History

Sunday, August 31, 2008 8:47 AM CDT

HELLO EVERYONE!!! I HOPE THAT YOU ARE ALL DOING WELL THESE DAYS. I AM DOING OK AND SO ARE MY GIRLS. MY OLDEST IS GETTING READY TO START SCHOOL ON SEPTEMBER 3. SHE IS VERY EXCITED BECAUSE SHE IS GOING TO START A NEW SCHOOL THIS YEAR. WE ARE VERY PROUD OF HER.

ON THE OTHER END, I WANT TO TAKE THIS MOMENT TO SHARE A LITTLE PIECE OF INFORMATION WITH YOU ALL. CURRENTLY I AM EMPLOYED WITH CITIBANK AND CITIBANK IS CURRENTLY COLLECTING DONATIONS FOR "LIGHT THE NIGHT". I AM THE TEAM CAPTAIN AT MY BRANCH, WHICH I AM VERY EXCITED FOR SINCE THIS MEANS ALOT TO ME. I AM HELPING RAISE MONEY TO HELP FIND A CURE FOR THIS TERRIBLE KILLER OF CHILDREN THAT I KNEW AND SAW WITH MY OWN EYES BATTLING TO LIVE. SOME MADE IT, BUT I SAW TOO MANY DIE. THERE ARE TO MANY CHILDREN OUT THERE DEALING WITH ALL SORTS OF CANCER ESPECIALLY LEUKEMIA. WE NEED TO DO SOMETHING!!!!
IF YOU WOULD LIKE TO HELP MY BRANCH RAISE SOME MONEY, ALL YOU NEED TO DO IS MAKE A CHECK PAYABLE TO: "LIGHT THE NIGHT" AND MAIL IT TO:
CITIBANK
ANGELA ROSARIO
411 GRAND STREET
NEW YORK NY 10002
THANK YOU ALL FOR ALL YOUR SUPPORT AND GENEROSITY.
IN MEMORY OF ALEX JOHNSON, MR.T, JOSHUA JOHNSON, ALEX, ALEXA, MIKEY AND MARCUS, NICOLE B.,SHANE;QUEEN MADDY...THE LIST MAY CONTINUE ON. YOU ARE ALL GREATLY MISSED BY ALL OF US WHO MET YOU. YOU ARE ALL THE REASON AS TO WHY THIS MEANS SO MUCH TO ME TODAY. MY BABY ASHLEYS' LIFE AND DEATH AND ALL OF YOUR LIVES IMPACTED MY OWN LIFE AND FOR THIS REASON SINCE I WAS LEFT BEHIND I MUST MAKE A DIFFERENCE.

Monday, August 18, 2008 9:59 PM CDT

ASHLEY WE LOVE YOU!!!

Sarurday June 28, 2008

I can't believe it's been exactly three years today since my little girl went to heaven. I still find myself having a very hard time understanding why she had to leave us. June 28, 2005 was the day that changed all of our lives completely nothing has ever been the same since this day.

I hope that same day we might be able to under all of this. It just doesn't make any sense.

Thank you to all who helped me throughout this journey.
Ashley you will always live in our hearts until the day comes where all that are gone come back to live again.

Tuesday, March 6, 2007 7:01 PM CST

Happy Birthday Ashelini!!!!

How I wish you were here with me so that I COULD HOLD YOU,KISS YOU AND BE ABLE TO HOLD ON TO YOU AND NEVER LET YOU GO. Mami just know that you are missed dearly. I have a new hope that is what helps me look towards a brighter and happier life again with you and that is the promise of the RESURRECTION. I know that in the condition you are in right now will not be forever. I know that you are sleeping and feeling no more of all the horrible things that were done to your little body which was and still is an admiration to all who knew you. I am looking forward to this day.

We all love you sweetheart. I am still here trying to survive and watching over your sisters and making sure that I give them lots of love. I LOVE YOU!!!

Life is different and I don't think it'll ever be the same.
I know soo...

Saturday, December 16, 2006 1:25 PM CST

Hello to you all...I know that I don't write as often. We are doing ok. Still missing my little girl like crazy!!! I still find myself from time to time thinking about all the things that we all lived in 5200 and all of the kids that I met while I was there and who are no longer here with us today. I know that we all agree that all of these children were all very unique and that they all somehow impacted our lives. I know that I will NEVER FORGET ANY OF THEM!!!!

My two girls Lesley and Angeley are doing and looking great. Angeley's hand(the one that got burned with the iron accidently) is looking good. Lesley continues to be a great student and like always a great sister. Angeley is a very happy child and is able to identify Ashley when I say to her to show me her sister Ashley in the pictures and that brings comfort to me because I want Angeley to somehow love Ashley although they got to spend such little time together. When we go to the cementary Angeley usually wipes Ashleys' picture that is on the tombstone. I break down when I see her do this but eventually I feel better.

My situation with ACS because of Angeley's burn is still pending I just recently appealed the case. Hopefully everything will be clarified and they'll be able to see that this was nothing more than just a very unfortunate accident.

I hope you are all doing ok. To all those people who still continue to check up on me thank you soo much.

Ashley we love you and will always remember you.

Saturday, October 28, 2006 3:39 PM CDT

Hi everybody! I hope that all is well. I continue to take it each day one at time. Still missing very much my little girl but with a better hope for the near future knowing that we have hopes of seeing our love ones when the resurrection begins. I am ok but will I ever be 100% I highly doubt it. I don't think we ever accept the death of someone we love. I hope you are doing fine. For those who continue to check up on our page thank you. My other two girls are doing very good. Like I've always said if it weren't for these two girls I don't know what life would of been like for me after Ashley's departure.

Monday, September 25, 2006 7:09 PM CDT

Hello to everybody! It's been awhile. I am missing my baby Ashley each day more and more. I am trying to cope with it some days are better than others. My two daughters are doing good. Lesley just had a birthday, she just turned 8 yrs. old and Angeley is 19 months.

Right now I'm going throug a very ugly experience. Angeley suffered a burn injury on her hand which was an accident. I was getting ready to iron a shirt and I was going to iron it on top of my bed since I was going to iron just that one piece and Angeley was standing next to my bed I realized that Angeley had a piece of paper in her hand; I than turned to put the paper on top of my dresser. Everything happened very quick in seconds to make a long story short I now have ACS involved and they are trying to accuse me of being an inadequate parent and supervision. CAn you guys believe this! All of this when everybody agrees that it was just an accident. I never left the child unattended. Sometimes things happen. I feel very frustrated about this whole ordeal. IT is very stressful. Not only am I dealing with Ashley death and now I have to deal with this situation. I believe like always that God is in control of my life and he knows THAT I am neither one of those things it's a matter of clarifying the whole situation. I hope that everybody is doing good.
Don't be strangers. Long time I don't here from some friends. For all my friends that lost thier children I hope you are all feeling alot better. Take good care of yourselves.

Saturday, February 18, 2006 7:35 PM CST

Ashelini, It has been almost 8 months since your new journey. Another journey where I have no access to. A place where I can't tell you how much I love you and how much I want us to be together again. My love I don't think I'll ever find comfort with all that you had to endure and with the outcome. The days go by and each day brings me to another day where I get scared when I think of you and all that you went through. At the same time there is so much love to give and I hope you were able to understand that I love you and always will.

Soon you would have been turning 3 years old on March 6...Life just isn't the same anymore. I try to make it as close to normal as possible for your two sisters but it is really hard. What holds me up is teh faith that I know have that we shall be united again and your sisters who I live just as much.

It is not easy losing someone you love and having to learn to let go is also challenging. Just as these kids were albe to stand strong so should we.

I LOVE YOU ASHLEY!!!!!!!!!

Sunday, December 25, 2005 2:18 PM CST

Our first christmas without you Ashley...But yet we are "supposed" to carry on with life.
LIFE is not the same nor will this and all the other holidays be the same.

Merry Christmas Ashley!!! Lots of hugs and kisses!!!

Merry Christmas to everyone and a Happy New Year!

Sunday, December 11, 2005 3:56 PM CST

HELLO TO ALL OF THE PEOPLE WHO CONTINUE TO STAND BY MY SIDE DURING THIS DIFFICULT JOURNEY. YOUR MESSAGES ALWAYS HELP THE PAIN THAT I CARRY IN MY HEART.

ASHLEY IMPACTED MANY HEARTS WHILE SHE WAS HERE WITH US BUT HER LEGACY WILL CONTINUE FOR THE YEARS TO COME.

YESTERDAY HIT THE 2 YEAR MARK SINCE WE BRGAN THIS TRANSPLANT LIFE WITH OUR DEAR ASHLEY AND I COULD JUST REMEMBER THE PAIN AND FEAR BUT ALSO THE HOPES FOR A BETTER FUTURE FOR MY DAUGHTER....HERE I AM TODAY LEFT WITH ONLY THE TIMES WE SHARED TOGETHER AND THE HOPES OF A BETTER TOMORROW FOR MY TWO GIRLS THAT ARE STILL HERE WITH ME TODAY. ME FAMILY WILL ALWAYS REMEMBER ASHLEY AND SHE WILL CONTINUE TO PLAY THAT STRONG ROLE THAT SHE HAD IN OUR FAMILY. LIVING WITH ASHLEY WAS A LIFE LEARNING EXPERIENCE AND I WILL ALWAYS LOVE HER!!!

Friday, November 18, 2005 8:45 PM CST

I know its been a while... I have been dealing with my sadness as it comes. I am still trying to understand what and why things turned out the way they did with my baby Ashley. I hope that someday the Lord can tell us why to the many that we may all have. The faith that I am trying to have in believing that someday we will all be reunited with our love ones.

Ashley you know how special you are to us all especially to your sisters and us your parents. You brought to our lives so many love and lessons that will forever be with us. We love you and miss you sooo much. Te quiero MUCHO! God bless you always.

Saturday, October 22, 2005 2:23 PM CDT

This entire week is always extremely hard because I relive each day like if it was back in June when Ashley was so sick. I still can't get over it...I can't understand how if we were always walking a tight rope but under control how could it be that Ashley just went from stable on thursday and her labs looking ok with the exception of her needing fluid and some potassium to being so critical?????

I am just living my remaining days one at a time hoping to one day (whenever that day may be) see my little girl.

ASHLEY I MISS YOU I WISH I COULD HOLD YOU KISS YOU AND JUST HAVE YOU HERE WITH US....but I realize this can no longer be possible because God already answered our prayers. We must wait for out mission to be completed here so we can do all of these things.

I love you dearly and you know that. God bless you always. Keep an eye on your sisters ok

Friday, October 14, 2005 9:29 PM CDT

Although its been almost 4 months since my dear daughter Ashley departed to be in heaven the pain is still very real. There are times where you wonder and just wonder and ask yourself why so many times....It doesn't matter whatever it is that I may do or say now. The reality is that my baby is no longer here and that what we as humans fear actually struck the heart of my family with Ashleys DEATH. On October 4 we finally got Ashley tombstone set up and it looked very nice well, you know what I mean.

Not a single hour goes by nor a single day where I don't think of my Ashley and all the other families that we both met while we walked this journey together. I saw alot of different situations and I saw alot of children passing and it seemed like we were in a war zone just waiting to attack or get defeated. I remember seeing alot of sadness and I also found alot of hope in the world of TRANSPLANT.

My heart goes out to all those who are still fighting with all that was put into there hands without them even asking to be the chosen ones, to all those parents that lost there fight here on earth because in the end we must all believe that it was a VICTORIOUS fight at the end.

