JUNE 10TH 2006
THEY SAY MEMORIES ARE GOLDEN,
WELL MAYBE THAT IS TRUE.
I NEVER WANTED MEMORIES,
I ONLY WANTED YOU.
A MILLION TIMES I MISS YOU,
A MILLION TIMES I CRIED.
IF LOVE ALONE COULD HAVE SAVED YOU,
I PROMISE YOU WOULD NEVER HAVE DIED.
IN LIFE I LOVED YOU DEARLY,
IN DEATH I LOVE YOU STILL.
IN MY HEART YOU HOLD A PLACE NO ONE
WILL EVER FILL.
IF TEARS COULD BUILD A STAIRWAY AND
HEARTACHE MAKE A LANE, I'D WALK THE
PATH TO HEAVEN AND BRING YOU HOME AGAIN.
OUR FAMILY CHAIN IS BROKEN,
AND NOHING SEEMS THE SAME.
BUT AS GOD CALLS US ONE BY ONE,
THE CHAIN WILL LINK AGAIN....
"IN LOVING MEMORY" NOVEMBER 26TH 1990-MAY 19 2004
With all my love Mommy
Thursday, March 31, 2005 3:22 PM CST
FINGERPRINTS...
Lately I have been looking for little fingerprints of our beautiful little girl. When they are young and you do windows or TV screens you ask them not to touch the screens because you just cleaned them. But when they are gone all you want to see is the tiny fingerprints they leave behind. Under our table in the kitchen is crayon marks and marker marks of when Stephanie was little. In her room are still stickers that she pasted on the wall. In her closet still hang the clothes that she loved so much and in her drawers are the books she loved to read. These are just some of the things that she has left behind. But one of the things I really miss is her fingerprints. And her warm soft hand in mine. I also wish I could remember the long talks we had on our way to the hospital. I can't seem to remember anything that we used to do or the talks we used to have. Another thing is her laughter and her voice. I can't remember any of those things either.
William and I checked the garden today that he has taken over for his sister and there are signs of life springing forward. What a welcome sight to see my beautiful sons eyes light up. He is so proud of himself for doing this for his sister.
I want to thank everyone for their beautiful kind words they have wrote in Stephanie's guestbook. It is good to know that we don't have to walk this road alone. She also has another site called Stephaniesangels.org if you would like to go check it out.
Please say a prayer and light a candle for my friend Doug and his parents they are going though a very difficult time right now. www.caringbridge.org/il/dougiedoug
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
~'~Stephanie~'~ There is not a day that goes by that I don't think of you. I miss you more today than I did yesterday and I will miss you more tomorrow than I do today. I will see you soon angel, When God thinks the time is right. Please send us a rainbow or come to me in a dream.
With Love Always.....Mommy
Monday, March 28, 2005 6:43 AM CST
Sunday, March 6, 2005 8:08 AM CST
****************************************
On this day I return to this journal for a very special person in our lives, as Stephanie would want me to do.
Over the last several years of caring for and being the rock we all needed to sustain the battle our angel fought, many did not see the heartache, fear and determination it took to maintain the fight. But thru every step my wife never gave up and showed the courage of a parent that very few will ever know. Over the last 10 months the pain has been simply overbearing in our lives but again she has been the rock my son and I return to daily for encouragement. The last week has been very hard on her as she waits for a simple card that usually comes in the form of white paper, stickers, and pictures with markers and the words “I LOVE YOU, MOMMY". This year that card will not come, but please know that our angel is indeed blowing out a candle and making a wish that will come true one day. Also know that your love and affection always is noticed and without you we would have not been able to travel this road.
A VERY SPECAIL HAPPY BIRTHDAY, MY DEAREST WIFE.
All of our love Jeff, William, Your precious Angel....
Sunday, March 6, 2005 7:30 AM CST
When it rains it pours and opens doors
that flood the floors we thought would always
keep us safe and dry
And in the midst of sailing ships
we sink our lips into the ones we love
That have to say goodbye
And as I float along this ocean
I can feel you like a notion that won’t seem to let me go
Cause when I look to the sky
something tells me you’re here with me
And you make everything alright
And when I feel like I’m lost
something tells me you’re here with me
And I can always find my way when you are here
And every word I didn’t say
that caught up in some busy day
And every dance on the kitchen floor
we didn’t have before
Every sunset that we’ll miss
I’ll wrap them all up in a kiss
Pick you up in all of this when I sail away
While I float upon this ocean
I can feel you like a notion that I hope will never leave
Cause when I look to the sky
something tells me you’re here with me
And you make everything alright
When I feel like I’m lost
something tells me you’re here with me
And I can always find my way
Whether I'm up or down or in or out
or just plain overhead
Instead it just feels like it is impossible to fly
But with you I can spread my wings
to see me over everything
that life may send me when I am hoping it won’t pass me by
When I feel like there is no one
that will ever know me
there you are to show me
When I look to the sky
something tells me you’re here with me
You make everything alright
And when I feel like I’m lost
something tells me you’re here with me
And I can always find my way when you are here
When I look to the sky
something tells me you’re here with me
You make everything alright
And when I feel like I’m lost
something tells me you’re here with me
And I can always find my way when you are here
Tuesday, January 11, 2005 7:18 AM CST
IN ONE OF THE STARS IN THE NIGHT SKY, OUR LITTLE GIRL IS LIVING....
IN ONE OF THE STARS IN THE NIGHT SKY, OUR LITTLE GIRL IS LAUGHING...
ONE DAY LITTLE ANGEL WE WILL ALL BE TOGETHER AGAIN, AS A FAMILY FOR ALL ETERNITY...
NEVER TO BE PARTED AGAIN.
LOVE YOUR VERY PROUD... MOMMY, DADDY
AND LITTLE BROTHER WILLIAM
IN MY FATHER'S HOUSE ARE MANY ROOMS: IF IT WHERE NOT SO, I WOULD HAVE TOLD YOU.I IS GOING THERE TO PREPARE A PLACE FOR YOU.
Jan 14:2
She was so small,
so beautiful,
so full of hope and promise.
What a blessing she has been
to all of us who knew her
those few short years.
She taught us to love,
to hope beyond expectation,
to trust in that which is unseen.
She drew us together
in our anxiety,
our moments of despairing and hopelessness,
as well as in our joys and delight,
and in her every breath.
Her life ended prematurely,
Too soon she died.
We wept,
The tears continue.
We hugged
and held one another.
The pain will always linger.
Our hearts emptier
for her absence
and the unfulfilled dreams
she promised.
But the love she brought
into our lives will live forever.
Thank you for giving her to us.
Thank you for the blessing
that she will always be.
Thank you for the love we
would never have known,
but for her
and her brief days with us.
Thank you for Stephanie.
Our blessed child of grace.
In your heavenly name
Amen.
Jeff and Susan Ott: Proud earthly mommy and daddy of little Stephanie
Sunday, December 12, 2004 11:40 PM CST
IN ONE OF THE STARS IN THE NIGHT SKY, OUR LITTLE GIRL IS LIVING....
IN ONE OF THE STARS IN THE NIGHT SKY, OUR LITTLE GIRL IS LAUGHING...
ONE DAY LITTLE ANGEL WE WILL ALL BE TOGETHER AGAIN, AS A FAMILY FOR ALL ETERNITY...
NEVER TO BE PARTED AGAIN.
LOVE YOUR VERY PROUD... MOMMY, DADDY
AND LITTLE BROTHER WILLIAM
She was so small,
so beautiful,
so full of hope and promise.
What a blessing she has been
to all of us who knew her
those few short years.
She taught us to love,
to hope beyond expectation,
to trust in that which is unseen.
She drew us together
in our anxiety,
our moments of despairing and hopelessness,
as well as in our joys and delight,
and in her every breath.
Her life ended prematurely,
Too soon she died.
We wept,
The tears continue.
We hugged
and held one another.
The pain will always linger.
Our hearts emptier
for her absence
and the unfulfilled dreams
she promised.
But the love she brought
into our lives will live forever.
Thank you for giving her to us.
Thank you for the blessing
that she will always be.
Thank you for the love we
would never have known,
but for her
and her brief days with us.
Thank you for Stephanie.
Our blessed child of grace.
In your heavenly name
Amen.
Jeff and Susan Ott: Proud earthly mommy and daddy of little Stephanie
To My Family & Friends,
I see the countless Christmas trees
around the world below
With tiny lights, like Heaven's stars,
reflecting on the snow.
I hear the many Christmas songs
that people hold so dear
But the sounds of music can't compare
with the Christmas choir up here.
I know how much you miss me,
I see the pain inside your heart.
But I am not so far away,
We really aren't apart.
I've sent you each a special gift,
from my heavenly home above.
I sent you each a memory
of my undying love.
Please love and keep each other,
as my Father said to do.
For I can't count the blessing or love
he has for each of you.
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~
Please say a prayer for our family during this very difficult time in our lives. We miss our little girl more and more every day.
Little Stephanie,
We miss you and Love you very much, you are our hero.
Mommy, Daddy and Brother William
Sunday, December 12, 2004 11:40 PM CST
The sight is so spectacular,
please wipe away the tear
For I am spending Christmas with
Jesus Christ this year.
I have no words to tell you,
the joy their voices bring,
For it is beyond description,
to hear the angels sing.
So be happy for me, dear ones,
You know I hold you near.
And be glad I'm spending Christmas
with Jesus Christ this year.
After all, love is a gift more precious
than pure gold.
It was always more important
in the stories Jesus told.
So have a Merry Christmas and
wipe away that tear.
Remember, I'm spending Christmas
with Jesus Christ this year.
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~
Please say a prayer for our family during this very difficult time in our lives. We miss our little girl more and more every day.
Little Stephanie,
We miss you and Love you very much, you are our hero.
Mommy, Daddy and Brother William
Friday, July 23, 2004 6:41 AM CDT
Little Angel Stephanie,
Your Daddy, Brother and I miss and love you very much.
Saturday, June 12, 2004 7:03 PM CDT
ALL BUT ONE
As the days go by and the earth awakens with the birds singing, the sun rising and the children playing, all but one.
One who had many hopes, many dreams? One who had a spirit of love for animals, one who could only find the beauty in everyone she had met.
One who would always put her needs aside to help another, one who was always there to brighten a rainy day with love and a smile?
One who never gave up her beliefs in a miracle, one who grew in her will to have courage.
One who taught grown man compassion, one who showed what determination for life could be held in such a frail body.
One who always made sure that you knew you were appreciated, one who wanted so little but gave so much.
Only now this one knows the beauty of all life, this one knows the meaning of peace, for this one has left with her angel.
As the days go by and the earth awakens with the birds singing, the sun rising and the children playing, all but one.
Friday, May 21, 2004 4:12 PM CDT
OUR LITTLE GIRL RETURNS HOME TONIGHT FROM WISCONSIN, SHE WILL BE COMING HOME TO THE GREEN GRASS AND THE MOUNTAINS SHE SO DEARLY LOVED. HER COURAGE,HOPE AND FAITH TOUCHED MANY LIVES AND DEFINED THE MEANING OF DETERMINATION. STEPHANIE NEVER GAVE UP HER STRONG WILL TO SURVIVE, AGAINST OVERWHELMING ODDS SHE CONTINUED TO BELIEVE IN AND ACHIEVE THE IMPOSSIBLE. ON THE LAST MORNING, HER FINAL WORDS SPOKEN WERE “THERE IS A LITTLE GIRL IN BED WITH ME;" WE NOW UNDERSTAND WHAT SHE MEANT. THE LORD HAD SENT AN ANGEL TO GIVE HER THE WINGS SHE SO MUCH HAD EARNED. WE WISH TO EXPRESS OUR DEEPEST APPRECIATION TO EVERYONE WHO HAS INSPIRED AND HAVE GIVEN SO MUCH THROUGHOUT HER BATTLE, FOR SHE HAS FINALLY WON THE MOST IMPORTANT FIGHT. AS THIS WILL BE THE FINAL POSTING TO THIS WEBSITE, MY WIFE AND I WOULD LIKE TO THANK ALL OF THE HEALTHCARE PERSONELL FROM PINEVILLE CHILDRENS CLINIC, RELIEGH GENERAL HOSPITAL OUTPATIENT SURGERY NURSES, THE NURSES FROM WVU HOSPITAL, THE HOT UNIT NURSES FROM CHILDRENS, WITH SPECAIL THANKS TO KAREN,JODY,BETSY,NAOMI,CINDY,JEANETTE. TO DR. FRANK KELLER AND DR. DAVID MARGOLIS: STEPHANIE LOVED BOTH OF YOU VERY MUCH. YOU BRIGHTNED HER LIFE AND THAT MEANT THE WORLD TO STEPHANIE. DO NOT BE DISCOURAGED; KEEP HELPING CHILDREN TO LIVE LONGER LIVES THAT IS WHAT STEPH WOULD HAVE WANTED. MAY GOD TOUCH EACH OF YOUR LIVES AS YOU HAVE TOUCHED OUR FAMILY BY YOUR INSPIRATION AND PRAYERS?
THE FUNERAL WILL BE MONDAY AT THE DAVIS FUNERAL HOME IN CLARKSBURG WV AT 11 AM, AND THE VIEWING WILL BE SUNDAY FROM 2-4, 4-6 PM. THE NUMBER IS 304-624-6344.
PLEASE CONTRIBUTE IN LIEU OF FLOWERS IN MEMORY OF STEPHANIE, TO THE MAKE-A-WISH FOUNDATION OF SOUTHERN WEST VIRGINIA, OR THE RONALD MCDONALD HOUSE CHARITIES. THESE ARE TWO REMARKABLE FOUNDATIONS THAT MAKE A DIFFERENCE
Thursday, May 20, 2004 7:10 AM CDT
Wednesday, May 19, 2004 9:07 AM CDT
Dear family and friends,
Stephanie this am is being intubated and put on a ventilator, she became in severe raspatory arrest and had an incident last night again where her heart rate dropped.
She will receive the stem cell boost tonight. Please continue to pray for her, she is again fighting this day for her life. thank you
Tuesday, May 18, 2004 4:57 AM CDT
Dear family and friends,
Stephanie continues to struggle thru this difficult time, there now are many issues involved as each day passes. She is maintaining decent breathing with the help of the bi-pap machine, but her lungs look the same on the x-rays. We are not sure yet if the steroids are working or if they just have got a lot of fluid of her lungs and that is helping her. Her liver and kidneys are also not very well; they had to compromise these organs to help her lungs. After almost two years of watching her counts go down and then after the transplant come back to normal, they are again down to where she started. Her doctor will give Steph the stem cells to her tomorrow, and he believes they will come back. We ask for your continued prayers as Stephanie begins to look very tired but still is fighting. Our thanks to family, friends and the staff at children’s for the support given to this family.
Sunday, May 16, 2004 5:11 PM CDT
Dear family and friends,
This morning we made the decision with her doctor to start steroids to try to help clear Stephanie’s lungs, if this works she should start to get better soon, if it doesn’t the infection will grow and there is little left to do. The risks were that they are worried she will not make it thru the next 48hrs with her breathing so distressed; the other options was to intibate her collect tissue and then treat whatever is in her lungs. However if this was done there was a risk she would never be able to get off the ventilator. So with the advice of several good physicians and Dr. Margolis we have made this choice. Stephanie at this point is requiring more oxygen but is holding her own. We remain determined and will not give up hope, the icu team will do everything possible to revive her and she will be given every chance to beat this, until she is ready to quit. Please continue this fight and believe in Stephanie. Thank you
Saturday, May 15, 2004 6:17 AM CDT
Dear family and friends,
This am Stephanie is again in intensive care, last night her heart rate dropped and her breathing caused them to call a code to her room. She was moved to insure she gets the lifesaving measures needed if this happens again. She is breathing easier and more relaxed. The goal remains the same and she again showed her ability to fight and overcome the odds. We still remain strong with your support and prayers, for all who continue the fight with her we are thankful.
Friday, May 14, 2004 3:57 PM CDT
Dear family and friends,
Today Stephanie is trying to regain the positive ground she held, she fell back a little last night and her lungs became worse. They are being very aggressive with the ventilator and other medications. She has fought very hard to stay out of intensive care today, and that is very good for her to be in the hot unit with her primary nurses she knows and loves. Also she knows it is easier to get her way with (MR. Margolis) AKA her doctor. Please do not misunderstand yesterdays posting, DR.Margolis continues to fulfill the promise that he made in december, and you could not find a more dedicated person to help your child. The viral load of the adenovirus was down but we are not putting much faith in this test. For now she remains strong and we remain strong with your prayers and support.
