Wednesday, March 12, 2003 3:04 PM CST

Hi to All!
I first would like to thank all of you for still checking in on us…. Your entries in the guestbook have given me so much comfort. The last 3 months have been very difficult for me, as I seem in limbo. I have not been able to sleep or function as a normal person, then again what is normal? That word in itself was one that I vaguely remember, as even though I tried to make things as close to normal after Kristin got sick, it never was. Your life revolving around hospital appointments, sudden inpatient stays, and a constant fear that at anytime the rug may get pulled from under you would never make a person normal, maybe stronger but not normal.
I honestly thought that I would get past the last 3 years and move on after the loss we endured. However I am finding that it is not that simple. Every day there are reminders of the hell my daughter, family and I went through. Oh and may I add that I also feel that I have let so many of you down as I was so positive that I could give hope to those who had lost a loved one or were going through similar circumstances… Yet in all my determination to achieve this I put myself into a deep depression that has almost put my life on hold. Not good you say, how right you are. So I guess this piece is to let you all know that grief has its own time frame, and it can take you to places you never thought possible. I go to the store late at night so that I usually don’t run into anyone that I know. Not that I wouldn’t like to talk to someone but the first thing they say is “How are YOU doing?” I try to answer and get choked up inside. Those four well-meaning words are the worst you can ask someone who has lost a loved one. How are we supposed to be? Now for well meaning family members… don’t ask the following… Do you think counseling would help? (Hell no! For me I could probably give the teacher a point or two. When you have watched as many as I have die from cancer, been with other families in their grief and time of darkness for 3 yrs; how could I possibly get anything out of a group session?)
Don’t insist that you put away all reminders of the beloved you lost. (It doesn’t work either.)
Don’t put away pictures, mementos, or insist that clothing be given away! Boxing things up only mean that the parent at some time may have to unbox. In good time they will get the notion to take and disperse things. Another pet peeve is DO NOT ask for some personal item from the deceased before they are even buried. (Yes, it happened more than once that week) Just so you don’t think I am heartless, my intentions were to give things to those who were close to her and would treasure them as I did. Yet, I would do that in my own time not theirs and when I wanted to give them up. Kristin’s death was a shock to us and not expected so she never said what she wanted us to do in the event she left this world. We had focused on living and never let the subject come up. Hope was all we gave right to the end until her Dad said, “You need to tell her it’s okay for her to go!” And with those words she was gone….
Pills are not the answer as they only mask what ails you as my grandmother use to say.
Work, for my husband is a big help to him when I have assured him that I am okay for that day. Work for me as being a stylist will only bring on more pain. Kristin was going to school for cosmetology as we had so many plans when she graduated. So now I need to find something that I really love as much as that to do. Where do I find comfort in something else that gave me so much joy as that did? The euphoric feeling I got when I changed someone’s look by a simple haircut, or the metamorphous that happened when I changed a plain Jane into a princess for prom night! I know most think that type of job mundane, but it’s not. Every day is a new adventure and challenge. The money is not too bad either, but you definitely work for it. So, I’m open for suggestions guys!!!
Spring is almost here and I am really looking forward to getting my garden growing as I have not had the pleasure for a few years. My five hens & one very cocky rooster have finally started laying as of a few days ago. I think that is only because every time Chuck walked by them he told the rooster that he’d be the first in the pot! LOL Anyway he got the hint and got busy!
To those of you that are still in this battle… my heart is with you and at anytime you have a question please don’t hesitate to e-mail me. I still lurk on the list-serves so I can keep up with others. I rejoice silently with those who become off treatment and weep for those who lose their valiant fight against this monster.
There is something else that has my dander up and by posting this by no means want to offend anyone in a religious sense. Many that I know have been trying to get a stamp made through the USPO for children’s cancer. It is not a very important item or shall I say not on their list of priorities. However this seems that it is:
Subject: USPS, what a joke

Dear Fellow Americans: REMEMBER the MUSLIM bombing of Pan Am Flight 103.

REMEMBER the MUSLIM bombing of the World Trade Center in 1993.

REMEMBER the MUSLIM bombing of the Marine Barracks in Lebanon.

REMEMBER the MUSLIM bombing of the military Barracks in Saudi Arabia.

REMEMBER the MUSLIM bombing of the American Embassies in Africa.

REMEMBER the MUSLIM bombing of the USS COLE.

REMEMBER the MUSLIM attack on the World Trade Center on 9/11/01.

REMEMBER all the AMERICAN lives that were lost in those vicious MUSLIM attacks.

Now the United States Postal Service REMEMBERS and HONORS the EID MUSLIM holiday
season with a Commemorative first class holiday postage stamp. We strongly urge
you to REMEMBER to adamantly and vocally BOYCOTT this stamp when purchasing your
stamps at the post office. To use this stamp would be a slap in the face to all
those AMERICANS who died at the hands of those whom this stamp honors. We also
strongly urge you to pass this along to every Patriotic AMERICAN you know,
whether by email or otherwise. To heck with the post office for feeling the need to be politically correct.

America is turning into a nation of fools.

You make the choice, but for me when children’s cancer is 10th down on the list for funding from the government, and Aids being #1 and now our postal service sees this as a priority…. God help us all! Allah too no pun intended!
So, even though I have bared my soul to you please continue to check back for updates and I promise I will try to do better. I can honestly say this has taken the wind out of my sails, but still hope for sunnier days!
Our love to you All,
Laura & Family

Wednesday, March 12, 2003 3:04 PM CST

Hi to All!
I first would like to thank all of you for still checking in on us…. Your entries in the guestbook have given me so much comfort. The last 3 months have been very difficult for me, as I seem in limbo. I have not been able to sleep or function as a normal person, then again what is normal? That word in itself was one that I vaguely remember, as even though I tried to make things as close to normal after Kristin got sick, it never was. Your life revolving around hospital appointments, sudden inpatient stays, and a constant fear that at anytime the rug may get pulled from under you would never make a person normal, maybe stronger but not normal.
I honestly thought that I would get past the last 3 years and move on after the loss we endured. However I am finding that it is not that simple. Every day there are reminders of the hell my daughter, family and I went through. Oh and may I add that I also feel that I have let so many of you down as I was so positive that I could give hope to those who had lost a loved one or were going through similar circumstances… Yet in all my determination to achieve this I put myself into a deep depression that has almost put my life on hold. Not good you say, how right you are. So I guess this piece is to let you all know that grief has its own time frame, and it can take you to places you never thought possible. I go to the store late at night so that I usually don’t run into anyone that I know. Not that I wouldn’t like to talk to someone but the first thing they say is “How are YOU doing?” I try to answer and get choked up inside. Those four well-meaning words are the worst you can ask someone who has lost a loved one. How are we supposed to be? Now for well meaning family members… don’t ask the following… Do you think counseling would help? (Hell no! For me I could probably give the teacher a point or two. When you have watched as many as I have die from cancer, been with other families in their grief and time of darkness for 3 yrs; how could I possibly get anything out of a group session?)
Don’t insist that you put away all reminders of the beloved you lost. (It doesn’t work either.)
Don’t put away pictures, mementos, or insist that clothing be given away! Boxing things up only mean that the parent at some time may have to unbox. In good time they will get the notion to take and disperse things. Another pet peeve is DO NOT ask for some personal item from the deceased before they are even buried. (Yes, it happened more than once that week) Just so you don’t think I am heartless, my intentions were to give things to those who were close to her and would treasure them as I did. Yet, I would do that in my own time not theirs and when I wanted to give them up. Kristin’s death was a shock to us and not expected so she never said what she wanted us to do in the event she left this world. We had focused on living and never let the subject come up. Hope was all we gave right to the end until her Dad said, “You need to tell her it’s okay for her to go!” And with those words she was gone….
Pills are not the answer as they only mask what ails you as my grandmother use to say.
Work, for my husband is a big help to him when I have assured him that I am okay for that day. Work for me as being a stylist will only bring on more pain. Kristin was going to school for cosmetology as we had so many plans when she graduated. So now I need to find something that I really love as much as that to do. Where do I find comfort in something else that gave me so much joy as that did? The euphoric feeling I got when I changed someone’s look by a simple haircut, or the metamorphous that happened when I changed a plain Jane into a princess for prom night! I know most think that type of job mundane, but it’s not. Every day is a new adventure and challenge. The money is not too bad either, but you definitely work for it. So, I’m open for suggestions guys!!!
Spring is almost here and I am really looking forward to getting my garden growing as I have not had the pleasure for a few years. My five hens & one very cocky rooster have finally started laying as of a few days ago. I think that is only because every time Chuck walked by them he told the rooster that he’d be the first in the pot! LOL Anyway he got the hint and got busy!
To those of you that are still in this battle… my heart is with you and at anytime you have a question please don’t hesitate to e-mail me. I still lurk on the list-serves so I can keep up with others. I rejoice silently with those who become off treatment and weep for those who lose their valiant fight against this monster.
There is something else that has my dander up and by posting this by no means want to offend anyone in a religious sense. Many that I know have been trying to get a stamp made through the USPO for children’s cancer. It is not a very important item or shall I say not on their list of priorities. However this seems that it is:
Subject: USPS, what a joke

Dear Fellow Americans: REMEMBER the MUSLIM bombing of Pan Am Flight 103.

REMEMBER the MUSLIM bombing of the World Trade Center in 1993.

REMEMBER the MUSLIM bombing of the Marine Barracks in Lebanon.

REMEMBER the MUSLIM bombing of the military Barracks in Saudi Arabia.

REMEMBER the MUSLIM bombing of the American Embassies in Africa.

REMEMBER the MUSLIM bombing of the USS COLE.

REMEMBER the MUSLIM attack on the World Trade Center on 9/11/01.

REMEMBER all the AMERICAN lives that were lost in those vicious MUSLIM attacks.

Now the United States Postal Service REMEMBERS and HONORS the EID MUSLIM holiday
season with a Commemorative first class holiday postage stamp. We strongly urge
you to REMEMBER to adamantly and vocally BOYCOTT this stamp when purchasing your
stamps at the post office. To use this stamp would be a slap in the face to all
those AMERICANS who died at the hands of those whom this stamp honors. We also
strongly urge you to pass this along to every Patriotic AMERICAN you know,
whether by email or otherwise. To heck with the post office for feeling the need to be politically correct.

America is turning into a nation of fools.

You make the choice, but for me when children’s cancer is 10th down on the list for funding from the government, and Aids being #1 and now our postal service sees this as a priority…. God help us all! Allah too no pun intended!
So, even though I have bared my soul to you please continue to check back for updates and I promise I will try to do better. I can honestly say this has taken the wind out of my sails, but still hope for sunnier days!
Our love to you All,
Laura & Family

Sunday, December 15, 2002 at 09:45 AM (CST)

HELLO TO ALL!
I know that this post is long over due…but I have had to do some heavy duty reflecting the last 2 months.

Our oldest son Jason, is back home from Phoenix AZ and this has helped piece us together again as a family. Maybe, we are little dysfunctional but at least together. Thanksgiving was spent at my best friends house. For the first time in years I didn’t cook. We really enjoyed the day and as usual Kathy knew somehow that it would help us in dealing with the onset of Holidays to come. My life has been changed permanently and I see that there is nothing that can change what has happened. Most of you probably don’t know that almost 11 years ago Chuck & I also lost an infant son, Dustyn, at the age of six weeks. His death was very unexpected as he passed in his Daddy’s arms. He had 2 holes between the left & right ventricle in his heart. The pediatricians missed it as they just thought he possibly had a heart murmur. We survived that horrible experience as a family and thought that we would never endure pain and shock like that again. Then 8 years later we became faced with the possibility that we could lose another child, only this time there was so much more involved. We were hit with a curve ball that’s stinging effect will last us the rest of our lives.
Christmas, for us was has always been a happy time in our lives as I continued traditions passed down from my grandmother and her recipes. For those of you who have a child with cancer you may relate to what I am about to tell you. To everyone else hopefully it will give you a glimpse of Christmas Past, Present and Future!
So, on that note, for the last 3 years I tried to make Christmas as NORMAL as possible after Kristin was diagnosed. You know, one of those personal "lets not tempt the hands of fate" type of thing. But it didn't work...For all that time I continued to place my fears in a little corner of my mind. I knew full well that remission didn't mean cure and that there was a chance that we may lose this fight. It had nothing to do with if I prayed harder or kept my faith. I saw many lose who had a much better handle on that subject than I did. I fully realized that the beast, which had captured my daughter & family, had no preference to race, creed, color or religion. So I delved into the diease way beyond what the oncologist wanted to tell me. That was for self-preservation. It kept me busy, the docs on their toes and a few mistakes from being made. Yet in the light of it all I still did not win... The only salvation I have now is that my daughter is pain free and hopefully at peace. I have laid blame for my loss where it needs to be... Can I just pick up my sticks and go on from the day before diagnoses, erasing the 2 years & eight months our family was in hell? No! Can I resume my personal relationships with friends and family as if nothing has changed? No! Will any holiday be normal again? No! Different? Yes! But still a holiday which in order for us to heal, needs to be celebrated. You see whether you win or lose there are some things that are changed forever when you hear those words "Your child has Leukemia." Fear becomes a daily existence, even if you try to slip it, into a far remote corner of your mind. Relationships you had are either strengthened or dissipate. Holidays will always have a Tiny Tim haunting because it is real, not just a Dickens's story. You are living it and no matter how the end of the story goes your life has been forever changed. The solution is how you choose to continue.
So for me starting this year, I will try really hard to continue traditions that our family has grown up with. Cook like a fool, as that helps pass time. Smile as much as possible, even though my heart is crying, because it's broke. Pray for guidance and remind myself that there are too many just beginning this journey and way too many still fighting the beast. My compassion for all those families that I have had the honor to know in the last 3 years will well up inside and I am sure that on Christmas or before, tears will flow. But you know what? It's okay for me to cry. It is also okay for you to cry as well... We are brethren of a club not by choice, which gives each of us the right, to cry, feel sad, be mad or have whatever emotion may dictate the moment. The emotional coaster ride that we are on doesn't stop, not even by death. The lessons we have been forced to learn, some live a lifetime and never get it. Parents of a child with cancer have the hardest job of any parents imaginable. It is your job to give HOPE, regardless of what your emotions want to do. You are the one who your child looks at after a procedure has been done, lab results given or when the Dr leaves. They are not just looking for words they are reading your face for any signs of fear, stress or lines of worry. You become the best poker player in the clinic or hospital ward, as the only thing they need to see or hear is everything is OK. That hope, keeps them going and gives them courage to face the beast. Out of love, we have all boldly gone where most never travel and held on desperately to what little bit of control of our child that the medical profession would allow.
So when you buy your child toys or gifts for no reason it's okay as I did the same and have no regrets that my daughter's only want when she left this world was her life back and her fear of what it would do to me to lose her. I gave and received, unconditionally. The reason is simple, as the lesson I learned was how precious life is and how each day, should be a celebration. I will, find joy this year, as my friend had a dream that Kristin had come to her and was getting on her for being mean on Thanksgiving. Well, she told her she wasn't mean, just that it was a day she worked her but off cooking for a whole lot of people, and no one seemed to appreciate it. Kristin told her that this is the time of year that they love the most, seeing people having fun and being happy. She asked, "You can see me?" Kristin replied with "I see everyone I love!" So, with that thought!
Even though at our house this year it will look like a chair is empty, it really isn't. It will be filled with 21 years of love & memories...
I wish you all joy, happiness, but most of all Love!
MERRY CHRISTMAS!
Hugs Always!
Laura, Chuck, Jason, Lauren & our precious angels, Dustyn and Kristin

Thursday, October 03, 2002 at 08:40 PM (CDT)

Hi to All!
Well this has been a really tough month for me... my heart breaks daily as I miss Kristin so deeply it is unreal. I try to get busy but it doesn't seem to work either as I feel her unrest. I know that sounds weird but my direction is not clear just yet. I am sure that things will reveal my course but for now I'm idle. So on that note tonight we had the Light the Night walk in Gainesville. I was asked to speak and decided to share it with all of you as well.....
I would first like to personally thank all of you for being here tonight. Especially our team the Lake City Life Lighters. On January 11, 2000 we heard the words “Your daughter has Leukemia, Acute Lymphoblastic. Kristin was 19 and just beginning her life with plans for college, marriage,
A family of her own and in three words those dreams were shattered. All my husband & I could think of was Love Story..… For those of you who are here as parents or a spouse of a loved one with a blood related cancer you know what came next. Doctors talking Greek, long words you
can hardly pronounce, let alone spell. With that came your role as the caregiver which meant watching with horror the endless painful procedures like bone marrow biopsy’s, spinal taps, toxic liquids put in veins that they called chemo… Long hospital stays and endless clinic appointments
and blood draws. But as a parent and caregiver you have to reach way deep inside and pulls yourself up by the bootstraps, slap on a smile that is genuine and promise that it will all get better. And no matter what you will ALWAYS be there.

