info on how you can organize a walk in your area!!!!!!!
Thursday, June 25, 2002 at 11:25 PM (CDT)
06/25/02
I have finally updated Kayleigh's picture pages (the link at the bottom) These pictures are from April while she was in her best spirits, also there are some pictures from the PICU. So take a peek, I know she'd love you too!
Love always, and God Bless!
Sandi
You know....I just don't know any more, another sweet angel named Sydney at Duke got her wings this week...it's just not fair, in the few weeks since Kayleigh got her's there have been three families that have had to say goodbye to their babies and these are only the families that I know. Please, please, say a prayer for Sydney's family, her service is going to be held tomorrow and I know it will be a very difficult time for them.
On another note....I am awaiting the information on starting 'Kayleigh's Kause'and we are going at this full force, not just to help the families and patients, but to raise money for the Children's Miracle Network next year, we also want to try and raise funds to have something dedicated in Kayleigh's memory at Duke. I will be doing web pages for each of these causes and including the links at the bottom of the page when they are done. We are going to help the families suffering now, and hopefully help the families of the future by raising money for research.
****NOTE: I have changed the email address at the bottom of the page to KayleighsKause, Please only use this email address to get information on Kayleigh's Kause, all other emails, please send to SieraHaze@aol.com...Thanks:)
Thank you all for all your help and prayers over the past few months....we are going to be asking for your help again in the months to come on behalf of the children.
~In our hearts forever~
(\o/)Andrew (\o/)Shay (\o/) Sydney(\o/)
May God Bless you all
Love
Sandi
Thursday, June 06, 2002 at 07:13 AM (CDT)
How do I start an entry for today? Do I say Happy one month anniversary on becoming an angel, or do I say, why??? There is no real way to put my feelings into words today. I know one month ago at this exact time I received a call from her nurse telling me her pressures kept dropping overnight, I know the panic I felt in my chest when the cell phone rang at the Ronald McDonald house, and I'm feeling it all over again. I know I can relive all the emotions I was feeling on May 06 throughout the day, every minute is etched in my brain, and can be put on replay at a moments notice.
I have your candles lit all throughout the house my sweet angel. Fathers day is coming up and I know it's going to be hard for your daddy, so please, take extra care of him on sunday. I know you are no longer in any pain and you are having a great time, playing and bugging your grandpa :0) I miss you baby girl.
I am asking you to please say a prayer for two families whose children lost their battles with their illnesses last week, Shea and Andrew, Shea got her wings on May 28 and Andrew got his wings on June 1, if you could all keep these families in your prayers I would really appreciate it.
Thank you all for everything you have done, are doing, the prayers, the thoughts, the wishes.
God Bless
With love
Sandi
Wednesday, May 29, 2002 at 08:32 AM (CDT)
It's been three weeks and two days since our angel became one of God's angels. The days go by slowly, it seems they never end. I have been doing alot of reflecting over the past few weeks and I know that Kayleigh was put here to bring people together, show them how to appreciate the small things in life and not to take anything for granted.
I believe that her time home with us over Easter was a gift from God, and so appropriate that it was Easter too. Her time at Duke after Easter was also a gift, she was so full of life, even during the start of the headaches. I will be adding more pictures of her last weeks at Duke by the end of this week so you can see the life that was in her.
Both John and I don't know how to thank all the wonderful people out there who have helped us, our friends, her doctors, her nurses and anyone we came in contact with.
We are in the process of establishing 'Kayleigh's Kause' which we will use to help make the days a little brighter for the families and children at Duke with AML. I also believe this is going to be therapy so to speak for me. Kayleigh was a loving, caring and giving child and I know this is what she would want.
Thank you all and God Bless you all!!!
With Love
Sandi
Tuesday, May 07, 2002 at 10:12 PM (CDT)
Heaven got a new angel yesterday 05/06/02 at 4:08pm. This is not how I wanted her journey to end, but I know it was not mine to decide, we asked God a few weeks ago, if He wanted our precious baby girl, not to make her keep suffering, to take her in his arms and keep her safe again until we meet again. We stayed by her side through her entire journey and were there with her at the end of it, I was holding her and John was hugging her. She was not in any pain, and she was just ready to go and be with God.