Thursday, May 13, 2004 4:59 AM CDT
Dear family and friends,
Stephanie has returned to her room in the transplant unit. She still is using the ventilator thru the night and a small amount in the daytime. The adenovirus is still rising in levels after the cidofovir Friday night but clinically she looks better. Her doctor remains optimistic and reminds us that he does not treat numbers but the individual patient. After speaking with him, he pointed out several good issues that Stephanie has, 1) her bladder is getting better 2) the adenovirus has not landed in her liver 3) her lungs are improving slightly. At this point the two main issues are the pneumonia and depression, but the depression issue is one that i will disagree to the severity they believe she has. Recently their palliative care team also again became involved but caused more harm than help, i guess in some cases they are good but not when they say we have false hope of Stephanie surviving this, prayer and faith in the lord is not false hope, over 16,000 hits on this website and the faith of everyone who prays daily for Stephanie is indeed the hope we need. This little girl has fought harder and felt more pain in the last year than the dr. from the palliative care team will ever know, so yes he has struck a bad nerve in telling us we had false hope. So Dr. Margolis will give Stephanie a stem cell boost next Tuesday, and we remain in trusting his decisions and his positive outlook for our daughter. We will remain strong thru your prayers and support for this family, for this we are grateful.
Tuesday, May 11, 2004 8:00 AM CDT
Dear family and friends,
Stephanie continues her fight and seems to once again beating the odds. She has been much better the last 36 hrs and still no sign of a fever and also she is more alert. We do not know the viral load count as of yet after the cidofovir Friday night, but her lungs look a slight bit better and she is off the ventilator more often and breathing well. For now we cherish these blessings and remain cautious about getting excited, she has been ahead before but always kicked back a few steps. We pray now she will be given the chance to have some good improvement. Our continued thanks to all who support this family.
Sunday, May 9, 2004 10:01 AM CDT
Good morning,
Stephanie remains about the same and her treatment in the intensive care is continuing. She was more alert yesterday and started drinking some water on her own. We are hoping today she progresses more with this pattern. She also is doing well when taken off the ventilator for a few hours at a time. She still faces some incredible odds to overcome this virus, but the virus also faces incredible odds to beat her, she remains determined to win this fight. We wish a blessed mother’s day to our family and friends who continue to support this family and this child. And to a very special mother who has been with her daughter for the last 5 months and torn apart from her son in this battle to bring her daughter home, you are very special to us. Thank you and God bless.
Friday, May 7, 2004 3:40 PM CDT
Dear family and friends,
Once again the battle has confronted us with another blow, but we are remaining strong and Stephanie continues the fight. The viral load has gone to almost 2 million so she will be given a combination of cidofovir and ribavirin to help her beat this virus. Her lungs remain the same but no fevers so far. She is off the ventilator about 3-6 hours a day and doing well while she is off. Dr. Margolis plans to give her a boost of stem cells on the 18th of may to increase platelets and neutrophils. We have no doubt she will walk out of this hospital, and we will not concede to any other outcome. Our continued thanks and blessings to everyone for your support and inspiration.
Thursday, May 6, 2004 11:04 PM CDT
Dear family and friends,
Today stephanie has progressed slightly in a positive direction, although the x-ray showed no improvement it also showed her lungs were not worse. She was off the ventilator a short while and did very well. She also was awake about 2hrs and was watching some tv and looking around. She still is not very coherent but at times knows who and what is going on. She asked one question today to Dr. Margolis and that was when she could go back to her room. So far she has not spiked any fevers in the last 36hrs. She is still in a dangerous situation but we will take these blessings and build on them as each day passes. Her worst time is at night when she receives all of her medications and transfusions, her little body fights so hard and it is difficult to watch her struggle. All together today has brought hope for us and Stephanie is slowly making another push towards winning another battle. I thank everyone who continued support, this fight we will win. We thank the lord each day for his blessings and for each one who has never gave up on our little girl.
Wednesday, May 5, 2004 6:58 PM CDT
Dear family and friends,
Tonight we are watching Stephanie’s temperature very close and hope it does not increase, the plan is to see if the antibiotics will work she has been given over the last 24hrs. If she spikes a fever we have given Dr. Margolis our trust to perform any measure he needs to do to give Stephanie the fighting chance she deserves. It sometimes is very hard to watch your child in such pain that you want them to just be in peace, but she has fought so hard and so long and she is not ready to give up. This gets very complicated, some of the drugs are hurting her kidneys and liver but they must be given to save her lungs. Also tonight her adenoviral load has gone up to 200,000 so now again he is working on a different dose and time schedule. There is no doubt that Dr. Margolis with the lords help and Stephanie’s will to live, can beat these tremendous odds placed against them. We remain strong with family, friends and the inspiration of all who support our family. Now the most important fight for our little girl has begun we will not back down and we will never quit. Please believe in and pray for Stephanie. Thank you and God bless each of you.
Tuesday, May 4, 2004 11:10 PM CDT
Dear family and friends,
Tonight Stephanie is back in intensive care and not well. She again is on a ventilator. The ct scan results showed a progression of the infection in her lungs. The problem is that her doctor feels it is another infection on top of the adenovirus and without a biopsy he can only try different types of antibiotics. The risk of a biopsy would be she would not likely survive the surgery. We will pray that the antibiotics he chooses will work. At this point Stephanie is still fighting, and we pray that the lord will give her the comfort she needs. God bless and thank you.
Tuesday, May 4, 2004 8:08 AM CDT
Dear family and friends,
For the last few days Stephanie is still fighting and holding her own. She is in a lot of pain and still requiring oxygen to maintain her breathing. She continues to receive the ribavirin and as of this morning it seems to be working as the count has dropped to 140,000. Stephanie still being transfused platelets and blood, IVIG, and another infusion of cidofovir this weekend. They are still investigating the possibility of transfusing t-cells. We continue to thank everyone for the support for our family. God bless
Sunday, May 2, 2004 6:34 PM CDT
Dear family and friends,
Today the medical team mostly trying to get Stephanie’s pain under control today. She now is sleeping peacefully. She continues her fight and we await the results to see if the antibiotic will work. We believe this will be the most difficult times ahead since she started her battle and we ask for your prayers in the coming days. We would like to thank the Wells family for bringing us a wonderful dinner to her room, it was very welcome and we are grateful. Thier daughter Kailee is desperately seeking a donor for a transplant; her site link is on this website. As our little girl fights, we thank everyone for all you have done for this family.
Saturday, May 1, 2004 9:44 PM CDT
Dear family and friends,
Today Stephanie still not very well. They did a ct scan of her chest and an ultrasound of her liver and kidneys. The ct scan of her chest showed her lungs were a little worse than before but her kidneys and liver remained about the same. She is requiring more oxygen to maintain her breathing as of this morning. She however continues her fight and remains very strong and the courage she has is remarkable. Our gratitude and thanks for the continued support and prayers for our little girl.
Friday, April 30, 2004 12:47 AM CDT
Dear family and friends,
Stephanie is back in her room on the hot unit and doing somewhat better. She was taken off the breathing machine last night, but still is requiring oxygen to breath. The first dose of the ribavirin was given yesterday so we will wait to see the results. Her kidneys have been a little damaged by the cidofovir so they will stop it for now. So the plan for now is to continue the ribavirin, they have done a workup on myself to extract stem cells and give a boost to Stephanie next week. Dr. Margolis also is working on a plan to reintroduce t-cells to help fight the virus, but this is a very fine line between the risks and possible benefits. But at this point Stephanie has made good progress from wednesday night. We will deal with her issues hour to hour. We thank everyone for the continue support and prayers as again our little girl keeps fighting. God bless.
Wednesday, April 28, 2004 9:00 PM CDT
Dear family and friends,
Stephanie has been moved to pediatric intensive care, her adenovirus level is at 2 million and Dr. Margolis suspects it is in her lungs. She is currently intubated and on a breathing machine. He will try another antibiotic in the morning that was released for emergency use today, also he has another plan to attack this situation but we must wait for the liver biopsy done this evening. Our little needs all the prayers and hope everyone can send her tonight. We will continue to fight this one day at a time and try to update everyone soon. We thank you and God bless.
Tuesday, April 27, 2004 8:42 PM CDT
Stephanie’s day started out bad but it ended pretty good. First thing this morning she threw up the NJ Tube that they placed yesterday and she is going to have to have it placed again in the morning plus she is going to have to have a bone marrow aspirate too. I believe they changed their mind about doing a liver biopsy.
This afternoon Stephanie went to the Ronald McDonald House and enjoyed some time out of the hospital and we enjoyed the day together. She had to have oxygen because her numbers have been dropping but that didn’t stop us from having fun. We played and laughed and it was just like old times.
God Bless all who continue to pray for her, she is getting better one day at a time.
Monday, April 26, 2004 9:22 PM CDT
What a wonderful day today was for Stephanie. She was in very good spirits today.
This morning they had to replace the NJ tube and she was a little worried about that but as always the nurses where really good and assured her that everything would be okay.
Her Bilirubin is up a little and they want to do a biopsy this Wednesday to make sure there is nothing going on that they are missing. She is taking Probenecid to help protect her kidneys because of the Cidofovir and the probenecid makes the bilirubin go up but to be on the safe side they want to rule out all the other things.
She talked to her Daddy on the phone and to her brother in Pittsburgh. She told William to be good and soon she would be home and able to play with him again. She told me tonight that she is sick of being sick. I can’t blame her; she has been in the hospital since the end of November. I am going to go now and God Bless all who continue to pray for our little girl
Sunday, April 25, 2004 2:48 PM CDT
I am sorry about the delay a lot has happened over the last couple of days and we have not had time to update this page. Stephanie is doing okay. For the last couple of days she has not wanted to go over to the Ronald McDonald house because she has felt really sick to her stomach. She did have a good time when she was over there though, playing bowling in the game room and watching some TV in the room upstairs.
Yesterday she said she did not feel like going to the house because her stomach hurt her to much and the same thing today. I think a lot has to do with the virus she has, the vomiting and the fevers. They continue to do a wonderful job here with her.
She talks often of coming home and seeing her friends and family and once again being able to do the things she enjoyed doing like going on trips with her Grandma Linda and Grandpa Clay. She also says she wants to just be able to go into her OWN room and just be left alone and not have to hear the beeping of the machines and the doors opening and closing all night long.
She will once again get the medicine for the virus today. The tube that goes into her intestine came out a little and they had to take her downstairs and put it back in.
I wanted to thank everyone for their continued support of our little girl. God Bless
Wednesday, April 21, 2004 4:45 PM CDT
Dear family and friends,
Sorry for the delay to update the website, there are a lot of things to sort out in the last few days.
Stephanie is still doing pretty good and has been out on a pass about everyday at the Ronald McDonald house for several hours. They are treating her still with the cidofovir for the adenovirus, IVIG to also fight infections and various other medications. She now is receiving platelets three times daily, but all other counts remain steady. She is having problems with her liver and kidneys so several tests have been done to try to determine what the cause is. She also is having some high fevers and still having stomach pain daily. At this point i have instructed the medical team to stop the growth hormone study; she started to have a small rash on her hands and feet last night and also until we know something about the other issues. The adenovirus level was down to 10,000 but has gone up to around 56,000 today. We continue to deal with this one day at a time and give thanks to everyone who continues this fight with Stephanie.
Sunday, April 18, 2004 7:00 PM CDT
Dear family and friends,
Stephanie received the antibiotic last night and is doing well today, her kidneys still looking fine. She again went over to the Ronald McDonald house and spent the afternoon. She is slowly getting back to talking and wanting to just get better, she knew it was a long road and difficult times but when it is finally over it will have been well worth the fight.
I would like for everyone who continues to support this family to know how much it is appreciated. We would not have it made this far without such kindness. It is an inspiration to have so many care so much for our little girl. A special thanks to my coworkers who make it possible thru their continued giving, both in donations and time, so i may be with my family as much as possible. Also, i would like to thank the Turkey Creek Baptist Church in Pineville for their generous donation to our daughter. May the lord bless each of you in his own special way?
Saturday, April 17, 2004 10:13 PM CDT
Dear family and friends,
Stephanie is doing a little better, she has went out of the hospital the last few days. She took a small trip to the mall with Dr. Margolis and his daughter and she really enjoyed doing that, and today she went over to the Ronald McDonald house for a short while and didn’t want to go back over to the hospital, but we will see about getting her out as soon as possible. Her spirits are picking up some now that she has been out a few times, she continues to read and be inspired by all the emails, cards and the prayers for her. Medically she is doing well and her kidneys are still fine and her counts are steady. The virus level has dropped to 20,000 and she is due for another treatment tonight. The medical team still continues to do an outstanding job with Stephanie as she is fighting to recover and head for home. Thank you and God bless.
Thursday, April 15, 2004 9:41 PM CDT
Dear family and friends,
We received the results back wednesday from the level of the virus and it has went down from Saturday. The level was about 187,000 and after she was given a large dose of the antibiotic it has dropped to around 44,000 and her kidneys are looking good so far. She will receive another dose Saturday and hopes are that they can suppress this virus enough without affecting her kidneys until she can start producing her own t-cells back to kill it. Stephanie was also started on the growth hormone wednesday so we pray that this will help her too. She still is on a good deal of pain medication and is being fed thru the ng tube in her nose. Her counts are doing great and remain steady. So medically everything is looking good at this point, but Stephanie is having a very hard time coping with all that continues to stand in her way to recovery from this. She has fought so hard and so long that it seems every step forward she gets kicked back two, it is taking its toll on her. Everyone who has supported this family in prayer, donations, or just being there to help we are forever grateful.
Monday, April 12, 2004 9:13 AM CDT
Dear family and friends,
Over the weekend Stephanie felt pretty good, she was up some but still dealing with the pain associated with the virus. We will have a result back today from Friday after the small dose given to her and then one back Wednesday after she was given a large dose to hopefully get this virus back in control. Her kidneys as of today are still doing fine; this is a true blessing and great news. Her counts remain steady, still being transfused platelets and blood but she is producing these on her own but they are doing what they are supposed to do and are fighting the infection. We had a good easter as we were all together, we a good meal at the Ronald McDonald house as they had a chef over to cook for everyone. It was not home, but it was very nice of these people to donate their time to make sure everyone could enjoy a good meal on easter. Also yesterday I gave my permission to Dr. Margolis to proceed with the growth hormone study when he has this virus under control. We have entrusted this team with her care since december and we are not going to do any second guessing now, but give Stephanie every chance possible to recover quickly. We are grateful for the support and continued prayers for our family. Thank you and god bless.
Saturday, April 10, 2004 1:02 PM CDT
Dear family and friends,
Again today we face another fear with our daughter and her road to recovery. The adenovirus has yet again multiplied and the level has gone up, therefore her doctor has no alternative to give her the full dose of the cidofovir to try to stop the virus. Trends show that the higher the level a much better chance to effect one of her vital organs. The chance we take is it could cause kidney failure, but she could be supported if this would happen, however if the virus would attack a vital organ she could not. Stephanie today had a ng tube placed in her nose to push medications that she could not keep down, but she still is in good spirits and sitting up watching tv. We continue to have faith that the lord will guide her to a long awaited recovery. We thank everyone who continues to support our family and everyone at children’s hospital who cares for her daily. May the lord bless you and may you have a wonderful easter.
Friday, April 9, 2004 4:31 PM CDT
Dear family and friends,
Stephanie is doing a lot better the past few days, she has been getting up around 10am and staying up most of the day. She is still weak from the past weekend but has made good progress. Her counts are staying steady and so far her kidneys, liver and lungs are looking still healthy. They will monitor her level of the virus against the amount of the antibiotic given to her yesterday. They want to ensure the medicine does not affect her again the same way. She seems to be in good spirits, although her friend Nellie came to see her but could not come in the room. She went to the zoo with Stephanie and always is such a beautiful site to see her doing so well. God bless and thank you.
Wednesday, April 7, 2004 8:20 PM CDT
Dear family and friends,
Stephanie doing a little better today, more reactive and even a trip outside for a few hours to enjoy the weather here, sunny and in the 60's. Her kidneys, liver and lungs still are looking pretty good. The test results were back today and the adenovirus level in her blood has raised a lot since last week so her doctor will reintroduce the cidovifor thursday and try to determine if it was the cause of the interaction. Yes, one thing again after another, only a day after she recovers from a bad situation she again faces her next challenge. Stephanie though is in good spirits and we are trying to cope with this one day at a time. We are still considering the growth hormone study and with a few reservations it might help Stephanie from contracting another virus later. We are grateful for the blessings she has received and the miracle for the chance of a new life, thankful for everyone who supports this family and for the care provided to Stephanie throughout her fight. She stays strong and has never given in, the road is long but her will to endure is amazing.