My daughter taught me courage and what is important in life. She was in remission for 22 months until she heard the word RELAPSE. Her reply to me was “MOM it’s just another step as she allowed them to take 18 vials of blood for research on deatric cells. You see she didn’t sit idle because she had cancer. She was an Assistant coach for a Jr. High Dance team in between all those visits to the hospital. I watched her face with so much pride when her girls won first place at University of Florida last summer from a dance she had choreographed for them. She looked at me and said mom they won! I replied no baby… You WON! She had also started college and for 2 months maintained a 4.0 before relapsing. Whatever Kristin decided to take on she did it with determination, spirit, kindness and love. However she didn’t hesitate to tell a doctor or nurse what she thought or question them in a heartbeat if she thought a mistake was about to be made.

For the last 2 years we walked here for LTN as I had always taught her to give back to those who give. This week has been hard not having her here as on Aug 6th she lost her battle from nocardia pneumonia that had been misdiagnosed and then not treated aggressively enough. As you look
around and see the T-shirts that say Every 9 minutes someone is diagnosed with a blood related cancer… Every 6 minutes someone dies! Still, no answers why? That just blew my mind when I read that in an article that had been sent to me from the Leukemia Society. Kristin’s one wish was that she could hold on long enough till a pill was made to cure her for good. For that reason we are here tonight. For those of you who are just starting this journey, Kristin would tell you “Never give up hope, or lose your faith! I will tell those who are friends or family members of patients & caregivers they need all the support & love you can give. Educate yourself on the disease, join the leukemia society and become an advocate for your loved one, as sometimes you may be the only voice they have. Remission does not mean cure and the road to being a cancer survivor is a long and sometimes lonely venture.

My husband thinks I am strong… I did nothing more than any other parent would do; however without his love and continued support Kristin & I would have lost a long time ago. He kept the fires burning for us to come back too… I Love you and God willing I’ll see you all here next year!


It was hard but I made it through without a major flood. A few quivers but it was OK! I again just hope that it reaches just one and I will be happy. Well its late and I need to try and rest. We are meeting some parents in St. Augustine this weekend that have children with ALL and I will update you all on how it went soon.
Our love to you all!
Laura & Family

Sunday, September 08, 2002 at 02:25 PM (CDT)

Well I guess this is overdue... but here goes. I first want to thank all of you for the beautiful cards that we received. Each one will forever be treasured. I had started a scrapbook for Kristin about 3 months ago and thank God she did get to see the beginning (All -Kids & Chemo Angels) and my dedication to her.
Every MOMENT is a GIFT!
To my beloved daughter,
This book is a reflection of your journey of strength, will & determination. Your brave fight for survival has touched many lives, yet in others you are a testament of hope. These pages hold those who brought you light in some of your darkest days. May you always remember those souls who were such an integral part of your healing. I have learned so much from you, as I am in constant awe of your courage. May this book show you Love! Mom
If I could sit across the porch from God,
I'd thank him for lending me you!
Well as you can see I am now sharing this with all of you as you were those souls... We just didn't know that the time she was lent to us would be as brief as it was and yes, I would go through the last 3 years a thousand times over if I could hold her just once more. But that isn't going to happen and I need to put all of my knowledge and strength into other areas than just grief. I want those who are still in this fight to continue to battle and forge ahead for change in the care of cancer patients. I want doctors to stop being so damn statistical. As we all know that should not be the basis of care because each and every one of our kids are unique and no one has a right to label failure by a number.
I guess I am trying to say that yes it hurts every time one of us loses a child and a few leave the list because it scares them, but I have to tell you that for each loss there are 10 victories. There are so many now OT and I celebrate quietly for their triumph. So as Kristin would say "Never give up" Win or lose we all need too, in our own way to find victory. We are gearing up for the LTN walk here Oct 3rd only this time I will have to put my daughters name on the banner of those that we walked the last 2 years in Memory of. That will be hard but if it helps just one more then it is all good. I have spent the last month reflecting, I was asked to speak at the LTN kickoff and I couldn't bring myself to go into all the pain that she endured, just the part of how important that the research is as that was the one hope Kristin had was that they would come up with a pill for ALL. Until that happens I guess I am indebted to the cause. Unfortunately we hear that ALL has the best prognostic factors yet until it is 100% cure rate how can any of us sit and be idle. I pray the stamp goes through and that people have their awareness raised of the hell we have all gone through. When I think of all the kids who have gone through treatment and the ones just beginning I get mad. I know what it does to families as we are still trying to heal and it may take a lifetime if that is possible. The fear never leaves because we don't know what the future has to bring. Until the beast is killed once and for all none of us will ever rest comfortably. Is that a possibility? I think so...
Kristin's memorial service was beautiful. Friday night's visitation was the way she would have wanted. Gateway is a new funeral home which was a old Florida home that has been set up just like it used to be years ago. Almost 350 were counted in 3 hours. She was truly beautiful. Thursday night our livingroom was filled with her friends who made picture boards of their memories of her. Chuck & I watched from the kitchen the healing going on. The service Saturday was awesome. The girls had over a hundred purple & gold balloons at the cemetary for everyone to release. As pastor Lonnie gave the last prayer and said AMEN everyone released their own piece of her back to our creator. It was an awesome sight as they all came together and then quickly disappeared into the heavens. That night Jason and all the kids that had spent so many nights at our house when they were younger stayed and played music and danced. It was a true Irish tradition fullfilled and as Kristin would have wanted.
Well I didn't mean to get on a soapbox, just that I did want to share my feelings and how we are dealing with our loss... I don't want anyone to be scared or think that because we lost it will happen to you. I have put the blame were it needs to be. My hope lies in you now to continue the battles and with each victory remember there is an Angel dancing and a mom smiling from ear to ear.
I love you all!
Laura, Vhuck & Family

P.S. Virginia thank you for the book and Jean, thank you for remembering it's a month

Wednesday, August 07, 2002 at 09:11 PM (CDT)

To All,
Our beloved Kristin earned her angel wings on Tuesday August 6th at 4:07 p.m. She was rushed to Lake City Medical at 7:30 a.m. as she was having difficulty breathing. The staff worked diligently to get her 0xegen stats back to a safe range. They did a chest x-ray, which showed the nocardia pneumonia mass in her right lung, and both lungs filled with fluid. At 9:30 she ripped off the mask they had put on her which forces air into the lung (somewhat like when in abated) and said, “I’m done with this” and then coded. They worked like crazy to get her heart started, which they did but she was unconscious. We told the doctor that if her heart stopped again to let her go. Word spread very quickly and within an hour the ER room was filled with family & friends, ours & Chad’s. We were told that they did not know if she would be able to pull through but there was a chance. Kristin was moved to ICU where everyone was allowed to visit her. The past 24 hours has been a blur & shock to us all.
Arrangements are as follows:

Visitation on Friday August 9th from 5p.m. – 8p.m. at
GATEWAY MEMORIAL
1332 West Duval Street.
Lake City, FL 32056
(386) 752-1954

Celebration of Life & Eulogy on Saturday August 10th at 2p.m.at
CHRIST CENTRAL
On Sisters Welcome Road.
Interment to follow at Forest Lawn on South 41

Our Family would like to thank everyone who has followed Kristin and her courageous battle against this monster. It was not the Leukemia but the Nocardia that caused her heart to stop. I am so proud of my daughter and in awe of her strength will and determination for survival. Every moment with her was a gift and we truly believe that if the angels in heaven didn’t know how to dance…. They do now!!!

We Love All of You!
Laura, Chuck, Lauren & Jason

Thursday, August 01, 2002 at 04:46 PM (CDT)

Hi to All,
When I last posted it was Friday morning, when I got to the hospital Kristin seemed to look a lot better and was talking a lot more. I asked Amy the P.A. to call Dr. Moreb (on vacation and told us to have them call him w/problems) but she said that she doubted that Dr. May would call him. I just wanted to see what he thought about everything and if he thought the G-tube was a good idea. He has been the one to get her out of past crisis and Kristin has so much trust in him. He will be back after the 1st and I can hardly wait. I was questioned again Fri evening by Dr. May about Kristin being 21 and an adult and that he wanted to know what her wishes were. I asked him what had changed from Wed when my husband was here? He said nothing but that he thought that someone (he offered) should go in an tell her what was going on So I told him that the DNR we originally had agreed to now has a clause. That if he thinks there may be a smidge of GVH in her body then they had better resuscitate.. Well that sure put a sock in the soup as he quickly ended the meeting with they would look for the papers that had been signed prior and I replied with "No one is to go in her room and ask or tell her anything that has to do with DNR or end of life issues, do you understand? He nodded. Even her night nurse agreed with me that it would kill Kristin for any subject like that to be discussed with her.
I was able to get some rest this past weekend as Chad stayed Saturday night and his parents spent Sat & Sun days with her. My sister came up from W. Palm and saw visited her Sunday morning. I still am having sleep problems. I wake up at 2 am and can't seem to get back until 5 then back up at 6 or 7 . But at least I think I'm ready to tackle anything.
Monday I had some things I had to do in town and at home so I packed a bag and went to the hospital late Monday night. When I got there Chad’s Sister Michelle was in the recliner ready for bed. So we had a slumber party sort of. Kristin didn’t mind a bit. I just crawled in bed with her. The doctors had decided to put a G-tube in Tuesday so she was NPO after midnight (no food or water). Tuesday proved to be a very long day as her 9 a.m. surgery was pushed back to 4 p.m. because of the platelets she needed prior. She is AB+ and it is harder to get those on demand. They finally arrived at 3p.m and were infused. I went back to her room at 5:30 and she was back but sleeping. The nurse said that they did not see any inflammation or ulcerations in the GI track, but they could not do the G-tube as she became combative. They had tried this with conscious sedation and it didn’t work. Well around 7pm Brenda, Sheri Dicks, Carrie & Debbie came to see us and give me a moral boost that really helped as I think I laughed for the first time in a while. Dr. May came in and said that they would try again on Thursday unless we could talk Kristin into a NG-tube (nose) on Wednesday. He said that this would help her get built up and after about 3 weeks she might not need it. The girls were so impressed by him and his interest in getting Kristin back on track… Okay will the real Dr. please step forward. Yes I told them that this was the same man who last Thursday asked what was the point of a G-tube as she only had a couple of days or weeks. Well, they were shocked…..me? well I’m kind of use to this by now!
Yesterday morning Dr. May & Dr. George came in and talked to Kristin about why they did not want to put her under general Anesthesia which was due to the lungs and the pneumonia. If they had to intabate, another infection could set in. Well we finally got her to say yes to try the NG-tube (nose). I chickened out and left for a while as Susan her nurse put it in. She said she was so proud of Kristin and that she had no problem getting it in. Go Kristin!!! I got her cleaned up and dressed in the Pj’s my sister bought and I left around 1:30 pm as I had a Doctor appointment at 2pm. I stayed home last night as Sue my next-door neighbor went to see her and Amber came up also around 4:30. Amber stayed till late last night. I couldn’t sleep again and called Spike about the labs around 2 and then at 4 and they were finally back. She said that they had already given her a half a can of boost plus and she tolerated it great. I am hoping that this will help the goods cells get strong and Kick butt.
The labs from Sat to today are as follows

WBC BLAST Nuets Bands EOS Lymphs
Sat /29.9, 31, 6, 0, 4, 57,
Sun /34.8, 20, 8, 2, 11, 58,
Mon /27.8, 19, 10, 3, 20, 41,
Tue /25.7, 17, 11, 1, 8, 63,
Wed /27.9, 26, 8, 0, 11, 53,

Thur /19.9, 34,


I see a trend, thank God We are still not out of the woods but the light the clearing is getting a little brighter. Knowing that Dr. Moreb will be back soon helps too. Kristin just needs to hang in there till then.
Thank you all for all the Love, Support & Prayers that you all have shown. Kristin needs them more now than ever.
Love & Hugs to All!!!
Laura, Chuck & Family

Friday, July 26, 2002 at 07:34 AM (CDT)

Hi to All!
Kristin has endured so much and is in so much pain. She was admitted on Monday because of dehydration. Her renal functions were up (creatin & bun) and phosp very low. Her Blast came down from 94 to 88 but her WBC was at 50.9. They gave her 2mil of dilaudid and she was out of it and still not very responsive. She just answered yes & no questions. They say this was maybe due to the high WBC, nocardia or just the disease itself. She had a fever. diarrhea and itching, which is signs of the GVH we are wanting, just not too much. They put her on D5, which is like having a can of coke to try to build calories. My family said that while she is getting rest & care, so should I. So as I left the hospital for the hour drive home that night, tears flowing as I felt like I was abandoning her and I totally felt helpless. I knew that I needed to get myself together (sleep etc.) I know I will need all the strength I can muster in the weeks to come. Yet I still had this hollowness inside which won't go away. I am so scared. I have held it together for 2 1/2 years until now and don't want to break down in front of Kristin. She would pick up on that right away.
Tuesday I stayed home and tried to rest. I had no sleep all night, maybe two hours if that. The nurses said she was still out of it and if I was going to get any rest, now was the time. I still didn't feel any relief mentally as every waking moment was filled with Kristin.
Wednesday was not a good day as Chuck & I were summoned by the head of the cancer units at UF which is Dr. May. He & Dr Winguard, a PA, her day nurse and some other resident all sat in a room to tell us that they have done all they can do. They wanted us to agree to a DNR as they said because of the nocardia she would probably stop breathing and if we wanted to bring her home what about hospice. Well this was our reply 1). The nocardia in MHO was increased because she was unable to take the liquid ceptra, which was very thick and made her gag. She had not had the required doses for almost a week. So now that they were giving it IV would we not see maybe a change? Answer was they didn't realize she had not had the doses (we told them this repeatedly in OP clinic) and Yes there should be a change. 2). That if we brought her home it would not be with hospice as that they only do pain control here and that they were not going to send her home without blood, platelets, meds & fluids. I wanted things to be a humane as possible. Answer was we will see what hospice can do or I guess we can continue with home health. 3) Dr. Winguard told me a week ago that the longest time frame he had seen for GVH to appear was 8 wks after taking a patient off immunosuppresants. So I told them that we were only 2 weeks into this and as much as they think that this will not happen now because of the WBC rising 55.9 and Blast at 90% I did not have that sick feeling in the pit of my stomach and that we were not ready to through in the towel. They agreed that Kristin has a strong will and fight (we call it the Kristin Factor) but with the way things looked it was highly unlikely we would see any changes. Well my DH said that as long as Kristin says Fight we Fight ... and that's, that! We told them that its between her & God now. Well guys & gals at 4:30 am Thursday I called her nurse to check on her and got the news that her labs drawn at midnight were 65% Blasts & WBC 41.5. She said not to jump up & down just yet but that was a very good sign. I now want them to put a G-tube in her for the time being so that we can get her the nourishment the donor cells need to continue to fight. I want to get her home, but only if I can get her everything that she needs. They said that TPN and Lipids IV are hard on the Liver & Kidneys and they don't want to cause any unnecessary problems in that area. At 8 am Kristin called barking at me to find out when I was coming to the hospital. I think she's back from wherever it was she went. Oh and we also reiterated that we did not want ANYONE going into her room without a positive attitude. That we would agree to the DNR but that no one was to ask her what her wishes were. Before we could talk to my mom about our conference with the docs a nurse caught my mom in the hall and hugged her and said, "I'm so sorry, you and your family are in our thoughts & prayers." My poor mother freaked. She told us she knew things were not good but not that bad. So I told her nurse to please speak to the morning shift. I asked her to tell them I wanted them to get their jaws out of their butts and put smiles on their faces. Right? You bet! Yesterday when I approached Dr. May about the G-tube he said NO/ That he didn't think there was any use that he told me in the meeting that she has a couple of days or weeks. I about fell over and told him he NEVER mentioned any time frame. Then I asked if he saw her labs and he said yes but there were a lot of things that could cause that. OK like what? He said an infection fluids etc. And then there is the pneumonia thing that will continue to progress. I swear I thought I was in the twilight zone. So I got mad told him he didn't have any way of knowing what or when. That I still want her to get nutrition whether it is for a few days or whatever. He said well I would like to see a rash... I would too but that something is going on in Kristin whether he thinks so or not. He insisted that the glucose they are giving her is enough. (What a pompous A_ _) Any way I stewed and then cornered the PA I aasked her about the D5 which is glucose (sugar water) and told her all they were doing was feeding the cancer cells. She assured me that it was also giving her body nourisment. I didn't buy it and told her it wasn't good enough. Dr. May told Kristin that she could go home today if she felt like it. Well I said No, she doesn't come home until she gets the tube or is eating. So this morning in sitting rounds they will discuss the G-tube and our wishes. She said Dr Wingard was not opposing the idea...Yea! Oh, Kristin's counts also showed Neuts 6. Lymph’s 15. Eos 12. bands 2 Blast 65.WBC 41.5 /Wed Neuts were 0 Lymph’s 7 eos 3 blast 90 WBC 48.7 / on Tue Neuts 3 Lymph’s 9 Blast 88 WBC 55.3 This morning I called at 4 again and her nurse said her blasts were down to 39% neuts 7 eos 13 I still say there is something happening here...What do you think? Again, thanks for all the positive energy!!!
So … friends, please continue to pray for her and that a miracle is happening with the GVH and that some how I may gain strength to see this through and that Kristin’s donor cells stay busy and fulfill their reason for being there, which is to fight & win the battle vs. the leukemia that is in her body. We need you all more now than ever. Please continue to do what you all have done for her as I feel that somebody is listening...