I wonder constantly why He took her so young, but I know deep in my heart that my precious angel was put here for a reason, and she was definately a special little girl from the day she was born, she touched everybody's lives that she came in contact with, and I am honored that God put her with me.
Hopefully from our loss and sorrow, another little child with this horrible disease can be helped.
I know there are people that would like information on her services. Her viewing will be on Friday, May 10 between 7-9pm at Parrish Funeral Home, Selma, NC 27576 and the funeral service will be on Saturday, May 11 at 11am at Wootens Chapel, Garner, NC. I do not have the addresses of either of these places, but you can call the funeral home at 919-965-3031 for this information.
John and I have decided that in lieu of flowers, we are establishing a fund to help the families and children with AML at Duke. AML is a horrible type of leukemia, and requires very long hospital stays, so we thought if we could make the families stay a little easier and the patients day a little brighter, it would make Kayleigh very happy. If you are interested in donating to this fund, please contact the funeral home or myself personally.
I want to thank each and every one of you who have visited Kayleigh's site over the past 4 months, all the support and prayers have been so overwhelming to us all.
May God Bless you all
Love,
Sandi
Saturday, May 04, 2002 at 07:10 PM (CDT)
Well I'm home till tomorrow, John made me come home. Kayleigh is still undergoing localized radiation treatments for the tumor, and will thru monday, then she will get full spinal and cranial radiation to make sure there are no more leukemia cells hiding.
I spoke to John earlier today, and he said she was doing pretty good. She's wanting to roll over on her side, but she's in restraints because she tries to pull the vent tube out, which is a good thing! He said her oncolgy dr's, neuro, and radiation were comfortable with her coming off the vent, as she was only put on it as a precaution, but the PICU dr's want to wait a little while, so maybe Monday she can be extubated.
He said her dr's seemed pleased at what they saw today, she was alert when they came by. Only time will tell if the radiation is getting rid of this tumor, hopefully by next week we can get another ct scan and compare it to last wednesday's to see how the swelling is doing, and by the grace of God, hopefully the swelling will have gone down some, which would mean the radiation is working.
Unfortunately, with the type of tumor it is, the radiation is either going to affect it or not, it's not as if it will shrink and then 'grow back' so to speak. Hopefully, the fact that she has not made any step backs is a sign that it is working.
I'm sure John will update you this week while I'm up there, as now that she's in the PICU I no longer have the laptop.
Thank you for all the prayers that are being said for her. With all our love
Sandi
Wednesday, May 01, 2002 at 02:52 PM (CDT)
Well, unfortunately I do not have good news. Kayleigh is being moved back into the PICU within the next few minutes. She went down for a ct scan this morning after complaining of headaches, and it appears as if the tumor has gotten larger and thus is crushing the tube that was put in to re-route her fluid, so she's got a build of fluid again in her brain. She will get another exterior drain put in today in the PICU and then radiation will start tomorrow, it may be five treatments, it may be as many as 10. If the radiation does not get rid of this tumor, then we have no other options to help our baby girl. So please pray extra hard for her that this radiation will get rid of the tumor.
Love
Sandi
Monday, April 29, 2002 at 07:16 AM (CDT)
We are out of step down!!! WOOHOO!!! Her icp stayed fine for the 24 hours, so the drain was removed yesterday and she was moved back over here, to 'her' room :0) She's making progress, she's been talking a little, not too much, she says her throat still hurts, her vision seems to be improving too, she identified her stuffed animals for me last night!!!!
We went for another ct this morning, and the neuro surgeon was there, and said it looked fine, but he would have to check it against the one from yesterday.
So, it seems, so far so good! She's a toughie that's for sure! Thanks again for all the prayers!