May each who travels this road with her be blessed, as we are forever grateful?
Tuesday, April 6, 2004 5:54 PM CDT
Dear family and friends,
Stephanie making a little progress, she is talking small sentences and been up most of the day. She looks a lot more alert today and does not remember anything from the last few days. Indeed a very nervous time for us and again she seems to have fought thru it and is recovering slowly. They will now very carefully reintroduce some of her medications and monitor her to determine which one caused this effect. Her counts are normal and now even producing more platelets on her own. More important is monitoring her kidney function and keeping check on the virus, another level should be back wednesday so we will see how well she is doing. During the last few days the medical team involved was very intensive and kept us well informed trying to find the reason and then finding a solution to her problem. Although worried and confused to why this happened, it is also comforting to know that these people are always searching for ways to help. We continue to thank the many people who continue to support our family, may god bless each one of you
Sunday, April 4, 2004 6:29 PM CDT
Dear family and friends,
Once again another struggle for Stephanie, since yesterday she has been incoherent and unresponsive. We have been very worried and nervous about her. They have done a ct scan and the results were normal, they have suspended about all of her medication to see if in fact she is having a reaction to any of them, they also preformed a scan on her brainwaves to determine if she was having a seizure but although the test showed a slower pattern the neurologist believes it is caused by a drug induced state. Dr. Margolis also believes that this is the problem and can be reversed when the medication that is causing this has been diluted from her body. They also have moved Stephanie to RM 5512, to be closer to the nursing station and on a central monitor. The doctors are also considering a MRI, but for now they do not want to sedate her anymore in concern that she would have to put in the ICU and on a ventilator. Her urine is looking better with less blood and her kidneys are still looking healthy. For now she continues her fight as more is put against her. We continue to pray and deal with this one day at a time. I keep telling her to believe and not to give up; i can only hope she understands. God bless each of you for the prayers and the support for our family.
Friday, April 2, 2004 5:50 PM CST
Dear family,
Stephanie is about the same as the last few days, mostly sleeping but being medicated for her pain and nausea. Her counts are still normal and for the cells she has her bone marrow is pretty healthy. The level of the virus did rise slightly this week. I have spoken with Dr. Margolis and her kidneys have rebounded nicely and her lungs and heart are looking fine also. The virus seems to be contained to just affecting her bladder. They will continue the antibiotic tomorrow and the plan will be to suppress the virus until she starts to begin making her own t-cells to cure it once and for all. We again are looking into the growth hormone study to maybe excel the process of stimulating her t-cells of producing. Another hard decision with risks involved but the benefits if it works are very good for Stephanie. Both Dr. Margolis and Dr. Tal ano were the principle investigators and although this is a new treatment based on theory, we feel confident in their experience and knowledge. We continue to give thanks to everyone who supports this family and Stephanie’s fight.
May god bless each one of you?
Wednesday, March 31, 2004 10:48 AM CST
Stephanies counts still rising at WBC--12.5 and ABSOL. NEUTRO. COUNT at 13,546!!!!! She still is not feeling to well and mostly sleeping. They continue to treat the virus and will have another test back today to observe the level in her blood. Her kidneys are slightly swollen but this may be due to the antibiotic they are giving her. Still being transfused blood and platelets. Overall she is still fighting and coping well. God bless and thank you.
Saturday, March 27, 2004 10:50 PM CST
Dear family and friends.
Today’s counts:
WBC--10.3!!!
ABSOL. NEUTRO. COUNT---8,755!!
PLATLETS--127,000
RBC--8.7 BEING TRANSFUSSED
Stephanie doing about the same today as the last few days. She mostly is feeling sick and just wanting to rest, but if that it what it takes to beat this virus it is fine. Her counts are looking great, the doctor says her liver, kidneys and lungs are looking healthy at this point. They will do another test for the adenovirus Monday and have the results wednesday to determine her progression. I spoke with her tonight and she sounded pretty good, just tired of being sick and wanting to get out of there. At 13 yrs old i believe she could challenge the nursing test, she knows a lot about all of these procedures, medications and how to give them. But for now we will continue our journey one day at a time, the blessing of each new day and the prayers from everyone who has traveled this road with us. Thank you and God bless.
Friday, March 26, 2004 4:14 AM CST
Dear family and friends,
Stephanie doing fairly well, her counts are coming up still to WBC--7.1! And absolute neutrophil count 5538!! She continues to spike a fever with nausea and some vomiting but taking alot of medication. The antibiotic is working and she is tolerating it well, they will do another test next week again to see how well again it is fighting the virus. This is one of those viruses that may take awhile for her to recover from. Though she has the counts we are looking for early in the post transplant phase it may take up to one year for her immune system to reconstruct itself. We were fully aware of this and knew it would be long and sometimes painful journey until she could be home. She is amazed still at the people who write to her and send cards, most she has never met but pray for her and show compassion and love. We continue to thank our family, friends, people who write and pray for her and Dr. Margolis and his team for giving her a renewed chance at life. The lord has truly blessed us for all who has made this journey possible.
Thank you and God bless
Wednesday, March 24, 2004 6:44 PM CST
STEPHANIE IS WINNING THIS FIGHT
The results came back and the antibiotic is working, the virus has had enough of her. Again she is beating the odds she has been dealt. Her counts are holding steady and she is feeling alot better than the last few days. The lord is sending his blessings and answering our prayers. This little girl has never given into this disease and fought thru several complications to try someday to fulfill her dreams. Very special thanks to everyone who has inspired her and supported this family. We must continue to believe that with god all things are possible. Someone told me an important message today that made a lot of sense, (stop thinking so much and praying more) blunt but to the point.
Tuesday, March 23, 2004 11:53 AM CST
Dear family and friends,
Stephanie again not well today with vomiting, blood in her urine, fevers and generally just feels bad.
Nothing new to report on the progress of the adenovirus. However some great news on her counts... WBC--6.1, ABSOL. NEUTRO. COUNT. -- 5246.
These counts are amazing to us; we have not seen counts like this for over 1 1/2 years. Her ability to overcome the impossible in the past will again prevail. Our prayers are being heard and answered; the faith of many is with her. Our family continues to ask for your prayers for Stephanie, and give our thanks to all who have believed in her.
Monday, March 22, 2004 7:47 PM CST
Dear family and friends,
Stephanie not feeling well today and mostly sleeping. Her counts are still doing well at WBC-4.4, ABSOL. NEUTO. COUNT-3520. She is being given IVIG and platelets, cidofivor for the virus and medication for the pain. She had a chest x-ray tonight to check for pneumonia but it was negative (good news). I spoke with Dr. Margolis today and so far he believes she is responding, but wednesday he will have a better idea when he receives the tests back of the levels in the blood. We are also looking at a growth hormone research study that may help her regain her t-cells faster thus helping her immune system recovers faster. This however is all in theory, it has never been tested before and also like everything else has its negative side effects. We have not decided yet though and will not until Stephanie is well enough to understand and know the potential effects it may have. For now it is one day at a time and being thankful for the blessings that we have been given. God bless and thank you.
Sunday, March 21, 2004 4:59 PM CST
Dear family and friends,
Stephanie keeping the fight up today, her WBC---4.7! And her absolute neutrophil count---3,560! Still being transfused with blood and platelets. She is still doing pretty well and the doctor feels like she is responding well so far to the antibiotic. Mostly sleeping today and resting. One of her favorite nurses has been caring for her most of the weekend. It seems the good lord is listening to all of our prayers and sending Stephanie her angel once more to guide her through yet another battle. She has been blessed to have so many who care so much. So overall this has been a good day for her, and we will continue to fight this one day a time. God bless and thank you.
Saturday, March 20, 2004 5:14 PM CST
Dear family and friends,
Stephanie is doing much better today, i spoke with her earlier and she was ready to come home. She has been up today and active, playing a few games and watching some tv. Her counts are staying steady and her urine is almost clear from the blood, both pretty good signs. With all the prayers and faith for this little girl, she will put that nasty virus in its place. In fact, when she felt i was worried yesterday Stephanie reminded me to just keep believing, i had forgot for a moment how far she has came and how much she has fought. So for now we will just fight this one day at a time.
God bless and we thank everyone for the continued support
Friday, March 19, 2004 3:27 PM CST
Dear family and friends,
Stephanie not well today, her counts however have came up to WBC- 4.4, and absol. Neutro. Count of 3160. The adenovirus she has contracted is a serious condition of post transplant patients and today we have been told it is in her bloodstream. They are currently treating this with cidofovir, an antibiotic not yet proven to be effective but has had some success in treating this virus. She is also being given IVIG and transfusions of platelets every 8 hours. At this point they are doing everything possible to contain and suppress this virus. We continue to stay strong and would ask for all to believe and pray for Stephanie. God bless and thank you.
Thursday, March 18, 2004 3:35 PM CST
Dear family and friends,
Stephanie is doing fine after her surgery last night, her white count has dropped a little but still in a good range. Today i spoke with her doctor and they have found the cause of the problem. It is classified as adeno virus; it is currently eating the lining of her bladder but can be treated. However, the treatment causes kidney damage so she will have to take another medication to prevent this. This could possibly spread to her lungs and kidneys but we will pray that this will be effective and stop here. Again she is in the best care and has the best chance to overcome this hurdle with this medical team. There are many things that can happen after a stem cell transplant that are not good, but we must continue to pray and fight one day at a time. I talked to Stephanie this morning and again she had that sparkle in her voice and told me not to worry, it will be alright. God bless and thank you for the continued support for this family.
Wednesday, March 17, 2004 8:11 PM CST
Follow up on Stephanie’s surgery,
Stephanie did fine thru the surgery and is back in her room. They did find a growth on the bladder wall and drained the blood; she will have a drainage tube and be monitored thru the night. God bless.
Wednesday, March 17, 2004 4:41 PM CST
Dear family and friends,
Stephanie is currently being taken to surgery to remove an obstruction in her bladder. I spoke with her doctor this evening and he will know more after the surgery. Her counts still are doing well and he believes she is starting to make her own platelets. They are still doing several tests and cultures. Please continue to pray for Stephanie, she remains strong and will win this fight. God bless
Tuesday, March 16, 2004 6:38 PM CST
Dear family and friends,
Stephanie was admitted back into the hospital Monday morning after a short break from her room. She was happy but not very active while she was out. It was very hectic moving from the Ronald McDonald house to the townhouse suite but they now have cleared the house for patients. Her counts have came up a lot since Friday, her WBC IS 3.4, AND TOTAL NEUTROPHIL COUNT IS 2040. Very good news. However she is bleeding and they are trying to determine where it is coming from, they have done several tests but no results yet. She also has been vomiting and had diarrhea since Monday morning. She is in room 5502 now and may be there for awhile so keep the emails coming. Dr. Margolis is not surprised by her return as he told us when we left this happens often. The important issue is she still continues to fight and her counts continue to rise. She mostly slept today as she was back on her iv pumps and pain medication thru her central line. We must continue to believe in the power of prayer and believe in the miracle. May God bless all who have continued the fight with our little girl.
Monday, March 15, 2004 2:16 PM CST
Stephanie has been readmitted to the hospital. She is in room 5502.We don’t believe it is anything to be alarmed about, but we have to wait for the test and lab results to come back.
Jeff will update this page when he gets home and I tell him what Dr.Margolis says.
God Bless
Sunday, March 14, 2004 10:39 AM CST
Dear family and friends,
I apologize for no updates sooner but we have been very busy getting Stephanie out of the hospital. She was released Saturday evening but the ronald mcdonald house was not ready yet so we are currently at the Marriott townhouse suites. There is a lot of medication, both iv and oral that Susan is learning to mix and administer, she does have a nurse that is coming here and teaching her but a still a lot of things to do. Stephanie is doing well, she wanted to get out of the hospital but i think she is a little worried about being out without the doctor and nurses being with her. Stephanie does know however that this is the next step on the road back home. It was great walking out of the hospital yesterday with our whole family and driving to the room, it was a good feeling for all of us. Stephanie will start clinic appointments monday at 8:30 am and hopefully not be back in the hospital anytime soon. She also can’t wait until the Ronald mc. house is open for her, she was looking forward to going there, but they should have it ready soon. Her counts are about the same, doing well with them though. Everything still is looking great and she is starting the next steps she needs to complete the journey.
We continue to thank everyone for the support for our family and the prayers for Stephanie, with the inspiration you have given her, the excellent medical care provided to her and the lord watching over her, she is winning the battle. God bless you and thank you.
Wednesday, March 10, 2004 1:40 AM CST
TRANSPLANT DAY + 22
WBC----2.5!!!!
ABSOL. NEUTRO.--1.1
ABSOL. NEUTRO. COUNT----1000
HEMO. ---9.6
PLATLETS---40
Stephanie doing good today and just waiting to leave the hospital. Still going to get out on Friday or Saturday. There is a lot more involved in this than we thought, Susan is taking a course in nursing 101. She will have to mix and prepare Stephanie’s antibiotics and fluids, do all the tubing changes and program the pumps. She will have to also have to make sure all medications are on time and insure all fluids are given. We are still not sure if Steph can go to the Ronald mcdonald house yet, they had an issue with the air quality and it is not solved as of today. We should know something by Friday morning; however the social worker assured Susan that if it is not resolved she would get a room at the Marriott townhouse until completed. But we cannot complain, the Ronald McDonald house is wonderful to families and provide an excellent room and other amenities.
Again our deepest appreciation to everyone who continues to support and pray for this family. God Bless
Monday, March 8, 2004 10:22 PM CST
TRANSPLANT DAY +22
WBC--2.4
ABSOL. NEUTR. --1.1
ABSOL. NEUTR. COUNT.--984
HEMO----9.6
Stephanie continues to look forward at getting sprung out on Friday or Saturday, she is getting very tired of the hospital. I am sorry if i created a misunderstanding in the previous journals but Stephanie will be let out and will have to stay very close to the hospital for the next 6 months or so, the Ronald McDonald house is just across the road. This is very important as she will have to be careful to not contract any colds or viruses. The next year she will continue to reconstruct her immune system, as i have said before it is a long road for her that she has just began. There are more battles ahead but she is ready and has your prayers and support. I will always continue to update this page, as you have continued to inspire our little girl with your kindness. A special thanks from our family tonight to my coworkers and friends at dominion transmission, my wife and i are forever grateful. God Bless.
Sunday, March 7, 2004 4:45 PM CST
TRANSPLANT DAY + 21
WBC---------2.6!!!
ABSOL. NEUTRO. ----1.0
ABSOL. NEUTRO. COUNT.--910
PLATLETS---27
HEMO. ----10.4
Stephanie doing very well the last few days, she is itching to go over to the Ronald McDonald house and out of the hospital. I spoke with her on the phone and she sounded great and at the time was looking for some crafts to do. She still is on the schedule to get out on the 12th or 13th, but will have to take iv fluids with her for awhile, I will go back friday to take her some clothes and stuff from her room and get her settled in. Her spirits are continued to look forward to come home, but we are taking it very slow and being very careful. Our thanks to everyone who continue to support this family, you will never know the gratitude we feel. May the lord bless you?