Our love as Always to you All!
Laura & Family

Saturday, July 13, 2002 at 08:27 AM (CDT)

Hi to All!
First let me apologize to each of you for not updating this last month… I fried my laptop and in the midst of all the chaos I just couldn’t find the time to borrow a PC to update. So now to where I left off…. I spent 2 days in Ft. Lauderdale and 3 with my sister in Loxahatchee. Lauren got to ride in the round pen and get some lessons. She surprised Keli and me as to how quick she picked up on it. She even got the horse to cantor and never missed a step. My father was defiantly smiling down on us. His memorial service has been put off to a later date. We had planned for this weekend but it turned out not to be feasible.
Dr. Moreb did just what he set out to do and on Friday June 28th she was released from the hospital. We sent her to Chards parents on Saturday and Chuck & I packed everything up in the trailer and with 2 trips on Sunday we were officially HOME!!! Kristin has clinic appointments on M-W-F, which means those long trips again, but it was better to be home. Well on Wednesday July 3rd she had one Kidney reattached to the bladder. Dr. Allgood wanted to wait on the right kidney till it was draining the way he wanted On Friday July 5th Kristin & Chad went to clinic and she had another bronchoscope done. I stayed home trying to unpack. At 2pm I received a phone call from Dr. Kauhn to tell me that Kristin’s blood showed 11% blast and that he was decreasing her Fk 506, and taking her off cellcept. He said that they would decrease her predesone on Monday if there was no GVH started. I sat there in total disbelief. Kristin called me soon after and was mad telling me this was not fair…. Last weekend went by somberly and by Monday we had decided to stay focused & positive. Blast were at 16% and Dr. Kauhn said he would have the coordinator call NMDP about getting more cells from the donor. On Wednesday I ran into the coordinator and asked if she had made the phone call. She said No, that they had told her Tuesday that Kristin had GVH. Well I flipped out and asked if she saw a rash on Kristin and she said No. I made some comment about they had better hope they did not get caught with their pants down. Well 10 minutes later she came back and said she would call just in case and that she guessed it couldn't hurt. UGGGGHHH! Blast were 34% and still no sign of GVH. FK was stopped but they didn’t want to take her off the predesone still 30 mg every other day. Kristin had the right Kidney attached so no she her bladder is back in business and she has no tubes or bags hanging. She said that she finally feels whole. Yesterday they stopped the predesone as still no GVH and Blast at 84% WBC 15.0 The results from the bronc came back positive for Nocardia which is a bacteria organism found in the soil. So all this time she has been on the antifungal ABLC (amphoterician) just held it at bay as she is now on liquid Ceptra 3 times a day. It is a very high dose. I can’t remember which dr took her off of the weekend Ceptra months ago but this is the result. They are scheduling a MRI for Monday to see if it has spread to her brain. Our main focus is to get some weight back on Kristin (95lbs) and pray that we see some GVH SOON. Kristin said last night that she felt a little itchy. I know that I sound very controlled, I have no other choice but to keep my outside emotions intact, but inside I am scared and feel so helpless. Once again I have to give it to a higher power to see us through. A friend of ours who just lost his wife to breast cancer and is like an uncle to Kristin told me that when you get mad at this disease and all that your family & loved one goes through, DON”T. He said to feel honored. Kristin and so many others who have or are dealing with cancer are the ones blessed. Whether they win or loose this battle they are the true heroes. They have forever touched so many lives and we are the ones that have been enriched and empowered by their presence. After thinking long and hard that night after he left I realize that he was right. No matter what, we as family & friends have changed and our outlook on life has changed. We no longer sweat the small stuff and we know who our true friends are. We look at each day as a gift now and cherish every moment. So … friends I have one very big request and that is to pray hard that Kristin’s donor cells get busy and fulfill their reason for being there, which is to fight & win the battle vs. the leukemia that is in her body. We need you all more now than ever. I promise that I will try to post every day or two during this critical time.
Our love as Always to you All!
Laura & Family

Wednesday, June 12, 2002 at 09:44 PM (CDT)

Hi to All!
I have good & terrible news to tell as I write this from Ft. Lauderdale.
Monday Kristin had a cystoscopy done again by Dr. Allgood. They took her in after 5p.m. At 7:30 I recieved a call from him to tell me the best news yet, that her bladder had no clots or bleeding and that the walls looked great and almost healed. He said that tuesday he would remove the catheter and see how she reacts to it.
That all said, I was so happy with the news I got very emotional with the Dr. as with what I had facing me, did not make it easy but certainly better. Sunday night my mom called and said that my Dad was in the hospital again with pulmonary edema and an infection. I called the hospital and his nurse told me that it was not good, He had an infection which put him into septic shock. They were trying to get his bloodpressure back up but was having problems.
So I told my youngest Lauren to start packing and we left around 9p.m Monday. Just before reaching Fort pierce I recieved a call on the cell telling me that my father had passed just a little after 1a.m. I wrent on to my sisters in Loxahatchee.
We will have a memorial service in 2 or three weeks, so I will be making this trip again. My heart is very sad as I so wanted to see my dad and say goodbye. Lauren was devastated as was Kristin too. We all will miss him. I hold his memory so close to me that mere words cant't even begin to express a lifetime.
I will be back in Gainesville late Friday or early Saturday. Kristin will hopefully get her kidneys attached to the bladder and maybe get out of the hosp. I will try to update again this weekend. May god continue to bless each of you!
Love & Hugs!
Laura & Family

Saturday, June 01, 2002 at 06:08 PM (CDT)

Hi to All!
Hope everyone had a good Memorial Day…. I went Saturday and picked up Tegan, Kristin’s new baby girl, a 6 week-old (Jack Russell Terrier) from my best friend, Kathy. Her dog Eli is Tegan’s Daddy. Friday I went and got her all the necessities to make her a happy puppy including the book “Jack Russell’s for Dummies”. From all I have heard about the breed I felt we all could use some incite to their complex nature. My mom has offered to potty train her and keep her till we can get Kristin out of the hospital. I have to tell ya, she is beautiful, smart, licks your face completely off and has a great personality already. Sunday, I took video of her playing with our outdoor cat “Blue” pulling his tale and good ole Blue just took it in stride. I had to keep telling Tegan to quit being mean. Kristin has watched that video over & over this week, so I guess I will have to add to the tape this week so she can watch her grow. On Tuesday the Urologist Dr. Allgood did another systascope on Kristin’s bladder. He said they removed 250cc of old clots from the bladder. The bladder looked better to him and he saw no specific places that it was bleeding from. His intention is to continue the irrigation and check it again in the near future. He said that his gut feeling is, that it will heal on it’s own, just that it may take a while. I told him that it didn’t matter how long, just that it healed and that she walks out of there whole.
Kristin has had some ups & downs as she is really bored but can’t do anything except watch TV. She wants someone with her at all times and is very depressed that she hasn’t even been able to walk outside for 2 months and smell fresh air. The only thing she is looking forward to is Tegan and taking care of her. She has been traumatized by the remarks from the bone marrow Doctor telling her for two weeks that she was going to probably loose her bladder. Her fears are now played out in her sleep and in dreams. All I can do is reassure her that Urology is doing everything they can to keep that from happening. She woke up sobbing and crying in her sleep last night for no reason and couldn’t remember what her dream was. Her mouth is tore up with GVH, which is making it hard for her to eat. She has an appetite finally, but can’t eat because everything burns the fire out of her mouth & tongue. She is still on the HAL & Lipids so at least she is not losing weight anymore. Her rash is gone and she looks so much better. They put her on cellcept along with the FK506 and predesone for the GVHD. Hopefully they will start to taper the predesone. We worry about the effects that it may have on the leukemia cells if any are left. Her liver functions were elevated for the most of this week. Unless they change they may do a liver biopsy to see if there is any GVH present.
Dr. Moreb IS BACK! YEAH!!! He started this morning his month on in-patient. His first response was “I plan to get her home!” Hopefully he will, get her back on track and home. He is such a good doctor and knows GVHD really well. Kristin has a lot of faith in him as well, so I am looking forward to this month being productive in her healing. Today he reduced the cellcept & predesone in half. He also increased her fluids and put her on lassix, as the ultrasound yesterday reveled kidney stones. He wants to flush the kidneys fast. Some of the IV meds he is changing to PO as well. The man already has a plan and I believe he will get it right…
Vicki, Kristin says a big TU for the 100 min card. Her eyes lit up on that one. We have to share the cell phone so this gives her a chance to call Chad when I have the cell. Diane, the PJ’s have helped me not have to do laundry every other day and Kristin just loves that big long sleeve shirt. She has gotten so many nice shirts and outfits but can’t wear them because of the catheter. We want to thank all of you that have continued to check on us, as I can’t begin to express what it means to know you are held in positive thought by others, especially when it’s been a bad day or the light of hope gets dim. You all have continued to lift us up in spirit and make the day brighter. Chris, tell Gouch he makes us laugh and his pics are adorable, Spiderman shoes ad all. She smiles and laughs when I read of the Russo’s currant events. Believe it or not it reminds us of our house when it was normal so many moons ago. Oh, the rolling eye thing…Kristin can tell you it gets worse before better, seriously. LOL We are waiting for clone #2 (Lauren 13) to start at any time.
I have changed the links down below to include Cindy’s home page that her Dad & Mom have set up with pictures and updates. Also there is a link to Kristin’s Quilt. Anyone is welcome to add a square. They did such a beautiful job. I have also added picture collages of the transplant. The wall of cheer and the painting that Annie did. It will forever hold a place in our home. She gave it to Kristin the day of the Transplant.
May you all continue to be blessed!!!!
Our love as always,
Laura, Kristin & Family

P.S. Kristin has a new room # 4252

Friday, May 17, 2002 at 10:22 AM (CDT)

Hi to All!
WELL ... The news is not real good so I will try to account for this past week and the events. It has now been 2 weeks since they bypassed the bladder. On Monday she was having a lot of pain with spasms and bleeding out around the catheter. So that night they did another systascope and removed some clots and also took some tissue samples to be tested. We have not recieved the results yet. I had expressed quite a few concerns that morning with Urology as to if this was GVH or something else going on? The head Dr. said that there were other options which was to inject Formulin which usually leaves the bladder useless or remove the bladder. Well I freaked out on them and said nither was an option. Mama was NOT HAPPY! On tuesday they came in and said they were pleased with the way she was flushing as they had decided to use an alum flush per my request. The bladder was flusing almost clear. I also had asked again about the procedure from MD Anderson called Prostaglandin. They said they had never done it and did not plan to either. Later that afternoon I had a Dr. appointment but before I left I got a call from Kristin hysterical. She told me that Dr. Finewitz (remember her?) came in and told her how sorry she was but that she did not believe that the alum would work and that she couldn't stay in the hospital forever and that she needed to make a decision about the bladder and possibly removal. She also said that they could do the prostaglandin thing but it was risky and may not work either. Well I told her to call her dad and tell him what was said and I would call her when I got back. I ended up with a high fever that night and couldn't go back to see her until Wed afternoon. In the meantime Infecteous Disease Doc came in and told her she had a cocci D infection in her blood and that they were starting her on Antibiotics for that. He also was not happy with the nephrostmy tubes in her back and said that needed to be changed. He also came up with a med for her to start that has been used to KILL the BK virus. Cidofovir. It is the same thing that I had asked about eight weeks ago in out-patient and was told NO, NO, NO!!! Well yesterday we were told that she may have to have some lines removed because of the infection. She has some leakage around the left kidney tube and hopefully today they will do a sonogram to check it out. Kristin is really getting weepy and feeling like she has really been zapped with problems. I am just so agravated with the whole thing and feel that a lot of this would have been unnessacery if some of the Doctors had not been so nonshalant in the beginning. Their passiveness may end up costing my daughter her bladder and it makes me furious and sick all in one shot. Now on top of all of this I am running out of funds and have to decide wether to pack up everything at the trailer or try to endur another few weeks. I hate to do that as if they get this mess cleared up and she is released we will have to go through trying to find another place again. We had only figured on four months financially and now we are going on six. I just don't know what is the right thing anymore and it is all so confusing. We need another fundraiser but I can't take the time away from Kristin to even try to get it going. Any ideas? Well I gotta run as Kristin wants some egg-drop soup for lunch. I'd run to the ends of the earth for her right now if the was something there she would eat. Again thank you for all the support and prayers from all of you. It keeps us going to know we are embraced by so many!
Love & Hugs to All!
Laura & Family

Thursday, May 09, 2002 at 01:16 PM (CDT)

Hi to All,
Ok, last week did not prove to be a prosperous week at all, and if things could possibly get any worse, it has. Kristin had the catheter put in again and irragatted it with Albumin flush to see how it went. The purpose was to stop the bleeding and recede the tissues on walls of the bladder. Things were looking good for a few days and on Friday they decided to stop the Albumin but leave the catheter in. Saturday things started to turn brown and Kristin's pain became intense again. Red became the color for the night, So Sunday they decided to do another Systacope. Well they removed 2 bowl sized clots, she got back in her room a round 8pm and it was a night from hell. She was bleeding around the catheter. The surgeon said that the bladder was tired and that some decisions needed to be made soon. I stayed all night with her and on Monday had a morning Dr. appointment for myself. So I left a # for them to reach me. Well I recieved a call from a doctor telling me that he wanted me to give him consent to bypass Kristin's Kidneys from the bladder. So that meant having two holes in the back on each side with a bag. I said No, that I would be ther in less than an hour and would talk to them then ... Well when I got there the had her prepped for surgery and someone had her sign consents when she was totally out of it! GRRRR! Anyway she went to OR. I only got to talk to the BMT docs and Kristin for just a few minutes and she was gone. I was livid, scared, and my nerves finally went off the rector scale. So I managed to hang on in long enough to see her when she got back from surgery. The nurses were working fast & furious and I was only in the way, They had only done half the procedure, which meant another trip to OR Tuesday. UGGGGG! I couldn't take anymore so I went back to the trailer and talke to the nurses all night about how she was doing. She slept pretty good and got some much needed rest. I spoke to Kristin at 8am Tuesday and she said they were getting ready to take her to OR again, all I could say was to beg her to hand in there just one more time.. My heart throbbing just thinking that my precious baby would now have two holes in her back connected to a bag just killed me. So with all that torment my stomache decideded to make me a prisioner for the next 24 hour to the porcelian bus. Thank god for Immodium ID. So at the present time Kristin has still severe pain, 2holes in her back, on on each side and a catheter in her bladder being irrigated still. She says she looks like an alien. The rash is more pronounced now and as of last night they CLINICALLY got proof that it is Stage 2 GVHD (no kidding) So she started on 50mg of prenesone. Hopefully this will help her to feel better soon. It may also help some other problems like the gut too. They have her back on HAL as she has not been able to eat for the past week.
I want to thak all of you for you much-needed support. She has recieved cards from Lois Holly last night. Please tell the school she was overwelmed. The Russo's idea she love the pic for the the first page in her guest-book, she though it was beautiful. GOOCH, you grace her wall right in fromt to remind her everyday. Rebecca & Kay Priest, your visit was very appreciated as there has been very few from home that have come to see her, She is trying hard to be strong but this last episode has really been tough on her self-esteem. She doesn't feel pretty right now...So the cards & e-mails are keeping her hanging on and we are just so blessed to have people like you in our live. May God continue to bless you and yours....
Love & Hugs Always
Laura & Family

P.S. She has a NEW ROOM # 4246

Tuesday, April 30, 2002 at 05:30 AM (CDT)

Hi to All!