Going back to those days when we all started this and just hearing that Trevor got his transplant today, Ross, Alex, big Alex, Shane, Lauren, Tanika, Lindy, Queenmaddy and my dear Ashley and the list goes on to josh, Master T, Mikey, April, Jacob,Marcus M., Nicolasroy ....I can still remember each and everyone of you with so much love, respect and admiration because you have all taught us all so much.

I love you Ashley and We all miss you soo much!!!!

Monday, October 3, 2005 4:55 PM CDT

It has been 3 months since my little Ashley left us. Not a single day goes by that I don't think about her and all of her teachings and love that she left imprinted in our souls.

Ashley it still seems so unreal even though it has been 3 months that I haven't heard you calling out to me or seeing you just sit back and watch at all that when on around you. Your smile , your eyes that always spoke for you will never be forgotten YOU COMPLETELY WILL ALWAYS BE IN MY HEART AND PRAYERS. God bless you my baby. I do know that we will be together again and when that happens it will be forever and ever and a much happier you because you are healed now so we will be able to enjoy you much more.

TE QUIERO MUCHO Y TE EXTRANO.

Monday, August 29, 2005 2:09 PM CDT

Yesterday Ashley hit 2 months after her passing to a better place. I still miss her entirely like you can't imagine. Our days are some better than others. Some days I just have so many thoughts that dwell in my mind for hours at a time on the whys? what if? and I always fall back to the same answer, it went the way things were suppose to be. Why I don't know. Ashley knows that we love her and miss her soo much. This emptiness in my heart will never leave me but I will try finding comfort in all the good memories that we shared together.

I love you Ashley!!!!!May you continue to find light in this new journey.

Wednesday, August 24, 2005 6:56 PM CDT

It is always very challenging to come into my angels page and having to write how "I" am feeling these days it is no longer Ashley. I am still struggling with all of this. Finding the peace and comfort in trusting God and believing that if he allowed this to take place he must of had a better place for baby Ashley.
Ashley is missed very much. Words can't even come close to escibe the pain and the anxieties that I go through from day to day. I know that I will be a surviver. I don't think I'll ever be completely OK.
My family got together on august 19 and 20 we had a mass service given for Ashley. It was really nice. At the same time very touching.

I love you Ash and you know that we will someday be able to see you again. I will once again be able to hold you the same way that I did in my dream. Thank you for doing that because I really needed to see you again and be able to hold you so close to me once again. I love you and always will. The bond that we shared nor death will do us apart.

My praying partners please say a special prayer for our Queenmaddy who is having a strong fight in the picu in Duke. Her sit is caringbridge.org/ca/queenmaddy.

I MISS YOU BEBA!!!!LOTS OF HUGS AND KISSES....God bless you.

Saturday, August 13, 2005 5:16 PM CDT

My dearest daughter not a single hour or day goes by where I don't think about you. The dreams and hopes for a better tomorrow here on earth united like a family. So many dreams where left behind half way done. That HURTS. I know that you HAVE to be in a better place. THe place that we all call heaven. When will I get to see you again???when will I get another hug from you and hear you call me IYAYA?? Ashley when? Mommy is hurting inside but surviving because I try to find comfort in my two other daughters that I love dearly and that I know you would want me to do the same for them like I did for you. Just know that WE LOVE and MISS YOU SOOO MUCH!!

Te quiero mucho, mucho...besos para una princessa y esa princessa eres tu Ashley.

Tuesday, August 9, 2005 10:33 AM CDT

Hello,hi everybody this is Rosemary angela's best friend.Im updating on behalf of Angela .Angela is doing ok.Her emotions like you can imagine are very mixed from time to time.She says to thank everyone,for your continous support,through out this journey.Like you all may imagine,this has been a life changing experience for my friend Angie,she was really attached to Ashley,and it is,extremely hard trying to find,the answers to things,that we may never have the answers too.she continues to go on,to all the memories and teachings that her dear baby taught her.Some of these teachings for example,patience,tolerance,perservirance,love,and Ahsleys beautiful smile,throughout her life.Which was short but brought along with it,many teachings.The lost of a child is tremendous,but as a parent you must learn to trust god,in knowing that he does everything perfect.Angela is thankful for her two blessings that she has,which her still,Lesley and Angeley.Please continue to send all your prayers and goos wishes.
Ashley your family loves you, and we want you to know that we will never ever forget you.You will always be in our hearts and for as long as we live we will always have that bond.Death will not do us apart.Love mommy.daddy nani and anheley.

Wednesday, July 27, 2005 2:09 PM CDT

My heart is aching so bad....with all the memories so vivid in my mind. All of the good and bad just constantly comes to play. I can't BELIEVE my angel Ashley has been gone almost a month tomorrow July 28.

Not a single hour of my "NEW LIFE" goes by where I don't think about my tremendous loss. Like I've always said I didn't loose this battle. We had a VICTORIOUS fight because GOD was always in control of this all. To the human EYE it can be considered the worst thing that could ever happen to any living being but, because DEATH shouldn't be looked at as the END and should only be looked at like a new transition to a new life. The place where we all call HEAVEN or Paradise where we are one to one with our creator.

Ashley is missed like you can't imagine but I'm at peace because I tried giving that child all I could posssibly give her so that I can make her life better. I dd feel at times like I was cheated in this game but once again I come to the same conclusion GOD WANTED IT LIKE THAT. I only pray that God continues to lighten my new path the same way he did while Ashley was here by my side in a"PHYSICAL" form. Why do I say physical form because now she lives with me but in a spiritual way.
Now I know people might think I'm crazy or some may even understand where I stand.

I went to the cementary today...like always I get very emotional there but I also find peace because I feel like I'm still doing something for my girl. I take flowers, water her site, read stories to her.

God bless. Thank you for all your prayers and support.

Sunday, July 24, 2005 8:47 PM CDT

Missing my baby like you can't imagine.

Today another one of our kids went to heaven. Please say a special prayer for Frannie. Frannie had a rough rode but God decided that it was time for her to be by his side free from all the pain and illness that entered her little body. Her web page is caringbridge.org/nc/frannie.

Ashley not a single day goes by where I don't think about you and my mind wonders. The WHYS? The HOWS? but I only find myself saying at the end the Lord had his plan with you and on that day that was how it was going to end. I shouldn't say END I should use the word BEGIN why BEGIN because that was the day that your body was going to receive a whole new TRANSFORMATION. You were going to be healed but healed in a way that wasn't going to be reversed ever again due to the way that things work here on this earth. God had an even better plan and his plan was to convert you into another beautiful angel in heaven. In a world where there is no sickness,hatred,hurler babies etc... In a world where all that takes place is all good.

I just wish that someday we can reunite again and I can here say to me MAMI I LOVE YOU AND LOOK AT ME NOW. I'M HAPPY. Ashley we love you and like I said before you will always be a part of me and we will always be together. Only that now I must learn to feel you in a whole different way. I love you Ashlini. I will always remember the day that I brought you to this earth Thursday March 6, 2003 at 5:50am.

Tuesday, July 19, 2005 11:28 PM CDT

Just remembering that a day like today my whole life was about to take a whole differnt angle...

An entire day at the clinic because the night before Ashley wasn't feeling to comfortable. Ashley got an x-ray taken , was given breathing treatments and was eventually sent home to be put under observation for that night. Little did I know that we were living our final hours with her where I would dress her into her pj's and hoook her up to her meds for the last time....cause a couple of hours later we would have to go to the bop room at like around 3:30am. To end uo intubated and finally us having to make one of the hardest decisions a parent can make to extubate and letting nature take it's course.

Ashley how I wish things would of been different...Life just isn't the same without your beautiful smile, just you entirely. It just isn't the same. The hardest thing is having to continue living because I still have two very special people to love for and those are your sisters.

I LOVE YOU SOOOO MUCH but I can't help not feeling this empty space in my heart that I don't think I'll ever fill it up again.

WHY?WHY? WHY did you leave me WHY????

Remembering Ashley more than ever. Angela

Sunday, July 17, 2005 1:49 PM CDT

Hi everyone....

Today I went to visit Ashley at a place where I had wish she didn't have to go to...but she did. Why I don't know I am still trying to figure that one out. Although there are days where I feel I have a better understanding of all that when on. I guess this is just part of it. I cried alot today because Ashley's grave doesn't have the appearance that I wish it had. I know that I have to let nature take it's course again and wait for the grass to grow and for her tombstone to be placed,plant some beautiful flowers. At the same time that I just stood there looking at my childs "new" home where I can feel some closeness "physically" and where I could still feel like I am still allowed to show my love for her I kept reminding myself of something that a friend mentioned to me the day that we buried her..."don't look at it like your putting dirt on her look at it like you've just planted a seed and that seed is fertile and out of it alot of branches will grow. That has helped me out a whole lot.

I just have to learn to live with all of this.

Ashley you know that I love you. That no matter what happens you will always be in my heart. I just wish all of this was a nightmare and not my reality. Lat night I know you where in the bathroom while I was taking a shower. I smelled your scent. I want to believe it was you making sure that I was ok. This morning Lesley tells me mommy I smelled Ashley makeup that she was wearing in the funeral home next to your bed when I was getting dressed. I know that it was you. You know that you will always be our daughter and sister. I still have 3 girls just that one is living in a whole different way now. I love you and I hope to see you agaon someday day.

Please pray for Frannie and queenmaddy.
caringbridge.org/nc/frannie
caringbridge.org/ca/queenmaddy

Monday, July 11, 2005 3:03 PM CDT

I want to thank each and everyone of you for all your support...I want you ALL TO KNOW that I am doing FINE. During this entire journey I learned to ACCEPT God will. I learned to believe that God had his plan with my girl and that my girl had a journey to complete although I have to admit I didn't think it would end like this. It might sound crazy but ALTHOUGH SHE PASSED AND HER HEALING DIDN'T TAKE PLACE HERE ON EARTH I AM OK WITH ALL THAT TOOK PLACE BECAUSE GOD DOESN'T DO THINGS HALF WAY. HE IS A GOD OF PERFECTION. WE MAY NOT UNDERSTAND THE WAY HE WORKS AT TIMES BUT LIKE MY SISTER-IN-LAW SAID TO ME "HE DOESN'T GIVE US THE WISDOM TO UNDERSTAND HIS MYSTERIES." I KNOW THAT MY DAUGHTER IS NOW COMPLETELY HEALED, FREE FROM ALL PAIN THAT SHE HAD TO ENDURE TO COMPLETE GODS PLAN.

Ashley how I wish that God plan would of been what we wanted but, he had an even better plan and mommy is ok with it all. I still can't understand to this day how is it that loving you and missing "our life together as one person" I am holding up so strong. Only gods mercy for his children can make this happen. I give him the glory. Not a day goes by or even a second where I don't think about you. Ash you made such a difference in my life...I thank you for that. I miss holding you, kissing you and just seeing you next to me since you and I were one. Baby you know that there was not one thing I wouldn't have done for you to change all that you had to endure but I just couldn't go any further but continue to ask God to heal you and give me strength. God listened to our prayers. You are completely healed and I am still strong if not stronger today than I was beginning this journey. I love you and will always carry your name on. I am so proud of you. Your family and friends miss you alot but we will stand strong because you taught us how.

My friends I don't have the words to express all I feel but I can say to you all that GOD IS A LIVING GOD. I am holding up so strong and I know that this is not a coincidense it has to be GOD. All those who got a chance to meet Ashley and me know that there wasn't a thing I wouldn't have done for that child. My love for my children is immense but I also know that GOD loves them even more because he created them in my womb. I know that Ashley is enjoying everything that she didn't here on earth and is happy looking over us and protecting us from above. I know that I won't be able to hold her physically but I will continue to hold on to that bond that we both shared. I am confident that we will figure out a way.