Friday, March 5, 2004 7:09 PM CST
TRANSPLANT DAY + 19
WBC 2.2
ABSOL. NEUTR. 1.0
ABSOL. NEUTR. COUNT 990
HEMOGLOBIN 10.5
PLATLETS 21 TRANSFUSSD THIS AM
Stephanie doing very well, except for the headaches. The ct scan results were good news, her sinus infection was 89-90% cleared up. So far every test has been good news and shows she has the best chance possible to keep engrafting and still on the road to be discharged on the 12th or 13th. On the trip home this morning all i could think was about the day Stephanie comes thru the mountains and back home, when i left to go to Wisconsin i wondered if she would ever see this again. Today there was a revived feeling and hope to when the day she does. Our prayers are being answered and Stephanie is no longer afflicted with aplastic anemia, she has won that battle. Now she must keep fighting to win the fight against infection and to continue to engraft and the reconstruction of her immune system. Again we thank everyone for the prayers and the support for this family. It is very emotional and expensive to continue the fight and the donations made are appreciated, the prayers are our inspiration and the comfort is from knowing so many cares. God Bless
Wednesday, March 3, 2004 9:12 PM CST
TRANSPLANT DAY 18
" COUNTS OF BLESSING "
WBC----2.1
ABSOL. NEUTRO.--0.9
ABSOL. NEUTRO. COUNT----1055
HEMOGLOBIN---8.5
Stephanie did very well today, she went on a small pass to do some shopping, again we were very cautious around anyone and also had to take her iv medications. But for her it is very good to get out of the room and remember how a normal teenager is supposed to feel. The test came back today on her chromosomes and it showed GREAT NEWS, the cells were 100ine and none of hers, this is what Dr. Margolis wanted to see and very excited when he told me. However her hemoglobin dropped and all of her vital signs have been normal with no blood in her so no evidence of internal bleeding. We were hoping she would have no more blood transfussions but we are very thankful this morning to see her white count come back. Maybe a little pause but also it could be the lord’s way of letting us know that his blessing is indeed a miracle. Stephanie also had a ct scan today to check on her constant headaches and stomachaches. Again this medical team is very efficient and complete in the care of our daughter; they are always staying one step ahead. I must return to work Friday and will leave tomorrow morning with our son and another emotional time to endure, please say a special little prayer for my wife as she has to watch her family leave and stay with Stephanie. She has been here for over three months with several months left, now you understand where Steph pulls her everyday strength from. But our family is supported and prayed for by many and that is how we have came to this point and will continue until we return home. Thank You.
Tuesday, March 2, 2004 7:47 PM CST
TRANSPLANT DAY + 17
" COUNTS OF BLESSING "
WBC----1.7
ABSOL. NEUTRO. ----0.8
ABSOL. NEUTR. COUNT-----1122
HEMOGLOBIN-----10.5
PLATLETS-------40
This am her counts have dropped but the miracle continues and our faith is ever strong. Yes a little worried, but that is the parental instinct we all have. However her doctor preformed a test this morning to compare how many cells are mine to how many are hers, he wants very little or none of her cells left. He also assured us that again this is not uncommon and he is just staying ahead of whatever our little trooper sends his way. Stephanie has had a good day and was up tis morning around 10am and took a bath. Her grandparents are visiting and she wants another pass tomorrow to go out with them, i believe she is planning a highjack of thier car back to W.V. After speaking with the medical team she may be released from hospital the 12th or 13th, just have to see how well she does. They did another count at 4pm today and her cell count had came up a little form this morning, so just a little comfort for our minds. We ask that you would share in are happiness for stephanie, you have inspired this little girl to win this battle, and we have been blessed to have so many that care.
Monday, March 1, 2004 8:58 PM CST
TRANSPLANT + 16
" COUNTING HER BLESSINGS "
WBC----2.1
ABSOLUTE NEUTROPHILS---1.1
ABSOLUTE NEUTROPHIL COUNT-----1,155!!!!!!
HEMOGLOBIN------11.4 HOLDING
PLATLETS-------TRANSFUSSED THIS AM
Stephanie not feeling well today, she had platelets this am followed bt IV-IG. Mostly slept today with limited activity, but her head and stomach hurt most of the time. She caught up on all the emails last night and enjoyed reading them and was preparing thank you cards, she wants to do that part on her own. She still can not believe the people who write and pray for her daily. The blessing continues as Stephanie is winning, and we hope the only mountains left for her to climb are in Wyoming County W.V.
GOD BLESS AND THANK YOU
Sunday, February 29, 2004 5:06 PM CST
TRANSPLANT DAY 15
" COUNTING OUR BLESSINGS "
WBC-------2.0
ABSOLUTE NEUTROPHILS---1.0
ABSOLUTE NEUTROPHIL COUNT-----980
HEMOGLOBIN----11.0
PLATLETS------33
Again stephanies counts are building up, a lot of construction going on in that little body of hers. She is doing well but has had slight stomach pain today and not wanting to go out, but she did walk a lot yesterday. She is mostly watching tv and coloring. She is eating a bit more now and they are slowing weaning her off the pain medication or trying to convert them to pills so she can get out of the hospital as soon as DR. Margolis, gives her a get out hospital free card. But seriously, we are blessed to have the level of care given to our daughter by this team, and the inspiration of everyone’s support and prayers. Stephanie would like to wish her aunt kelly a wonderful birthday. Thank you and God Bless
Saturday, February 28, 2004 5:59 PM CST
TRANSPLANT DAY + 14
There is one thing we have came to learn, expect the unexpected from this little girl......
WBC----2.0
ABSOLUTE NEUTROPHILS---0.7
ABSOLUTE NEUTROPHIL COUNT--880
HEMOGLOBIN----11.7--7DAYS SINCE LAST TRANSFUSSED
PLATLETS--6 TRANSFUSSED THIS AM
Stephanie is continuing to win her fight, she woke up around 1030am,( the teenager kicking in ), and a little pain in her stomach but she was ready for her bath, and to try on her new outfit and head to the zoo. Janelle, Stephanie’s friend that received a transplant also, came down to go with her and they wore us out. They had a great time together and it also reminded us of the times before this disease and why we fight so hard to get it back. She was a child again, except for the mask and iv fluids she had to take. She was so excited to go out and we have plenty of pictures to share as soon as i can download them, we are excited to show them to everyone who has prayed for her this day would come. Her grandparents are coming tomorrow and she can’t wait to see tham also, so she is going to have a great weekend all together. Now we are living one day at a time and every day is a closer one to bring her back home. We could only hope that everyone can share our happiness and know that you are also in our thoughts as you have supported us thru this difficult time.
She has had almost 10,000 hits on this website since it began. Stephanie wanted me to tell everyone not to worry, her seeds are sprouting, flowers are growing and spring is near. God Bless and our appreciation to all.
Friday, February 27, 2004 7:52 PM CST
TRANSPLANT DAY + 13
Stephanie’s counts remain about the same today but she was in no pain.
WBC---1.4
HEMOGLOBIN--11.4
PLATLETS--31
ANC----588
!!!!!!!!!!!!!!!!!!!!A BLESSING!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Stephanie awoke this morning about 830am, and has been pretty active all day. She was walking a lot with physical therapy and doing crafts, watchingTV. and being a 13 yr old. Tonight she ate steak, and baked potatoes. Tomorrow we plan to go to the zoo for a little while and just enjoy some time outside. Her Dr. has taken her off the steroids so he expects her counts to slow down a little but that is all right, we needed a break to catch up with all the excitement and to be grateful for what has happened so far.
To see stephanie this well again is a heart felt happiness for us. The staff here is also very happy for her and they also remember when she arrrived here and cant believe the change. We ask for your continued prayers as the road ahead is still long and may have mountains to climb, but we are truly blessed with a miracle. God Bless and our deepest appreciation.
Thursday, February 26, 2004 4:20 PM CST
TRANSPLANT 12
!!!!!!!!!!!!!!!!!!THE MIRACLE CONTINUES!!!!!!!!!!!!!!!!!!
WBC---1.4
ANC---840
RBC---12.4
PLATLETS--23 BEING TRANSFUSED
Stephanie is doing well today; she slept a lot but was up late last night. A slight headache and some stomach pain but not enough to keep her down. She is up playing spinart with the childlife specialist and eating cornflakes. Dr Margolis said it would be a good idea to take her out Saturday (it is supposed to be 50 degrees )so i believe we will go to the zoo, but be very careful and stay away form most people. It is still unbelievable the distance she has came in the last 3 months, from a fungal infection that had her fighting for her life to the highest counts we have seen in a year and a half. Many people had questioned our decision to come here, but we had trust in this hospital and her doctor, after dealing with this and constantly second guessing ourselves, we gave complete control to Dr. Margolis and his team and put this in the lords hands to guide them. We also realized the hundreds of people that were praying for her and cared about our little girl. This is why we call this a MIRACLE, she has been blessed and we are forever thankful for even an extra day, month, and year to spend together as a family. We still are taking it one day at a time, and being very careful. Stephanie has fought for this for 2 years and her time is now, she is winning. God Bless.
Wednesday, February 25, 2004 4:42 PM CST
TRANSPLANT DAY 11
Stephanie’s counts continue to rise.....
WBC---1.1
HEMOGLOBIN-12.8
ABSOLUTE NEUTOPHILS--440 YES 440!!!!!!!!!
PLATLETS--13, RECIEVING PLATLETS TODAY
Stephanie is feeling better today, only a slight headache. She has been up most of the afternoon and receptive to physical therapy, and also starting in on a little school work. We are very excited and thankful for this blessing but in honesty, still reserved. Dr.Margolis assured Stephanie she was doing just great. We are so very grateful for the knowledge given to this Dr. and this team to perform this medical science that is nothing short of a miracle to us. Remember, stephanie was only given a 15hance to even survive elsewhere. We still are living one day at a time and are pulling our strength from your continued support and prayers. May each one of you be blessed and share in our daughters miracle. God bless
Tuesday, February 24, 2004 4:52 PM CST
TRANSPLANT DAY + 10
More wonderful news!!!!!!!!!
Stephanies counts still rising this am, her WBC IS 0.7, HER ABSOLUTE NEUTROPHIL COUNT IS 336 (THREE HUNDRED THIRTY SIX). Her hemoglobin is 12.9 still....Platlets dropped to 25 but that will take a little while. This is real, everyone who has supported and prayed for this family and followed this site it is hard to believe. But it is by the lord’s hand that guided us to this hospital and to this doctor, miracles do happen, if we just believe. Stephanie is mostly sleeping today, although she is doing better and off of oxygen the past 24hrs. She is very excited but like us i believe reserved for now. She knows there is still a long road but looking forward to getting back to the Great Town Of Pineville, as are we. We are so very grateful for everyone’s support, from our family, our friends, the medical staff, and the many people who pray for us daily. Please continue to pray as Stephanie is WINNING this fight. God Bless and thank you.
Monday, February 23, 2004 8:05 PM CST
TRANSPLANT DAY + 9
Stephanie once told Dr. Margolis when he was explaining all about her flower bed and there were no seeds and he would have to plant new ones, she replied with "she was just in a drought", i have remembered this and thought what a positive outlook for a 13 year old girl who has fought such a tough battle.
Today the drought has ended and the lord has answered all of our prayers. Stephanie has started to engraft with the cells she was given on Feb. 14th. Her WBC is 0.4, ANC 0.2, platlets and blood still being transfused, but the platelets do not seem to be used up so fast. Her counts were done twice today to make sure this was correct and it was. She is also off oxygen and more comfortable, still sleeping a lot and elevated blood pressures. Her Dr. anticipates the high pressures to subside when the steroids are discontinued.
Though these counts can drop, stay the same, or climb for a short period we can only be thankful for this start to our daughter’s new begining. Everyone has believed in the miracle, and prayer has indeed been our inspiration. We are overjoyed to share the good news with everyone who continues to support our little girl. May you be blessed and thank you.
Sunday, February 22, 2004 10:24 AM CST
TRANSPLANT DAY + 8
Stephanie doing better this am, she slept well last night but her blood pressure still high and being treated. She is needing less oxygen and the pain is being controlled well now, she will recieve platelets today. The overall status of her health is progressing well with the medications and pain prevention. With the lords blessing she will engraft this week, counts will come up and she will get stronger.
We are asked alot what you can do to help. Today I have some information to share and some calling we all can do to your state represenitive and senators about these bills. They are instrumental in the fight for children and adults with autoimmune diseases. Please take a few minutes and make a difference, call your states represenitives and let them hear your support. The following are the bills of intestate sponsors and a brief summary. You may also access www.thomas.local.gov/bss for more information.
HR 3034 National Registry Reauthorization Act
Sponsor: Represenitive Bill Young (R-FL)
Highlight: Would require making relevant summaries and data sets of scientific information available to the public.
HR 3359 Prevention, Awareness and Research Auto-Immune Disease Act
Sponsor: Patrick J. Kennedy (D-RI)
Highlight: Would require the health resources and services administration to establish, 1: Grants to educate health care providers on potential links between autoimmune diseases and depression. 2: A loan repayment for researchers who study autoimmune diseases.
S 1717 National Cord Blood Stem Cell Bank Network
Sponsor: Senator Orin Hatch (R-UT)
Highlight: Would establish a network responsible for preparing, storing, and distributing human umbilical cord blood stem cells for patients needing transplants and supporting peer-reviewed research using such cells.
S 573 Organ Donation and Recovery Improvement Act
Sponsor: Bill First (R-IN)
Highlight: Would establish several new initiatives related to organ donation.
Again, this will help with the fight for survival of many children, many like our little girl, please makes a difference to a precious life. Thank you and God bless.
Saturday, February 21, 2004 6:33 PM CST
TRANSPLANT DAY + 7
Stephanie doing pretty well today, her pain are somewhat better and she is more comfortable. They are still treating the pleurisy and serum sickness. She is still doing good from the transplant standpoint. Stephanie was up today and walking around for a short period, playing a few games and doing some crafts. She slept well last night, and it was good to see her so peaceful for a night. She still is on oxygen, but needing less today than the previous two days. We just continue to be with Stephanie and comfort her with prayer as she continues her fight. We thank everyone that continues to support this family in our time of need. God bless.
Friday, February 20, 2004 6:02 PM CST
TRANSPLANT DAY + 6
Stephanie doing fairly well today, she got a little sleep last night but still in a lot of pain. This morning they did a ct scan and it showed she has developed pleurisy and believe that is where the pain she is having is coming from.
She also has developed serum sickness, and Her Dr. is treating this now and hopefully it will help her to be more active and in a little less pain. She received blood and platelets today also. The last two cultures of her blood were negative and that is really good news. She has been up today a little and received a few more packages and that brought her spirits up. She continues to receive the best care we believe is possible at this point and we have confidence and faith that in a short while she will indeed graft and continue to get well. Everyday we are blessed with the courage Stephanie has to fight this battle, and with the prayers that give her strength. We thank everyone who continues the fight with her. God bless
Thursday, February 19, 2004 10:26 PM CST
TRANSPLANT DAY + 6
Today stephanie was pretty good, still in some pain but being treated with medication. Dr. Margolis and his team are working very hard to manage stephanies pain to a comfortable level on a daily basis; she has excellent nurses that really care about the children here. To Susan and I this is extremely important to Stephanie’s care as it helps her mentally prepare for each day. From a transplant standpoint she still is looking good and just praying that in time and with the lords blessing her counts will start to come back. I must also mention the professionals here that interact with Stephanie on a daily basis, apart from the nurses and her Dr., these ladies spend alot of thier time with her just playing and talking and help her very much. We are very grateful for all of these people who are helping our little girl and forever thankfull for everyone’s support and prayers. God Bless
Wednesday, February 18, 2004 7:30 PM CST
TRANSPLANT DAY + 4
Stephanie had a good day today, she was up and playing. She has felt very good with little pain and it was great to see after the last few days. Her white cell count did come up from 0 to 0.1 but her Dr. said not to get excited it was a little to early for it to start yet. But the lord has control of that now, and he is listening to our prayers so we will just wait. She also has developed bacteria in her blood as of today but they are treating it with antibiotics. She has caught up on all the emails and very excited to read them and look forward to the next day. Again, we are grateful for the support and prayers that keeps our Stephanie in the fight. God bless.
Tuesday, February 17, 2004 4:49 PM CST
TRNSPLANT DAY + 3
Stephanie had another rough night, but today she was awake this afternoon and playing a few games and talking some. Though still on a lot of medications, it was great to see her up and moving around after the last few days. She read some of the emails and was happy about all the people who had wrote to her. We had to shave her hair tonight and i don’t know who took it worse, myself or her. She did a great job and it will take a few days to get use to it, but she still is adorable. Just another unpleasant thing to deal with thru this ordeal. Well i am glad to report a little good news tonight and i know everyone is glad to hear it. We have deep faith in the lords healing, as we all continue to pray for Stephanie, as she continues to fight. Thank you and God bless each one of you.
Monday, February 16, 2004 8:07 PM CST
TRANSPLANT DAY + 2
Last night and today Stephanie was very sick and in a lot of pain, she had a bad headache and vomiting. She did however get up this evening and take a bath and felt good for about an hour. They are working very hard to control her pain and nausea. Her doctor was checking in on her very often, and also said that this will get worse in the next week but this is normal with transplant patients. From a transplant standpoint she is doing well, it will not be until day 12-20 that we should her counts come back up. Stephanie also started to loose a lot of her hair today so we cut it a little shorter and she accepted the fact that this was a small price to pay for a new start. She has fought the pain with courage and does not give up on the everyday routine she must do to beat this. I don’t believe i could have fought this hard or this long, she is an amazing child. But we know your prayers and the lord is guiding her and will lead her through the upcoming weeks. God bless and thank you.