The last 2 weeks have been a real challenge to say the least. Kristin is down to 103 pounds. Last Tuesday I finally convince the doctors to put her on IV nutrients. She was getting so weak, frail, and shaky that my fears of losing her became worse than I have ever experienced in 2 years. She was vomiting bile as she had completely stopped eating. Her will had vanished and it scared the hell out of me. So, after almost a week of TPN she is starting to come back around. She has had severe bone pain and stomach to the point, that Saturday I made it very clear, that her Dad & I wanted her comfortable. Chuck and a very good friend of ours Tony came and helped me state my case. The doctors were holding back in fear of addiction. Which right now our only concern was and is comfort and healing. They changed her pain meds that evening and for the most part, she feels better.
Her last chest X-ray showed marked improvement, so hopefully this week it will show nothing and they will be able to take her off the antifungal & antibiotics. She had some CMV cells show last week, so they put her back on phoscarnate. Last Thursday they took out her catheter, however yesterday she woke up unable to void so the Urology team came and placed another last night. She was filled with clots again, which is the BK virus rearing its ugly head AGAIN! Today they will try a procedure from MD Anderson, which we are all hoping works this time. Her stomach is still very aggravated. The results from the endoscopy and the colonoscopy came back negative for GVHD, however they are not ruling out that possibility. Today they are also doing a blood test to see if her adrenal glands are producing like they should.
Day 100 came & went Sunday without any celebration or mention. We finally got the results last night from the Day 100 bone marrow biopsy that was done last Wednesday. There was NO DISEASE PRESENT!!! With 30% cellularity. The esonphilles were elevated but not clonal, which shows that there is an allergic reaction to something or GVHD somewhere. So now the big question is what & where? Dr. Gorman told me that they all are so afraid of her leukemia as it is one for the textbooks. They are breathing a sigh of relief I guess just like us. He said that they really don’t want to give her predesone if they can avoid it. He told me that to suppress the immune system again would open up possibilities for more infections & viruses, plus the risk of tempting the Leukemia cells to multiply. They want her to have 4 more intrathecals with methatrexate as a precaution for her relapsing in the spine or cerebral area. One of the PA’s told me that ALL patients after transplant are at a 50% risk for it. That was the first I had heard of it. We want her to get stronger before we consider it though, and he agreed.
I want to thank you all for the entries in her guest book, cards, packages and e-mails she has received since I posted last. It has lifted her up though all of this, but we still have a way to go. She believes that she will never get out of the hospital. So please keep writing, calling and visiting as it give her HOPE, plus it helps pass the time too! I have started her a wall of CHEER again, which at the top is a great BIG rainbow from her Chemo Angel Jennifer, cards and pictures of the puppies (thanks Kathy, you should see the eyes light up) which she has to pick from by the end of May which little Jack Russell girl she wants. You all have been so wonderful and have lifted us so many times through all of this….
Hopefully today will be better than yesterday as she really had a rough one!
May each of you continue to be blessed!
Love & Hugs
Laura and Family
P.S. Cindy’s mom called Saturday to check on Kristin, She said Cindy is still doing well! We are still hoping & praying for a miracle!
For those close to home… I met a father from Fort White last night, whose 2-year-old son was just diagnosed 5 days ago with AML (Acute Meyolitic Leukemia)… one more to the list???

Wednesday, April 17, 2002 at 05:45 PM (CDT)

Hi to All!
Things here have not changed…if anything they are worse. On Saturday they removed her catheter, as the results from the cystascope reveled nothing. The renal docs removed some clots but saw no vessels that were bleeding. The tissue inside the bladder is still bleeding from the BK virus but not in any spot, specific. Kristin was very happy to finally have the catheter out but is still having spasms and passing clots but not as many as before. Then today she had no urine output so they are going to insert another catheter. So it seems that she is not out of the woods yet.
Now with the lungs… she had another CT scan done Thursday, which showed more lesions that the week before. They said that they could not do a needle biopsy or bronchoscope as they would not be able to reach the area in the lungs which is affected. Surgery would possibly be an option but that they would wait another week. I have seen the results of their surgeries on others and I am opposed to it. Hopefully it will not result in that being the only option to identify whatever it is that is in her lung. So they have her on 2 wide spectrum antibiotics and amphotericin, which is an antifungal. There is another antifungal that was discussed but it is not approved yet (even though it works greatly) and part of the hospital requirement is to be able to use it is that they have a specimen identified as a fungus. Tomorrow she is to have a bronchoscope performed. Maybe the results will hopefully diagnosis this and they will be able to get the right treatment going quickly.
She also developed a rash again which they think may be either an allergic reaction to one of the medications OR it could be GVHD. They did not want to give her predesone as if it was not GVH they did not want to increase the chances of stimulating any remaining Leukemia cells that could be lurking in the body. So they waited and it seems that the rash is starting to look better. They increased her FK (anti-rejection drug) to 2mg twice a day. Now her FK level is stable. She has a pretty bad case of thrush on her tongue and also some mouth sores. Which that is causing her not to eat and is down to 111 pounds. Yesterday, they found bacteria in her stool so she is on Flagel for that.
Monday they started her on Zoloft for depression. The thought on this is it will increase her appetite, give her more energy and help with the mental stress of everything that has been going on this last month. So far I don’t see any great changes but I guess it takes awhile for it to start working. Susan, her nurse said today they are going to take her off of all pain meds and anything that could possibly bring her down. Kristin has lost her zest, and fight. She just wants to sleep. I try to cheer her up, tell her she needs to eat, get out of bed, but to no avail. This is a side to her I have never seen and I am at my wits end on what to do to motivate her. The other part is that I have not been able to be with her much as I still have some kind of chest thing going on myself. I am scared to get to close to her and give her whatever it is that I have. I need to have 3 of me then everything would be great. Too bad everyone wants to nix cloning as I could really use it right now. LOL
Last Thursday Kristin got to talk to Cindy for a while; She seemed to perk up a little after the call. Cindy is at home and seems to be better. Her mother says that her breathing is getting harder, but she is as active as she can be. I am still praying that a miracle happens. Speaking of…Andrea Burns the 11-year-old AML patient who relapsed has had a miracle. Last week they gave her Mylotarg, which are monocular antibodies for 5 days. It was a last ditch effort by her docs. They told her parents that it took 2-3 months for it to work and that Andrea didn’t have that much time. Well they did a bone marrow biopsy 2 days after the 5-day treatment and she had not disease present. When they started she was over 50% with disease in her marrow. They started the second round this past Monday. Her parents are so thankful. As her Dad said it may not last but maybe by then something else will maybe be available.
Well day 100 is fast approaching but as it looks now we will still be here. Our funds are getting low so my hope is that Kristin will hurry up and get out of the hospital so we can go home by the end of the month. We figured on just 100 days, which was 4 months here in Gainesville. If it goes beyond that I don’t know how we will manage it. But I’ll cross that bridge when it comes. For now I need to concentrate on getting Kristin well. So anyone that has a second to spare please give her a call (352) 265-0042 room 45 or a card of cheer! I guess I need to start another wall of cheer again or something. Her address at the hospital is written down below. Any other ideas would be greatly appreciated as well.
One last note for those from home… Shawn Lee a friend of Kristin’s that I wrote about in the beginning of the journal passed yesterday from intestinal cancer. He and Kristin were in high school together. Please give his parents a moment of prayer. He fought a long hard battle. I have decided not to tell Kristin right now, as I don’t think she will be able to handle this news.
Thank you all for your continued support & prayers!
Our Love to you All!
Laura, Kristin & Family

P.S. I uploaded a Recent pic of Kristin in the clinic 4 weeks ago. Since then she has lost 24lbs

Friday, April 05, 2002 at 02:44 PM (CST)

Hi to All!

Today is Day 77+ past transplant… This last week has been very difficult for Kristin & I. My father had surgery and it was successful in saving his legs. He has an aneurysm below his heart, but everything else is ok. I am so thankful that I may be able to see him soon after I get Kristin back on her feet. Now on to her… they took out the catheter Monday but she has a bladder bacteria now other than the BK virus, which they are treating with antibiotics. She has been running a fever for the last few days and is doing a CT scan this afternoon to see what’s up in her chest. The Chest X-ray was neg. but they hear some crackles in there so they just want to make sure all is well. She still has some edema, which is being treated with lassixs. She is passing only a few clots now, so it seems that the BK may be on its way out. Yesterday I woke up with a fever and my chest filled. I started on some antibiotics right away and today I feel better but not totally up to par. The bad part is I am scared to see Kristin till tomorrow until I have had the meds in me 48 hours.
So, now for the difficult part. On Sunday we got the news that Cindy’s lymphoma was back and with a vengeance. Kristin and Cindy hit it off in out patient. We had gone out to dinner with her mom and last week her sister & Lauren met and spent their Easter break together. Cindy is 22 and in April of 2000 2 months after giving birth to Gabrielle she noticed a lump on the clavicle bone. That turned out to be Non-Hodgkin’s lymphoma. She had an auto BMT at Lee Mofitt in Tampa last summer which didn’t work so just a week before Kristin’s BMT, Cindy had a cord transplant. She had a lung biopsy to see if the spot was fungal, bacteria or what. I watched the anguish that this whole family experienced as they had to tell their precious daughter that her cancer was back and that they were taking her home. On Tuesday EMS came to get her… Kristin waited outside her room in the hall so she could say goodbye. They were supposed to wait for Kristin to talk to Cindy but they rushed right past and Kristin started sobbing that she didn’t get to say goodbye. Lauren caught up with them and asked them to wait a minute. Then Kristin went to Cindy, hugged her said something and they left for Pensacola. Hospice had been called to set up in her apartment. My heart breaks for her whole family. Then that afternoon I saw Andrea Burns’s (age 11, cord 4/6 for AML) dad in the hall. He told me all the money in the world wouldn’t save Andrea now. Friday they found out that her marrow was 50% with leukemia cells and that the doctors had no hope but had started monocular antibodies Mon. night. He also told me that Ryan who also had a BMT a week before Kristin (21, ALL 9/10 unrelated) his BMB show 10-12 % leukemia back. Kristin is so devastated by all of this news. She says she keeps seeing Cindy in her room. When I asked her for her labs today and she had to turn the page to give me the LDH total. She said “ You want me to turn the page so I can see mine’s back?” I don’t know how we are going to get through this one…. I want to give her hope that she will survive this and go on to live life to the fullest, yet I don’t have any guarantees for her and that hurts. I have seen way too much and with all of these recent relapses it scares the hell out of me.
I put a link below of Cindy’s web page. Her brother Tom put it together and I am sure he will update it with some recent pictures I saw of Cindy & Gabe just before her transplant. He said it was ok to put it on Kristin’s.
She will always be in our heart….
Prayers for these families and also for Bonnie who just found out she has lymphoma.

Love & Hugs
Laura & Family (Chuck, Jason our son, Lauren & Kristin)

Thursday, March 28, 2002 at 04:51 PM (CST)

HAPPY EASTER!!!!
Ok, I know that its a few days early but I didn’t want to miss the chance to tell you! Since last Thursday when I last wrote it has been crazy. On Saturday Kristin was discharged. She seemed to be progressing well with the bladder and things were coming out pretty clear. Amy the PA had set up home health for us to give the phoscarnate & IV flush at home. Yes, me hang IV fluids… so before she left HH came with a great big box filled with flushes, medicine, tubing, IV pole and the PC med-infusion box. You name it we have it! Chuck went to the hospital to get Kristin and all of the stuff that had just been dropped off. It was good he was here because besides all that Kaylen had brought bags of clothes that were size 5 for Kristin to try on. So the truck was pretty full. Saturday night Kristin had to go back to the BMT unit to get her night dose of phoscarnate as I had not been trained how to infuse her yet from HH. Sunday she went to clinic and it was a pretty uneventful day. That night HH came out and showed me how to infuse her, which I might add, went off without a hitch around midnight. So, I thought that this week would not be a problem and we would finally have some time to relax….NOT!!!! Monday morning when Kristin woke she was starting to have pain & pressure in her bladder as well as just plain feeling like crap. I dropped Lauren and her off in front of the hospital around 10 am and went & parked while they went upstairs to OP clinic. About 15 minutes later Lauren called me on the cell and said “MOM, you need to get up here fast…Kristin is bleeding really bad.” Okay, with heart in throat…when I got to the bathroom Kristin showed me a bowlful of clots the size of Texas and said she was in pain… Well to make a long story shorter… at 2 pm she was admitted. I took the hat she had been using over to in-patient for the docs to see. She had passed 300cc in 3 hours of just blood & clots. Scary! So they put another catheter in at 7pm but at 5am Tuesday she woke with the darn thing clogged. So a renal DR was called and at 7 am she inserted a different catheter but that wouldn’t work either. The 3rd one was the winner. It had stronger tubing that wouldn’t collapse. So as I write this morning she has been on this system for 48 hours and will probably continue until Saturday. Kristin has slept for the last 2 days and hopefully catching up on much needed rest. I have been trying to get Taxes done and getting some rest myself. Tomorrow they may try to take her off the catheter and see how she responds.ju
Now for the other news. On Saturday I got the news that my Dad had been taken to Adventura ER in Miami, FL and that he was on a respirator. They wanted my sister or I to make a decision to have his legs amputated as he had no circulation in his legs. We said no, that surgery if it could be done in the groin area, it would be the only acceptable way to go. Neither of us could fathom him waking up to something like that. So as it stands now they have him sedated and the circulation had come back into his legs. My mom was going to stay with Kristin so I could go down to my dad but then all this happened on Monday. So this really shows you when it rains, it sometimes really does POUR!
Now, as I sit here this morning writing I am filled with many emotions….Worried about my father of course, wishing that I could be there with him. Concerned, but more at ease with Kristin’s dilemma. Yet with all that is on my plate at the moment, I am thankful. Two years ago Easter we experienced first hand the pain of losing a loved one from cancer. Eric Inman who Kristin had become friends with lost his battle after a BMT. We came very close to losing her too from a line infection that weekend with a fever of 106.3. We both saw and felt his parent’s anguish and despair. Since then there has been many more souls who have earned their wings that we have had the pleasure of knowing and loving. Yet when this journey began our family had no idea our lives would become entwined with so many or that our hearts would break & mend, and break again. Nor, did we fathom that a perfect stranger would save our daughters life by giving her some of his own life’s source. So, yes I am humbly thankful that I have had the opportunity to experience this journey. Just as Easter & Passover are celebrated in remembrance of a sacrifice for salvation and life, each of us who have, is, or know of someone traveling this quest for survival, have also in this realm, had to sacrifice for the love of another. We do it unconsciously and without question. Our hope is that our endeavors will bring comfort and aid somehow in the healing of our loved one.
We have been blessed with some very special friends who after losing a child, brother, wife have continued to support and encourage Kristin’s will to survive… Vicki, Marylu, Elmer, Jake, Jean …. your support, concern and love you have shown us when in your own life was so much pain, yet you still made time for Kristin is so endearing. Through your loss you have become a beacon of light to others!
So, to all of the Chemo Angels, my kindred friends from ALL KIDS and BMT - ACOR, our friends, family and community at home, the staff at Shands, and especially my wonderful husband who in the darkest hours of my life has always shown me light….Thank You! You have all brought comfort and aided in Kristin’s healing. May this Easter bring you reflection, peace and light knowing that you have given comfort that will be treasured and never forgotten.
May the Powers that be, continue to Bless You and Keep You safe!
Our love always!
Laura, Kristin & Family

Thursday, March 21, 2002 at 12:03 PM (CST)

Hi to All! Day 64+
Well my last post over a month ago said that there would probably be more bumps in the road however I had no idea how many. Which is the main reason that I have not had a chance to update you on her progress. She spent 16 days in the hospital and was released on day 39, which was February 26th. During that coarse her kidneys decided to shut down. Dr. Moreb was meticulous & methodical in his treatment. He backed off of one med & waited to see the response to see whether it was medications causing the kidneys dysfunction or if it was possibly GVHD. I have such a high admiration for him. After transplant it is truly a great balancing act performed by the physician and it takes a great Doctor who has keen incite into the patient as an individual. You want GVHD but not too much nor too little. He really understands the marrow and its process. He also does not treat the patient by standards as he says each patient is different and unique. During that time he would come in to see her 2 & sometimes 3 times a day to see how she was. Her mouth also became worse if that was possible. They finally gave her a suction tube, which helped her get out all of the mucous, & clots. The bronchoscope finally came back that she had HSV virus in her throat and esophagus. This is the same thing that we all have with a cold sore. So her explanation of it feeling like razor blades when she took a sip of water made perfect sense. On the 25th the skin biopsy came back with confirmation clinically that she indeed had grade 2 GVHD. So she was released on the 26th. They had put her on phoscarnate, which is the only antifungal that will treat both CMV & HSV that requires IV every day so that meant going to clinic. Kristin’s mouth continued to improve and on March 2nd she had her first real dinner at a Chinese restaurant. We watched with pure joy at every bite she took.
On Monday the 4th we received the wonderful news from Dr. Finawitcz that she wanted another BMB as there were some CD 34+ cells in the last biopsy that were clustered she didn’t like and wanted to see if it was the leukemia coming back or what. So now our joy turned into worry AGAIN!!!. She had the biopsy the following day. My mom & Lauren came and watch the procedure. They have always asked questions so I thought it would be good to see first hand. Again the specimen looked good to me and I was pretty confident that all was well. On the 8th we were told that it was clear. The report said that there was 30% cellularity and multiliage meaning that the marrow was working, as it should and every part doing its job. Oh and the CD 34+ cells that were having a tea party before had now gone back to their respective places and were back to work. Yeah!
So now for the latest… On the Friday the 8th Kristin started complaining that it hurt to pee. It progressively got worse and on the 11th we were told that she had the BK virus. Dr. Finawitz told her that it had to run its course and sometimes it requires hospitalization. Sunday she passed a clot the size of my little finger, which concerned me but I was told there was nothing that could be done and that it needed to run its course. Well on Monday she was admitted as the ultrasound reveled that there was something in her bladder and the right kidney showed signs of a backup and not functioning as well as it should. For 10 days she has been in extreme pain with me up with her every night and her having the urge to go every 15-20 minutes. I was so afraid that she would fall off the seat as she has still been requiring platelets 3 times a week and blood about once a week Tuesday the renal team decided to go in with a camera and see what was going on. Chuck & Kathy came to give me some moral support. The surgeon called me about 20 min later and said they removed another clot but saw nothing specific that was causing the bleeding and that it was the BK virus causing the walls in the bladder to be swollen and oozing blood. I asked if they had put a catheter in and was told no it wasn’t needed. Yet she had gained 8lbs and her legs were starting to look like they did before. Oh by the way I forgot to tell you that she lost 32lbs from the mouth ordeal. So she was returned to her room. That night her nurse Susan said she had an order for a catheter if she wanted one. Well Kristin consented after convincing her that she would be able to get some much needed sleep. By 4 am Wed. morning she had output of 2 liters of fluid. During the day she passed a few small clots but by evening she had very little output and a great deal of pain and pressure. She told the nurse that there was something blocking and after 2 times of trying to back flush it was removed. Yes there was a clot and tissue weaved in the end. So at 11 last night, the renal team said if she didn’t expel in three hors then they would put in a different type that was larger and evacuates the bladder. At 3 am it was put in and at 9 she again passed a huge clot. They have got her pain under control finally but we still have no idea what or how long this currant dilemma will last. I am exhausted mentally & physically. I have had to sit back and watch her suffer through all of this not being able to do much but just be there. Yet through all of it I keep thinking we will take all the viruses and little bumps it takes if it means her one-day leaving here and not ever having to look back. The biggest problem is that they don’t prepare you for all of the little things that can happen which when you add them up they all seem to be BIG ONES. Again I want to thank you all for your support, love and prayers. I feel like I have let you all down by not posting but it has rally been a month from Hell and no day was a good day. When I do have a chance to get on-line I am so tired I just can’t think straight enough to write. Last night was the first 4 hours of continuous sleep I’ve had in over a month so I figured I’d better write while I can.
Our Love to you all!
Laura, Kristin and Family