Love
Sandi
Saturday, April 27, 2002 at 09:49 AM (CDT)
Well, she's doing pretty well. We're still in step down. Her exterior drain was clamped today, so her icp (inter cranial pressure) is being monitored for 24 hours, if it stays below the level it should, then hopefully she'll be able to go back to 5100 next week. She started to show recognition of pain yesterday, she has a headache! Gee, I wonder why? :) She also said 'ow' and motioned that her throat hurt, so those signals are starting to come through!!!!
It's going to be a slow process, but she's our little Kayleigh Girl, I don't think much if anything will hold her down for too long.
Thanks so much for all the prayers, thoughts and well wishes.
Love
Sandi
Wednesday, April 24, 2002 at 06:00 PM (CDT)
Thank you all for the prayers that have been coming this way. I can't express how much we appreciate them. Kayleigh's condition as far as her brain is improving. She had another surgery today to place a shunt to reroute the fluid to another ventricle from the one that is blocked by the tumor, she also has an exterior catheter to monitor if any fluid drains thus meaning the shunt is not working. She should be out of the PICU late tonight or tomorrow morning. She is getting her motor skills back, and is following commands quite well, her vision is still not back, but I'm sure in time that will come.
We sat and spoke to her dr's yesterday about her future course of action, and we were given basically 2 options, one was we do chemotherapy again, and she pretty much has a 100% chance of relapse or we go for the stem cell transplant, which is a tricky, as based on all that she has had happen to her so far, she would only have a 5-10% chance of surviving. Prior to doing any of this she would have to undergo radiation on her brain and spine. We have decided that giving her a 5-10% chance of life is better than no chance at all, as once she relapses again, there is nothing that can be done. As one of her doctors said, 'there are kids that have made it thru this, or there would not be that percentage'
So, as it stands now, she will be given time to recover from the brain surgery and have the swelling go down, then get the radiation and once she's ok from that she'll be going to Disney World, if I have to push her in her bed, she's getting there. Then we'll come back and start towards the transplant. There is a cord in the cord bank here at Duke that matches her, not 100% but the most vital components match.
Hey, she's been fighting like anything, and I don't think she's ready to give up this fight, so we're not going to give up either. We all see how far she's gotten so far with the power of prayer and her positive attitude.
So, please say that little extra prayer for her. I will try to update more frequently as I got a computer here at the hospital.
Thank you all for all the love, prayers and support through this all
Love
Sandi
Sunday, April 21, 2002 at 11:37 PM (CDT)
Well, this is John and unfortunately Sandi is unable to update everyone as she is still up at the hospital and I had to come home for the night to be with our son Josh and our other daughter,Taylor.
Kayleigh is still in the PICU. As Michelle said, her operation went OK, although the Leukemia Tumor known as a Chloroma (I hope I spelled it correctly, Sandi knows) has to be extinguished with Radiation treatment. The Drs. started this on Wednesday AM and followed up with treatments on Thursday and Friday as well.
Kayleigh developed major swelling of her brain Late Wednesday night which highly concerned the Drs. We were informed on Thursday around Lunch time that she needed to have the swelling come down over the next 24hrs or this would be life threatening. Well, never the less, this really upset us and all we could do was pray. Kayleigh, being the fighter that she is, finally started some minor movements on Saturday and really suprised us at 10:15am on Sunday, when she actually started voluntary movements of her arms and legs when asked. I was so happppppy to see this happening. This is great start and very exciting. She's still in the woods, but closer to the end of getting out. The Drs are looking at Monday to remove the vent and wantit ther til some test result come back. The Drs were very happy and want her to be still and rest. They have not given any timing on the tests to see how much the swelling has come down, although we are anticipating this for Monday and hopefully we will come back with an even better entry next time.
Sandi and I really appreciate everyones prayers and support for our little girl Kayleigh. Prayer has been working and the Lord is with her through all of this.
We had our miracle Sunday Morning.
May God Bless You ALL.