Sunday, February 15, 2004 5:16 PM CST
TRANSPLANT DAY + 1
Stephanie fairly well today, a rough night last night for her but it seems to be a little worse at night. She has slept most of the day, the chemo and radiation have several different effects but they are regulating the medication well. So far though everything going as expected and just trying to keep the germs away from her. Stephanie will read all the new emails when she feels well enough but she was really excited about all the ones she read yesterday, she can’t believe all the people that care about and pray for her. I can tell this gives her the extra energy to try even harder; indeed you’re her inspiration to keep fighting. Everyone here was wishing her a new happy birthday but Stephanie responded, by my surprise, saying that god had given her a new life on valentines day. She reminded me again that she will not give up, and not to worry. We would like to thank Lisa and Jim for being with us in that special hour of her transplant; they came back to the hospital and helped us get thru this emotional time. Thier daughter went thru a transplant and is doing well, has visited Stephanie, and helped her understand but most of all, was a true friend in her time of need. God bless all who continue the support and fight with our little girl.
Saturday, February 14, 2004 2:29 AM CST
This morning at 1:41 am Stephanie received 4 vials of hematopoietic progenitor cd-34 purified stem cells, the end to aplastic anemia and a new begining. The transplant was exciting to us but much like a platelet transfusion, Stephanie was well aware and had a small smile on her face.
Dr. Margolis was in contact and explaining the T-cell depletion and that the t cell count was a little more than he wanted but that the cell count was great and he was comfortable with the overall cells. Just a small chance more of GVHD, but in theory a small chance less of infection. Dr Margolis had promised from day one he would do everything he could to help our little girl and he has kept that promise. Stephanie was not good all day due to the chemotherapy and radiation finally has caught up with her, she has been heavily medicated and sleeping. But this is normal for transplant patients. The next weeks ahead will be critical for the engrafment of the new cells and stephanie will be very sick for awhile and confined to her room, the emails she receives are very important and lift her spirits. The support she has had brought her to this new day and a brighter chance to become a teenager once again. As this new day begins for us we are forever grateful to everyone who has supported this family and we ask that you continue to pray for Stephanie that she will get stronger as each day passes. God bless...
Friday, February 13, 2004 3:53 PM CST
TONIGHT AROUND 12:00 A M STEPHANIE WILL RECIEVE
THE FIRST CELLS NEEDED TO BEGIN HER NEW FIGHT
FOR LIFE. THE MIRACLE OF HOPE IS AROUND HER,
AND HER HEAVENLY FATHER WILL ANSWER OUR PRAYERS.
Thursday, February 12, 2004 7:58 PM CST
DAY -1 ATG X 1 (NEW ROOM)
Stephanie has been moved to room 5506 the direct phone number is 414-607-5136. She is doing very well today with still no serious reactions, just running a high blood pressure but normal for her while receiving the ATG. She received a lot of gifts and cards today and was very excited; she wanted to thank everyone for this. The collection went well with more than enough cells to complete the transplant for Stephanie, a long process of about 5 hours and i feel fine. Stephanie is ready for tomorrow and still the only thing that really bothers her is when her hair falls out, but besides that she has been active and playing most of the day and even ate kentucky fried chicken and mashed potatoes for supper. We feel good about the transplant and know that your prayers have touched Stephanie and lifted her spirits to be ready for the road ahead. As we prepare for the transplant please know that your prayers and support are felt and appreciated. God bless each one of you.
Wednesday, February 11, 2004 5:58 PM CST
DAY -2 ATG X 1
Stephanie doing pretty good today besides some headaches and high blood pressure. She was resting most of the day but has been up now for a while and active. Tomorrow they will do the harvest from me and prepare Stephanie for the transplant on Friday. We do not know the time yet or what room she will be in but i will post when we know. I will try to update this page daily but please bare with us as it is getting really hectic here. We continue to appreciate all the emails, cards and support for this family, and we thank the lord for such caring and giving people. God bless
Tuesday, February 10, 2004 7:01 PM CST
DAY -3 ATG X 1
Stephanie is still doing pretty well, her blood pressure and heart rate a little high but no serious reaction. She didn't get much sleep last night as they were trying to regulate her fluids and changing medications. She is a little swollen from all the treatments but it should go away soon. She will get ATG for wednesday and thursday ran 18 hrs over each day. Her spirits are still up and she was up doing some crafts and talking about what she will do when she gets home. Tonight we are just preparing to switch rooms; she will be moved to a disinfected room for the transplant with little contact to insure no contamination. We are anxious to begin the cure for stephanie and also very scared, she has came along way with the help and support of many people that we can not begin to give our deepest thanks and appreciation. Dr. Margolis and his team have brought her to her best condition in several months, with these professionals and with the lord to guide them, Stephanie will have the best chance to overcome the weeks ahead. God bless.
Monday, February 9, 2004 9:22 PM CST
DAY -4 ARA-C X 2, CYTOXAN X 1, ATG X 1
What a day, stephanie is doing very well with all the treatments, it will be the roughest day and everything will be done except for the ATG the next three days run over an 18hr period. We were certainly prepared for a long day, but again Stephanie proved us wrong and breezed thru it with no reactions so far. Her counts are now 0, but still getting platelets and blood. She is ready for the transplant now and we have the lord to thank and everyone who has prayed for her over this long emotional road. Although still a long road to go we will take it one day at a time. She wanted me to thank everyone who has helped her and wanted you to know that she is ready and not to worry. God bless and thank you.
Sunday, February 8, 2004 9:05 PM CST
DAY -5 ARA-C X 2, CYTOXIN X 1
Stephanie is doing very well today with no reactions, just a little stomach pains. This so far is going well with her, she has been up most of the day doing art stuff and playing games. She wanted a steak and baked potato tonight so off we went and got her exactly that. Indeed the lord is with her and she is ready to get better, she is now talking about what all she wants to do and where she wants to go. She has not looked this good for months, and all the nurses can not believe she is doing this well. But we are a little reserved as it is still early in this and the road is still long but we are on a countdown to Pineville, WV. There is no option for us but to beat this dreadful disease and bring our little one home. God Bless, and believe in the miracle of prayer, thanks you.
Saturday, February 7, 2004 4:45 PM CST
DAY - 6 ARA-CS (CYTOSINE ARABINOSIDE) X 2
Stephanie started her chemotherapy this am and although very scared her is doing great. No reaction so far except for some stomach aches, she has been up most of the day and very active. She had a pleasant surprise this morning as her aunt Cathy came to see her and brought William up for a visit. She will have the second dose tonight at 9pm; it is put in thru her central line and run over a 1hr time period.
Tomorrow will be a little more hectic because they will have to access her port and central line and also put a catheter in her. All of our prayers for her being answered and the lord is guiding her thru this. So, good news so far and i know it is welcomed. Please continue the prayers for Stephanie and believe the miracle as just begun. God bless and thank you.
Friday, February 6, 2004 6:03 PM CST
DAY -7 TBI RADIATION X 2 IVIG
Stephanie is better today, still tired but overall tolerating the radiation well. She just finished the last treatment tonight and will get IVIG later. She will start the chemotherapy tomorrow. She is being treated with medications to help with the stomach pains and headaches, but doing very well with this first stage of the preconditioning. She has been eating a little, mostly fresh strawberries and sugar but it is something. She mostly is worried about her hair falling out, but she knows it will grow back and she is not out of place up here. Stephanie had a session of school today and did well; she also is reading a lot and now wanting pork rinds, of all things. We have got her a lot of the I-Spy books and she has fun challenging the nurses to find the objects. I will update again tomorrow. Many thanks and God bless.
Thursday, February 5, 2004 4:01 PM CST
Day -8 TBI Radiations x 2
Stephanie is not well this am, the radiation has finally set in and she is mostly sleeping. She is feeling a little better this evening and is getting ready for the next radiation treatment at 5pm. She is still receiving mail and it helps her lot, a little note to her means so much and we are very grateful for everyone who continues to support and pray for her. She will start again at 7am in the morning at day -7. God bless each one of you who continue the fight with Stephanie.
Wednesday, February 4, 2004 6:55 PM CST
Dear family and friends,
I apologize for the delay in updating this page but the last several days have been very busy with driving and going thru all the consent forms and finally making the decision to go thru this. Stephanie has completed her first day of radiation and it has gone well, she tolerated the radiation very good and is doing well. She will continue this treatment twice a day for the next two days and then start the chemotherapy. She was a little scared this morning for the first time but so was I. We have had very little sleep the last few nights, knowing this is the best for her but hoping for some miracle that would stop it and make her better. It is very difficult to go over all the consent forms and actually signing them knowing that she is going to get very sick before she gets better. There are a lot of issues that as parents you do not want to hear but it has to be done. However there are people here to support we and they are really considerate and professional. Stephanie is mostly tired now from the radiation but seems to be still in good spirits and continues to look forward and understands this is her best chance. We had a very good talk, and said a very special prayer this morning and we know the lord is with her and she believes in all the prayers that everyone continues to pray. She will start at 7am in the morning, and i will try to update this daily from this point on. Thank you for the continuing support of this family and our little girl. God Bless.
Wednesday, January 28, 2004 9:26 AM CST
Stephanie is doing well after her surgery, very good news as they did not find any aversive sinus infection, just the same one that she has had. She is just resting and did very well and preparing for the transplant. She will start on the 4th with total body irradiation-twice daily, thru the 6th. The 7th she will start ARA-C twice daily coupled with Cytoxan thru the 9th, and then the 10-12 she will receive ATG treatments. On the 13th the transplant will take place. This regiment is to kill all cells to insure her immune system suddenly does not wake up in the middle of the transplant and try to fight off the new cells introduced, thus causing GVHD. Please bare with us thru this time as Stephanie has had a severe reaction to the ATG in the past, i will try to update this page often. Stephanie’s grandfather Ott flew up to be with her and help Susan until i return so she should wake up this am with a little surprise. Again we thank everyone who continues to pray and support this family, especially Donny and Cathy Morgan who are caring for our son while i must work, my fellow coworkers as they are working many hours to cover shifts when i am with my family, Mrs Mitchell (granny), who cared for William several times so he could be with me, Karen, Audrey and Kinsey, for support and guidance to this hospital. And a special thanks to Lisa and Sharon for the daily emotional support to susan, you are indeed very specail friends. We are very grateful to everyone and ask a very special prayer for Stephanie as this begins, we may only ask that the lord comfort and prepare us for this next step, the path he has chosen, and we can not change. God Bless.
Monday, January 26, 2004 7:51 PM CST
Dear family and friends,
Stephanie is feeling better and is getting ready for the transplant. She will have an extensive surgery Tuesday morning on her sinuses as they have found it has started to decay the bone tissue. They have fought this infection aggressively but Stephanie will need to produce her own white cells to beat it. Therefore they will do their best to slow it down with the surgery. We thank you for the continued support and prayers. God bless
Friday, January 23, 2004 10:00 PM CST
We recently learned this am that Stephanie has developed myelodysplastic syndrome from the bone marrow aspiration done, this is a progression of this desease in which there is no cure but a bone marrow transplant. Dr. Margolis wants to perform the transplant on the 13th of Feb. as it will take to long to process the unrelated donor so we will proceed with the parent transplant. She is although a lot healthier than a few weeks ago and is a lot more active. I do not know how she reacted today to more bad news, but when i talked to her she said, don’t worry, we just must believe. I can honestly say she is ready to fight this last battle and along with all of your prayers and support the lord will be with her and now we must step back and put this in his hands.
Thursday, January 22, 2004 9:22 PM CST
Dear family and friends,
Stephanie is doing a little better this week, still having headaches and in some pain but still being treated with pain medication. Her counts continue to stay the same trend with 0-20 neutrophils every three days; WBC is 0.1, and transfusions every other day for platelets and blood. We are waiting for the donor to do the required blood tests and physical to insure that they can donate. Dr. Margolis has explained that there are many risks involved in either myself or the other donor and he and his team are discussing the best option for Stephanie. There are many factors involved in this and i can just insure everyone that they continue to do an outstanding job in caring for our daughter daily and she will have the best chance available to survive this transplant with this team of doctors and nurses. He wants to give her a few more weeks to get healthier and rates her on a scale of 0-100when she arrived she was about 40th now she is about 60he would like to get her to about 80-90efore the transplant to have a good chance to survive. With the central line they are giving her nutrition and fat emulsion and she has gained 10 pounds as of tuesday, stephanie is reading all of the e-mails and realizes daily just how many people are thinking and praying for her. She has received numerous donations over the past month and wanted to thank all who help her in her fight to beat this disease. There are many who continue to support our family in so many ways that make it possible to continue this battle and we are forever grateful. This has been and continues to be a very difficult and emotional time for us and without the caring support of family, friends and from all who pray for us we could not have made it this far. God bless each one of you.
Saturday, January 17, 2004 8:39 AM CST
Dear family and friends, Stephanie has been up and down on her neutrophil count from 0 to 20 in the past 3 days. The best news yet is they have found a confirmed 9/10 almost perfect bone marrow donor match, however this process now will take 4-6 weeks to process and get ready for the transplant. This gives her doctor more options and another chance for her to produce her own cells and become healthier and a better chance to survive the transplant. It will be a waiting period and if she started to get worse he has the option to use myself as everything is ready to go with the parent transplant. All of this is hard to explain, but they are working very hard to keep her healthy both physically and mentally. Dr. Margolis and his team have been excellent in their care and provide the best chance for Stephanie to get well again. Please know that we are very thankful for all the prayers for her, it was a true miracle that she had the neutrophils to stop the transplant conditioning of radiation one day before it started and to find a 9/10 match the same week. The lord is with her and guiding this team of doctors as he guided us to bring her to this hospital. Thru everyones prayers and support of her and this family, she has never given up her battle to beat this and continues to fight thru everything thrown at her, for this we will be forever grateful. God bless.
Wednesday, January 14, 2004 9:09 AM CST
Well once again our emotions are torn apart, Stephanie’s neutrophils have dropped to 0 the last two days, her WBC is 0.2 and she is receiving platlets every 2 days. Her surgery went well yesterday and they found no dead tissue. She has been sleeping the last few days with all the surgery and medication so the next few days should be pretty good. The plan now is to wait for the donor match to see if it is a 9/10 match and to see if Stephanie will make anymore cells. Her doctor will decide whether the match is a good one or if i will still be the donor, at this point though he is comparing the chances of rejection to the chances of graft versus host desease. We have been at this point before and we were honestly excited Monday but only can say that the lord had a reason for her not to start the radiation Tuesday and we will know when it is time. Stephanie is indeed a tough case to solve and is keeping the doctor on his toes, but for now he will give her more time to heal and have a better chance to survive the transplant. The lord answered our prayers for the little girl who had the transplant 3 weeks ago as she is preparing to go home today, she is doing very well and this is a great site to see. We have met with Karen and Kinsey several times and they have been an inspiration for us. We have also met Linda and kaille wells and ask for prayers for this family as they continue their battle and search for a donor. We continue to thank everyone for the support for our family and know the lord will guide us and are with our little girl. God bless
Monday, January 12, 2004 12:48 AM CST
Great news from milwaukee..... one day before the radiation was to begin, in which there would be no turning back, she awoke with 68 neutrophils, if this was not enough good news about 2 hrs ago they might have found a 9/10 bone marrow match right here in Milwaukee, but we will have to wait until thursday for the final DNA results. Stephanie had a bone marrow biopsy this morning and there are a few good cells also the Dr. saw. We have been on an emotional rollercoaster this morning and still trying to figure this entire out but for now the transplant is on hold, Dr. Margolis does not want to rush into this until all options are exhausted. As i said, when they start the radiation there is no return and this we truly believe was the lord answering our prayers. One day before the radiation all of this good news came to us, her dr. still believes she will need the transplant but for now we will once again go into a waiting period to decide the date. We are so very grateful for the prayers and we will update this page when we have sorted thru all of this. God Bless
Friday, January 9, 2004 9:00 AM CST
I arrived back at wisconsin last night, Stephanie was feeling better but still in a little pain from the kidney stone. They have put her on an antidepressant so she is talking alot more the last few days, asking a lot of questions about the transplant. She will have the bone marrow transplant on the 22nd of jan. She will start the conditioning on the 13th with radiation and chemotherapy, i will start on the 15th with the conditioning and the extraction will be on the 21st. I will try to update this page daily when the transplant starts. Stephanie is still receiving cards, and a lot of prayers. She is very happy to find so many cares for her and pray for her to get better. We again thank all who support us and make this journey easier to deal with daily, we pray that our little girl will one day be able to share this experience and help others with this disease. Please keep Kailee wells in your prayers as she fights this disease and is in need of a donor, and also Kinsey morrison, she is winning the battle but living with the fear that this monster might return. God bless.