Saturday February 16, 2002 0:08 AM CST

Hi tp All!
Sorry for not updating the last 2 weeks but things have been rather hectic. This last week has especially hard for us. On Tues 2/5/01 Kristin was discharged which if anyone is counting was Day 18+ past transplant. She started going to OP clinic on Wed. and by Friday Kristin was in severe pain and couldn’t speak above a whisper. Her Throat is so raw as well as her mouth. Then on Friday her labs showed Lymphs at 80 w/50% Atypical. There was also 1% metamylocyte which is usually an indicator of Leukemia like Blast cells. On Saturday the Onc decided to do a flow cytometry on the periphial blood. He said that it could be one of three things 1) Donor lymphocytes 2) CMV virus (1-2% cells showed up Mon.) or 3) the Leukemia taking charge. Needless to say I didn’t sleep much Saturday night. Sunday we got the news of no Leukemia (just in the blood circulating)! He said that he thought they were good strong donor lymphs fighting very hard. He also said that if that is the case then the reason for the metamylocyte is the marrow is producing cells so fast that some immature cells are pushed out into the blood. That night the pain became worse and on Monday at clinic she spiked a fever. so they decided to admit. They started her on IV antibiotics. On Tuesday they did a bone marrow biopsy. I watched the procedure and the asperation blood looked like the color of strawberries really healthy and yes was perhaps just wishful thinking on my part. On Wednesday they did a bronchoscopy and took some biopsies. As the week progressed I watched her physically break down and could do nothing to make it better. Her mouth and throat lost the lining several times so much so that today her mouth was just one big clot and swollen like she had been hit with a baseball head on. Her ankles have swollen again because of no nourishment. Protein would pull the fluid out of the tissues, however she couldn't even swallow a sip of water. The rashes which may or may not be GVHD are uncomfortable and itches but is the least of the bad stuff. So with all of that we have been waiting for the results from the BMBA since Tuesday as well as the skin biopsy, and genetics result from the aspiration for the donor % of cells. At 5:00pm to day we were finally told that the BMB was clear and NO LEUKEMIA present. Along with that wonderful news she is 99% Aussie (translation is she has 99% donor cells). The skin biopsy said non specific however the doc is saying GVHD because he gave her a HD steroid at 3pm and the swelling was gone and she had just had her 1st sip of water when he came in at 5pm he was shocked and said only GVHD would respond that quick to the steroids. He had hesitated to give her the steroids as it can cause the cancer cells to multiply and didn't want to take the chance until all the tests were back on the BMB. They are starting her on a VERY low dose of GSF to kind of give the donor a boost to fill up the marrow. He said they perform another biopsy in 14 days to see how the marrow is responding to the meds. I am so thankful and blessed yet I know that we still have a long road with probably a few more bumps in it but it will be okay. Thank you all for all the prayers, positive energy and cards. I believe that all of you have played a very important part in her healing process and I can never thank you enough. So hope you all have a great and wonderful weekend and maybe this news will add too it!
Love you guys BIG TIME!
Laura, Mom to Kristin DX 1/11/00 pre-B ALL
Relapse 10/11 & 12/15/01 BMT (MUD) 1/18/02
BMB Day 25+ "CLEAR" No Leukemia
99% Donor cells Day 28+ 2/15/02

P.S. Vicki your bear got delivered yesterday on Valentines day and she loved it!
Jennifer (Chemo Angel) She also got your FISH and we all were in awe of your talent!
You both made her Valentines Day Happy even though she felt so terrible… Thank YOU!!!

Thursday January 31, 2002 2:16 PM CST

OH HAPPY DAY!!!!!!!!!
Today Dr. Wingard & Dr. Larson said that they think she is or has engrafted. They also think that she has GVHD less than grade 1. Her ANC was 378 this morning up from 210 yesterday.
I am sorry that I have not written for the last 5 days but it has been a real rollercoaster ride. Sunday her fevers were still up an she was miserable. Her mouth & throat looked like cotton had decided to take up residence. A bright red rash appeared all over her body. Monday she started having problems voiding urine and by Tuesday we had Kidney docs and a renal ultrasound done. I got to see her organs but couldn't tell if they looked like it was suppose to. All it did was make me more worried. That night her legs had 8 pounds of fluid on them and the pain was so unbearable for her. So we were told the meds that would be used and that if they didn't work she would have to have dyalisis. She recieved 4 pints of packed red cells in 24 hours which are supposed to help kick the kidneys into working again. Finally last night she began to void and today is feeling some relief. The doctors don't think that there is any damage and that in few more days all should be back to normal. So as you can see I have had my hands and heart full.
I however got my wish for my birthday (even though it was looking bleak). She kept apologizing for being sick and worrying me. I told her there is always another day....
Her "Wall of Cheer" is growing. She has been overwelmed by everyone who has sent good wishes. The doctors are smiling which is something I have not seen in a long time. I think of all the special people in our lives and how blessed we are to have their love. Dr. Wingard said that the transplant is a miraculous wonderment of the human body. As I walk these halls of this BMT unit and hear the stories of those who are winning and those who are loosing this battle my heart rejoices and is hurt but my mind continues to be amazed by the strength and will of all the patients fighting to live. As strange as this may seem, I find comfort that the human spirit still remains our most powerful allie along with the help of a higher power.
May God Bless each and every one you!
Love & Hugs!
Laura & Family

Sunday January 20, 2002 10:17 PM CST

Hi to All!
I have not been able to get out on the laptop but I think we have it licked now. Kristin's BMT Friday went off without a hitch. Amber came thursday evening...Around midnight Thursday, Kristin's nurse told her that the donor's cells had arrived and were safely tucked away in the stemcell lab and that we could all go to sleep... Right??? Friday morning the PA came in and told us that the Donor is AB+ and she is A+ so they were expecting some reaction during the infusion. It was awesome as Kathy video taped a 30 min clip over the 2 hour infusion. I think it will be a nice gift for the donor to see what we did to celebrate his gift to Kristin. Her color was very pale and ashen before they started and as time passed you could virtually see life come into her. By the end of the infusion her cheeks were rosy and for the first time in a long time her color was glowing. Annie Thomas brought a cake with confetti that said "Happy Day 0" with a 0 candle for her to blow & make a wish. We also had red & white balloons to signify all the new good cells that will be made with a Smiley face that said Happy Birthday!. There is also a Good Luck poster outside her door that everyone has signed. Kristin & the donor's cells were blessed before infusion by pastor Lonnie Johns and with 11 close family & friends (all joyfully teary eyed at the end of the prayer) the process was started. Later that evening she was up walking the halls! She also has been eating really good for the last 2 days.
Her ANC is now at 30 and probably really 0 as she says her mouth is beginning to get sore and her throat. I am still just so in awe how this all came about and how her body held out for the 10/10 match. We know he was international and from checking her donor match list the only perfect one was from Australia. Which if that is the case he may just be a long lost relitive as my fathers family was sent there from Ireland. Wouldn't that be a hoot!
ANNIE- Kristin Loves the painting( and Isabelle's too!). It is on the wall right next to her Jesus & Lamb etching. Everyone that has touched it and read the discription & meaning gets goose bumps. She recieved all her mail today from the Chemo Angels and the cards are just wonderful inspirations to her. Jennifer, thank you for yours too! Kristin & Chad love to bass fish & the moldman magnant is just to cute! To Mike Hunters mom Barb... your card means so much to us both as neither of us have any doubts to his participation in all of this. She loves the angel rose pin!
I am just so thankful to everyone that helped this happen. I will try to update more since I think msn is finished with their upgrades and maybe I will be able to get out online. Right now things are not very eventful, however I do expect a little roller-coaster ride. I realize that the worst is yet to come but pray that she will stand strong through the rough spots. Thank you for all you positive thoughts, energy and prayers as I truly believe that they help even from afar.
Hugs & LOVE
Laura, Kristin & Family
***P.S. I have updated the mailing address for the hospital. It is a PO Box just for patients mail so she should get her mail faster by using it.

Tuesday, January 15th 2002

Hi to All!
Well Sunday Kristin finished her last dose of Chemo! WOW! Hopefully really the last because there will be no need! Monday she started radiation at 8:30 am 2 times a day. She had no nausea after and really seemed to have no ill effects. She did say that her bones kind of ached but nothing that she couldn't handle. Annie Thomas & Isabelle came by to see her and Kristin really enjoyed watching her.... She just love little kids! Later Amber & Donna came and stayed till 8pm and that really picked her up! Of course Amber has never had a problem getting her to smile. Today was good and we went outside for some fresh air a couple of times. Her ANC is still up so she is taking full advantage of the freedom before she is confined to the BMT floor. The transplant will take place sometime between 10-12am Friday and the donor is a 10/10 perfect HLA match. We are so very blessed. Our prayers were answered, it just took awhile! I will try to update Thursday before the BIG DAY!!!
Our love to you All!
Laura & family

Saturday, January 12, 2002 at 06:50 PM (CST)

Hi to All!
Sorry for the delay in updating but I had trouble getting out here at the hospital and still have not been able to get mail. Yesterday Kristin had another Hickman (line) put in her chest. The surgery went well and she experienced hardly any pain. Today she started her first dose of HD cytoxen which only caused burning in the nasal passages. All in all she is doing good. The blasts (22%) showed back up in the blood yesterday, today was 19%, which by the doctors is not an optimal situation however we look at it as when we see them gone we know the chemo radiation is working. I almost put a sign on the door saying "No negativity enters here" But they got the hint with just a few remarks.
I have a good feeling this will be the cure!
Our love to you all!
Laura

Sunday, December 30, 2001 at 01:23 PM (CST)

Sunday Morning 1:30am Kristin Spiked a 104f
fever, she was admitted to BMTU. Antibiotics Started, Chest X-ray clear. Awaiting Blood test results for possible line infection

Sunday, December 23, 2001 at 12:37 PM (CST)

WE ARE HOME FOR CHRISTMAS!!!
Yes they let her go Thursday night... They did an LP and replaced it with methotrexate. Amy showed Kristin the spinal fluid and it was crystal clear which is a good sign that there is no leukemia involvement. She went home with still 1% blast in the blood but her PA and Dr. Reddy were not real concerned. They said her counts are doing exactly what they want and for now just to monitor them every couple of days. So Saturday we went to Gainesville and her Red blood cells are starting to come up on their own and she had 0 blasts. Hopefully that is the same in her marrow. On the 28th she is scheduled for another biopsey and from the results we will know how effective this chemo was. She will be admitted the following Friday the 4th and the 11th will be the transplant. I am looking at last week as just a practice run for the real thing. Our holiday will not be a material one this year but it is okay..,. I have my daughter to hold & hug and that is more than enough. When I think of Mike Hunter, BJ Garcia, Rose Walker, Troy Diamond, Arielle, Mike Caswell, Michael Larson and little Austin (only age 3 & lost his fight this past week from Appalachicola) ans so many others who recieved angel wings this year and their loved ones that have been left, it makes me so very thankful that I have Kristin here, with us to hold. My heart breaks for their parents whose arms are empty and their hearts saddened but filled with precious memories. I also think about all of those families this year who will have an empty chair at the table who lost a loved one on 9/11. So... this Christmas while you are around those that you treasure just give them an X-tra special hug and tell them how much you love them! My new saying is don't just show them, tell them too! So to my beloved Friends, Family and Cyber Friends & Family.... I LOVE YOU ALL!!!!!
"MERRY CHRISTMAS & HAPPY (HEALTHY) NEW YEAR" ((((((BIG HUGS))))))
Blessings & Peace to you all!
Love,
Laura, Chuck, Kristin, Jason and Lauren

Tuesday, December 18, 2001 at 03:51 PM (CST)

Hi to All!
Well sometimes all the best laid plans just don't happen.... On Friday Kristin was admitted as planned. Blood was drawn and then because of the counts being weird they decided to do a Bone marrow biopsey. The results came back Saturday morning... the beast was back and with a vengence. Relapsed with 75% in the marrow and 19% blast in the blood. Dr. Reddy decided to start her on 5 days of heavy duty chemo. So at 6pm sat. the first bag was hung. At 12am Sunday labs were drawn as she had had seven hours of constant chemo. I couldn't sleep and at 5:30 am I got her results. 0% blasts (cancer cells) in the blood. I couldn't believe that her body had responded so quick. Okay, with that all said you all remember the 2 donors 9/10 & 10/10? Well since this has all happened they have sent an urgent to work up the 10/10 ASAP which is a male and age 30 and a perfect match. Kristin & I both are thankful that there were two but before we left to go to the hospital Chuck, Kristin & I decided that from this point on it was in God's hands! That if this donor (9/10) was the one then all would go smooth. So we now know he had another plan and I have every confidence and faith that all will go smooth with this donor. Please keep her in your prayers and that the new donor will clear his tests and be available for her. The first date set for the new transplant will be January 11 or around that date. I will try to update as we get new news. We may get to come home for Christmas but it depends on her counts! Hope all is well with you & yours
God Bless!
Laura, and Family

Sunday, December 09, 2001 at 02:12 PM (CST)

HI There to All!,
Well we are all enjoying this last week at home before next Friday. Kristin has to go Wed. for labs & get her teeth cleaned. Then we will be packed and admitted early Friday morning. She will have a triple lumen Hickman put in sometime that morning. This is necessary as they need lines that are larger to infuse the donor cells not to mention other meds. After she wakes up from surgery they will start hydration in preparation for the high dose cyclophosphomide (chemo) that they will start Saturday. I am so happy that we had another week to get ready. For those of you who know me personally you are probably saying "Yep, are you sure 1 is enough?" You see I am a great procrastinator, yet some of my best work is last minute. Not to mention I am usually late for everything and Kristin says I will probably be late to my own funeral... Flat tire or something will happen. I told her that was okay cause you couldn't have it until I got there Right? Anyway I feel better having more time and not being rushed.
The official date for the transplant is December 22nd which is a Saturday. They will take the donors cells on Friday and then fly them to Kristin. When thinking about all of this it is so amazing. Just to think of all the timing and people involved that make this process possible it is overwhelming. From the DNA lab people to the National Marrow people, doctors, nurses they all play such an important part in making this miracle happen. We are truly blessed! I guess we will celebrate Christmas in Hospital as with this being only three days after the transplant, I cannot in good conscience leave and go home so I guess Lauren, Chuck and my mom will just have to come to us. Although I still have nightmares from the last holiday in the hospital (Easter 2000) and having Wendy's for dinner. Well I will keep you posted as this transpires.
May God bless all of you!
Love & Hugs!
Laura, Kristin & family

Wednesday, December 05, 2001 at 06:31 PM (CST)

Dear Friends & Family,

Today Kristin has had a really rough day. This morning early they preformed a procedure called phereese which is like a the machine they use when you give platelets only much, much larger. It is used to collect stem cells from the blood and return the plasma. So two big pencil point size needles were inserted into each arm. One to draw and one to return. You can look through this glass and see the tubes separating the blood, it is such a miracle of modern science. Well she did great until about 2 hours into it when her left arm began to hurt. The nurse beside her lifted the cover and freaked as she had blown the vein,. She turned off the machine and yelled for help. Rick who is just the best needle nurse around came and pulled that needle and quickly put in another in another vein. But within minutes that on blew as well. Kristin was hysterical by then. So they shut everything down and said they would have to wait until later to see if they got enough cells (target was 4 million). If not she would have to come back tomorrow. Well from there we went to get a CT of her chest. Two X-rays have come back stating she has pulmonary edema.. But the Onc's think it is nothing because Kristin has no signs of edema. That done we went to the dental surgeon to have her jaw tooth pulled as the cavity was below the gum line. I got a phone call from Jackie the Stem cell nurse while waiting and was told that she had just been told that the preliminary count of stem cells were 54 million and that the felt that they had more than enough. Thank God!
The meeting that we had yesterday with Dr. Wingard went better than Friday. He has a much better bedside manner and explains things in a way that is easy to understand. He has decided that because of her extraction he wants to push back the transplant a week so that she can heal. The donor has agreed and all we are waiting for is her OR to reschedule the procedure to remove the donor cells. We hopefully will know more tomorrow. So it will probably be back to the original date of Dec 21 with her being admitted on the 14th. We really need that X-tra week to get everything in order. So I will post with updates as we get them!
Again thank you all for your prayers positive thoughts and wishes
Love & Hugs.
Laura & Family!