Wednesday, April 17, 2002 at 10:01 PM (CDT)
Hi everyone,
I am updating the page for Sandi until she is able to get back to a computer. A lot has gone on since Sunday when Sandi last gave you an update. Kayleigh had the CT scan on her kidneys and they looked great but Kayleigh continued having the headaches that Sandi had talked about and they became very bad. On Monday night Sandi and the nurses could sense a change in Kayleigh, she was not responding like she had been before so on Tuesday morning they requested another CT scan of Kayleigh's head. The results showed a lot of fluid on the brain and a blood clot. Kayleigh's blood pressure raised up very high so the Drs. decided to move her to PICU and insert a tube into her head to release some of the pressure. It did not show a lot of improvement so they decided to operate on Kayleigh Tuesday night. When the DRs. got in they found that Kayleigh did not have a blood clot, it was a tumor that was leukemia. They were able to get some of it but not all so they started radiation. She had 3 treatments today and will have 1 tommorow and 1 Friday. After the treatments they will then do another MRI to see if the tumor is getting smaller. Kayleigh is on a vent now and has not really woke up since surgery(Drs. choice to keep her comfortable and still for the raditation)but will be trying to wake her some during the night to see how she reacts, however they will sedate her right back do to radiation tommorow. John and Sandi are staying at the hospital around the clock and either can be reached in the PICU waiting room or in room 5124. Please continue praying for Kayleigh and Sandi & John, they all are going through a lot.
May God Bless,
Michele Holloman (Michelesjewels@aol.com)
Sunday, April 14, 2002 at 02:45 PM (CDT)
Well, I'm getting ready to head back up to the hospital. She had a rough week this week, she was having really bad headaches last weekend, so monday she had a ct scan which showed there was bleeding in the back of her brain. After 2 other scans it was determined that there was no anneurisms or anything, and the bleeding was caused by her blood pressure being so high and her clotting and coagulating factors being so low. So she's now on 3 blood pressure meds, and getting platelets and plasma daily. Her white count has just about bottomed out, if not bottomed out by today. She had another scan today because she's still having the headaches and nauseau, there is no new bleeding, but the side effects from the blood being reabsorbed are headaches and nauseau, also, getting so many blood products can cause headaches as well. She was started on morphine to ease the pain, and let her get some rest.
Apart from all that, she's doing good, she had an echocardiogram this week and her heart is doing fine, so thats good, and she'll be getting a scan done on her kidneys tomorrow to make sure everything is ok with them.
I guess thats about it. If there is anything major I'll have John update the page.
Thanks for the prayers and please keep them coming
Love,
Sandi
Saturday, April 06, 2002 at 11:35 AM (CST)
Well, ignore the last journal entry. This round of chemo is not her consolidation, its just a maintenance round to get her through until her consolidation round. She will be getting the same chemo that she got in January again once her counts come back up from this round, which, have dropped now, and she's neutropenic. Apparently, her dr's did not want to do the nasty chemo this soon after her recovery from the first one, so thats why she's getting this 'in-hetween' round. She'll probably be able to come home for a week or so before getting the nasty chemo, but that wont be for a while.
Please keep praying for her.
Love
Sandi
Saturday, April 06, 2002 at 08:47 AM (CST)
Well, she just finished her consolidation round of her chemo. Her spirits are still up, not really showing any signs of side effects as yet, except for a few bouts of naseau and being tired :( I pray that she gets through this round better than the last round.
Thanks for the prayers, and please keep them coming.
Love,
Sandi
Wednesday, April 03, 2002 at 11:20 PM (CST)
Well, we go back up to Duke tomorrow morning to finish Kayleigh's chemo. I don't know how long we'll be there, but I was told to pack to stay.
She has been having such a wonderful time at home this past week, she's started to walk, a little at a time, but it's a start, and her personality is just what it used to be! There are more March pictures added to her picture page of when she was home.
Thank you again for all the prayers and support.