Monday, January 5, 2004 5:04 PM CST
Dear family and friends, Stephanie is not doing very well, she has developed a kidney stone along with the infection they are again trying to fight with an aggressive antibiotic. She has been in a great deal of pain the last few days, but being treated with several pain medications. Her counts have dropped to 0.1 WBC, 0 neutrophils, and she is receiving blood and platelets when needed. I spoke with her Dr. this evening and he believes the time for the transplant has come and will schedule her date soon. She has had no solid counts and has been neutropenic despite the treatment and drugs they have tried. Again, we are so very thankful for everyone who continue to pray, write and support Stephanie. God Bless
Saturday, January 3, 2004 9:34 AM CST
Stephanie is recieving a new antibiotic for a fungal infection and is not well since it was started. She is very weak and is having trouble tolerating the medicine. Her counts are again 0 neutrophils, WBC 0.2, and platelets, blood vary with transfusions. She does have a few visitors with her as her grandma and grandpa ott are with her along with her cousin from florida. We were hoping this would bring her spirits up and praying that the antibiotic will have fewer side effects on her after a few treatments. We have spoken with Karen morrison, Kinsey Morrison’s mother and she is a great help and inspiration, Kinsey went thru the same treatments and responded in the last hour without having a transplant. Please visit her site off the link on this page and read the amazing story and the miracle that happened. Please remember her in your prayers also as she is still in fear of this disease coming back again. We thank all who continue to pray and support us, it is truly a blessing to have so many caring people. God bless
Wednesday, December 31, 2003 6:41 PM CST
Stephanie had to be taken to surgery last night. It seems her infection is fighting its way back as she had high temperatures the last 3 nights and terrible headaches. They also took a biopsy to see if it was a fungal infection again or a ne one forming. She is not very well today with bleeding and headaches, she is mostly just resting and trying to be comfortable. They are taking very good care of her and are trying 2 new antibiotics. Her counts went down today to 4 neutrophils, 0.2 wbc, blood and platlets as she needs them. She is still fighting a very tough battle and we are thankful for all the prayers that continue to give her the strength she needs. May the lord bless everyone throughout the new year, and we pray our little girl will once again be home. God bless.
Monday, December 29, 2003 4:04 PM CST
After one day of Stephanie’s counts dropping back to 2 neutrophils they are back up today at 12. She developed a fever once again last night so they took blood cultures to determine what might be the cause. Stephanie was feeling better sunday but a little down this morning. The rest of her counts still remain the same with no ANC, platelets and blood vary with transfusions, so we will just watch and see if the seeds start to fertilize. It is just a waiting period and preparing the pretesting for the parent transplant. We would like to ask your prayers for a little girl who received a transplant last Monday, she is not well and needs the lords help tonight. We are very thankful for all of the prayers, cards, and the donations received over the holidays. God Bless
Saturday, December 27, 2003 8:59 PM CST
Stephanies neutrophil count went to 12 this morning, that is up 4 from yesterday. This though very small is wonderful news; her body is attempting to produce some cells. As Dr. Margolis showed Stephanie about her flower garden (bone marrow) had no seeds and needed flowers to survive and every garden needed seeds(the reason for the transplant)this miracle is the seeds of life for her. We are very excited, but reserved, as we have went thru this before, but faith and prayer will be the weapon this time.
Stephanie said that her flower bed was just in a drought for now, and the rain would come soon, and the flowers will grow again. She is depressed still but feeling better today and was walking around a bit. She continues to receive cards and that is helping her alot to know all the people that care for her. Please continue to pray, for we have a long road to travel yet. Thank you and God Bless.
Friday, December 26, 2003 10:31 AM CST
WONDERFULL NEWS THIS AM......
Stephanies peripheral blood neutrophils which were 0 and put her in serious risk are up to 8 this morning, all other counts remain the same but this is where it starts. The lord is trully listening to all of our prayers and blessed this family on this christmas. We must believe and pray even harder and give thanks for this blessing, no matter how small it just might be the next begining to another miracle in milwaukee. This Dr. and the hospital with the lord’s help have had many miracles with children, that is why we took her there. Stephanie is excited and thanks everyone for the prayers and cards she is receiving. This improvement, no matter how small gives her hope and that is indeed precious to Stephanie and her belief in the miracle of christmas. May the lord continue to bless each of you.
Wednesday, December 24, 2003 8:29 AM CST
On this christmas eve my wife and I would like to send our warmest thoughts and gratitude to everyone who has visited this site and made donations to support our little girl. We send our deepest appreciation to our family, who have supported us and have been by our side thru these most difficult times. To the nurses and doctors at the Pineville children’s clinic, Raleigh general hospital, West virginia university, Duke university, and Wisconsin Childrens hospital, for providing stephanie with the care needed and being our friends in our time of need. To the people of Pineville and surrounding areas for the support and donations that have truly touched our lives in such a caring and thoughtful way. To my coworkers and friends at Dominion Transmission and the Clarksburg City Plant for the support and donations, these are amazing people who continue to listen and help in our everyday struggle and make it possible for our family to spend more time together thru thier personal sacrifice. This has been a most difficult year for my wife and I, my son, and most of all, Stephanie. We cannot express the appreciation we feel for you that has made this journey easier for our family.
May the lord bless each one of you on this christmas eve,
and on this christmas eve please pray with us for the Miracle of Christmas.
Sunday, December 21, 2003 10:47 AM CST
Stephanie is doing a little better Saturday and this am, her counts are still the same with no improvement but the infection is under control now so that is good news. She is walking around to get some exercise and to improve her lungs. She is upset to be here over the holidays but has received many cards from many caring people and that keeps her spirits up. She is very great full for all the cards. We are now just waiting to see if her counts will come up in the next few weeks, and proceeding with the testing of myself for the parent transplant. The next few weeks will be very difficult with decisions to be made, but we have complete confidence in Dr. Margolis and his staff. This option is the best chance for her to beat this disease if it must be done. We continue to learn more from the classes that we go thru and everything is explained to Stephanie as we proceed with her treatment. We express our thanks to all that have supported this family thru this and pray for stephanie. The lord is with her and he alone knows the path in which she will take. It is in his hands and all we can do is pray. God Bless and thank you.
Thursday, December 18, 2003 10:56 PM CST
Stephanie is doing better today; she is feeling pretty good and eating a little better. Her counts are the same with no improvement. Today we spoke to her Dr. and we had a class in bone marrow transplants, with Stephanie, to help her understand what it is all about. The infection she has is responding to the antibiotics and is much better, she has had no fever for 2 days. They are giving her nutrients thru her central line so her weight has improved by 7 pounds. She still is having bad headaches but they are treating them with medication.
As of today they have found no match for her after searching for an unrelated donor, there is something rare in her marrow that does not relate to any donors. However, the plan as of now is to do a parent transplant from myself to her. This kind of transplant has not been preformed here or by Dr. Margolis so Stephanie will possibly be the first. Dr. Margolis has preformed many unrelated donor transplants and has achieved excellent results, he is also very well versed in this desease and between the cord blood and a parent transplant the parent transplant is her best chance. I can not explain every detail on this site but she is getting excellent care and we truly believe that her Dr. is doing absolutely everything possible. For now, we will wait to see if any of her counts will come up in the next two weeks, and i will start the testing tomorrow and then the preparation for the extraction. This is a very hard decision to make but they explain every detail, have classes on transplants, and many people are involved here in helping us. We thank everyone for praying for us, and supporting Stephanie thru this. God Bless
Monday, December 15, 2003 11:43 PM CST
Stephanie had a rough night last pm but is doing really good today, she was up and walking around and doing some crafts she has. She recieved blood today and will have minor surgery tomorrow to put in a central line for medications and nutrients. She still has her med port but they will need 2 lines for easier access and to keep infections down. Her counts are still the same with no ANC’S wbc-.01; platelets and blood vary with transfusions. She is keeping her faith up and fighting very hard, she has excellent nurses and doctors taking care of her and they spend a great deal of time just talking to her. As we all know she loves to talk and as of the last past months the nurses who have cared for her have become her best friends. She received several cards and really enjoyed reading them and knows alot of people care very much for her and just to see a little smile when she gets mail means a great deal. We continue to thank everyone for all the support and prayers as stephanie continues the fight to beat this disease. God Bless.
Friday, December 12, 2003 8:58 AM CST
Hello, I am now at Wisconsin, arrived wednesday afternoon. Stephanie is doing better since she arrived here. They are taking very good care of her and she is feeling alot better. They hve identified the type of fungus she has and are treating it very aggressively. The Dr. spoke to us and he plans to treat the infection and get her healthy enough to plan for a bone marrow transplant. If possible he would like to wait for awhile to see if her counts would come back up with the new medication. The time frame however will dictate how well Stephanie is doing. Her counts are still about the same, ANC is .0, platelets are 11, and her blood is 8.4. She had a platlet transfussion last night and is having iv antibiotics on a daily basis. She still is not eating very well and her weight is about 60lbs. She will be here at least 4-6 weeks now and she will be assessed about every 3 days. They are searching for a marrow donor now and are hoping to find one before it would become an emergency. Stephanie wants to thank all who those who are praying for her and are fighting this battle with her. We are very thankful for all the family and friends that are supporting us thru these trying times; we cannot express how grateful we are. God Bless each one of you.
Monday, December 8, 2003 9:55 AM CST
Early sunday morning they preformed emergency surgery on Stephanie to elevate pressure on her sinus cavity and also insert a feeding tube for nutrition. I spoke to the Dr. last night and he is treating her with aggressive measures and also said that she is in very serious condition and he is trying to scalelike her first before anything else can be done. She has no ANC's and a 0.1 WBC; they have her in a hep filter room, but making her very comfortable. Please continue to pray for her. Her address is:
Childrens Hospital of Wisconsin
c/o Stephanie Ott ROOM 5514
9000 W Wisconsin Ave.
P.O. BOX 1997
Milwaukee, Wisconsin 53201
Sunday, December 7, 2003 9:43 AM CST
Stephanie arrived in Wisconsin about 430 pm Saturday, she is feeling better and liked the jet ride out there. Everything is going good; they are taking very good care of her. I spoke with the doctor last night and am taking her off the cyclosporin and putting her on Prograf, to help her swelling in the gums so she can eat better. They are first going to find the infection and treat it, and try to get her nutrition back. They are doing several tests on her and my wife and i are very impressed with the plan he has and the care they are giving her. Stephanie has a lot of faith and seemed to be very excited about being there, i spoke to her last night and she said to thank everyone for praying for her. I could tell that she again had that cheerful attitude i had not have heard in a while. She now has access to the computer so please keep sending her words of encouragement. Thank you and God Bless.
Friday, December 5, 2003 6:35 PM CST
Stephanie had to be taken to Morgantown Tuesday night for an infection, she is currently awaiting an air ambulance to pick her up and take her to the Childrens hospital of Wisconsin under the care of DR. Margolis. She is currently stable but very uncomfortable and they are treating her with 5 different types of antibiotics to try to find the right one for the infection. She was scheduled to be flown by jet this am but the storm prevented them from flying so it will be Saturday morning or when it is safe. They are currently doing a search and specialize in unrelated bone marrow transplants; with the data researched it affords Stephanie possibly a 50-55 percent chance to survive. This we believe is the best chance for Stephanie as this infection is very serious and together with Dr. Keller and Dr. Margolis, this is the time to start this process and insure the best treatment for Stephanie. This will be a difficult time and i will update this as frequently as possible, and give her information at Wisconsin as soon as we have it. Please continue to email this site as i will print it out and show it to her, she needs all the prayers and support that she can get. God Bless and thank you.
Sunday, November 30, 2003 6:49 PM CST
We have returned home after a little time away. Stephanie is doing pretty well, counts are still the same except the WBC is now 0.1. She was at morgantown tuesday, wensday and thursday. We did have a small birthday party at her grandparent’s house, and we sincerely thank all those who sent cards, wishes thru emails and prayers. We also thank the nurses at the pediatric dept., infusion center at WVU for the party and help thru the visit. Stephanie was very happy and knows alot of people are praying for her to beat this and it does really mean a lot to both her and us. We are currently going to talk with another doctor at the childrens hospital in wisconsin for maybe a better chance with a mismatched donor than the Cytoxan. Dr. Keller has spoken with him and faxed the hla typing and I will call him tomorrow. It might seem we are grasping for straws but i believe we must do everything possible to increase her chances. Dr. Keller will also change 2 medications that we learned could possibly make an improvement in her WBC count. With a very special thanks to everyone who made my little girls birthday, indeed a very specail one. God Bless you.
Tuesday, November 25, 2003 5:54 PM CST
Stephanie is currently in Morgantown today and tomorrow. She is receiving blood and platelets. She has been pretty good the last week and enjoyed a weekend with her aunt cathy. We are currently in Bridgeport for the holiday so i apologize for the long delay in updating this page. Stephanie will be 13 tomorrow so we are having a little party and hopefully she will be out of the hospital by then. Her counts are about the same except for the white cells are dropping, currently at 0.2. We are weighing the few options and trying to make the best decision that will have to make shortly, please continue to pray for us as this time draws near. We would like to thank Reliegh General Hospital, outpatient surgery, for the wonderful party they gave Stephanie Friday, they put a lot of effort and time into this and it is very appreciated. Again, we thank everyone who continues to support us and prays for our little girl. (Teenager). God Bless.
Friday, November 14, 2003 11:06 PM CST
Stephanie is doing about the same, counts are wbc-0.3, platelets 9 and blood is about 10. She went to Morgantown Monday thru wednesday and was in beckley today. She recived blood and platelets Monday and Tuesday and platelets today. Still having bad headaches and another high level cyclosporin scare monday. She just does not seem to be tolerating the cyclosporin very well recently. They ran tests on her liver to see if it had been damaged, but no results yet. Another bridge to cross in this treatment. Time seems to be running out for this to work and another difficult decision to be made, please pray with us, for the lord to guide us thru this and to be with our daughter as she continues to fight this battle. God bless and thank you.
Friday, November 14, 2003 11:06 PM CST
Stephanie is doing about the same, counts are wbc-0.3, platelets 9 and blood is about 10. She went to Morgantown Monday thru wednesday and was in Beckley today. She received blood and platelets Monday and Tuesday and platelets today. Still having bad headaches and another high level cyclosporin scare Monday. She just does not seem to be tolerating the cyclosporin very well recently. They ran tests on her liver to see if it had been damaged, but no results yet. Another bridge to cross in this treatment. Time seems to be running out for this to work and another difficult decision to be made, please pray with us, for the lord to guide us thru this and to be with our daughter as she continues to fight this battle. God bless and thank you.
Friday, November 14, 2003 11:06 PM CST
Stephanie is doing about the same, counts are wbc-0.3, platelets 9 and blood is about 10. She went to Morgantown Monday thru wednesday and was in Beckley today. She received blood and platelets Monday and Tuesday and platelets today. Still having bad headaches and another high level cyclosporin scare Monday. She just does not seem to be tolerating the cyclosporin very well recently. They ran tests on her liver to see if it had been damaged, but no results yet. Another bridge to cross in this treatment. Time seems to be running out for this to work and another difficult decision to be made, please pray with us, for the lord to guide us thru this and to be with our daughter as she continues to fight this battle. God bless and thank you.
Sunday, November 9, 2003 12:30 AM CST
This past week has been hard on Stephanie. She is sore all the time in her joints and just not feeling well at all. I spoke to Dr.Keller and he said she may have serum sickness and has put her on high doses of prednisone. Also we got a cyclosporine count back and her level is way to high (489)Since we don’t need a repeat of what happened the last time her level was high in Morgantown and her having another seizure, the doctor has recommended stopping her cyclosporine for a couple of doses and restarting it again on Monday. He said that he wants a kidney function test done on her and see if her creatinine levels are high.
She is really excited about her birthday coming up and can’t wait to open all her presents.
Keep praying.....I know God has a plan for her and something good will come out of all of this.
God Bless
Friday, November 7, 2003 4:01 AM CST
Stephanie not very well the last few days, just feeling bad all over. She has lost 4 pounds again, but her platelet count seems to be holding around 12 the last 3 transfussions. Hopefully this will continue. She is going again today for her platelets and blood. We continue to search for a bone marrow match and research new clinical trials for this disease, there is just no definitive answer to what to do next. But with prayer and faith hopefully that decision will not have to be made. God Bless and thank you.