Friday, November 30, 2001 at 10:49 PM (CST)

Greetings to All!
Well today Consents were signed for the transplant! Kristin has a donor who is a 6/6 or actually a 9/10 match. The 1 mismatch is is on the C loci which from what they told us today it has no bearing on GVHD (graft-vs host disease). The donor is a 37 year old mother of three. Kristin will be admitted on the 7th and start the countdown on the 8th. The donor will have stem cells from her marrow removed on the 14th and someone from from the National Marrow Donor Program will fly it to Kristin and it will be infused to her on Saturday the 15th. Tomorrow Kristin starts giving herself neupogen shots for 5 days and on Wed & Thurs they will remove her stem cells just as a back up incase she didn't engraft.
This past week has been very difficult for us both. Monday she had to have labs done and get a ekg and a Chest x-Ray. Wed she had a radiation consult, shrink evaluation and more blood tests. Today was the transplant consult, consent signing (where they tell you all the bad things that can happen) and more labs. We are both exahusted. All of the criteria that needs to be done prior is VERY STRESSFUL to say the least. My emotions are getting to be much like a rollercoaster and I want it to stop. Kristin just wants to get this over. She has grown up in the last few weeks beyond belief. I at times gain strength just from watching her spirit and attitude. She is very sure of herself and her faith and it is such a blessing. She is facing so many what if's headon and doesn't seem to even stumble.
On a very bright note... we saw Miguel & his mom today. They are in patient housing as of Wednesday. He engrafted on day 9 and released from the hospital on day 17+. The doctors are amazed at his recovery. I hope things are that smooth for Kristin. So please keep those prayers and positive energies coming. We will take all we can get.
I will try to post again Tuesday evening and let you all know how it goes!
Blessings to All!
Love & hugs,
Laura

Wednesday, November 21, 2001 at 09:04 AM (CST)

HAPPY THANKSGIVING TO ALL!
Gosh I feel warm & fuzzy!
Kristin had a BMB yesterday and a couple of
teeth filled(pre transplant work). If this biopsy is clear then we will hopefully be able to wait for that perfect donor. Right now the have one that the NMDP & UF think might be it. We haven't gotten the particulars on HIM/HER or age but they say it looks good so far. This will maybe mean
a BMT before X-mas but what awonderful gift if would be if she engrafts on X-mas. Her counts are WBC 2.4 Neuts 49 Platelets 205 Sat they were WBC 1.5 Neuts 93 Bands 1.0 platelets 79 I would say that the marrow is definitely rebounding. The bad news is that our housing will be 8 or 9 Hundred a month after the transplant. That just cover phone lights & roof. Our insurance will not cover it as we are not more than 100 miles from the Hospital
Now for me! Friday just before I left for the weekend my purse was stolen right in front of the salon I sort of work at. So I had to make out a report with the PD. Thank God I hadn't got to the bank yet. The thief just got a lot of bills I didn't want anyway, my checkbook & DL. My 30th
reunion was a blast. It was at the Marriott in Ft. Lauderdale. I had to quickly look at name tags on some and everyone kept coming up and saying Hi Laura you look just like you did in High School.(that's good right?) All in all I really did have fun and the one thing that I took home from this weekend is the bond that we all still have as being Flying L's and all the things that we shared. Such as 4 years being a #1 Football team and many more. For me being away from home for 12 years and everything that I am dealing with now I needed to reconnect with my roots more that I realized. Our Flying L pride is still alive & kicking. They are already planning to have a 35th and are working on a scrapbook for everyone that is currant with pictures of our kids, spouses and things that are happening in our life now!
www.reunited.com did our whole reunion from A to Z Saturday I took a long drive down AIA to see how much things had changed and to reminice as well. I then went to see my Dad in Hallendale. His 75th birthday was last week. I got him the movie The Crew as a lot was filmed on N. Bch and at one of the hotels he was pool manager at. He still looks great and is up at the crack of dawn doing his routine. Sunday I went to West Palm and spent the night with my sis. Monday morn I helped her turn out the horses. I wanted to ride but it started to rain. The trip home seemed to take less time than it did going.
Well, I hope and pray that each of you truly have a wonderful Thanksgiving filled with those you love and cherish. To those of you who have lost a loved one this past year may the fond memories of them warm your heart and gently carry you through this Holiday.
Blessings and
Lots of Love & Hugs
Laura & Family

Wednesday, November 14, 2001 at 10:28 AM (CST)

Greetings All!
Yesterday we got some good news! 1). Her Anc went to 40 as she finally had some neutraphils show up. We also got a prelimanary report on the bone marrow biopsy. It has gone from 100% celluarity with 98% blast (leukemia cells) down to 5% celluarity with 8% of that being abnormal cells. Not perfect, but we'll take it. The plan is to do another biopsy next Tuesday and see which way the new cells are going. If they are going to the good then we have some time to wait and see if the 1 donor matches her that they have picked. If it is going to the bad... well they said they can have the 4/6 cord blood match here in 3 days and go right into transplant. I really hope it does not come out that way. This is all so scary.
I guess for now it is just a wait and see basis. Miguel is doing good. Kristin went to see him for a minute and said he has sores in his throat and some in his mouth. So he is at least drinking boost. They have him on a moraphine pump so he is not uncomfortable. They are now just waiting for some signs of engraftment.
We go back to OP clinic tomorrow just for counts. I will post again then as I hope that I will be Lauderdale bound right after on Friday. Take Care!
Hugs & Love!
Laura

Sunday, November 11, 2001 at 12:22 AM (CST)

Hi to All,
Sorry it has been awhile posting but I had problems getting out on the laptop in the hospital so I am still trying to catch up on mail and thank you's. I wish the hospitals had a dedicated line in each room just for moms. Yeah I know, dream on. After 16 days straight in the hospital, we are home. Still with no ANC! Yesterday we were told just before leaving by one of the fellows that Kristin DOES NOT have the Philadelphia + Chromosome that it is the 9th with its 22nd breakpoint. He said he looked in her file as he was trying to decide what tests to send for from the BMB he did earlier in the a.m. and there it was. He said the BMT team assumed and had no real explanation for the mistake. He then said there was no reason to give her anymore gleevec as he felt it would do no good as it targets a specific protein that is seen in PH+ patients. Yes I am upset that for 2 weeks our hearts & mind has been torn with the news that her prognosis was not good because of the PH+ and that she has been on a drug she really didn't need. That this mistake is the group that I am suppose to let pick a donor & do a transplant for my daughter to save her... With all that said, here I sit happy it isn't the worst and that someone had the God given sense to look in her big black book they call her chart. My puppet on a string feeling is fast taking hold and I don't like it one bit. Help!!!!
Each day is a milestone in your Childs progress whether good or bad. I went to a caregiver meeting Thursday (in Hosp.) the sponsor for the lunch was a rep from procrit. His first words were "Knowledge is Power". I had to chuckle as had any of the oncs been there they would have choked on the food while he was speaking. But he's right! Kristin & I met Miguel 23 & Connie (his mom) in the hospital. They are from Puerto Rico and he had a cord blood transplant on Friday. He & his mom are so sweet and Kristin enjoyed having someone close in age to talk with. For those close to home Kenny Robinson retired FHP from Lake City is also waiting to recive his BMT. He recognized me right away. He always has a big smile for everyone.
My reunion is this next weekend in Ft. Lauderdale and hopefully I will be able to attend. I am looking forward to seeing faces of the past. Most of the alumni were in school together for 12 years. Kristin has promised that she will try hard not to get any fevers so I won't have to rush back home. I hope & pray that we have some good news to report on tuesday... Until then have a wonderful Vetran's Day!

Hugs & Love
Laura
P.S. To my dear Friend Kathy....HAPPY BIRTHDAY TO YOU!!! on the 12th (I didn't forget)

Friday, October 26, 2001 at 06:17 PM (CDT)

Hi To All...
Not real good news to report. Dr. Gordon said Kristin's marrow is still packed with Leukemia. That is why when she bottomed out her good cells were not able to rebound. They say she has refractory Leukemia meaning the marrow did not respond to the chemo 2 weeks ago. They will be starting her on more chemo tonight etopiside, ara-c and a couple of others for 5 days. I guess if we see her counts rebound after that we will breathe a big sigh of relief. If not they have something else planned but I hope it doesn't get to that... then providing the marrow is back to good they will go right into BMT. We need some big gun prayers NOW!!! I am scared but have no choice but to stay strong for Kristin. We can do this... she can do this!!! We will be here for awhile now!
Love & Hugs
Laura

Friday, October 26, 2001 at 02:01 PM (CDT)

Hi to All!
Well guys it's back to HOTEL SHANDS as Wednesday night she spiked a fever of 102.1 we checked in at 11pm and are still being held captive. She is on IV antibiotics and they say until she has some white blood cells and neutraphils show she won't be going home. We haven't heard yet about the Bone Marrow Biopsy that they did yesterday. Hopefully it will come back clear. We have no news about anything that is planned in the future. At this point I am clueless. Next week maybe her Dr. will show and enlighten us. The walls are starting to close in so I will make todays post short. Big thank you to all who have signed her guest book. She sat down to day and read the new ones. Then I got in trouble for the pictures... Oh well at least it wasn't front page of the local news again. (Last Sept and boy did I catch
%#&&!!!) Hope all is well!
Hugs,
Laura

Tuesday, October 23, 2001 at 12:14 PM (CDT)

Hi to All!
Kristin is at home but isolated... Her Anc is 109 and can't leave the house. She is already starting to climb the walls. Tonight is homecoming for Richardson Middle and she wanted to see her girls perform. Plus one is of them, Allison is a prom queen nomminee. The good news is that last weekend's chemo knocked the heck out of the blasts as they are 0 in the blood. Thursday we go for another Biopsy to see if there is any leukemia in the marrow. Pray that it's clear. I spoke with one of the coordinators yesterday and they have 20 potential donors and 2 matches for cord but they are only 4 out of 6 match. We have to go tomorrow for a consult with Dr. Reddy. Hopefully he will be ready to answer the thousand questions that we have. LOL Anyway, Kristin recieved her package from her CHEMO ANGEL and was pleasently surprised. To those who have sent well wishes and signed her guest book... A big thank you as it really lifts her spirits to know so many have her in their thoughts. Well I will post more after our pow-wow with the doc.
Take Care
Hugs & Love,
Laura & Family
P.S. I up-loaded new pictures of last week in the hospital and our Light the Night Walk for Leukemia!

Thursday, October 18, 2001 at 03:03 PM (CDT)

Hi to All!
Well it was a very long and scary weekend. Sunday Kristin's blast had gone up to 39% and her platlets were still falling. That morning she was a little feverish but when I felt her legs they were on fire. I went to the nurses desk and told her that I thought she was spiking a fever. She told me that she had just checked and she was normal. So I had to give her a refresher course about how she can go from normal to 106.3 in 15 minutes and about the gram negative bacteria line infection she had 2 easters ago. She went and took her temp and it was 102. About 15 minutes later a team of Drs were in her room and asking ?'s then sent out for a bunch of cultures. They gave her something to bring down the fever. She was miserable to say the least until about 7pm. That night I couldn't sleep and they drew labs at 12am around 2am I was walking the halls & they said her labs were back. Her blasts were 5%!!! Thank you God! Monday at noon the Drs came in and said they were going to let her come home but that she would have to give herself GSF shots. Those are to bring up her white blood cells. Tue was a good day at home and she felt pretty good. Yesterday we went to clinic to get labs drawn and speak with a Onc. Her blasts were 0. They said that they will do a bone marrow biopsey on day 14 to see if the marrow is free of leukemia. If it is then they will proceed with a transplant. This can be anywhere from 4-6 weeks away. Right now they are looking at cord blood as well as an unrelated donor. There is so much that needs to be done between now & then it is mind bogeling. I don't know how we are going to get through this financially as I will not be able to work. I have already started to panic. Kristin is scared but wants to get it overwith. They said she will be in the hospital for 4-6 wks and then we will have to stay in hospital housing for 100 days past transplant. This is sooooo serious and I keep wishing it was a bad dream. Everyone around us are either in shock or denial or don't really understand how critical this procedure is. The thought of what she is going to go through scares the hell out of me. The what if's are really playing havoic on my mind and I can't sleep or eat either. We have to go back tomorrow for labs and hopefully they will be able to give me more positive thoughts and support. Well until then hope all is well with you & yours!
Love
Laura & Family

Saturday, October 13, 2001 at 01:01 PM (CDT)

Hi to All!
There is no easy way to say this except this, Kristin has relapsed! They admitted her yesterday and started her on a high dose of Chemo late last night. They did a bone marrow biopsey Thursday and at the same time drew her blood for a regular CBC. When the results came back it showed 20% blast. We are all devastated to say the least but very thankful that it was caught early. She has a better chance of regaining remmission by starting treatment so quick. They are talking about a transplant before Christmas. For now I just want to see 0 blasts on the next CBC and be more relieved. There will be alot of decisions made in the next few weeks to come and I will try to post daily if possible. They will be doing a donor search next week and depending on the results have more of an idea about the course of things to come. One of the residents came in yesterday and asked her if she would consent to a research study. They took 18 vials of blood. The reason is to generate antigen and dendritic cells to produce an anti-tumor or leukemic response toward Hematological malignancies. So in English they take the bad blood cells now test & keep them safe. Then when she is in remission take the good ones and try to teach the immune system to attack the bad cells. She said that's the reason why she relapsed so they could use her blood to find a cure. Don't I wish!
My best to all of you
Laura & Family

Saturday, October 06, 2001 at 08:33 AM (CDT)

Hi to All,
Sorry I haven't updated in a while but September has been a very busy crazy month! With everything that happened at the WTC September 11, our focus has been on the TV. Our hearts & prayers go out to all that have lost a loved one!
On the home front things have been hetic as Chuck is still trying to recoop from his accident and I am trying to keep up with his Dr. apointments & Kristin's too! We still haven't found a vehicle to replace my beloved purple truck. Kristin loves college and is very busy always. She has practice 3 times a week after school for the dance team and they perform 1 night a week at the fooball games. Next season will be basketball and then State competition.
We participated in the Light the Night walk in Gainesville. It was a beautiful night and very heartwarming. We carried a banner which had a few new stars on it. I should have the pictures up in a day or so. This week our town lost another to this horrible disease as Tuesday Troy Diamond lost his 4 year battle with CLL. He was 37 and has a young son. We had met him at the hospital last year and I spent many hours with his mom talking about Troy & Kristin and Leukemia. We were at the hosp. last week & asked about him & they told us he was doing great so this hit like a bombshell.
I feel numb to this and can't cry!
All our Love & Prayers to All,
Laura, Kristin & Family

Monday, August 27, 2001 at 08:51 AM (CDT)

Hi There,
First off let me give you the good news.... Kristin's tests have all come back NEGATIVE!!! That includes spinal fluid and the PCR which checks for minimal residual disease. We are truly blessed. Her last spinal infusion of Methotrexate will be in November. After that she will continue for 1 more year with the Vincristine every 3 months and the daily oral chemo.
The next news is on August 18th Kristin turned 21 and is now officially an adult. I find it hard to believe she is that old but maybe its because my mind won't accept the fact that I am getting old. Whats worse is her brother Jason was 23 on the 23rd. God where do the years go?
Kristin started college on the 20th and seems to love it. She has homework and she comes home and gets it done right away. Funny but before cancer it was a constant battle to get her to do it now she takes responsibility and is meticulous.
The last good news is that her little girls on the dance team she has been coaching went to camp the end of July. The won 1st place on their home routine that Kristin coreographed. She was so proud of them and I think of herself too. She looked at me with tears in her eyes and said "Mom can you believe it?" Yes, I can! I told her later that anything is possible with a little elbow grease and a lot of faith. She is starting to see a lot of things but most of all getting her self confidence back is the big one. This disease took a lot from her but she fought back. I am so proud of her and every small accomplishment. She now doesn't hesitate to tell her team that she has cancer and if she can do it they definatley can.
Last month was not a good month for her mentally as Mike Hunter in CA lost his battle with Leukemia. Kristin took his passing bad as the reality of this and how fast things can go bad really jolted her. He touched so many lives and was such an inspiration to all who knew him. He will be missed deeply. Then a local boy, Robert Garcia who was 18 and had the same type of Leukemia as Mike & Kristin also lost his fight the next week. He was from Branford and that has devistated the community. He was DX last November. All I was told was that his organs had shut down. He was treated at Shands BMT unit where Kristin is treated. That just compounded Kristin's fears. So when I say we are blessed I really mean we are so thankful for each day that goes by that we have our precious daughter.
Now I want to put in a request to any intrested parties that are local. We are participating again this year in the "Light the Night Walk" for Leukemia in Gainesville.
The team name is "Lake City Life Lighters" and I have team member info & envelopes. So if you would like to walk with us in September contact me. Or if you just want to make a contribution our address is above. Checks only please, made out to the Leukemia Lymphoma Society.
I wish all well till next time!
Laura & Family
P.S. I uploaded new pic's of Kristin & the Dance team. Check it out!