Please continue to pray for all of those families who are going through this journey and for all of those angels in heaven. Please say a special prayer for Frannie who continues to be in the PICU. Viesta (Frannie mom) was so supportive while we stayed in the PICU trying to fight for Ashley life. Thank you Viesta. Your support really meant alot.
Titi Isabel thank you for being there with us. Thank you for your love towards my family. We love you.

Ashley farewell went extremely well. I was happy with the outcome. Thank you to all who attended and for all the beautiful flowers and prayers. Kelly,Bobby,claudina,jenny and Leah from Columbia in NY for being present.

A new journey has begun and now I have to make the best of this new mission and I will because I know I can.

To all of the BMT team in Duke and Columbia Presbyterian and a speacial thank you to DR.Prasad thank you for caring for Ashley the way you did. Thank you all for helping us try and defeat all of these sicknesses that some of these kids on earth have to encounter. STEM CELL transplant works just that not everyone has the same destiny. Dr.Kurtzberg thank you may God continue to give you Bone Marrow doctors all the wisdom that you need to continue helping saving lives.

THANK YOU TO EVERYBODY FOR YOUR SUPPORT AND FOR CARING FOR OUR DAUGHTER AND SISTER THE WAY YOU HAVE DONE. MY ASHLEY IS GONE NUT SHE WILL REMAIN IN THE HEARTS OF ALL THOSE THAT LOVED HER. TE QUEREMOS MUCHO ASHLEY Y LO MEJOR DE TODO ES QUE TU LO SABES.

THANK YOU THANK YOU.

Wednesday, June 29, 2005 11:16 PM CDT

My heart is aching really bad because such precious being has left me behind. I now have to begin a new journey without you in my life "physically" Ashley. I hope you knew how important you were in our lives and the hearts that you impacted. Bebe, mami feels lonely because I will no longer be a part of your new journey and although I do know that it is a better life, that still doesn't stop me from feeling the way I do. That still doesn't stop from asking myself, WHY??? Why did it go this way???? Did mami fail? If I did, where did I go wrong? I know it's easier to blame myself for all that has happened and I know that I shouldn't, but that still doesn't stop me from feeling all of these emotions. I know that God had a better plan for you and that you had a mission and that mission was completed yesterday June 28, 2005 at 9:43pm. I will always love you, miss you. Mi amor help me....please. I hope we all made you happy. If I ever made you feel bad I'm sorry Ashley. I just feel so empty. Thank you God for these two precious girls I still have and continue to fight and stay strong for. I love you girls all very much....Ashley where are you???? In heaven with God I must trust. How do you feel up there??? Mami I feel good. I feel like me again mami. Ashley I want to scream so hard and loud but yet at the same time it seems like it's all just a nightmare.

Could all this really be happening??? Again Ashley I must say to myself "si Angela it is." One minute it seemed as though you were going to make it and one minute you are on a ventilator requiring 100% oxygen. Ashley WHERE ARE YOU!!!! Lord please help me get through this, I know that she has been healed completely and that it was her time to go, but yet I cry the way I do. I must say that the night that I last held Ashley in my arms and the strength that I received was just a divine gift. Thanks God for your mercy. I surrendered. I returned her back to You so that your will be done. It hurts and I know that you understand my pain. Ashley was an amazing child. She just had this good nature. Never did she complain considering all that she had to endure. I love you Ashelini. Don't forget us. Watch over your sisters, daddy, me and the rest. You have impacted our lives like you could never imagine.

I will miss you and cry and hurt like you can't imagine but I know that you will help get through all this. I know that your love for me was immense. We could actually speak to each other just by looking into each other eyes. Cuidatenos mucho mi vida. Tu familia te quiere mucho y te van a extranar mucho.

To everyone else:

Thank you all for caring for Ashley the way you all did. Thank you for all your support, prayers and love. Ashley has been healed, so our prayers were answered; although it may seem like they were not. To the doctors at Duke Hospital whom participated in Ashley�s care, THANK YOU because I (husband and family) don't have the words to express my immense gratitude. You all tried and fought to keep Ashley with us, but God had the final word. The nurses and friends wow...and the list goes on THANK YOU, THANK YOU. We have traveled a long road together which has ended in freeing Ashley of pain; although the pain that is now in our hearts will always be a part of us.

The funeral services will be on FRIDAY JULY 1ST, 2005.
Redden's Funeral Home, 325 West 14th Street (between 8th & 9th Avenue),
New York, NY 10014, (212) 242-1456
The viewing will be from: 2:00 to 9:00 pm.

If you wish to send Ashley something you may feel free to so.
We will have a short mass across from the Funeral Home on Saturday at 9:30am, and the burial will follow at Maple Grove Cemetery in Queens.

�God has not given us the wisdom to understand the mystery of His plan.�

Saturday, June 25, 2005 2:16 AM CDT

Wow!!!

I'm sorry foe not updating sooner but....ASHLEY has been in PICU since Sunday June 19, 2005. I can't even describe the pain that I'm feeling right now knowing that death is trying to knock at our door. As a matter of fact it almost did on Monday when Ashley coded on us. Thank God that she didn't let herself go....To much has been going on since and just to fast for me to comprehend. One minute she was doing ok the other she was in PICU and right away on a ventilator.

Ashley is in a critical but stable condition at this point. She is currently on a Jet Ventilator. I will try finishing my update later. Please just pray for her. I need her lungs to completly heal and for the 5 liters of extra fluid to release her body free. We can't do dialasis at this point because it will be to dangerous for her heart. Please pray. That is all we can do for her. God is a mercyful God and I know he can heal her. Thank you. My cell # is 1646-523-7474.

Friday, June 3, 2005 7:25 PM CDT

Hi this is Lesley,Ashleys big sister. My mommy asked me to give you all an update on my little sisters healph. My mommy is still in North Carolina whith Ashley. They have been there since April. Ashley was in the hospital for two weeks in Duke when they were discharged from the hospital in new york. Ashley has made a very good turn around. The infection that was thought to be in her lungs is completly gone. We all had alot of faith that God was going to heal Ashleys little lungs. My mom will be staying in North Carolina until July. The doctor wants to keep Ashley under observation until that time. Hopefully Ashley will continue to feel better. My mommy has my baby sister Angeley with her also. My daddy and I still go down to see them every other week. Thank You all for checking on my sister and for praying for her complet recovery.

Wednesday, May 4, 2005 8:01 PM CDT

Hola....

Ashley has continued to make GOOD Progress. We are talking about getting discharged on Friday. We had two bugs growing in her sinuses so we are treating them with two antibiotics. When we go home she will be on cephepine. The cultures from her lung have not grown anything back. That's a good thing hopefully there was never an infection in her lungs. Ashley saturations are looking great!!99-100%
The rolling of her eyes is definately getting better. I honestly don't see her doing that as oiften anymore.

While I've been on the unit I met another family from NC with a little boy that also has Hurler. His name is Taylor. He is the cuttest little boy.
I also spoke to Maddy's mother Kym. Maddy is 5 years out of transplant and is doing great. So it was nice talking to her mother. She also stopped by to visit Taylor and at the same time stopped by to give ashley a little gift. That was very nice of her. Thank you Kym

To Claudina, Caterina mother Gracias por todo.

Wednesday, April 27, 2005 1:30 PM CDT

Hi to everyone...

I just want to give you all an update. We are back to Duke in 5200!!! After 3 weeks of being in the hospital in NY we decided that it was best to bring Ashley down. Ashley is stable. The problem was that we couldn't seem to stop Ashley from retaining fluid and so to make a long story short we are here. We've been here since Friday. We did a ct scan and found that Ashley has a lung infection. We don't know what bug it is but that is why we did a broncoscopy and a endoscopy yesterday. That way we can identify the infection. So we are currently waiting on those results. Her stats are actually better than they were back home. She is 98%-99 even 100. The fluid has also gone down. She is peeing alot more now.

The main thing here is that Ashley looks pretty good considering everything that can go wrong with the fact that she has a very poor immune system. I tell you God is looking out for us.

The other issue is that for some reason Ashley has been rolling her eyes back and we have done EEG studies thinking that maybe she was having some seizures. The good thing is that she is not but, in one of her most recent CT scans it showed that she does have an increase of fluid (which we knew she had in the past) just that it seems to be alittle more now. Neurology wants to see if they can put I guess a shunt so that we can drain that they think that maybe that's what is causing those eye movements. On the other hand we don't think so because she would of had these issues before being that the fluid been there. The main thing right now is to try treating this infection and then the Doc. here are going to see what would be best for Ashley and putting in another forgein body at this point is not the best option. The other theory is that the steroids themselves can make your muscles weak so maybe it can be that that causing those eye movements. It is all a matter of time.

The good thing is that God continues to look out after Ashley. I'm sure he is doing the same for your children too. I'll update as soon as I know more.

Tuesday, April 12, 2005 9:30 PM CDT

I would like to ask eveyone to try making a donation ( it doesn't matter the amount) it's whatever you can AFFORD. To help me and my family raise some money for the PBMT Family Support group at Duke.

Let give you some brief information on what the PBMT Family Support Group is:
The mission of the volunteer-based PBMT is to care for, to serve and lighten the burden of the families when they arrive at Duke for transplant. From the shock of the initial diagnosis to the eventual return home from Duke, there are many steps along the way. Each step is made easier when there is someone there to offer support. Assistance for the patients and families, fromwithin the community and beyond, is essential. the Family Support Program was founded as apartnership in this pursuit, born through the efforts of families who like ourselves had to experience transplant at Duke.

I can personally tell you that this is a wonderful program. I had to live in North Carolina with my daughter a total of 6 months away from home with alot of expenses. Thanks to this program and all of the people like yourself that make this possible, our life was made alot easier. Alot of the families are faced with the fact in a wink of an eye that there child has this illness that is terminate and all we can do is a transplant to try saving our children life. We have to pick up and go leaving behind debts, mortgages that need to paid even other siblings that require other expenses. With the finiancial help that we receive from this program and calling cards to help us stay in touch with the people we love back home (this is only to mention a few of the things that come out of this program) our life was MADE ALOT EASIER.

Credit card donations can be made on there secure website at: wwww.rainbowofheroeswalk.org

You can also make checks payable to: Duke PBMT-05RH
Mail to: Jane Schroeder DUMC 3350 Durham, NC 27710.

Apply your donations towards Team: A. Rodriguez

I want to thank each and everyone of you for your contribution in helping my family help another family that at this point is where we were just 1 year ago. Any contribution can help make a difference in somebody life.

Thank you. God bless.

Friday, April 8, 2005 0:14 AM CDT

I want to thank each and everyone of you have continue sending your prayers and support to my family....Your constant support just to mention a few my husband Aristide, my daughter Lesley, and my baby Angeley (who has brought new life into my soul), family and friends I don't know what would of done without your support.
The Lord made no mistake when he put together this strong support for us Aristide. We both know that this would of been alot tougher for both in trying to keep up with our girls, our bills and the list goes on....I want you to know that I thank you and appreciate you even more. You have not left me alone. You have been there unconditionaly helping me get through this and encouraging me to to stay strong. Thank you for your support and patience. Everyone needs to know that God chose a GOOD man to help me carry on with our burden and that we are BOTH handling it well. I love you.

Lesley you and Ashley and Angeley you girls are my life and the meaning to my existence. For you girls I fight daily in trying to stay strong with all that comes because of you my babies. You have been an amazing big sister. Your way of handling what has happened with your sister has been UNBELIEVABLE!! You are a GREAT BIG SISTER and a great daughter!!! I love the family that God has given me. I know that it hasn't been that easy for any of us but, we have managed. Thank you "beba".
Mommy hasn't forgotten the many times you've sat there wiping my tears and encouraging me to stop crying that everything will be ok. I love you Lesley.