Love,
Sandi
Sunday, March 31, 2002 at 08:44 PM (CST)
Happy Easter everyone! We are home again. Unfortunately she was not able to stay for her entire 6 days last week. She ended back up in the hospital on tuesday night, she was retaining too much fluid, and ran a slight temperature early tuesday morning, so back we went. She started her chemo on thursday, and had 4 doses, ending on friday afternoon, then she was released until next thursday when she will go back to finish her chemo, providing she does not get a temp or anything this week.
She's doing really well, came home with no pumps, only oral medications, which is awesome! She actually walked on her own today! About 2 feet, but it's a start!
I will try to add some more pics to her page tonight, but the computer is being difficult :0)
Thanks for all your prayers, and lets just pray this round of chemo is easier on her than the last one :0)
Love,
Sandi
Saturday, March 23, 2002 at 06:10 PM (CST)
WE'RE HOME!!!!!!!!!!!!!! For six days! Her docs wanted to wait until her platelet count was up to 50,000 to start her next round of chemo, so they said on wednesday that we could go home on friday and come back on thursday, well, wouldnt you know it, her platelets were 49,000 when we left on friday! They let her go anyway, that way her platelets will be higher when she starts chemo. We'll go in thursday for 3 days of chemo, and providing she does well, we'll come back home till the following thursday for the other three days of chemo, and until she's recovered. She's doing awesome! Eating whatever she can get her hands on and keeping it all down :0)
She was really upset about leaving the hospital, I reassured her that we would be back and then she was ok with it, only my child :0) She's been moving around alot since we've been home, still not walking, but trying more than when we were at the hospital.
Thanks for all the prayers that you all have been saying for her!!!
Love
Sandi
Saturday, March 16, 2002 at 03:01 PM (CST)
Well, all I can say is she's doing great! She's been playing all week, her throwing up has pretty much stopped since Thursday, and she's back on clear fluids. We were able to take her outside yesterday and she LOVED it!!!
Her doctors are talking about starting her next round of chemo on Monday or Tuesday, hopefully, this round will be a little easier on her than the last one.
Thank you for all the prayers and wishes. I can't wait until I can say 'We're HOME!!!!'
Love,
Sandi
Saturday, March 09, 2002 at 10:46 AM (CST)
Well.....we are in REMISSION!!!!!! We got the good news yesterday that her bone marrow aspiration on wednesday was clear! We are back over at the 5100 block, and she's moved right back in :) She's doing really well, she still has the mucositis, and also possibly a uti as well as vre (bacteria) but she's on antibiotics for those. Her doctors are thinking of starting her next round of chemo next week depending on her gut healing. Her liver is still enlarged, but functioning normally, so they are watching it, but not worried! She's been doing physical therapy and doing great at it, she's riding the tricycle around the floor and loving it! She still wont put her feet down to walk, but she's got strength in her legs so hopefully that will come soon.
Again, thanks for all the prayers!!!!!
Love,
Sandi
Saturday February 23, 2002 6:44 PM CST
We made it to step down! We are officially out of the PICU as of last night! Thank you to all the wonderful Doctor's and Nurses in there :0) (Just incase you decide to check the site again)
She's doing pretty good, still having a problem with her kidneys, her levels are coming down, but very, very slowly. She looks great! (I'll be adding new pics to her site later tonight) She's talking now, wanting to go to Disney World, McDonald's and Burger King :) She also has this notion that she can go fishing in the fish tank at the hospital! Her white count was around 9.8 I think on friday :0) Her swelling has gone down quite a bit over the past week, all in all she's improving really well.
We were all tested for a bone marrow match last wednesday and should know something by mid week next week.
I can't tell you all enough how much your prayers and support mean to us. Thank you so much.
Love
Sandi
Saturday February 16, 2002 6:22 PM CST
Well what a week its been, she was almost put on dialysis for her kidneys on Thursday, but she was running a fever so the surgeons rescheduled until today, well, yesterday her counts shot up to 4.8 and her oncologist and nephrologist agreed to wait and see if she would kick in and help her kidneys out herself without the dialysis. So we're waiting to see if she does. Her counts today were up to 6.7!!!! She's on the mend :0) She's still in the PICU tho, but her dr figures he'll keep her there until they do the bone marrow aspiration to check for leukemia cells instead of moving her back and forth, so probably next friday that will happen.