Saturday, July 14, 2001 at 05:06 PM (CDT)

Hi to All,
Hope that everyone had a good 4th of July with those close to your heart. Chuck, Kristin, Lauren and I went to see the fireworks and as usual they were beautiful.
Kristin had her 6mo bone marrow biopsey 2 weeks ago and so far all of the test have come back negative. We are waiting for the last which is a PCR. This tells if there is any residual Leukemia cells in the marrow and is a very sensitive test. She also had her 3rd Lumbar puncture & IV chemo the 10th. Everything went real good and just a few side effects. She will have the last LP in November then IV chemo every 3 months till November 2002. We will really be celebrating Thanksgiving next year. Mr. Walker from Panama City came to see us at the hosp. I had mentioned him in previous posts. He lost his lovely wife Rose in January but has wonderful grown children who keep him busy. He is such a sweet man and holds a special place in our hearts. It was really good to see him and hear about all that has been happening in his life.
Kristin will be starting college Aug 20th and is getting excited I think. We are so proud of her. She has just finished teaching the dance team the dance they will be performing at camp in Jax. the end of July. She had the LP done Tuesday afternoon and was at practice at 8am on Wed. Now thats dedication. She has gone out with Chad & his dad fishing in the gulf and caught a big sea trout. She still can't stay still and hates to be bored. I guess this is good... right? Well hope everyone is enjoying their summer.
Love to all,
Laura & family
P.S. Please say a prayer for Mike Hunter age 25 in CA. & his sister Vicki & their parents. Mike was diagnosed with same type of Leukemia as Kristin last year. He relapsed last fall, had a transplant (200 days +) they found out last week that the monster is back and a miracle is desperatly needed!!!

Sunday, April 01, 2001 at 05:07 PM (CDT)

Happy April Fool's Day!
Well a lot has gone on the last 45 days. Kristin has a Kia and her wings have now spread to 35mi to the gallon. I think she's happy... I know my purple truck is and it's owner. She and Sheri Dicks had tryouts for Richardsons Dance team. They now have a squad of 18 6, 7th & 8th grade girls. Kristin is looking forward to working with them and getting them ready for dance camp. She has decided to follow my footsteps and will be starting college in August for Cosmetology. Health wise she seems to be doing really good. She has to go to Gainesville on the 10th for a spinal, & IV chemo. She had a cbc done last week & everything was good except for her WBC had dropped from 4.2 to 2.7 This may just be a reaction to the daily oral chemo she takes. Hopefully her counts will not crash as we have been so very fortunate for quite a while. Chuck finally recieved his promotion to branch Manager and I am trying to rebuild my clientel at Shear Pleasure. Slow process and long hours, just takes time. Next weekend there is a Hair show in Savannah and all of us are going. Yeah! I missed the big one last year in Orlando so I'm really looking forward to this. Well I see from the the hits everyone is still checking in... Thank you so much for your continued prayers and support. Please take a minute to let Kristin know you were here as she checks the guestbook from time to time and if you could just see the smile she gets from reading it... well the picture is worth a thousand words!
May all that pass through this site continue to be blessed!
Love & Peace
Laura, Chuck, Kristin & Family

P.S. I was asked to be an Ambassador for the Leukemia Society for our area. My packet came Friday. I really hope I can do some good for our community & surrounding counties.

Tuesday, February 13, 2001 at 09:51 PM (CST)

"HAPPY VALENTINES DAY"
Sorry it's been awhile since an update but I didn't want to jump up & down too soon! So.... Kristin is officially in Maintanence. What that means is for the next year & a half she will be on oral chemo daily & every 3 months she will have the liquid in the spine & blood. She is handling the oral meds pretty good and her counts are stable. Her hair is back & getting thicker and to look at her now you can't tell she is even sick. We are blessed and thankfull that life for her is near normal. God, I never thought I would say that word again.... She is wanting to go to college for cosmetology now, we just have to figure out how to get her there. She is still working with the dance team & is gearing up for tryouts in March for a new team. I'm trying to get back in the swing of things at work & re-build my client base. My youngest daughter is testing the waters of pre-teenage & may never find out what that is. My best friend told me a long time ago that she was the child who would teach me the difference between SIC UM & Come Here! I 'm still hoping Kathy was wrong. I even went as far as to tell my precious little one that she really didn't want me to loose that bet... but I don't think she was paying attention. Probably was having a blonde moment or a brain freeze at the time anyway... Kristin is normal, Jason is in LOVE (YEAH), Lauren is in trouble, Chuck is ... well Chuck is Chuck, and me...I'm still unwinding!!! Peace & Love to All as Always!!
Laura & Family

Monday, January 01, 2001 at 09:38 PM (CST)

HAPPY NEW YEAR!!!
We are so very happy to see this new year start. With a lot of help from above we hope it will be a brighter, healthier and happier year than last. Christmas was good, as we were just thankfull to have the kids all at home together. Kristin had her Bone Marrow Biopsey friday and she didn't even remember it being done. They are doing about 4 different tests and we should have some of the results back by wednesday.
We will know then what her schedule will be reguarding maintenance. I am sure it will not be as tough as the last year was.
The last week for me has been one of mixed emotions. Elated that Mike Hunter in CA came home on day 18 after transplant (amazing) and he is doing great. Ashley Jacobs is still in the hosp. at Shands. We saw her Friday and as soon as some minor problems get better she will be in outpatient, YEAH! On the sad side which really got me down Jason Levine 18 in CA passed away suddenly the day after Christmas. He had ALL too and had relapsed back in Aug-Sept. He had fought so hard to beat this monster. Mr. Walker & his wife Rose left Shands Fri to go back home to Panama City. The doctors said there was nothing more they could do for her. They are such a sweet couple, it breaks my heart. I will truly miss his smile... but at least he will have her home. Now, there is a new kid on the block, newly diagnosed with ALL. Robert Garcia 18 from Branford. Lots of prayers guys for him to breeze through this. He responded to treatment quick like Kristin did and is now in outpatient at Shands with Kristin. My New Years Wish is this... That all those who have had to endure the pain of loosing a loved one may somehow this year find solace... and all those who are fighting the battle with cancer will reign victorious. May God continue to bless all those who have touched our hearts & mind! Also those whom we may have touched through this page.
Blessings & Love
Laura, Chuck & Family

Yesterday is History...Tomorrow is yet a Mystery.
Today is named the Present, as it is a gift from God

Sunday, December 17, 2000 at 10:41 PM (CST)

Merry Christmas & Happy Holidays To All,
The past month has been very good. Kristin has finished Consolidation IV and will be starting Maintenance on January 5th. What this means is she will be taking oral Chemo daily for a year and will have quarterly intrathecals of MTX and IV Vincristine with a week of predisone as well. This is something to celebrate. Yes I said celebrate as in she has made the 1st year without incedence. We are so thankful to have her home & for the most part healthy & happy. She is working with the dance team at Richardson Middle School & has choreographed their dance for State Competition in January. It will be at the Prime Osborn Convention Center in Jacksonville FL on the 18 & 19th. She is scheduled for a Bone Marrow Biopsey & Asperation the 29th of this month. The doctors are expecting to have a good result & we are praying as usual that they are right. I have asked for all of the tests including MRD & a Phenotyping again so we can be sure there is no residual leukemia cells lurking around.
As I sit here reflecting on this past year and how fast its gone by and how much our lives have been changed by this I can't help but think about how much we have learned. We have learned to enjoy each day fully, and bask in each glorious minute that passes. Because we have also learned that tomarrow may not come. We have experienced the grief of those parents we have become aquainted with that have lost their child & shared their pain. We have rejoiced with those that have ended treatment or celebrated meeting their donor 1 year post transplant. There are so many lives that we have been honored to know that it overwhelms my concious spirit. I want to thank each of you for your constant thoughts & prayers for Kristin. I truly believe she has had some very real, big guns, out there praying hard in her behalf. And I know some angels now... like Eric, Adam, Anthony, Mr. Harris & Marybeth, who I'm sure are watching over her. My prayers are for all those who are in transplant like Ashley Jacobs, Mike in CA., Those waiting for remmission & transplant, Jason in CA, Mrs. Walker(Panama City) and all those on BMT, PED ALL Lists (((Cyber Hugs))). And especially for the parents of 2 very special little angels Tyler & Arial that the holidays may somehow be blessful. I will never forget this year nor the lessons in life it has brought forth. Yet somewhere in the midst of all the insanity, my faith has been strengthened... Go Figure!
Peace, Blessings, Hope, & Love to all!
Laura, Chuck, Kristin, Jason & Lauren

Sunday, December 17, 2000 at 10:41 PM (CST)

Merry Christmas & Happy Holidays To All,
The past month has been very good. Kristin has finished Consolidation IV and will be starting Maintence on January 5th. What this means is she will be taking oral Chemo daily for a year and will have quarterly intrathecals of MTX and IV Vincristine with a week of predisone as well. This is something to celebrate. Yes I said celebrate as in she has made the 1st year without incedence. We are so thankful to have her home & for the most part healthy & happy. She is working with the dance team at Richardson & has choreographed their dance for State Competition in January. It will be at the Prime Osborn Convention Center in Jacksonville FL on the 18 & 19th. She is scheduled for a Bone Marrow Biopsey & Asperation the 29th of this month. The doctors are expecting to have a good result & we are praying as usual that they are right. I have asked for all of the tests including MRD & a Phenotyping again so we can be sure there is no residual leukemia cells lurking around.
As I sit here reflecting on this past year and how fast its gone by and how much our lives have been changed by this I can't help but think about how much we have learned. We have learned to enjoy each day fully, and bask in each glorious minute that passes. Because we have also learned that tomarrow may not come. We have experienced the grief of those parents we have become aquainted with that have lost their child & shared their pain. We have rejoiced with those that have ended treatment or celebrated meeting their donor 1 year post transplant. There are so many lives that we have been honored to know that it overwhelms my concious spirit. I want to thank each of you for your constant thoughts & prayers for Kristin. I truly believe she has had some very real, big guns, out there praying hard in her behalf. And I know some angels now... like Eric, Adam, Anthony, Mr. Harris & Marybeth, who I'm sure are watching over her. My prayers are for all those who are in transplant like Ashley Jacobs, Mike in CA., Those waiting for remmission & transplant, Jason in CA, Mrs. Walker(Panama City) and all those on BMT, PED ALL Lists (((Cyber Hugs))). And especially for the parents of 2 very special little angels Tyler & Arial that the holidays may somehow be blessful. I will never forget this year nor the lessons in life it has brought forth. Yet somewhere in the midst of all the insanity, my faith has been strengthened... Go Figure!
Peace, Blessings, Hope, & Love to all!
Laura, Chuck, Kristin, Jason & Lauren

Monday, November 06, 2000 at 09:25 PM (CST)

HeyThere,
Well Kristin has finished her ConsolidationIII treatment and will have a short break until the Monday after Thanksgiving. Her counts are still good but maybe having a slight bladder infection. The oncs are not sure yet exactly what is going on. She is trying to put together music to choreograph a dance for state Competition for Richardson Jr, High Dance Team. Her hair is growing back thank god. She & her sister went to the fair Sat. night and they had a really good time. Lauren entered her rabbits & all three won 1st, one won Best in Show mixed w/ a rosette another won a trophy for reserve Best in Show. We all were happy. We are hoping to maybe leave this weekend to see my father as he will be 74 . Kindof would like to suprise him. I am planning to go back to work after this last round of chemo at Sheer Pleasure at the Gateway Plaza. I am going to work that & a second job if we want to have any part of a christmas. The med bills just keep rolling in. I'm sure some of you have had the temptation to set you answering machine with this message " I'm sorry we are abroad indefinatly. Leave your name # and amount owed and when we get back from eternity you'll be first on our list to pay or shread. Thank you for callin & have a nice day" Come on guys just once didn't you have that itch!??? Just kidding I know I couldn't get past the suwannee without someone stopping me.
Well I've got some new names for you that have Kristin on your prayer list 1). Ashley - she will be starting to get a bone marrow transplant from her brother soon. Please pray that her body engrafts his healthy cells fast. She has ALL & AML and is 19 and lives in Ocala. 2)Jessica is 16 was diagnoised in July and has already recieved her transplant and is doing great. pray that her continued progress goes well in Hommasassa Springs She has AML. May God be merciful and help their families. So with that request I will close for now as I have an awfull lot of cleaning up to do!
Love as always & Peace to all who pass here!
Laura, Charles, and our gang!

Sunday, October 22, 2000 at 09:19 PM (CDT)

Hi to All,
This past month has been pretty calm, thank God. Kristin is still in Consolidation III which means for the last 4 weeks she has had Danarubicin (red kool-aid) once a week and really has had no side effects. This week she will get a heavy dose of Cytoxen on Tuesday and Thurs-Sun recieve ARA-C as well as an oral chemo called Metacapurin-6. Then she will have 3 days off and then 4 more days of ARA-C. This is pretty toxic so anyone that has her in there prayers, just ask that she get through this hump without any ill effects. We are so proud of her as she has been helping Sheri Dicks with the Richardson Middle School Dance Team. She really seems to enjoy the girls and them her. This has put life back in her and we are very thankful to Sheri for giving Kristin this opportunity to be active in something she loves so much as Dance. I am trying in the meantime to sortof get my ducks in a row so I can go back to work at least part time maybe before Christmas or we won't be having much of one at all. Then again we do have a lot to celebrate as we are all home and together and I guess when it comes down to the bottom, that is the richest gift anyone can have... family & together. I guess I had better close for now as this week will be really hectic. Blessings & Love to all!
Laura & Chuck

Thursday, September 21, 2000 at 12:40 AM (CDT)

Good Morning to All,
Tuesday night was fantastic! Kristin, Lauren & I went to Gainesville earlier in the day as Kristin had to have a muga. Which is where they inject some sort of dye into her heart to see how well it works. The tech told us after that as far as he could see she would be fine for starting this new round of chemo Monday. After we finished there we went upstairs to show Melinda the banner I made for the Team. Dr. Reddy was there and said Kristins counts were real good and that he didn't think he would order a Bone Biopsey till January. Yeah!! So, with all that good news we were off to Westside Park. We rolled in at 5:45 45min early. Can't remember when I've ever been that early to something (Ok, I can hear Kathy saying "Fess UP, When have you ever been on time?) Anyway, This was important! I am very proud to say that our team "Kristin's Lake City Life Lighters" raised $675.00 for the LIGHT THE NIGHT walk for Leukemia.The total raised that night was $19,100.00 Those from Lake City who walked were Patty O'Donnell (she is assistant to the City Mgr. Her niece was recently diagnosed with Hodgkins in Miami at age 19} Vicki London (she has a home for Handicap Kids) 2 of her special friends also walked with us,Joyce Adkisson(my neighbor & friend) her daughters Heather and Kaylen Brehm, Courtney, Jessica Gintz's Baby, Lauren, Kristin & Me! Diane Slanker & Marla Hingson also raised money but couldn't walk a the last min. Diane's daughter Michelle passed her Bar and was Sworn in late Tue & Chuck had a route come down at the last min. Hopefully I will have pictures uploaded for all to see soon. It was just like they said, breathtaking to see all those ballons blinking on & off beating just like a sea of hearts. A big thanks to all who contributed and a very warm hug to all that walked with Kristin & me. You made our Night but especially Kristin's as Joyce said it so well as she told Kristin after the walk. "We're here because we Love YOU!"
God Bless All,
Laura
P.S. Marylou, Love & hugs, Got your letter today, so sweet. Lauren is sending the money with what was collected from Shoney's that we haven's got yet to Jacksonville later this week so actually the total raised will be over $700.00 (Eric & Dennis were sitting on my shoulders, SMILING!!....