On the medical front: Ashley has made a very positive turn around!! Thank you God, thank you all for your prayers. God is listening to our pleads. Ashley has been mainting 98f oxygen on her own. When she is sleeping she stays at 95-96Her weight is continuing to go down she is now down to 11.2 kg. (25lbs). The puffiness in her little feet is slowly coming down. She is very happy. I only changed 3 poopy diapers today which is GREAT!!! The doctors are very pleased with her progress. Her hypertension is better also. We did increase one of her heart meds. (To me honest with you I know that this will be a short term thing) once the fluid is completely off it should all get better. We are also going to put an NG tube because we want to try getting Ashley off TPN before we get discharged and try feeding her through the ng tube. Hopefully she should tolerate that well. I tend to prefer that method of feeding her than the TPN.
Tomorrow we will repeat another chest xray just to see how her lungs have recovered from the previous xray. They will also send Ashley to get an MRI done at some point to try figuring out why she does that with her eyes. (I mentioned this in the previous journal entry). Hopefully it's not something major.

Please continue sending us your prayers and good wishes. They mean a lot to us.

Este mensage es para mi familia:

Mami, Naty,Mayra y Aurelia y a toda la familia gracias por su apoyo incondicional. La lista seria demasiada larga si mensiono a todas las personas por eso les digo GRACIAS,GRACIAS por llorar con nosotros, sonreir, por preocuparse por la salud de nuestra hija por pedirle a DIOS por la salud de Ashley ya que todos queremos eso para ella. Han sido muchos los que han llorado conmigo en mis momentos de debilidad cuando e permititido que la tristeza y mis temores se a poderen de mi persona. Yo como ser humano, como madre tengo mis momentos y gracias a Dios y a mi familia y amigos e podido seguir hacia adelante.

Dios exsiste solamente al que crear.

Wednesday, April 6, 2005 2:59 PM CDT

It's been awhile...although I have tried to update on many occasions without much success. ...We were once again admitted in on March 24th because I noticed some blood in Ashley stool. The doctors here felt that it was best to admit her in order to administer the proper test in a faster manner. They wanted an immediate colonoscopy and a EEG for the spasms in her eyes. Two weeks prior to being admitted, we were monitoring her by sending out blood cultures. The main reason why we began this was because Ashley just didn't really look like herself, but nothing came back positive. I also noticed that she was losing her appetite, which worried me a little.

To make a long story short....we are still here dealing with GVH of her gut stage 2 and stage 3� how about that???? So we started her on another medication for the GV called IMURAN. This drug can affect her cbc (which I've already noticed its affecting her platelets) her blood pressure have also been an issue. She has also been retaining some fluids. Oh, and I forgot to mention that they started her on TPN since by now the doctors knows why she had been losing weight. They did a chest xray and that showed a little edema and some haziness. They also said that could be caused by infection or fluid in the lungs. The problem with all this is that we don't think the fluid is being kept in her veins but more in between her tissues. Therefore, we have to figure out a way to put back that fluid into her circulation and with diuretics try making her pee it out. We have to do this with a lot of care due to Ashley�s heart issue (cardiomypathy). So we were thinking about putting her on albuim, this medication should help her by putting back the extra fluid in her circulation. There are just too many little issues that must be sorted out quickly before we find ourselves in a whole big mess; (God willing, they will be sorted out very soon). Right now Ashley seems to be keeping up with everything. Her mood changes from time-to-time, sometimes she sings, smiles and even becomes a little playful; while at other times she just doesn't feel up to it.

I know that Ashley is a strong little girl and I also know that God is by our side. But sometimes I can't help it and start to cry because my mind starts to wonder and the devil places doubtful thoughts in m y mind. I'm quite sure anyone with children of their own or anyone who has been in a similar position understands my worries and fears. I must admit that as strong as I try to be, I felt very helpless yesterday when the doctors expressed their concern and intentions of sending us to the PICU. They felt that Ashley could use more monitoring and individualized attention. Although Ashley is looking a little better, they still don�t really know what exactly is going on. Just in case her new symptoms are caused by an infection, they placed her on Vancomycin, Zosyn and Tobramycin. They are only trying to play it safe. Luckily we ended up staying in our room and the ICU doctor is making frequent visits to our room. In a way I am grateful for that, the thought of having my daughter in ICU frightens me, although if it�s for her best, we�ll gladly comply with their wishes.

At this point, we really need more prayers and will continue to need them until my baby has made it pass this frightening phase. Although she might look ok for a baby in her situation, the lingering issues are still of great concern to all. For example, I don�t like the fact that she is retaining so much fluid in her feet and tummy. (We weighed her and she is a little lighter than yesterday). Today her sats have been in the high 90s when while she is a sleep and awake. While yesterday her sats dropped as low as 86 when she was sleeping. Hopefully all of this will soon start to get better; in the meantime, I continue to hold on to God and in my belief that He is in control at all times.

THANK YOU ALL IN ADVANCE FOR YOUR SUPPORT AND MUCH NEED PRAYERS.

Monday, March 14, 2005 2:19 PM CST

Ashley had a birthday this passed sunday March 6.

HAPPY BIRTHDAY ASHLEY!!!!

You have been a blessing in our lives. You have impacted many with your unique way. You are a beautiful little girl. I feel soo lucky to have you as a daughter. I only wish you didn't have to go through all this hurdle. BUT God only knows why he chose you for this mission. You have taught us all a whole lot. We love you very much!!!!

Happy Birthday "pumpkin".

Friday, March 4, 2005 4:29 PM CST

Hello to all of Ashleys' followers

Ashley continues doing pretty good. We are dealing with skin gvhd. We are giving her 11mg of steroids 2x day but the problem with this is that it seems like she really isn't responding to the steroids the way she used to. The other issue is that this gvhd is alittle different from all the other flare ups that she's had in the passed. We will continue to use the uvb light since the doc say that this takes a good 3-6 weeks to show improvement. Hopefully all of this should start to settle soon.

My other two daughters continue doing good. We are all very excited with the new baby.

Please say a prayer for my aunt titi Isabel. She is having a very difficult time in the hospital. This woman is a very special person to me. She saw me growing up and was there by my side while I stayed in North Carolina. ..Titi Isabel I hope you start feeling like yourself soon. You are one person that is always so vibrant and so full of energy. I know that this was just a scare that we don't want you to give us NO MORE PLEASE!!!!! We love you.

Friday, February 25, 2005 7:59 PM CST

I know that it's been a while since I last gave you all an update.

I finally had the baby on Monday 21, 2005. I had A BEAUTIFUL HEALTHY BABY GIRL!!!!! Her name is Angeley. She was 8lbs. 6.2oz and 21 3/4" long. It was a natural delivery at 11:22pm. I started getting contractions like around 2am and went to the hospital like around 8am. I can say that this has been one of my best delivery.

I GOT THE BABY TESTED LIKE I HAD PLANNED ONCE THE BABY WAS BORN....I JUST GOT MY RESULTS BACK AND MY BABY IS HEALTHY!!!!!! SHE IS NOT AFFECTED!!!!!! WE TESTED HER BY DNA AND ENZYME. I AM THRILLED ALTHOUGH I MUST TELL YOU THAT THE MINUTE THAT THE BABY CAME OUT AND THE DOCTORS PUT HER ON TOP OF ME I FELT THIS STRONG SENSATION THAT MY DAUGHTER WAS HEALTHY. I THANK THE LORD FOR THIS OTHER BLESSING. I WISH I HAD THE RIGHT WORDS TO EXPRESS ALL OF MY EMOTIONS. GOD KNOWS ME BEST AND HE KNOWS ALL OF MY THOUGHTS.....THANK YOU FATHER!!!!!!

Ashley continues doing good. We started her with uvb lights to try to treat her skin gvh with this method.
We are still on alot of meds for example:
cyclosporine
steroids
IVIG once a month
levoquin
mag-oxide
potassuim
atenolol
norvasc
cellcept
lasic
caspofungi(same as vericonizol)
zantac
Although we are still on all these meds a year later the most important thing is that Ashley is doing good totally engrafted with all donor cells and is making normal enzyme levels. I am thankful for each day that I've been blessed with my dear Ashley. Everyone knows that Ashley is very important to me. It's not an easy rode but we have no choice but to continue giving our children the best care that they may possibly need. I know that without faith this rode would have been alot harder.

Senor gracias por las tantas bendiciones y por una vez mas ver escuchado mis oraciones Me dio mi nina en salud!!!!! Gracias padre.

Thursday, February 10, 2005 1:49 PM CST

We finally came out of the hospital on Tuesday after Ashley got her 6! line put in. She is doing good. The bacterias have been coming back negative, her blood pressure issues seem to be under control after we made some changes with her doses.

I can't believe today is actually my due date!!! I had a sonogram done yesterday and I was once again confirmed that my Angeley is definately a girl for those who doubted that...she looks good they say that she looks like she might be my biggest baby probably 8lbs or more (let's see).

Lesley is very excited. We are all very anxious to meet Angeley. Hopefully she will a healthy baby.

Thank you all for your messages and constant support. This all means a great deal to me. Thank you and God bless. I will post as soon as I deliver the baby.

Angeley: Mami and the rest of your family is waiting for your arrival which will be taking place any day now. I don't know you but it's like I already do after many months of carrying you and feeling you inside. You are a blessing in my life along with Ashley and Lesley. You girls have changed my life in a very positive way. Each one of you in your own unique way. I hope that all goes well for and that you don't have to go through all that OUR FIGHTER has gone through but whatever our outcome my be we are here with you all the way. I love you.

Tuesday, February 1, 2005 9:02 AM CST

Ashley is still in the hospital. We removed the line yesterday. Hopefully the infection should start clearing up.
we finally indentified 2 of the bacterias. We have Ashley on Zoysyn,Ampicillan and Gentamycin. Friday is when we are talking about probably puttig in a new line. That's if the cultures come back negative.

The ultrasound that we did to check her kidneys came back normal. They did this exam because they wanted to see if it wasn't the kidneys that was causing her high blood pressure. I personally believe that it's the bacteria itself that causes her blood pressure to get high. She had the same reaction last time we had a negative gram rod.

Ashley is in good spirit and smiling away like aways.

Thank you for your constant support.

Feb.3,2005
As of yesterday we started Ashley on another antibiotic because we found a third negative gram rod. Now Ashley is currently on Levoquin and Timentum. So far we are have been getting negative cultures back so hopefully we should be putting in a new line soon. Other than that everything is good.

Thursday, January 27, 2005 2:48 AM CST

I just want to give you all alittle update.

Ashley has been admitted into the hospital for having 2 negative gram rods and 1 gram positive in both her lines. We are currently treating her with Zosyn,Tobra,vancomycin until we figure out what type of bacteria it is. Over all she does look pretty good.

To be honest you would probably never think that she had these terrible bacterias. Good thing I know my child because Monday night she kept waking me up and Tuesday we had to go to clinic for regular check up and while we were there she threw up once and I asked the nurse if they do some blood cultures because the last time she had a bacteria that was exactly what had happened. Well, I was right.

I thank God for allowing Ashley to give me the signs that she gives so that I can catch things sooner before they get out of hand. Hopefully this won't be such a long admition. Like you may already know I am almost 38 weeks!! I try updating as soon as I get more information.

God bless and please pray for all of our children.