She has developed an infection in her hickman line from the tpn settling in it, so they have started her on another fungal antibiotic to treat that.
We all did the blood work this past wednesday to see if one of us are a match for the bone marrow, we should have those results by next friday. Things are starting to look up again :) Her heart and lungs are doing great, she's still breathing heavily but her lungs are operating fine and look great, so they think it might be mainly from discomfort and/or pain what with her belly being so distended. She was started back on lasik yesterday to see if that would help with her belly any.
I added some new pics to her photo page, if you wanna take a peek :)
Thanks again for all your prayers and support
Love,
Sandi
Saturday February 9, 2002 11:46 PM CST
Well, we are still in the PICU. We do have good news tho, her anc counts are up to 1400 YEAH!!!! However, her kidneys are not getting rid of the toxins, so they have started her on meds to help that, which should also help her belly to go down some, which in turn will help her to breathe easier, her lungs are clear and operating at 97-100% so thats good. Her liver is enlarged more than likely from the chemo, and she has developed jaundice. The fluid around her heart has been controlled, so now we are waiting for her kidneys and liver to heal. I know once her counts get up higher she'll start the healing process too. I wish I could have said she was out of the PICU, but at least I can say she is doing better.
Thanks again for all your prayers
Sandi
Wednesday February 6, 2002 8:46 AM CST
Well hopefully we are back on track, the fluid around her heart has been controlled, hopefully to the point that she can go back on the floor and out of the PICU today. We will know more later after the results of her last echo come back. She has been stable now for 48hours, so her oncologist says she should be able to come out of the PICU, I really hope so! Her wbc are starting to come in, fluctuating a little up and down, which they said is completely normal, and as soon as they come up then she'll be able to start fighting all these infections on her own. Her lungs are doing great. She still has a viral infection in her kidneys, but that will have to run its course from what I'm told.
I really want to thank you all for all your prayers, they are definately working. Her doctor told me yesterday that they were really worried about her pulling through this, but with all the prayers, support and her strength she's doing it! I'm going back up to the hospital tonight and hopefully I'll be able to sleep beside her again:)
Sandi
Saturday February 2, 2002 9:38 PM CST
I'm going to make this as short as I can, I'm really tired and just all around not in a good mood.
Anyway, Kayleigh was moved to a step down unit on monday, and then last night she was put in the PICU. She's not doing well with the side effects, she seems to be getting the worse there is. She has fluid around her heart causing restriction of the blood flow, that combined with her stomach being so extended (74cm) she's having an extremely hard time breathing. She's gone from 44lbs to 57lbs in a week. They are starting her on meds tonight to see if they will get rid of the fluid so she can breathe better, if they work great, if not they will probably put her on a ventilator until they can get the fluid all gone. her kidneys are slightly enlarged and she has blood in her urine, they did a sono and there was no signs of blockage or clotting so they think its viral and will go on its own. her wbc count is starting to come up, once that comes up then she will be able to fight more on her own. her bp is up also, and they believe her bowel is infected that's where the extended belly is coming from, that they said is treatable tho. She looks really bad, but she's still got her attitude, demanding pepsi in the PICU. Sorry this is so short but I'm fried. Just keep saying those prayers. Her doc did say that this is not uncommon for AML patients, so that is reassuring in a sense I guess.
Thanks again for all your prayers
Sandi
Tuesday January 29, 2002 10:20 PM CST
Last night we were moved to another block on the floor, the 5300 block. Initially I was told it was because she needed more one on one attention and also another line put in because some of her meds are not compatible with others, then I was told that she was at an extremely high risk of infection until her wbc come up. She's feeling really miserable, her birthday came and went, most of her gifts are here unopened, because they put us in a closet so none of her stuff can fit in there. I'm hoping she will feel up to it in the next 2wks or so. Her counts are staying within the realms of normal for the stage she's in, but she just feels so horrible. She's so swollen from various meds it hurts for her to move. No infections are showing up in her bloodwork, so please pray that none do. Her fevers have been discovered to be associated with one of her antibiotics which she has to have, so she's treated before and during that med. Apart from that everything is pretty much the same.