Saturday, September 16, 2000 at 07:00 AM (CDT)

Greetings to All!
This past month has been a blur... Kristin's last round of chemo has really done a number on her body as well as her spirit. 2 weeks ago her counts were fine then all of a sudden she was severely neutropenic with an ANC of 60. We had to isolate her at home from everyone. She of course was not happy with us ... but it kept her from having to be an in-patient. The doc was concerned that it might have been signs of a relapse but thinks now it was just her body responding to the chemo Her spirit is down as after three years has ended her relationship with her boyfriend. She said that her life has been put on hold and that it was not fair for him to have his put on hold too! Kids? A good part of this is pride because she feels she is ugly with no hair, chubby cheeks and 10lbs heavier. Oh Well, I hope if anything that this too will make her stronger. We all have had our heart broke at least once in our live.. Right?
So... on a brighter note this coming tue. the 19th Kristin & our family, and hopefully 15 others will join us in Gainesville for LIGHT THE NIGHT walk for LEUKEMIA. All the proceeds go to research, ect. I wrote a letter to the editor last Friday about wanting to put a team together from Lake City, I had only 2 calls but I have had the great fortune to meet both women. I will tell you all more after tuesday but let me just say now that they both are incredible. Lauren our 11 year old has raised $75 on her own just in our neighborhood. Our team name is "Kristin's Lake City Life Lighters" The say it is the most moving experience you will ever feel. Cancer survivor's carry a white ballon and those walking in memory or for somone carry a red that light up. It's like a sea of blood cells with with them blinking on & off like beating hearts. My purpose in this walk is multiple, First to give back as we are so blessed to have Kristin alive & 2nd I am walking in memory of Dennis Harris.(I wrote aboute him before.) Chuck is in memory of Eric Inman. I have other names for our team members and a story for them. Oh and for the record Lauren is walking for "HER SISTER" So if anyone is in Gainesville on Tuesday eve about 6:30 stop by and say Hi!!!
Kristin will be starting Consoladation III the following Monday which is a 42 day round of chemo UGH it is not real bad until the last two weeks which will require us to probably stay down there at RMDH. This will be finished up right before Thanksgiving so maybe we will be able to have a Family Dinner, unlike Easter this year. To all our Cyber friends a very big (((hug))) To all our friends & family & community, We love you all.
Laura
P.S Keep those prayers going! (Barbara, especially yours, they are working)

Friday, August 18, 2000 at 06:54 PM (CDT)

Hi to All,

Kristin is 20 today! I am reflecting this morning all the events that led to that joyful moment. The past twenty years of watching her grow up into the beautiful woman she is today. I am filled with emotions of all sorts. Thankful that she has handled this disease with grace and determination, to survive. Feeling truly blessed that our family is still intact (although worn around the edges a little). Grateful for old friends and new. I regret the ones I've lost from this that I still cherish. I have seen so much human suffering in the past 8 mo yet have learned more about life and the treasures it holds that most take for granted daily. (I was guilty of that as well) Sorrow wells inside for all the families of the beautiful people that I have met personally and those I have read about on the net, that have passed from our touch. Yet rejoice for them, That they will suffer no more. My Hope is, that this voyage of unknown will someday be one that 20 years from now I may reflect on with happiness. That the destination was worth the pain and anguish that engulfs the present. I feel my spirit is stronger and more intone with all around me and for that, I thank my daughter for that gift. She has given me so much to be thankful for and has opened many windows into my soul. I may have given her the gift of life, but she has given me the
Gift of Living!
"HAPPY BIRTHDAY KRISTIN"
I love you,
MOM
P.S. Kristin will be starting Consolidation II on Monday. She has had severe bone pain from this last round of chemo. Her hair has lost another fight to stay, but she still is beautiful, chubby cheeks and all!


I

Thursday, July 13, 2000 at 11:39 PM (CDT)

Greetings All!
Kristin had another bone marrow biopsey & asperation Wed. Things went pretty smooth as Chris Jackson PA did the procedure. She has had breast cancer and seems to have a lot of compassion for her patients as she too knows the pain of a BMB. Our meeting last week resulted in us deciding NOT to have radiation for many reasons. My thoughts are not just the present but the future as well. How cruel it would be if Kristin beats this monster but for years after would be always looking out for cateracts, neuro disfunction, or worse yet a brain tumor. At 19 having your life put on hold when you were just starting up the steps to adulthood is a major disappointment. Imagine 5yrs later being told OK, you are cured of Leukemia but you now have this. We have chose not to keep Kristin in a bubble. She truly believes that because she has been very active during treatment (fishing, camping, swiming, ect.) has helped her body fight the cancer and enhanced her spirit! As parents we are in total awe of her strength,
personal growth, and determination. We feel truly blessed to be a part of her.
This coming Monday she will start Consolidation (2 types of IV chemo) and Intrathecals (Chemo in the spine once a wk 4X). So.... please say a little prayer each night for her, that she will breeze through this phase as well. Well its late and I've a lot to do this weekend before Mon. so I'll close for now.
God bless & keep safe all!
Laura & the gang!

Tuesday, June 27, 2000 at 12:15 PM (CDT)

Hi There To All,
Kristin is to have a consult with Dr. Kaun now on July 5th. Dr. Marcus had a discussion with one of the other Doctors last week reguarding the radiation. So now they want us to talk with them again. I guess it will probably be another try to change our opinions about how important RT is. We still feel in our hearts that it is not the way to go. The chances of secondary tumors are high not to mention that if there was a relapse and they did a transplant she would absolutly have to have total body radiation. So we would rather take a chance on no RT and still have a safty net or alternative if she did relapse. Well July 4th makes 10 years that we have been a part of Lake City. We finally have something to celebrate. May all of you have very safe and *****HAPPY 4th of JULY*****Be back on the 5th to let you all know the outcome of the POW WOW!
Love to All,
Laura & the Gang

Wednesday, June 14, 2000 at 09:46 AM (CDT)

Hi to All,
Just a quick update on our consultation Monday with Dr. Marcus at the Cancer Center in Gainseville. With much apprehension our meeting went rather well. Chuck and I expressed our concerns reguarding Kristin recieving radiation and what effects it would have in the future. You see they are finding that besides secondary tumors arising there is also the risk of brain disentergration and neurological disfunction. St. Judes Hosp has stopped doing radiation unless the child is considered high risk for relapse. Well to our suprise Dr. Marcus agreed with us (we almost fell of the chair). He is in the process of getting in touch with some colleagues of his and discussing Kristin's case. He wants to get a general consences of their opinion on this issue before we go any farther. To say the least I was very impressed with him & Dr. Yea who is a resident. I know that this may mean taking her off protocal however, at this point I would rather be safe than sorry later. I also asked him about hyperfractionated radiation and if that was possible if the other doctors thought that it was necessary. He agreed again that it was a better route than standard radiation. For the first time since this nightmare happened I feel some peace. The thoughts of Kristin having some sort of brain problems or tumor later on was just something that couldn't be ignored. So... Tomarrow Maybe we will hear what the verdict is and I will post more then. I just thank God that finally someone has made us feel comfortable about our concerns and reafirmed that Its alright to QUESTION !!!
Peace to all w/lots of love,
Laura

Monday, June 05, 2000 at 05:50 PM (CDT)

Hi to All,
Well last Friday was the end of Kristin's last treatment of Intensification. She went through this past month pretty much eventfree,(Thank God). Unfortunatley a few people that she had become close to passed away this month. Mr Harris, who made the neatest Gator & Seminole birdhouses died 2 weeks ago on Sunday the morning we were leaving the hosp. He was so sweet to Kristin, and always was checking up on her when she was in-patient. When she had the infection he was in too & brought her vidio's and walked to her room every day to make sure she was OK. She said he reminded her of her Paw Paw. This last trip we found out that Mr. Hill was gone to. His mom moved from Alabama to help his wife take care of him. She was so sweet and Caring to all of the outpatients and always concerned about everyone and how they were. Bill Harrison & his family were in the room next to Kristin this time. Bill has caught up to her on treatment so now they will experience everything at the same time. The next phase will be Cranial Radiation. The guy from the cancer center called today and we have an appointment on the 12th for a consultation. He said they want to start on the 14th which will be everyday except Sat & Sun for 12 days UGH!!! Especially since that means we will have to stay at the Happy House again. Anyway Bill & Kristin both do not want to start until after the 4th of July. Can't blame them, as they know that they will lose hair, counts will go down, and they'll just feel crummie and not feel like having any fun on the 4th. Guess I'll just have to figure a way to convince the doc. that its better to wait. Yeah Right! Well if their counts were down they would have to wait... Oh well this to shall pass, just won't be very pleasant around the Bradford house if the docs win. Well hope this post finds all who read healthy and happy! Will write as soon as we find out what the schedule will be.
Love to All,
Laura

Monday, May 15, 2000 at 11:10 AM (CDT)

Hi to All!
Well we had a fully loaded past week. Kristin went into the Hospital on Wed at 8:am and had a new port line put in. This one is different as it is placed beneath the skin. You can't see it and she can wear open neck tops & go swimming when she's not in treatment. The surgery was about an hour and 1/2. Her nurse Royce said it took a little longer because the doc wanted to make sure there would be no scaring and took his time. That was nice! She then was taken to her room on the BMT unit. They started her high dose Methotrexate around 10:pm No side effects! Thurs Bill Harrison & his mom came down to visit. He is from Moultrie GA and has All too. He is 18 and will be Graduating this Fri. "Big Congrats to you Bill." He was diagnoised 2 weeks after Kristin. He started intensification Tue so he was telling Kristin what to expect this time. He caught up to her in treatment because of the infection she had. Everything went well except for her having an allergic reaction to the L-Asperginese Thurs. It is made from an E-Coli virus, anyway they had to give her a different form. Same thing happened to Bill. Well she got to go home Friday afternoon.
Sat we had a Birthday party for Lauren at Yogi Bear. It was fun and got to see a few friends we hadn't seen for awhile. Jason was the master cheif and I think he actually had fun too! I know he was a really big help. Kristin came for a little while and I actually got to get some pictures of all three kids. Things seemed normal for at least one day. The best pre- Mothers day present I could have had... Mothers Day was quiet and Chuck & I just enjoyed being home, messing in the garden, and talking.
Well tomarrow we go back to Shands for another three days. Hopefully her counts will stay up and we won't have any suprises. Until then will post later! OH HAPPY MOTHER'S DAY (late) to all who are Mommies. One Holiday I personally think should be celebrated quarterly (at least) What do you think guys?
LOL Always,
Laura

Thursday, May 04, 2000 at 05:27 PM (CDT)

Happy TGIAF(Almost Friday!)
Kristin is feeling 100% better. She finished the antibiotics Monday and we went to Shand's Tuesday. They removed the pic line and we talked to another Doctor as well. It was not a good session as they randomized her for long term Chemo. 2 and 1/2 years. She was really upset and I have that feeling in the pit of my stomach again. So many what if's and not very many questions answerd. If she relapses anywhere down the line, she's back to square one. All of her friends have gone, married or somewhere else and her life has been put on hold. Her spirits are a bit low but hopefully she'll bounce back soon. She is going to have to as they want to start intensification next Wed. Which means 3 days or more in the hospital with us probably back at Happy House till her count's come back up. This will be 4 wks w/3 hospital stays. Then another break and then cranial radiation. Just the thought of it makes me quiver.
Amber & Kevin left Tuesday for Ft. Sill, OK. They have a lot to do before Kevin starts work. Find a place to call home, unpack etc. I hope and pray her adjustment to all of it goes well. We all will miss her MEGA!!! Well guess I'll close for now as Chuck Lauren and I are going to the Spirit of the Suwannee Sat. Fl Times Union is one of the sponsers for the Hot Air Ballon Show and we have V.I.P. passes & Pilot Dinner tickets. Can't wait to go CHILL** Kristin & Chad are going fishing (thats her escape) just hope she catches a big ole Bass.
LOL to All,
Laura

Friday, April 28, 2000 at 07:10 AM (CDT)

Kristin came home from the hospital Wednesday after much confusion as to if she should stay close to the hospital or home. Home Health came at 10pm to show us how to give her IV antibiotics for the next 7 days. Thank God no more fevers! She & I both are drained physically & mentally. Today a friend of hers in clinic will be laid to rest in Fruitland Park. Eric Inman lost his long battle Mon night. His parents Marylou & Wesley are truly the most caring, strong & faithful christians and have been an inspiration to so many that have met them. She called yesterday to check on Kristin & send their love. Eric always had a smile for everyone and encouragement. We will truly miss him as will everyone else at shands.
Went to see Garret on Saturday, his Dad was with him and he looks so much better. He has put on weight that was needed. His dad said hopefully they will get to come home soon.
We have to go back Monday for more blood tests and then wait for Kristin to regain her strength and counts before anymore chemo. Amber will be leaving for Oklahoma with Kevin mon as well. I don't like even thinking about it as she will be missed deeply by Kristin. She told the HH nurse last night that her best friend was leaving town & everyone she has met at clinic is dead. She found out about a couple more when we came back last week. Then being there when it happened to Eric and dealing with her own close call, she is having problems sleeping. That is so not her as she could fall asleep anywhere even standing up! Hopefully this to shall pass.
Lauren's birthday is next Sunday May 7th so hopefully we can do something for her as she's been coping pretty good for a 10 yr old and I really need to see her smile for a while too! Jason should be home this weekend from the Army. I need to see him its been since February. How wonderful, all my kids under the same roof again! Never thought I would feel that way again.... you just never know, do ya?
LOL, Laura

Sunday, April 23, 2000 at 03:16 PM (CDT)

HAPPY EASTER TO ALL!
Kristin is back in the Hospital. She had a high fever Friday night. They said Saturday that was a gram-neg bacteria. Well Yesterday her fever went to 106.3 Delerious, violently shaking, and couldn't see anything but blurrs. Scared me to near death! She had another spike of 105.8 this morning and finally the doctor on call came in and said that the lab had called and said that her central port line to her heart was infected. They removed it this afternoon. Hopefully she will have a better night and maybe come home soon. She was supposedto start intensification Wed., however after this I'm not so sure. Guess its Easter Dinner at Wendy's in Shands. Keep ya posted till I drop!
Love & Peace to All!
Laura

Wednesday April 12, 2000 at 06:02 AM (CDT)

Our nightmare started on January 8, 2000. After 3 days at Lake City Medical with swollen lymph glands and low blood counts and us praying that she had mono (and that we all would get it too). Dr Samarra told us he had called an Oncologist at N. Regional, Dr. Cheong and that he was waiting for her. He gave me a hug and said he had done everything he could and for us to transport her NOW. The drive to Gainesville was the longest and hardest I have ever had. That was Sunday and she was checked in on the cancer ward (scary). The Dr. said he wanted to do a Bone Marrow Biopsey Mon. morn. Chuck was with her for the procedure. I just could'nt watch, never could stand to see her hurt. That afternoon Kristin was told you have Leukemia! The Dr. said "the type you have strikes hard, fast & can kill you. The good part is it can be cured." Then he told her "Today, your allowed to cry, get mad, hate the world but tomarrow you must put all of that aside. You will begin the fight of your life" I don't remember who all were there in her room although my husband said (Kathy, Dee Dee, Kristin's brother Jason & Amber) I just remember being numb and thinking of" Love Story". She recieved three pints of bood that evening. Tues. morning Chuck & I had a meeting with Dr. Cheong. He told us that he had called Dr. Wingard at Shands BMT unit and that he had agreed to accept her as his patient. He said that they could do more for her there than at a community hosp.
That afternoon we transported her to Shands on the 4th floor and brought into her room (what they call a clean room). The amount of people we saw in a few hours was amazing from a research nurse to coordinator, to a team of 4 Docs including hers. On Wed. they put in a heart port. Kristin calls them her tenicals. This is for them to take blood, give blood, medicine and CHEMO! That night she had her first bag of chemo at 10:30 which was the start of Phase I for 30 days. The following Tuesday just 7 days later they told us that they were going to release her and that I needed to learn how to flush her port and gave me a video (big thanks to Dylan Hunt for showing me it's not that hard to do). She was to go to the Ronald Mc Donald House on outpatient status so if we had an emergency we could be there fast(which we did) . That became our home for 2 months through Phase I & II of Induction therapy. Chuck was at home working & doing the MR. MOM thing for Lauren Kristins younger sister.(talk about role reversal) I can't say enough good about RMDH. It accomadates 30 families at one time. Everyone who has walked though those doors has a common bond, a child in a crisis.

We are home for a few weeks now but we have a date at the hosp on 4/26 for Kristin to start Intensification she will be in for 3 days recieving a heavy dose of 2 different types of chemo. Then we will probably be back at the Happy House if her counts come up. 3 days in-hosp. & 5 days out for the next month.
I would like to thank a few people to whom we are so fortunate to have as friends. Kathy & Darrell Hunt for being there when our world fell apart. Dee Dee Kristin's boss from Shoney's, Bill & Donna Lycan for having two ANGELS on your shoulders, Sandy Tice for taking care of things that were V.I.P. Skipper & Crystal Hair w/Ironwood Mobile Homes for havin the Blood Drive, Diane Slanker for all your time spent helping to offset expenses (our income was cut in half and our expenses have doubled) but most of all Amber Delatos (now Pruter, see picture)for being the best friend any girl could have. She was my rock & Kristin's comfort as she stayed with us for the whole 2 months and got a crash course in Nursing 101.
Kristin's road to recovery will be a long one as she will either have a Bone Marrow Transplant (30% die) or Two and a half years of Chemotherapy (40% relapse). Then God willing they will say she's cured. I also want to say that for a small town we are a part of the most caring, compasionate, and generous Community anyone could ever hope to call HOME! Big thanks to all who have called and visited and Please keep those Prayer Circles going strong for Kristin, Ilene Rogers, Garret Griffith, Mr. Terrell and Michael Boyer Banks. Will update soon!
Thank you for your Love & Prayers
Laura & Charles Bradford

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