January 29, 2005

We are still in the hospital;although Ashley is giving them negative cultures for the bacterias for the past 2 days. We have scheduled Ashley for her line to be removed for Monday that's if we get any positive cultures in the lines. I'm hoping that we don't have to put Ashley through this procedure. The other issue that we keep having is that Ashley keeps having high blood pressure. In reality the hypertension has been an issue in a while but, we've
had it under control. For some reason this time around the meds just don't seem to be doing it for us. So the cardioilogist are saying that when you keep having persistent high blood pressure some times it can be cardiac or renal??? Renal we don't think because Ashley has never had kidney problems and her labs look good as far as that goes. Today we gave her nifedipine and that has it under control.
Ashley is in great spirit. She looks happy, and playful. I will update once I hear something new.

Friday, January 21, 2005 3:24 PM CST

I know it's been awhile since I last updated. I've been trying to juggle everything around Ashley appts., getting everything ready for our trip down to Duke for Ashley 1 YEAR STUDY!!!!! Can you believe this cause I can't!!! and getting everything ready dor the baby that I'm expecting soon Feb 10.

First of all thank you for your good thoughts and prayers.
I must tell you you have all helped me a whole lot this past year. My daughter Ashley made it 1 YEAR POST TRANSPLANT!!! She still doesn't have a normal function even though she is going to be a year out on the 23 of January but the good thing is that she's here and is making normal enzyme levels wherea as 1 year ago she wasn't. I thank the lord for all he has done for my daughter and my family in general.

We just came back from Duke yesterday for Ashley 1 year studies. We left tuesday. The doctors were very happy with Ashley. All of Ashleys' test came back good. Her cortisol level was very low 0.9 but that was expected. For those that don't know what you cortisol is: basically the amt of steroids your own body is producing. Being that Ashley had a transplant and has been getting alot of steroids her body isn't really makingher steroids so for that reason when she does stop getting steroids she'll be onm hydrocortizone for a long time the doc. said to me yesterday. (Which I expected). Our main plan is to try to get Ashley of these steroids and immune suppresant drugs that she is currently on of course this will have to be done slowly just so that we can try getting her immune functions up so that we don't bump into other problems.

The "FISH" test is still pending and her enzyme level. Once I have that I will update. Other than that everybody is doing good. I feel like I'm about to burst but I still have about 3 more weeks.

I will stop writing now but I will update again soon. Hopefully I'll put in the new pictures. Take care and God bless.

Tuesday, January 4, 2005 5:49 PM CST

I hope that everyone has had a wonderful New Year....I personally feel very honored to have my Ashley here today with us. It's been a year since I heard those terrible words "your daughter has Hurler Syndrome"???????? Here we are today almost a year later from her receiving her new beginning. January 23 will be Ashley year out. Our immune functions are not where I would like to see them at but, I have my baby here today and that's what matters.
The journey has not been easy because of all the emotions that come along with all this and the families that you meet that in some way or the other have marked your life.
I feel thankful for each day and for the family that the lord has chosen for me.

The medical information:
1. Ashley continues to flare with skin gvh and we are really trying hard to get this settled without having to give her more steroids.

2. She continues having her sinus infection. Which we are treating with levaquin.

3. Ashleys' cardiomypathy is about the same. Atleast it's not getting worse. The subaortic stenosis did get better.

4. The tubes in her ears seem to not be working so we might end up removing them and having new ones placed because in her recent ct scan it showed that she has alot of fluid in her middle ear.

We were planning on going down to Duke around the 10 of this month but plans look like they might be changing since I'm already 34 weeks pregnant they don't feel to comfortable about me traveling at this point so if everything goes well we should be going sometime in March.
I may still have her doctors here in NY do some of the test that we were going to get in Duke. I just want to be sure that nothing is being left out for Ashley. This is a commitment that we made the minute we had her and all of this started so I will stick to that.

Other than that everything is going fairly well for us. I'm about to begin my preparations for the new baby which will be due Feb. 10. I am honestly looking forward for this day to come.
Lesley is doing great!!!!Very excited about her new sister.

Time to go God bless each and everyone of you and thank you for your love and support.

Monday, December 27, 2004 12:17 AM CST

Happy Holiday!!!!

Ashley continues doing good. We should be going down to Duke some time in January for her 1 year studies.

Tuesday, December 21, 2004 1:24 PM CST

My heart is aching because I just read Mikey web page and found out that he left to heaven on December 14. Mikey was another little boy that was on the unit with Ashley. His fight has been a long one....Sherry his mom is an amazing women!!!!Please check out his web page caringbridge.org/fl/mikey. My prayers go out to Sherry and the rest of the family.

We also need prayers for QUEENMADDY. She just got the news that her lukemia returned. Rachelle said that she is responding well to a medicine that they are giving her at this point but the fight is in trying to get her back to Duke to the DOCTORS THAT DID THE TRANSPLANT. Please pray that all goes well for this nice family and that they can take their little girl down to Duke once again. Her web page is caringbridge.org/ca/queenmaddy.

Ashley is doing very good. They are talking about giving her some ultraviolet light for her gvhd of the skin. They are trying to take her off the steroids. They believe this will do less damage to her than giving her steroids. Things are looking pretty good for us. Thank you for all your prayers. I am now 32 weeks pregnant. So far good. Lesley is doing great!!! Lesley I love you!!!! I honestly can not complain. The lord has blessed us tremendously...Around this time of the year we were doing all of Ashley work up for transplant. We spent our christmas in the Ronald Mcdonald House. What a blessing it is to have my baby here with us today and back home with her being fully engrafted!!!Thank you Lord...I just wish that everybody had the same. I can only wish because God has the last saying.

Monday, November 29, 2004 2:07 PM CST

Guess what guys!

The REPEAT ECHO that was done on wednesday to confirm if the effusion was really gone was NEGATIVE!!!! God answered our prayer!!!!!One more reason to believe that what he says is done is DONE!!!WE must not doubt him. On wednesday the doc. told me that there was basically some effusion he wasn't to sure( I went home not believing a thing he said as a matter of fact I didn't even bother to tell my husband and my family because I believed that the enemy could try to disguise himself just so that I would not have the faith that I put into the lord the day they said that there was no effusion) all he needs is for us to doubt the lord just alittle for him to come in a play with our minds and of course that wasn't happening!!!!! There was my answer.

The doctors are given the knowledge but they don't have the last saying!!!!Remember this.

Ashley is doing good. We will be coming to clinic once a week finally!!!! I need the rest since I'm getting pretty big. I'm already 7 months pregnant. So you can only imagine I have alot to juggle at this point.

We also had an ENT appt. today and they started ashley on some ear drops with antibiotics to try to soften the ear wax. She has alot of that built up and we need to remove that. So in two weeks we should see them again and then take it from there.

I can only give thanks to God for all that has come our way and thank him for atleast giving me my healthy Lesley!!!(She is my other big baby). These two girls and the one taht is coming are my motivation and the reason for my exsistence. This is why I will fight with Ashley and give this disease a fight!!!!

Thank you for all your support throughout this year!!! These encouraging messages and to see that I'm not alone help me stay this strong. Thank you all....Thank you Lesley for telling mami that you are here and not to worry that Ashley will be ok....These words meant a whole lot to be baby although you are just 6yrs.old.

Saturday, November 20, 2004 3:28 PM CST

It's amazing but true but it's been a year since I was given the news that Ashley had Hurler Syndrome on November 17. I felt so many emotions on that day. I felt happy because I knew that I had done what I could do for her to try to give her a better chance in life. At the same time I was sad because it brought me back to those terrible days of sadness, anxiety etc.
I feel a relief today in knowing that Ashley is now 98.5onor and making normal enzyme level. It feels good to know that there is hope in my daughters future and many other kids. Thank you Lord for this wonderful opportunity!!!

I still haven't received the immune function test from October and the enzyme level result but I am hoping that all will be fine. The other news is that on Friday of last week that did an echo on Ashley to check her hypertrophy cardiomypathy and her sub aortic stenosis and that found that Ashley had a moderate pericardial effusion but that the obstruction was actually better!!!
The effusion was the new finding and they didn't really know what caused it so on tuesday was when I was given the result on that same day I met a lady in the clinic who offered to say a prayer for Ashley. The amazing part is that this friday I go back to the hospital and the doctors decided that they wanted Ashley to get another echo done to check on the effusion. So I had the echo done and the cardiologist said to me "there is no trace of fluid in this childs heart, we don't know where it came from but we do know that at this point she has no fluid". To me that was another miracle GOD ANSWERED another one of our prayers. Thank you for that father!!! I just wanted to share this piece of information with you to give testimony THAT THERE IS A GOD AND HE IS A LIVING GOD!!!!WHEN WE ASK WITH FAITH HE ANSWERS!!!! Let's not loose hope and stay strong with our faith because only those that believe will see the glory of GOD.

GOD BLESS!!!!!

November 25, 2005

HAPPY THANKSGIVING!!!!

Friday, November 12, 2004 11:22 AM CST

I just wanted to let you all know that Ashley is doing good. We finally got the gvhd under control. She no longer has this. Thank God.

Thanks for your constant support.

Tuesday, November 2, 2004 11:28 AM CST

Hi everybody!! I hope you all are in good spirit these past few days. I have a couple of things that I would like to share with you guys:

ASHLEY IS 98.5LL DONOR!!! YEAHHHHHH and has NORMAL ENZYME LEVEL ACTIVITY!!!
As far as the transplant goes all is very promising BUT the fact that she had to be put back on steroids last Tuesday after another flare of GVH of her skin. I felt such a relief when we went down to Duke the week before and they had started her on hydrocortizone. Unfortunately the relief was given for a very short priod of time. I know that when God thinks it's the right time he will allow Ashley to go on without the need of using steroids but, I guess that time has not come for us. The rash is under control right now. We are planing on resuming the same course that we were on before this rash decided to flare again. Good thing that we've only dealt with gvh of the skin I believe it could of been alot worse.

Other than that Ashley is doing very good. She has become a whole lot smarter since we've been back home. She even shakes her head no when I ask if she wants something(of couse she only does this when she wants to but atleast I know that she knows how to do that).

My other daughter Lesley is doing very good. The one that I'm carrying is also doing very good(atleast that's what I think since everything so far that I've done looks like it's a healthy baby)Only God knows. I had a fetal echocardiogram done and so far this baby heart looks completely normal.

Please pray for all of the souls that have left us and say alittle prayer. Please pray for Evline who is currently in PICU in Duke. Evline for those who don't know has hurler syndrome like Ashley and also had a transplant. Please pray for this little angel. Her web site is caringbridge.org/ky/evline.

God bless and thanks for all of your support and for keeping Ashley in your thoughts and prayers.

Wednesday, October 20, 2004 2:36 PM CDT

We finally made it here. We arrived at 5am yesterday. We had Ashley vision appt. scheduled for 8:45 at Dr.Greene. Everything went well. The only new change was that Ashley will be wearing glasses now. She is near sighted so he feels that it's best for her.
We also went to her pulmonary function test and that went well also. She did need some albuterol because her oxygen volume was 76% and her pulse sox? was 96% This can be contributed to the fact that she is now on a very low steroids. I was told that sometimes when children start getting off these steroids they can sometimes see this happening. So all they would do in this case is start them on albuterol at home for whenever they need it. At this point I don't think that this happening.Her chest xray was clear I believe that they might start Ashley on hydrocortizone very soon probably this week.

I finally got to met Caterina mom and grandma and Evline grandmother. I was very happy. I didn't get a chance to see Caterina yesterday but hopefully I will probably get a chance to see Evline since she is in the Ronald Mcdonald House like I am.

Time to go now. I will be updating again. God bless.

Friday, October 15, 2004 12:48 AM CDT

Hello!