Saturday, November 1, 2003 10:33 PM CST
Stephanie is doing well today; she received her transfusions Friday and tolerated them well. She has been tired a lot lately but the headaches have not been so bad this week. She continues to check this website and read the emails, and watches a lot of TV. But there is not a lot to do in the house, but we are going to redo her room shortly so it will be a little change for her. She will be 13 on the 26th of this month, a TEENAGER at last. She will go back to the hospital tuesday for blood and platlets, her last counts were: WBC 0.4, PLATLETS 8, and AND BLOOD 7.4. No real decrease or increase but staying about the same. We ask that everyone continues to pray for her as she continues to fight and with help from the lord, she will beat this awful disease. She still has her mustard seed and Heaven, who is ever so much, watching over her. God bless.
Monday, October 27, 2003 8:06 PM CST
We made it back from Morgantown last night and Stephanie is feeling a little better. She was admitted into the hospital thursday for a fever. They did blood cultures but all was good and there were no infections. She had to get platelets again today and it seems to be a struggle with the hospital at Beckley just to do this anymore. It seems the longer this continues the more problems we run into, not only dealing with this disease but struggling to argue with the health care system. We do thank all the caring healthcare professionals that help us. Please continue to pray for Stephanie as she is trying to find some hope in the treatment she is undergoing. Thank you and God Bless.
Monday, October 20, 2003 1:22 AM CDT
Well stephanie got her platelets Friday and is feeling pretty good. She will have to get blood and platelets Tuesday and then back to Morgantown thursday. She was going to go up and see some show horses today but had a bad headache, so we will try to do it again soon. A man that lives up the road from us had invited her to come up and see the horses and we thank him for his kindness. The people from this town have been very giving and thoughtful, from complete strangers to people we know. A local motorcycle club did a run for her that raised over five hundred dollars, and the stores that have her picture in them have collected numerous amounts of money to help with the costs. We do appreciate all that help and support us, though we cannot thank you enough. We continue to have faith and pray for her and believe that she will again someday live a normal life and enjoy the many pleasures it can bring. God bless and thank you.
Tuesday, October 14, 2003 9:15 PM CDT
Stephanie doing well, she received platelets today. Her counts are about the same, nothing really changing much. She has been doing home schooling and we have been going out to the park where she can get out but not be around any people. But she enjoys being outdoors and watching the deer. She has been pretty good the last week, a few days of bad headaches and pains but overall, a good week. We apologize for not updating this site for awhile, and we will do better but with work, running to the hospital and getting her out sometimes there just is not enough time in the day. We thank everyone for sticking with us thru this and we are very greatfull. God bless all and please keep praying. As the lord does not give up on us, we shall not give up our faith this will work in his time.
Saturday, October 4, 2003 4:38 PM CDT
Stephanie recieved platelets Friday and is feeling pretty good. Except for the normal daily aches and pains. Her counts were 0.7 for the white blood cells, 5 for the platelets, and 9.0 for the red blood cells. So, the white cells took a turn for the good, hopefully they will keep coming up so she can at least go out somewhere soon. She continues to look and talk with other people who have this and are going thru what she is and it sure helps her to understand that this can be beat, and one day she will be able to enjoy life as most teenagers do. We cannot thank everyone enough for the support and prayers, but we will continue to do so. May god bless you all? Thank You.
Monday, September 29, 2003 3:54 PM CDT
Just returned from Morgantown, Stephanie is feeling a little under the weather but better than normal. It seems we were mistaken when we thought her counts came up, the Dr. explained what had happened but no luck with her counts yet. I guess we got excited to fast, but after all she goes thru, we try to grasp any good news. She had blood and platelets and everything checked out fine with the neurologist, she has lost ten pounds but we are hoping it was the pill that she was taken off. We are trying to get her to eat so she will not have to back soon. She still can not go anywhere, her white count back to 0.3. Thank You and God bless.
Sunday, September 21, 2003 7:11 PM CDT
A true blessing today as we took Stephanie to the hospital to get blood, her HGB on Friday was 7.4, today it was 8.4. Her WBC was up from 0.3 to 0.5 and her platlets were 34 thousand. We have been excited before but only to be let down, but this is the best news in a while. We thank the lord on this sunday for a blessing that we knew with faith would come. We thank everyone for the prayers and the continued support. Please continue to write and encourage her. GOD BLESS.
Wednesday, September 17, 2003 9:30 AM CDT
Stephanie went again, yesterday for yet another platelet transfusion. She has felt pretty good lately. Sunday we took her and her brother to Twin Falls state park for a little time outside. They had a blast!!! They played ball and swung on the swings and then enjoyed a treat from the Dairy Queen. The counts before the platlet transfusion on the 16th where...
Platelets...6
Red blood cells...11.1
White blood cells......0.5
We continue to fight to bring the white blood cell counts up along with the other cell lines, and we know that it WILL happen; we just have to have patience.
God Bless
Sunday, September 14, 2003 2:56 AM CDT
Stephanie recieved blood yesterday and is still feeling pretty good. We received an email from a woman who has SAA and was treated exactly as Stephanie, she too lost her white cell count, platelet count, and blood counts were low. She also experienced the same symptoms as Stephanie but now she is transfusion free and starting to wean off the medication. She said it took 6 months to see the counts rising so it indeed gave Stephanie a big boost to know that this does work. So we will keep praying and be patient. Since Stephanie can not go out anywhere, she has been looking on the computer for clothes and shoes (an idea from her doctor). Her teacher will start Monday for her school at home, so she is ready for that. Thank you all for your support and prayers. God bless each one of you.
Thursday, September 11, 2003 3:15 PM CDT
Stephanie still feeling pretty good, she will go and get blood and platelets thursday. We had a good day wednesday; we took Stephanie out in the woods to our hunting camp. It was a long drive for one day but she enjoyed getting out, besides being in the hospital. Hopefully now we have her levels of cyclosporin right, we will start to see some response in her treatment. We thank all who continue to support us and visit this site, please continue to write her, she enjoys reading the mail. Thank You....
Monday, September 8, 2003 5:28 PM CDT
Stephanie is back home once again, she is doing well and glad to get out of the hospital. She will have to get platelets tomorrow at Beckley. Still did not find the cause of the fever so we are still watching it, put her on more antibiotics. (More pills-yuck). Good news is it was not the rejection of the platelets. We know the lord is with her and will heal her in his own time and his own way. He gives us the strength and courage to endure this hardship, but when she is better, I believe she will truly make a difference to many people. First we give thanks to the lord for the many blessings he gives us and then we thank those who continue to pray for stephanie.
A special thanks to our families who are always there to help when they are needed.
Saturday, September 6, 2003 2:48 PM CDT
Stephanie is feeling better, still has a slight fever so they took blood cultures and will see if they grow anything. Her platelets were about 27,000 today, after recieving them on friday morning, blood was about 8.4, and white cell count was 0.2. Dr.Keller is going to try finding out where the fever is coming from, so mostly they are just watching her and giving antibiotics. She is thankful to everyone who writes to her, and knows that she has a little angel to watch over her. God Bless and thank you.
Friday, September 5, 2003 4:25 PM CDT
Stephanie recieved platelets last night but still had blisters and a fever of 102.00. She is at Morgantown now; i will update again when we find out something. Please continue to pray for her, as she continues to fight.
Wednesday, September 3, 2003 12:41 AM CDT
Stephanie was moved from intensive care to a room on Monday and monitored thru Tuesday afternoon after receiving platelets. Dr Keller let us bring her home last night, trying to be carefull not to get any infections that are in the hospital. The tests showed that she suffered a seizure but the neurologist said that there should be no long term effects. She got 3 new medications for blood pressure, seizures, and antibiotics. She is not very well today, has been sleeping with a headache, but at least she has beat yet another hurdle thrown her way. For a few days it was very hard and frustrating to watch her lay still and not move but with prayer she again woke up and will beat this in time. Thanks to Dr. Keller and the nurses who cared for her. We also would like to thank our family members who helped care for our son, and supported us thru this. Again thank you for your prayers, thoughts and continued support.
Saturday, August 30, 2003 7:29 PM CDT
Stephanie was admitted into intensive care Friday after her received platelets. Her blood pressure was 184/124 and her cyclosporin level was too high. Friday night at 1100 pm she had a seizure induced by the blood pressure and high levels of cyclosporin. She finally did say a few words tonight, and for awhile she had us worried that this had affected her far more than we knew. They are doing several different tests on her to check her brain for any damage (no results yet). They also gave her several new medications including seizure meds, blood pressure meds and new antibiotics. She is currently pretty much non-responsive but does know where she is and common other questions, she is running a fever (102.5) so they are watching this also. This is the nature of this horrible disease as she was fine thursday and in an instance it all changed. She is at Morgantown in pediatric intensive care bed 5. I will print everything written to her and take it to her. Thanks to everyone for the support and the prayers for our little girl.
Tuesday, August 26, 2003 8:38 PM CDT
Stephanie had a platelet transfusion today and is feeling pretty good. Her Blood counts are down 6.6 as of today, but she says she is not feeling bad at all.
She will be going to Morgantown this Friday to get a blood transfusion and to check her Cyclosporine level. She really wants to go to school but can`t because her white cells are dropping. Thanks to all that continue to pray for Stephanie.
God Bless
Platelets---13
Red Blood Cells---6.6
White Blood Cells---0.4
Saturday, August 23, 2003 0:41 AM CDT
We returned home from Morgantown today and i am sorry to report that the news was very frustrating, it seems Stephanie’s counts dropped alot, her total ANC went from 548 to 340, white cells were up to 1.9 but dropped to 0.6 and her other counts were steadily dropping from just receiving platelets. Her cyclosporin level was too high also and still has bleeding that they can not pinpoint. She will go back up Friday for more tests. But the good news is she remains active and is feeling better than normal, she did gain around 8 pounds and is eating well. I am researching to see if there is a pattern to the serum that might cause this. Thank you for all the prayers and please continue to write to her, she continues to keep her spirits high. God bless.
Tuesday, August 19, 2003 10:14 PM CDT
We are sorry for not updating this in awhile.
Stephanie went today and received a platelet transfusion. She is getting blood blisters in her mouth again. She was supposed to have an appointment at Morgantown today but we had car trouble over the week-end and had to cancel till Thursday. She will be in Morgantown Thursday the 21st which will be her first two week appointment since the treatment.
She is looking forward to the day she goes back to school, which won’t be anytime soon until her counts come up. Her counts as of today are,
Platelets.....6
White blood cells...1.3
Red blood cells.....8.6
Once again we want to thank everyone for all the cards and prayers for our little girl.
God Bless
Saturday, August 9, 2003 5:38 PM CDT
Stephanie will go on sunday to receive platelets, was going to go today but we had a brake line go bad on the car. But the lord was watching over my faimily as it broke in the driveway and not on the road to Beckley. Stephanie is doing well, still sore but up and getting better. We are anxious for this to work and have faith it will. The hospital is working with us to insure she is as safe as possible when she receives the transfusions. A special thanks to all who continue to pray and support us thru this, it truly helps more than you will ever know. God Bless
Thursday, August 7, 2003 2:46 PM CDT
We returned from Morgantown today around 2pm, Stephanie is doing well, just a little sore, but that is expected from the serum. Her blood pressure was high yesterday so they kept her for an extra day. The serum dropped her white count to 0.2 so now we are being very careful about infections. However her white count should come back up, and the median time for the treatment to work is 52days. We thank everyone who came to see her in the hospital and sent her cards, and gave us support thru this. We faced a few tough times last week and things did not look well, but we were truly blessed and everything went well. We now must have faith this will work. God Bless and thank you.
Sunday, August 3, 2003 9:47 PM CDT
Stephanie is not doing very good, the first treatment she had a severe reaction, the second did pretty good and now she is on the third one and so far it is doing good. She now has dropped from 2.9 white cell counts to 0.3 and an ANC of less than 500. She also has moderate blood in her urine and they can not find where it is coming from, she is receiving blood and platelets, and several medications to comfort her. God Bless.
Tuesday, July 29, 2003 9:12 PM CDT
Stephanie recieved platelets today and is doing well, just a headache and a little tired. She has done well the last week. We will start the ALG treatment friday at morgantown and it will be for 5 days. She will have 90 days to respond to this, and with a little blessing this will work. My wife and I believe the next several months will be the hardest and most critical for Stephanie, she has endured enough in the last year to last a lifetime. Many continue to send cards, and many are praying for her. We thank you for all the support. God Bless
Thursday, July 24, 2003 4:32 PM CDT
Stephanie is feeling good so far this week; she received platelets Tuesday and will receive blood and platelets Friday. Her counts dropped quickly for some reason, her blood went from 11 to 8 in 4days, WBC is 2.4, and platelets were 6 Tuesday. The dates have changed for the second treatment; she will go to morgantown on aug. 1-5. We are asking everyone to continue to pray for her as we are going to give this the best opportunity possible to help her. We can see some of the effects that this is starting to depress her, the e-mails and cards help her very much. We know the lord knows what we need before we pray, I believe he has a reason and will guide us to the path he has chosen. Thank You and God Bless.
Friday, July 18, 2003 6:58 AM CDT
We have returned from Morgantown, we got back home about 930pm thursday night. Stephanie is doing well but had a few problems with the ivig, she recieved blood, platlets and the ivig while in Morgantown. We discussed with her doctor the options again and decided to go ahead with the rabbit serum to see if it would work. We were in agreement that this would be better to go in three phases, first a second attempt of the rabbit serum since the ATG failed, and then wait for 90 days to see if this will work. Second, if this fails we will do the Cytoxan treatment and the last phase if none of the above will work is the stem cell transplant at duke. Both doctors are in agreement that we have to act now and do not have the option to wait; Stephanie’s white cell count has dropped to 2.4. She will start the treatment monday or tuesday at morgantown, she will be there for 5 days. Stephanie is staying strong but we believe this is starting to take its toll on her. Thank you for all the prayers and donations for we sincerely appreciate them. GOD BLESS
Sunday, July 13, 2003 3:04 PM CDT
Stephanie is on her way to Morgantown to receive the IVIG treatment starting on Monday. She received platelets Friday and is doing pretty good, except for some headaches and still some sinus trouble. She should be home Friday if all goes well. We will keep everyone posted on how she is doing and how she responds. We thank everyone for the support thru this, and the kindness shown to our daughter. She is staying very strong thru all the e-mails she reads and knowing so many continues to pray for her. GOD BLESS
Monday, July 7, 2003 3:29 PM CDT
Sorry for not updating the page for a while. We returned today from our trip to Morgantown. Stephanie received blood and platelets on thursday and we discussed our options and the next step to take with her doctor. He spent a good bit of time with us and as of now Stephanie is going to first go to Morgantown to undergo an IV/IG from the 14th to the 18th of july to try to stabilize her platelet count. She will most likely undergo a Cyclophosphamide treatment at Morgantown within a few months. This treatment will destroy all platelets, red blood cells, and white blood cells and will in theory start to regrowth new ones, and if this is not successfull she will go to Duke for the cord blood transplant. Although no decision is a good one to make we believe that we are doing the best we can and giving her the best chance. Stephanie was feeling pretty good this weekend, she spent time with her aunt Kathy, her grandparents, and a few days at her grandparents camp on the williams river. She really enjoyed herself and had a lot of fun. She will be getting platelets Tuesday and Friday from this point on to insure her counts do not drop to low.
We thank everyone for praying for Stephanie and the e-mails that she loves to read, and the donations in her account. GOD BLESS.
Saturday, June 28, 2003 0:51 AM CDT
Today,was another bad day for Stephanie she had a headache all day again. We received news on the CT Scan that was done on her last Tuesday...Pneumonia is gone, but she has a severe sinus infection still, which would explain the headaches. We are taking her to Morgantown to see her doctor Thursday and she has a appointment to see a Ear, Nose and Throat doctor also. She will most likely get blood and platelets on this day too.
We will try to keep everyone informed on her this week as much as we can. Thank you all for the write-ups in her guestbook, she will read them when she gets to feeling better and respond to those she can, as she tries to each and every one of them. Thank you for all the prayers and continued donations to her account.
God Bless
Thursday, June 26, 2003 10:01 PM CDT
Today,Stephanie had a bad day. She woke up with a migraine and had it about all day. We took her to have her blood drawn and her counts are going down again, which means she will be going in for blood soon.
We are still waiting on the results from Duke; hopefully it won’t be much longer.