I just want to say thank you all for all your prayers
Sandi
Saturday, January 26th, 2002
Happy 3rd Birthday Sweetie! We love you! Yesterday her doctor said that he thinks she's on the road to starting to feel better, her throwing up has slowed down, however, I just spoke to John and she threw up again early this morning. She has developed a rash all over her body, they think its from the pain meds that she's on, so they have switched them, there is no change on the appearance of the rash, but now its starting to scratch her. Her fever is still staying up there and being controlled with tylenol. Her spirits were up for a while Thursday night and Friday, but after the new pain meds she's pretty much out of it. John said the nurses came in last night and decorated her room with streamers and put a big happy birthday banner up in her room. Her naseau was being controlled with ativan, hopefully she will stop the throwing up. She's pretty much the same, the good news is that she's not getting any worse.
Sandi
Wednesday January 23, 2002 2:22 PM CST
I'm going to be heading back up to the hospital in a few hours, I just spoke to John and Kayleigh has developed a rash on her upper body, the dr said that she has seen that in AML patients before. They are taking her down today for a chest xray because her breathing seems labored, but they think its just mucous from the mucositis. Her fever just wont break, its staying at 103, John was told that she could be like this until the entire process is over, some patients react this way to the chemo until they start getting their white blood cells back. I will update more on friday.
Sandi
Tuesday January 22, 2002 9:28 PM CST
I got home from the hospital a short while ago, John is there with her tonight. She is stable, however, in alot of pain. Her fever just wont break, and she has eosphegitis (sp) which is basically sores on her eosephegus, so when she throws up there is a significant amount of blood. We went for a ct scan to make sure that there was no infections or bleeding in her organs, and they showed to be fine. She has almost lost all her hair, and does not seem to be the least bit worried about it, she told me today my hair looked funny :0) Her doctors say she's doing well, at least she did not get any worse today, which is what has been happening, she pretty much stabilized, so hopefully this is the start of her feeling better. She's sitting up in bed eating ice chips, and watching tv, her spirits are up, but she's hurting. Hopefully when I come back home Friday night I can say how wonderful she's doing
Saturday January 19, 2002 12:02 AM CST
It's been 17 days since Kayleigh was diagnosed with AML M4 (Acute Myeloid Leukemia. It's been the darkest 17 days of my life. For those that don't know, Kayleighs symptoms started on December 20, 2001. She started with an upset stomach, on the 23rd Dec I took her to the er and she was diagnosed with a intestinal virus. That did not get any better, so on December 27, I took her to her pediatrician who checked her out and diagnosed her with an ear and sinus infection, and we started her antibiotics. On Dec 31, she still was not any better, no appetite, lethargic and headaches, then that night I noticed small lumps on her scalp, as the night went on and through the next day the lumps just seemed to multiply. Then I found one on her stomach and one on her back. I took her back to the pediatrician on January 2, 2002, and she was diagnosed that night with leukemia. Her doctor spoke to the Doctors and Duke and they ordered a life flight ambulance for us and transported us to Duke that night in the middle of a snow storm. I think that was the longest ride of my life. The next three days were total agony, all the tests and procedures to determine what kind of leukemia she had. On Saturday night (1/5/02) she was diagnosed with AML-M4. She was started the next day on chemo, she finished her first round of chemo yesterday (1/18/02) and then she has a rest for 28days, then we will do the 42 day cycle again. During that time her father and myself along with her siblings will be tested for a bone marrow match for a transplant.
She reacted well to the actual induction of the chemotherapy, but the side effects are taking to a toll on her. I cut her hair on Thursday (1/17) as it started fall out at the beginning of the week. I will update weekly when I come home on the weekends and my husband is there with her.
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