Everything is going pretty good up here. We are definately going to Duke on Monday 18. We are going for Ashley 9 months studies. Hopefully everything will be fine. We are staying there until thursday.

Ashley is doing good. We are finally down to 1mg of steroids 2x day. FINALLY!!!!NO GVH!!! Thank you God.

That's all for now. Please continue sending us your warm messages and prayers.

Tuesday, October 5, 2004 12:58 AM CDT

My heart is hurting today once again because one of the kids that was with us during transplant passed yesterday.
For those who got a chance to meet this great family know that these parents came down to Duke with all the hope a parent can possibly have to try to give their two sons the best in life. Unfortunately our friends Janet and Joe Joiner had to deliver Trevor Lee Joiner last night. I have been very touched by this family along with many others. I just hope that someday we can all understand why were we the chosen and why did this family have to lose BOTH OF THEIR CHILDREN TO THIS TERRIBLE DISEASE....MLD???? We will miss you very much Ross and Trevor Joiner. Your parents and you guys are extraordinary amazing people.

Ashley finally came out of the hospital on Thursday. Her blood pressure is stable thank God at this point. She is no longer getting FK506. She is now on cyclosporin again. The reason for this change was because Dr. Kurtzberg believes that FK can have some type contribution to her cardiac issues. Other than that Ashley is doing very good. She continues to be a very happy, playful child. Thank you for all of your support. Please say a special prayer for the Joiner Family. (caringbridge.org/tx/joinerboys)

Thursday, September 30, 2004 11:57 AM CDT

IT LOOKS LIKE WE WILL BE GETTING DISCHARGED TODAY!!!!

Monday, September 27, 2004 10:37 AM CDT

One more day in the hospital....It just feels like hours just never seem to go by but, all of this has just become part of our life hospitals, nurses and doctors and the list goes on.
Ashley is doing pretty good. We have reached the maximum dose of beta blocker that should be given to her and we are still trying to make some adjustments with her blood pressures since they have been running on the high side.

At this point I still don't have a definite day for discharge. They said that it all depends on how soon they can get her blood pressure stable.

Titi Isabel and Steven if I never said this to you guys:
Thank you for ALL OF YOUR SUPPORT!!!!! This all meant a whole lot to me. I've been wanting to call you guys. I keep saying I'll call later or tomorrow and so on. Thank you both so very much.

Everyone else thank you for your constant support and for checking up on Ashley.

Thursday, September 23, 2004 11:26 AM CDT

Day 245

Hello everybody. Its been quite a deal these past couple of weeks but the good thing is that everything recovered in a very postive way. Ashley is doing good. Her counts look good. The only thing that hasn't seem to recover is her rbc they seem to be coming down so they might have to put her a medicine to help her bone marrow make rbc faster.

The last update is that today Ashley will be readmitted into the hospital because on Friday they did a echocardiogram and it showed that the hypertrophycardiopathy is still present and it did get alittle worse but they also found a new progression
They found something called "Stenousis" under the aorta. What this is to my understanding is the contraction of her heart are not as strong as they should be so her heart is working extremely hard. Can this be dangerous??? Yes it can be...but that is why they are going to start her on a new heart medication called BETA BLOCKER. This is to help her heart contract better.

The reason why they are going to admitt for atleast 72 hrs is because she is already on hypertensive medication like Enalapril and Amolodipine for her high blood pressure (which at this point are maintaning her blood pressure within normal limits) that is why with the new medication her blood pressure can drop lower so they want to put her under observation in case this was to occure.

We are blaming all of these heart issues on some of the meds that she is on like the FK506. We are hoping that once this med. is stopped all of this will reverse itself.
I have faith in God and I'll just leave this to him and let it be what he wants of all this. I'm confident that all will go well. Ashley has great spirit and is a true fighter.

I also have another news to share with you all. I did have a sonogram this morning and was able to see the sex of this baby that I'm carrying an guess what??? ASHLEY AND LESLEY WILL BE HAVING ANOTHER SISTER!!!!! I'm actually 20 weeks now. The baby looks good. Now it's more of a waiting game and continue to pray for a healthy baby. Which is what really matters to me.

I'll keep you updated with any new update. Thank you for your constant support. Please continue to pray for all the kids in 5200 and all the others that are no longer here with us and are outpatient like my Ashley.

I must admit sometimes it's sooo hard to look back and remember all of the kids that I met while I was in 5200 and that are no longer here with us. My respect to Alex Johnson, Big Alex (5201) Lauren, baby Ross, Tanika, Shane, Master T, baby Josh and Jacob, Alexis Chapman. You will always be in my heart.

Thursday, September 9, 2004 10:27 AM CDT

Ashley is had a good turn around. The bacterias that she had are coming back negative but they are still treating her with antibiotics. We are scheduled to get discharged tomorrow Friday.

Ashley seems to be very comfortable. I feel so overjoyed that Ashley had such a positive turn around. It was some experience to see all that was taking place last Tuesday. Thank God everything turned out good. Ashley will be on Vancomycin and Levoquin at home.

The other procedure that's supposed to take place today is the removal of her temporary line and put in her new central line which will be permanant. Hopefully all will go well even though they said that they will have to intubate for this procedure. For those who don't know Ashley has small airways and that will always be a concern for me.

Once again thank you for all of your support and prayers.
I would like to have a special request please pray for Mikey and Sherry. Mikey had his transplant when I was inpatient and is in Duke at this point again. You may want to check out their web site caringbridge.org/fl/mikey. Please pray for them.

Saturday, September 4, 2004 9:02 AM CDT

Ashley is doing alot better!!!

Yesterday we had to get her lines removed for the fifth time. They had to do this because the line was infected and with all the antibiotics that she was being given the infection didn't seem to clear. During surgery thank God everything turned out good after almost 2 hrs. It took alittle longer than expected because they were trying to put in another central line but they couldn't so we have in a temporary one for now. Her counts are a little better. I 'm hoping that with this infected line being removed that bacteria should also clear. Please continue praying for Ashley and for the other children in 5200. Especially for Folden Lee IV who recently went to heaven.

Thursday, September 2, 2004 11:47 AM CDT

Unfortunatly I don't really have good news to tell you guys.

Ashley has been readmitted into the hospital since Tuesday. On Monday when we went for our regular check-up Ashley had a vomit episode but I thought that the reason why she did that was because before that they were trying to get her blood pressure. Well everything "seemed ok" and we went home. At home once again she threw up again the milk that I had given her earlier back when we were in the hospital but I found it kind of weird since Ashley doesn't usually throw up. The following day she threw up again so I called up her doctor and we came to the conclusion that I should take her in just to get blood cultures since she doesn't usually throw up.

When we got there like around 3:00pm they took her vital signs and they looked good. We went to get her blood cultures and like the usual her lines didn't want to draw back some blood so they decided to put some TPA in both lumens. Like about close to the hour she started to shake but I thought it was just that she was cold since the room felt alittle cold I asked for a blanket and then my husband says to me that he felt that wasn't right since she wasn't shaking earlier and then he noticed that her skin tone didn't look good so he said to me that we should tell the nurse just in case. This all happened very fast. I told her nurse that Ashley was shaking a little. She automatically knew that Ashley was having a septic shock. Everybody responded very fast they hooked her up to the machine to monitor her blood pressure and heart rate and blood oxygen. Her blood pressure was extremely high her heart rate was 212!! Her sats weren't good either. They sent her labs in and when we got them they read like this:
PLATELETS 163,000 THE DAY BEFORE(MONDAY) TO 54
WBC FROM 15 TO 1.1 OR LESS everything went down her labs just didn't look good. They knew then that their was an infection in the cather and that when they put the TPA in it just pushed the in fection into the blood stream.

I was very, very scared. I couldn't believe what was going on. It just happened to fast. Ashley apparantly looked good but the truth was that all along she had this infection trying to sneak up. They decided to admit her into intensive care because they were concerned and considering that she has that hypertrophy cardiopathy they wanted to monitor her closely.

The next day (Wednesday) we got the blood cultures back and we were right, there was an infection and not a good one either. They call it "negative gram bacterial infection in the blood.

We were in intensive care from tuesday till yesterday night. Ashley was stable (thank God) her blood pressure seemed to had gotten better and they didn't have to intervene in any major way.
Last night we were moved to the transplant floor and we know that with this type of infection there really wasn't anything that we could of done to prevent this. They said that this bacteria probably started in her intestines and then stuck itself to the cather when we put the tpa in it pushed everything and disloged the infection into the blood

Right now Ashley is being treated with antibiotics since all this started to happen. We started out with 3 antibiotics Vancomycin,Tobramycin and Zoysyn. Today they stopped the vancomycin. Everything seems to slowly begin to get better although she still is giving positive cultures and we are talking about removing her lines tommorrow. Her labs are not looking their best right now but they blame it on the bacteria infection. She had to get GCSF yesterday because of her low wbc and today they had to transfuse her with rb cells and platlets because her platlets were 23 and her hemoglobin was 6.6.

We are not compleletly out of the woods but we will be!!! Please pray that all goes well because - gram infections can be very serious. Ashley is still trying to be herself smiling whenever she can and babbling like always but when I look her counts I know that internally she is not.
This is the first time in months that we had to get transfused and receive GCSF and that I see Ashley counts so LOW I mean LOW.

This has been very scary. I am hoping for a fast recovery. I know and believe that nothing is impossible for the Lord to do. Please pray for her fast healing. If anyone wants to call me this is our hospital # 1212-342-4341.

Thursday, September 2, 2004 11:47 AM CDT

Friday, August 27, 2004 8:02 AM CDT

Your right Rachelle....It is time for a new update. The truth is that there really hasn't been much going on. (That's a good thing don't get me wrong). Ashley is doing good. We are trying to get her off the steroids and EVERYTIME we TRY getting her off she gets the gvh on her skin. It doesn't get to a point where we can't control it all we need to do is increase the steroids once again and that'll do it. Sometimes I just sit and wonder when will my baby get off these steroids???She isn't walking yet, it will only make the heart issue worse but than again she needs them. It just seems like there is always something to this whole thing.
The only thing that is helping me carry on with all of these challenges is my faith in the lord. To know that he knows what he is doing and to know that he makes no mistakes.
The other thing that was really bothering me lately was that sometime back when we were in NC I accidently gave Ashley her FK506 through the wrong lumen and this happened about 3months or so and can you believe that the level is still to HIGH!! and poor Ashley needs to get poked EVERYTIME WE GO TO THE HOSPITAL TO A POINT WHERE THEY SOMETIMES STICK HER 3x's and squeeze her foot to try to get some blood because her veins are just hard to find. This really hurts...Now they are even considering a new line since they too don't comfortable with having to stick her all the time.
Other than this everything else is going well. Ashley will soon start getting all of her therepies PT,OT, speech and a special instructor. Atleast this is going to help Ashley in recovering all she's delayed in.

Time to go now. I miss all of my people.GOD BLESS AND REMEMBER DON'T LOOSE THE FAITH!!

Thursday, August 12, 2004 4:17 PM CDT

DO YOU WANT TO HEAR SOME GOOD NEWS??????

ASHLEY IS 97.5% ALL DONOR AND IS PRODUCING NORMAL ENZYME LEVEL!!!!!

WE ARE 7 MONTHS OUT OF TRANSPLANT....THIS WAS REALLY GOOD NEWS TO KNOW THAT THINGS ARE WORKING ITS WAY THROUGH IN A VERY POSITIVE WAY.

ISN'T GOD GOOD GUYS? HE SURE IS.