God Bless all
Wednesday, June 25, 2003 9:40 AM CDT
Yesterday,Stephanie went to the hospital to receive two bags of platelets .When we had a CBC done Monday her blood and HCT had stayed the same as last week but her platelets had dropped to 11.She had gone 7 days without blood blisters!!...The prayers are working!!!
She is doing okay except for waking up dizzy and tired, I think that it is the new drug the doctors have put her on so she won’t get immno-pneumonia.We also had a CT Scan done of her lungs and sinus to see if she has gotten any better from the pneumonia she does have. We should know the results of that test in a day or two.
Sunday her grandparents traveled all the way from Bridgeport and took Stephanie and William to the park for a picnic and to the Dairy Queen for a icecream.Last night she went outside to catch lightning bugs with her little brother and it felt so good to see her laugh and having fun like a child should.
The summer is going to be hard on her because she is limited to what she can do. But she does love to read, do crafts, and checking her guestbook daily.
We still are waiting on the results from Duke on the rest of the tests. Thank you for the continued prayer for Stephanie and the cards and donations to her account.
God Bless
Saturday, June 21, 2003 5:38 PM CDT
Stephanie has been feeling good the last couple of days, she received some crafts in the mail and has been consumed in playing with them. We will get the final results tuesday of all her tests from Duke. We had a brief conversation with her doctor in Morgantown and he is also aware of the results and will help us decide the best treatment for Stephanie. They are however leaning toward the transplant, we have researched other treatments but it is all confusing.
Depending on the doctor and the research there is just no good news to be found. We put our trust in the lord and just pray for the knowledge to make the best choice.
Thank you for the prayers and all the e-mails to Stephanie, she really enjoys and finds comfort in these. Please say a prayer for all the soldiers still fighting for our freedom in Iraq; they sacrifice all so we might have these opportunities. God Bless.
Wednesday, June 18, 2003 8:13 PM CDT
Stephanie went to the hospital today to receive more platelets; she had blisters and was bleeding from her mouth. She has been there most of the day, however she loves to visit the nurses at outpatient surgery in Beckley. It is almost like her second home. I am still researching all the options and waiting for the results at Duke. Our thanks go out to the many people who pray and continue to support our daughter with all the words of encouragement.
Monday, June 16, 2003 5:50 PM CDT
Stephanie recieved platlets sunday again and feeling a little better today. She has not been feeling well lately. I spoke to the nurse at duke today, not all the results are back, but the one she does have shows no new growth of platelets or red blood cells. Her bone marrow is about the same as when she started the ATG treatment. We still have to wait for the rest of the results and to get the best recommendation from duke. We are looking into the clinical trail, phase 2, for chemotherapy and drug treatment which seems at least to give her a better chance than the cord blood transplant. I have spoke with the DR. at Johns Hopkins in Baltimore and they have had 9 of 17 treated after ATG treatment failure and respond to this. Also, we would have the transplant to fall back on if it fails. We will wait until we speak to DR. Martin at Duke and DR. Keller at Morgantown to decide the best for our daughter. Thanks to all who continue to pray, and I know the lord will guide us through this difficult decision. GOD BLESS
Thursday, June 12, 2003 1:03 PM CDT
Stephanie is still not well today after receiving her transfusions. She still is having bad headaches and just generally not feeling well. We are researching different ways to improve Stephanie’s chances and talking to different specialist in this field, but are waiting for the results from Duke and the recommendation from her doctor. I thank everyone for the e-mails and donations to her account, but most of all for the prayers that keep her strong. Stephanie is sending out her own cards out to those she knows have donated to her account but wanted everyone who has donated to know she is very thankful. God Bless and Thank You.
Tuesday, June 10, 2003 9:39 AM CDT
Today stephanie is receiving platelets and blood, she is not feeling well. She has been having bad headaches and sleeping a lot. Yesterday they gave us a breathing treatment machine to use her nebulizer to try to clear her lungs up. She still although keeps that same smile, and is still very strong and hopeful. Although we have explained what Dr. Martin told us her chances were to Stephanie, she seems more intense to look at the future and what she can do when this is over. She keeps teaching and I keep learning. Please continue to pray. Thank you and God Bless.
Saturday, June 7, 2003 10:52 AM CDT
We are back from Duke and would like to thank Dr. Martin and his staff for a very pleasant and helpful visit. Stephanie had a very busy schedule with all of the testing. We started at 8am Thursday and ended about 6pm Friday night. The tests that were back showed her spleen to be normal, a c/t scan showed an infection in her lungs ( in which they are treating) and severe pansinusitis. Stephanie also received platelets Friday morning before her bone marrow aspiration which went very well. Stephanies white cell count were 4.1, hemoglobin 10.2, hemacite 0.29 and red cell count was 3.35. We will have to wait about 2 weeks for the biopsy to return. After all the testing we spoke to Dr. Martin and learned several things we did not know. Now we understand that a 5/6 cord blood match would only give Stephanie a 20 percent or less chance of survival rate in which until the biopsy returns, he did not recommend. He will give us his final recommendation in a few weeks after the results of the biopsy are back. Although now we have learned that a unrelated bone marrow transplant is a serious risk in aplastic anemia and very few have been successfull we can only pray that a 6/6 match can be found to increase Stephanie’s chances. Please continue to pray for us as we go thru these difficult decisions as no parent should have to make. Thank you for all the prayers and e-mails and to all who have donated to Stephanie’s account. God Bless and Thank You.
Monday, June 2, 2003 11:15 PM CDT
Stephanie is doing very well; she has been active all weekend and is looking forward ot going down to Duke wednesday. She is very upbeat about this and even when we explained she would lose all of her hair she told me that she would have a fuzzy head like mine. She is staying so strong and has faith this will work, as do we, but sometimes thru all of the suffering she endures I do not know how she does it. She will go tomorrow for more platelets, her cell counts were all down today. Stephanie is greatfull for all of the e-mails, cards and donations, and especially the prayers. She realizes now how many people care about her and are praying she will get better and it lifts her spirits daily. In the following weeks my wife and I will have to make a difficult decision about the transplant, it seems that without a sibling match and after an atg treatment has failed, studies show a 60% chance of success. We know however, with faith and prayers that the lord will listen and lead us to the road he has chosen for our daughter. Again we cannot thank each and every person enough that has helped Stephanie and our family, thru prayers, cards and donations. You have touched Stephanie and our family. Please continue to pray for Stephanie as she continues to be strong. God Bless and thank you.
Thursday, May 29, 2003 9:06 PM CDT
Stephanie recieved platlets today and is feeling pretty good. She is looking forward to the trip to Duke wednesday and she is hopeful, as are we that this is a start on a road to beat this. We decided to explain the risks involved and just what she actually had to go thru to undergo a transplant, from the best case to the worst case. At her age we believed she needed to know the truth as we have kept some of the worst things that could happen to ourselves. She showed us a small card that the Baptist Church had given her with their donation that said ...if you have faith as small as a mustard seed....nothing will be impossible for you. She keeps this card with a small mustard seed by her bed, and for such a small little card it means the world to her. She carried a picture of when she was three to the hospital today and showed it to the nurses, It took me by surprise but I realized how much she has grown and how she is trying to just be a normal teenager, but cannot. Children can say alot if you will just listen, believe me, I have been taught a few lessons in the last two days from my daughter. I believe she has enough faith to move a mountain. Stephanie would like to thank WOAY TV and Michelle Kreutzer for the interview with her and for their words of encouragement. We hope this will put an understanding of severe aplastic anemia out to people and in some way help another person deal with this a little easier. Thank you for the prayers and the e-mails, this helps in more ways than you will ever know. We sincerely appreciate the donations to her account. Please pray for Stephanie as she continues to stay strong. God Bless.
Tuesday, May 27, 2003 4:11 PM CDT
Today stephanie went to get more blood work done; she is good spirits and is feeling pretty good. We have talked to the administrator at duke and she will be going down on the 5th and 6th of June to do the initial workup for the transplant. After this is complete a decision will be made of when to begin the transplant, then she will be going down for a 1 to 3 week period for all the workups for the transplant and then admitted to the hospital where depending on the success of the transplant, a 1 to 2 month stay, and then another period of clinical visits.
But for now we will take it one day at a time, try to keep everyone updated and pray for Stephanie as it is in the Lord’s hands now. Again, we would like to thank everyone for thier support and for the prayers for our daughter. We also appreciate all the donations received for Stephanie. Stephanie would also like to mention the First Baptist Church in Ravenswood, Mr. Fred MacConkey drove from Ravenswood to Pineville this morning to donate money for Stephanie, and to let her know that there many prayers and faith in the lord will help her thru this. We are very grateful, and Stephanie was truly touched. God bless you.
Monday, May 26, 2003 7:55 AM CDT
LAST NIGHT DR. MARTIN, A TRANSPLANT TEAM DOCTOR FROM DUKE CALLED AND EXPLAINED THE INITIAL STEPS OF A TRANSPLANT AND THE RISKS INVOLVED. HE EXPLAINED THAT IN THE INITIAL STEPS STEPHANIE WILL HAVE TO UNDERGO SEVERAL TESTS INCLUDING ANOTHER MARROW ASPIRATION, BLOOD TESTS, AND INITIAL WORKUPS. HE ALSO TOUCHED UPON THE RISKS AND THEY WERE MORE INVOLVED THAN WE INITIALY EXPECTED, SINCE WILLIAM WAS NOT A SIBILING MATCH IT REDUCES THE CHANCE OF SUCCESS AND UNTIL HE HAS THE RESULTS OF THE WORKUPS THE PERCENTAGE OF A SUCCESSFULL TRANSPLANT WILL NOT BE KNOWN. DR. MARTIN EXPLAINED STEPHANIE WILL HAVE TO GO THRU INTENSE CHEMOTHERAPY TO KILL ALL CELLS AND I GUESS WE KNEW THIS BUT NOW IT IS MUCH HARDER TO DEAL WITH KNOWING IT IS CLOSER. THE RISKS INVOLVED ARE NOT EASY TO DEAL WITH, BUT WE WANT TO SEE OUR LITTLE GIRL GET BETTER.
STEPHANIE IS NOT FEELING TO GOOD LAST NIGHT, THE TRANSFUSIONS ARE CLOSER TOGETHER AND NOT LASTING AS LONG. SHE HAS DEVELOPED A COUGH, AND A LITTLE SHORTNESS OF BREATHING. WE HAVE READ AND SOMETIMES THIS IS A PROGRESSION OF THIS DESEASE, BUT WE HOPE IT IS JUST A COLD. THE DR. HAS GIVEN HER A BREATHING TREATMENT TO HELP. I WILL UPDATE THIS AGAIN WHEN WE KNOW A SPECIFIC DATE, PROBABLY IN THE NEXT WEEK. THANKS AGAIN FOR THE E-MAILS AND SUPPORT, PLEASE PRAY FOR STEPHANIE AS WE KNOW THE LORD HAS A PLAN AND ALL WE CAN DO IS PUT OUR FAITH IN HIM.
Saturday, May 24, 2003 10:55 AM CDT
STEPHANIE IS RECIEVING HER BLOOD TRANSFUSSION TODAY AND EVERYTHING WENT FINE WITH THE PLATLETS LAST PM. SHE IS DOING WELL AND WOULD LIKE THANK EVERYONE FOR THE E-MAIL NOTES, AS SHE LOOKS FORWARD TO READING THEM. WE WOULD LIKE TO MENTION A FEW PLACES AND PEOPLE WHO MAKE THIS A LITTLE EASIER TO DEAL WITH ON AN EVERYDAY BASIS. PINEVILLE CHILDRENS CLINIC, RALEIGH GENERAL HOSPITAL OUTPATIENT SURGERY STAFF, DR. FRANK KELLER, DR. LARSON OF THE CANCER TREAMENT CENTER, THE BLOOD BANK STAFF,MAKE A WISH FOUNDATION AND ALL THAT PRAY FOR HER DAILY.
THESE PEOPLE TRULY MAKE A DIFERENCE IN HER LIFE AND ARE OVERLOOKED UNTIL NEEDED, BUT BELIEVE US THEY ARE TRUE PROFESSIONALS WHO TRULY CARE. WE COULD NOT THANK THEM ENOUGH.
Friday, May 23, 2003 4:24 PM CDT
STEPHANIE RECIEVED PLATLETS TODAY BUT THE BLOOD WAS NOT A MATCH SO SHE WILL GET IT TOMORROW OR SUNDAY. SHE IS IN GOOD SPIRITS BUT EXCITED TO GO GET THIS OVER WITH SO SHE CAN BE BACK IN SCHOOL AND BE ABLE TO GO DO THE THINGS A 13YR OLD GIRL CAN ENJOY. WITH PRAYERS, WE KNOW THIS TRANSPLANT WILL WORK. AGAIN, THANKS TO EVERYONE WHO SENDS E-MAILS AND KEEPS HER IN THIER PRAYERS.
GOD BLESSES THOSE WHO DONATE BLOOD SO OUR DAUGHTER MAY HAVE THE CHANCE TO SURVIVE THIS CONDITION.
Thursday, May 22, 2003 10:04 AM CDT
Stephanie is having a hard time this week. She has a really bad cough. I took her to the doctor Wednesday and he said she had crackles in her lungs and she may have pneumonia. We took her to the hospital and got x-rays and her lungs are fine, according to them. The problem is they don’t know what kind of meds to put her on because she is taking so much now that they don’t want to make her worse. She is still in high spirits and looks forward to reading her webpage everyday and see all the journel entries. Her platelets have dropped again since Sunday they are down to 9, Red blood count is 8.8, her white blood count is dropping too,it is 3.9.
One of her jars she put in a store here was stolen last week some time. But, she said she will put another one in there, and check it more often. Thanks to all that have signed her guestbook. She will try when she feels better to e-mail more Thank you e-grams.
Thursday, May 22, 2003 10:04 AM CDT
Stephanie is having a hard time this week. She has a really bad cough. I took her to the doctor Wednesday and he said she had crackles in her lungs and she may have pneumonia. We took her to the hospital and got x-rays and her lungs are fine, according to them. The problem is they don’t know what kind of meds to put her on because she is taking so much now that they don’t want to make her worse. She is still in high spirits and looks forward to reading her webpage everyday and see all the journal entries. Her platelets have dropped again since Sunday they are down to 9, Red blood count is 8.8, her white blood count is dropping too,it is 3.9.
One of her jars she put in a store here, was stolen last week some time .But, she said she will put another one in there, and check it more often. Thanks to all that have signed her guestbook. She will try when she feels better to e-mail more Thank you e-grams.
Sunday, May 18, 2003 3:36 PM CDT
Stephanie has just returned from the hospital this afternoon, after receiving a platelet transfusion. Her spirits are high that the transplant at Duke will work and that she can go soon. Currently we are waiting for a call from Duke University to take Stephanie down for another test to compare antigens with the 5/6 match they have found. We are thankful for all who write to her and continue to pray as this really makes her day to read all the e-mails. Stephanie has put jars in a few stores where we live, and the people here have given her about 56.00 dollars from one store and 48.00 from another. We are very grateful to all who have donated to help her, this account will be for her to make her stay at Duke a little better. If there is money left in the account when Stephanie returns we will donate it to another child that must go thru this procedure. Again, thanks to everyone and please remember Stephanie in your prayers.
Sunday, May 18, 2003 3:07 PM CDT
It is getting closer to the date we have to go to Duke. They have a 5/6 match of cord blood on hold for her up there. The doctor says that it is a wonderful match because a 5/6 is like a 6/6 match in bone marrow. And it will be much easier on her. She had a platelet count of 0 Monday, and we had to do a stat transfusion on her. She was released that night and they got her platelet count back up to 68,000 before she had left the hospital. But, no sooner does she get the transfusion her bone marrow starts to kill what they put into her, and we have to do it all over again in a couple of days again.
Sunday, May 4, 2003 10:31 PM CDT
This page has just been created. Stephanie was born on November 26, 1990. In August of 2002 she was diagnosed with severe aplastic anemia. We are scheduled to go to Duke University for a bone marrow transplant as soon as a bed opens up for her. Stephanie has been fighting this for the last 10 months and we hope you will join us in our prayers for her.
We have set up an account for donations to help with the costs while we are at Duke. We will need to stay there for as many as four months.
C/O STEPHANIE OTT
FIRST COMMUNITY BANK
CORNERBANK AND CENTER
P.O. BOX 249
PINEVILLE, WV 24874
Sunday, April 6, 2008
Subscribe to:
Posts (Atom)