THE NEW MEDICINE THAT THEY JUST RECENTLY STARTED HER ON ALSO GAVE THE DOCTORS A GOOD LEVEL TO BEGIN WITH. THIS THEY ALSO THOUGHT WAS GREAT BECAUSE THEY TEND TO HAVE SOME DIFFICULTIES IN GETTING THEM ON A GOOD LEVEL. ONCE AGAIN GOD DID HIS DEED. ALL I CAN SAY AT THIS POINT IS THANK YOU LORD FOR ALL OF YOUR BLESSINGS.

Tuesday, August 10, 2004 3:19 PM CDT

Hi guys....

I hope that you are all feeling and doing good.
Ashley is doing good. We just started her on a new medicine for gvhd called mmf (cellcept) the reason they started her on this is because everytime we try weaning her off the steroids she seems to flare up with some skin gvh. This is supposed to help us along with the steroids. We'll see what happens other than that she seems to doing pretty good.

Please continue sending your warm messages since they are always nice to read. God bless.

Saturday, July 31, 2004 1:59 PM CDT

Hello everybody!!!
It's been a while since my last update.

We were recently down in Duke with Ashley for her 6 months check up. It was a long ride like expected but a smooth one. While we were there everything was good. The Dr. were pleased with Ashley. the only thing was that they want to take her off steroids. ashley's been on steroids for the past 7 months now. Like you may already know steroids have alot of side effects and being that Ashley has that obstruction and the hypertrophy it is not a good thing to continue having her on these steroids. Nothing has really changed since transplant. The good thing is that the disorder is not progressing.

Let's see what else did I not mention???? Once Ashley comes off steroids which depends if she doesn't get gvh again they are planning on putting her on hydrocortizone. Which has no side effects. Alot of kids that have been on steroids usually end up on hydrocortizone. We don't really know for how long she would have to be on that medicine.

Everything else is going well for us back home.
Now Ashley is starting to say mama and mami isn't that nice?? Hearing your children saying this always makes a mother happy.

As far as my pregnancy goes I'm doing good. I'm almost 3 months now. I am not going to have an amio done. WHY??? because I don't want to jeopardize this baby in any kind of way. I was told that in a bout 200 amio probably one case may come where something might happen well given that I was told that in 150,000 births one child would ne born with Hurlers and guess what I HAD A CHILD BORN WITH HURLER. I'm not nervous about this baby being sick even though I know that the chance is there but for some reason I am not scared. This might be GOD giving me a message already and if things were to turn out different then I now know what to look for and the baby will be tested as soon as it's born. I read psalm 139 in the bible and it said that God knows his creation way before we are even born and God makes no mistakes no matter how harsh these sicknesses may sound to us humans but everything happens for a reason. I will not question him I will wait and see and have a back up plan ready just in case.

Please continue praying for all of our children and for all of the parents that lost there children through this:
Leslie&Joe for their son Shane;Janet&Joe for Ross;Mary&Kell for Alex;Luz&Steve for Jacob;Maura for Lauren;Charlene&Chris for Josh;Mrs.Brown for Master T. And for everybody who I did not mention. May the lord see each and everyone of you through this difficult time and give your hearts the comfort yo all lone for.

For all of the other families in 5200 and PICU and for all of our children outpatient. Please pray for all.

Tuesday, June 29, 2004 6:29 PM CDT

HELLO EVERYONE!!!!
WE ARE FINALLY BACK HOME NOW IT'S BEEN A WEEK NOW. IT FEELS GOOD I MUST TELL YOU BUT CERTAIN THINGS AND PROCEDURES JUST DONM'T SEEM TO CHANGE. BUT THE GOOD THING IS THAT I'M BACK HOME WITH MY DAUGHTER AND WITH A JOURNEY FILLED WITH HOPES. I REMEMBER LOOKING BACK BEFORE ALL THIS NIGHTMARE HAD STARTED AND WOW LIFE DID CHANGE!!! ASHLEY IS DOING GREAT!!! WE JUST HAD ANOTHER ECHO DONE TODAY AND GUESS WHAT???? THE ECHO LOOKS GREAT!!!! IT'S GOOD BECAUSE I WAS TOLD THAT THE OBSTRUCTION IS GETTING BETTER ON IT'S OWN AND THAT OVERALL THEY ARE PLEASED WITH THE ECHO FROM TODAY. THE CONCLUSION TO THIS STORY IS THAT THE HEART SEEMS TO BEFIXING ITSELF WITH THE HELP OF OUR FATHER DIVINE INTERVENTION. ISN'T GOD GOOD GUYS??? I LIKE THE HOSPITAL THAT WE GO TO COLUMBIA PRESBYTERIAN THEY RUN THERE THINGS VERY SIMILAR TO THE WAY HOW DUKE DOES IT (IT MAY NEVER BE EXACTLY LIKE DUKE YOU KNOW BUT OVER ALL I'M HAPPY) WE HAVE A DOCTOR WHO HAS BEEN VERY GOOD TO US AND FOLLOWS DUKE POLICY. THISIS GOOD BECAUSE I WILL HAVE ONE LESS HEADACHE TO DEAL WITH.
I MISS EVERYBODY VERY MUCH AND I WANT TO THANK YOU ALL FOR ALL OF YOUR SUPPORT!!!

I HAVE ONE LAST THING TO SHARE WITH YOU GUYS AND I KNOW THAT WHEN ALOT OF YOU HEAR THIS YOU WILL BE STUNNED THE SAME WAY I AM AT THIS POINT... I RECENTLY FOUNF OUT THAT I'M EXPECTING CHILD #3!!!! I CANNOT BELIEVE THIS MYSELF BECAUSE I WAS TAKING GOOD CARE OF MYSELF TRYING TO AVOID ANOTHER CHILD BECAUSE I AM NO WHERE NEAR READY FOR ANY OF THIS AT THIS POINT AND BECAUSE ASHLEY'S CONDITION AND THE FEAR OF THAT SLIGHT CHANCE OF ANOTHER UNHEALTHY CHILD. ALL OF YOU THAT GOT TO KNOW ME KNOW HOW MUCH I FEARED ANOTHER PREGNANCY ESPECIALLY NOW. I AM DETERMINED TO CONTINUE WITH THE PREGNANCY BECAUSE I DON'T BELIEVE IN ABORTIONS AND BECAUSE I BELIEVE THAT GOD HAS HIS PLAN I JUST HOPE AND PRAY THAT THIS CHILD IS HEALTHY. ONLY GOD MAY KNOW WHY THOS WAS ALLOWED. AND I WILL TRY TO HANDLE THIS NEW CHALLENGE. I AM THINKING OF DOING AN AMIOCENTISIS JUST SO THAT I KNOW WHAT TO EXPECT WITH THE NEXT MONTHS TO COME. AT THIS POINT I DON'T KNOW HOW FAR ALONG I AM. PLEASE CONTINUE PRAYING FOR ASHLEY AND FOR THE HEALTH O THIS BABY TO COME.

TIME TO GO NOW. GOD BLESS

Saturday, June 19, 2004 4:41 PM CDT

We were finally discharged this past thursday. Ashley is doing good. We will be returning back home Monday morning.

I am so happy. I can finally go home and be with my family once again. It's been an experience for all of us and I will never forget all that has taken place and all of the people that I've met through out all of this.

I will continue keeping you all updated on Ashley.

THANK YOU GOD FOR HEARING OUR PRAYERS!!AND FOR GIVING ME THE STRENGTH AND COURAGE TO GO ON DAY BY DAY!!!YOU KNOW MY HEART AND THOUGHTS,MY DESIRES AND WISHES....THANK YOU!!!

Thank you all for your support!!! I don't know how was I going to go on and keep up with everything if it wasn't because of each and everyone of you. Those people know who they are.

I also want to thank my husband and my family for all of their support. Ashley will continue getting her care in Columbia Presbyterian in NY.

THANK YOU AND GOD BLESS!!!!!

Sunday, June 13, 2004 12:27 AM CDT

DAY 142

Things are looking good for us. We are still on the road to returning back home on Monday of the following week. I know I had mentioned Thurday or Friday but plans changed.

It's not a bad thing because they will only have more time to see what her magnesuim levels are doing. They've been dropping to as low as 1.2. I really would feel more comfortable staying here over the weekend in case something was to change (I hope not) I would have access to clinic. Where as if I go home I won't have a clinic open over the weekend.

My sister-In-law is getting married and I really wanted to attend to her wedding but, I know that everything will turn out just right for her on her special day. She deserves it!

Atleast God will give me the opportunity to attend Lesleys' graduation ceremony. It would really be something for me to have to miss both occasions. God bless you!!!!

Thursday, June 10, 2004 4:52 PM CDT

Day 139!!!!

FINALLY!!!! WE FINALLY HAVE A DATE TO GO BACK HOME...WE ARE BEING SCHEDULED FOR THURSDAY OR FRIDAY OF NEXT WEEK!!!!
I CAN'T BELIEVE IT....I'VE BEEN LOOKING FOR THAT DAY TO COME AND WE ARE FINALLY GETTING THERE.

THINGS LOOK LIKE ASHLEY HAS BEEN SET UP WITH A DOCTOR IN COLUMBIA PRESBYTERIAN IN NY, WE WILL ALSO HAVE CARDIOLOGIST SPECIALIST FOLLOWING UP ON ASHLEY AND WE ARE IN THE PROCESS OF GETTING OUR HOME HEALTH COMPANY IN NY.

THANK YOU GOD!!!!!I HAVE ALOT OF REASONS TO BE GIVING YOU THANKS AND FOR ALLOWING ME TO RETURN BACK HOME WITH MY BABY IN MY ARMS IS JUST A GREAT FEELING!!!!

ASHLEY IS LOOKING GOOD AND IS DOING GOOD. SHE HASN'T RECEIVED ANY BLOOD IN OVER A MONTH, PLATELETS AND WBC LOOK NORMAL.

GOD ANSWERED ANOTHER ONE OF MY PRAYERS AND THAT WAS TO ALLOW ME TO ATLEAST ME BACK HOME IN TIME TO ATTEND LESLEYS' GRADUATION.

THANK YOU ALL FOR YOUR SUPPORT....I WILL CONTINUE KEEPING YOU UPDATED. THANK YOU FOR ALL OF THE MESSAGES THEY REALLY HELP.

JUST PRAY THAT EVERYTHINH KEEPS GOING WELL FOR US SO THAT WE CAN FINALLY BE A FAMILY AGAIN.

Saturday, June 5, 2004 11:29 AM CDT

Ashley is doing good. We are still waiting to hear an official date for us returning back home. It seems as if everytime the date gets closer for us to leave there always seems to be that"we'll see how she does next week and then we'll see if she is ready to leave". Honestly that's how it is. Right now at this point the Dr. said to me that depending on how she does this week with her steroids down to 3ml by IV and how the rash on her upper part of the body looks (which by the way it's almost completely gone) then they'll decide if they don't make the decision this Thursday then I will be hanging around here until the end of June basically because our Dr. will be leaving for vacation on the 11 and returning back June 23.

I just want to go home already and I really want to be in my daughters graduation ceremony atleast.

I'm hoping that Ashley continues recovery and that my Dr. can say to me on Thursday YES YOU ARE READY TO GO BACK TO NY!!!

We also had Ashley echo done yesterday, so hopefully everything will be fine.

Saturday, May 29, 2004 5:31 PM CDT

Hi guys!!

Ashley is doing good. We went to clinic today and her weight was up some so they gave her some lasic. They also gave her some extra dose of steroids to try treating the GVH on her skin before it gets out of hand. Yes, we are dealing with a little of that right now. Everytime they try putting Ashley on oral that rash just tends to flare up. I was told today by one of the nurse practioners that some kids just tend to get those rashes on and off and that the farther away from transplant the less likely it is for it to keep coming or to continue getting worse when ever it does show up.

Plans are still the same as far as us leaving back home to New York. So hopefully everything will turn out well for Ashley.

Time to go now. Hope you all had a nice day. GOD BLESS!!!

Happy Birthday Minerva!!! (That's one of my sisters) Me and my family wish you the best to come this new year for you. We love you and take care. Besos.

Friday, May 28, 2004 6:43 PM CDT

Hola Amigos!!

Today is a very special day for me. On a day like this was when I started dating my husband. The person that is very special in my life and in the life of my children that we have in common.

Ashley continues looking good. We went to clinic yersterday and we got the echocardiogram results from Wednesday. I wasn't to pleased with the results because I was told that the aorta had some type of obstuction and that she has something called left ventrical hypertrophy. We did know that her heart was a little muscular on the left side. This was said when we did her other echo around the 10 of May but what they think is an aorta obstruction is new and it hasn't even been a month since the other echo test!!

We know that the muscular part can be caused by the FK506 and steroids she's on but I really don't like the obstruction of the blood trying to pump it's way out and having to find some obstruction. They found a level which is 45 right now and the Doc. say that if it is 45 they would just monitor closely but if it gets to 65 for a child her age than they'll do something. They are planning on doing another echo sometime next week and have her sedated so that they can get a good look at the heart. She will have her own cardiologist that will be following up on her. What ever it may be they will take care of, and I will be right behind her making sure that nothing is left unattended.

As far as the transplant goes everything is looking great!!! She is making alot of red blood cells,platlet count is good, her wbc is great (finally down to what is considered normal range).

They don't think that our discharge home,home has to be prosponed because we will be going to Columbia Prespyterian in New York and they have an excellent cardiologist dept. there. We are back to IV steroids because Ashley's body seems not to be obsorbing it well by mouth yet.

I took Ashley out to Duke Gardens today along with some friends. This was a nice thing to do. Ashley looked like she was enjoying everything about the trip.

My friends please pray that Ashley's heart can overcome and tolerate all of these medicines that are being given to her. The FK506 and Sterods she's on help us with one thing BUT can cause us other issues some place else. I know that GOD is in control and will only allowe what he thinks is going to be best for Ashley.

Time to go now. You all take good care of yourselves and value life, health and your kids like you never did before.
Talking from experience.

Monday, May 24, 2004 4:38 PM CDT

Ashley is 121 days post transplant. Ashley is looking good!!! We are still talking about leaving the first week of June if not the second week. I can't wait to be back home. I miss having my daughter Lesley around. It hurts when I only have her here for a day or two and then I have to see her leave and knowing that she really doesn't want to leave me and her sister here.

So hopefully this time God will allow for us to go home.

Saturday, May 22, 2004 4:11 PM CDT

Today is day 119 post transplant for Ashley!!!Yeahhh!!!
Ashley is looking good. Everything is basically the same. We are aiming to go home the first week of June to the second week. All of her medicines are oral at this point. So we are on the right track.

I am also expecting my husband and daughter Lesley in town today. It will be nice seeing them again. It's been 3 weeks since I last saw them.

I want to thank everyone who has sent out their prayers and good wishes out to my family. Trust me all of our prayers have been heard!!!Ashley has done extremely well...She's had some bumps but God has helped her come around fast. Thank you all for your support!!!

I've also met some wonderful people here in NC and I will forever be grateful for all them. These people know who they are. Thank you all very much.

The nurses and doctors in Duke, families in 5200,my titi Isabel and Uncle Steven,Irma and friends in the RMH and many more......and my friends on the web THANK YOU ALL!!!!

Monday, May 17, 2004 2:12 PM CDT

Everything went well in clinic today! Ashley platelets are actually climbing up again!!! Today they were actually 177. She also seems to be making some rbc on her own since they were higher than thursday.

I asked if they are thinking about sending us home soon and I was told that they'll probably see about the first week in June. I hope that can be accomplished.
Ashley will more than likely be sent home with her central line in case they were to need it and we don't really have another place for another line.(she's already had 3 placed)

That's all for now...Just hoping she continues doing good so we can be back home again.

Take care

Sunday, May 16, 2004 5:55 PM CDT

Today is day #114 post transplant for Ashley. Everything is going good. We stopped her zithromax(antibiotic)on Friday. Today will also be her last vancomycin dose also. We are down to 4ml. with the steroids. I'm hoping that we can atleast be back home in June.

The days just don't seem to go by. Although I know that there is a good cause behind all of this but, I just can't seem to stop feeling bored and missing my people back home.

Once again thank you all for all of your messages. Keep writing to us.

I KNOW THAT GOD IS WITH ME AND ASHLEY AND WILL HELP ME GET BY EACH DAY AND THE CHALLENGES THEY HOLD WITHIN....I'LL JUST TRY TO CONTINUE STAYING FOCUS AND TAKE IT DAY BY DAY

I love you Lesley!!!!

Friday, May 14, 2004 4:14 PM CDT

Hello!!!!I feel very excited right now because I love receiving all of the encouraging messages that I receive daily. If it wasn't cause of God and you guys this journey would of been really hard.....

Ashley continues doing good each day. That set back that we had is over now thank God!!! Today they gave her IVIG the med. we gave her last thursday when she gave us that episode. Thank God she did well with that today.
Ashleys' platelets continue going up once again. Everything looks good guys!!!believe me it is and I hope it stays that way so that we can soon be back home with my family. Who I miss very much.

Keep sending us your good wishes and prayers.

GOD BLESS YOU ALL!!! NEVER DOUBT HIM BECAUSE HE IS REAL!!!!

Tuesday, May 11, 2004 7:33 PM CDT

Hi guys! We are finally out of the hospital!!!! I've been trying to get in and give you guys an update but I was unable to. Here I am once again..Like some of you my already know thursday morning I wake up and give Ashley her bottle and realized that she was weazing and was breathing hard...here I am asking myself what is going on now?????I was already dealing with a line infection now whats new???I got her dressed and headed to the clinic. The good thing was that Ashley usually goes to clinic on Thursday anyway so that had me up early because it wasn't until she woke up that I noticed what was going on.
Once I'm in clinic I let the nurse know about what was going on with my baby...they started checking her and then decided to give her albuterol(nebulizer) that helped some but was still weazing.then they started her IVIG but right before that Ashley looked a little pale but I didn't think much of it until.....( it wasn't long) one of the nurses from the chc comes into my room to take her blood pressure and says to me Ashley looks pale Angela so I knew it wasn't just me and we got the doc. in then...she starts to throw up some and looked even worse whenever she threw up..here we are her blood pressure was high and her pulse rate was also high 175-200!! to make a long story short they started her another nebulizer and stopped the IVIG and started antibiotics at this point the doc. had already sent out some blood cultures because we were looking to see what was going on. We weren't sure if she got pale because of the fact that she was breathing hard or if she had a reaction to IVIG (IVIG is like getting a blood, platelet transfussion because this product comes from humans also) then the blood they sent to recheck her blood count comes back with her wbc at 30.000 and the blood I had taken said earlier that her wbc was 7 now the problem here was that her wbc got tooooo high that can be a sign of infection..then Dr. Prasad sends for a chest x-ray to see what her chest looks like and that didn't look good.
They decide to give lots of antibiotics trying to cover her if it were an infection in her lungs like something called PCP....We really didn't know what was going on she looked pale,blood pressure was then low(actuallyl low for Ashley since she's been having high blood pressure but normal for a child her age),then she's throwing up and just didn't look right and her chest x-ray didn't look good either.

Dr.Prasad decides to keep her in the hospital and watch her closely and see if they can determine what had really happened....they had an idea but too many things were happening at the same time.

In the hospital they kept giving her antibiotics and medicine that would help her if she were to have that lung infection. They continued taking x-rays until finally they started coming back with improvement. Yesterday her chest x-ray was clear and everything seem to have settled. We know that she doesn't have an infection in her lungs and doesn't have pcp because it would have cleared so fast.

I'm back home once again with my baby and she looks good everything is fine once again. We think it was probably a reaction to the IVIG her heart studies look good since we also thought that maybe her heart wasn't pumping to fast and caused fluid to leak into the lungs.

I'm glad to be back home. Trust me she looks good. The scare is finally over.... We are on some extra meds but that's ok as long as Ashley stays healthy!!! Thank you for your support. God bless you!!

Have to go now just wanted you all to know that we are doing fine.
Bye, Angela&Ashley

Friday, May 7, 2004 12:58 AM CDT

Hi to all my friends...Like I had mentioned in my previous journal entry we are back in the hospital. This all happened yesterday. In the morning when I woke up Ashley I noticed that she was weazing and breathing hard. The good thing was that I had to go to the clinic anyway since it was her big day. They checked her right away her heart rate was 200 the lowest it got was 176 or so. She wasn't looking to good because of the way that she was breathing. They started her on albuterol which is a nebulizer that worked some but even before that Ashley was already looking kind of pale. Then they started her IVIG she started looking worse and started to vomit. I was very concerned...Dr.Prasad ordered the IVIG should be stopped immediately because we weren't sure if it was getting a reaction to the med. anyway they gave a couple of meds. My room was filled with people checking Ashley...I was very scared!!!!Her blood pressure was lower (actually "normal" for a child her age but not for Ashley whose blood pressure is high after transplant..)Dr. Prasad ordered a chest x-ray (that didn't look good.) They think she might have something they call PCP or pulmonary adema which is a type of infection...At this point we are not quite sure exactly what it is that's going on but talk to you later once again. I'll be going to 5300 soon

Friday, May 7, 2004 11:12 AM CDT

Hello to all....I just wanted to share with you all that Ashley has been readmitted into the hospital. This all happened yesterday. I noticed that she was weazing and breathing kind of hard so I went ahead and took her to the hospital although she had to go anyway because it was her big day in the rainbow day clinic. She had a heart rate of 200 and the lowest 175. Her blood pressure was also low (normal level for a kid her age but not for ashley who has been running on the high side since transplant) To make a long story short since I have to go back to the clinic. I just came to pick up some clothing for us. Ashley was pale,she just didn't look like herself. Dr. Prasad did a chest x-ray that didn't look good....They think she has some type of pulmonary adema? the type that kids with cancer suppressed immune systems get. I'll be in 5300 in step down. They don't have a room for us in 5200. Talk to ya later gott to go

Tuesday, May 4, 2004 4:59 PM CDT

Hola!! Ashley is feeling good today. We are still trying to get rid of that infection and that terrible virus. Her platelets came down a little more. Once again we believe its because of the infection and the antibiotic she's on. I still don't know when I'll finally be leaving from here but, the truth is that I prefer to stay here until Ashley is o.k. to return back to N.Y. Days are feeling longer than ever for me but that's because I don't have much to do and alot of the people that I was close to are no longer here. I just want to say thank you all for your support and prayers.

Ashley y yo estamos bien. Todavia estamos tratando de liberarnos de este virus y de esta infeccion. Por lo menos que los Doctores ya tienen idea de lo que realmente estaba causando el crecimiento de las cellulas blanca. Yo me encuentro un poquito sola porque la mayoria de las personas con la cual yo compartia ya se regresaron a su casas. Lo mas importante es saber que estamos aqui mas tiempo porque tengo que continuar ayudando a mi hija en su recuperacion. Pronto estaremos junto yo y mi familia.

Thursday, April 29, 2004 7:32 PM CDT

Fist of all I want to thank each and everyone of you who have sent me so many encouraging messages. Yes I need to hear these words so that I may continue my journey. I saw everything was going so good and I thought that by day 100 I would of been back home. It turns out that they don't know exactly when I'll be leaving now. I received a phone call from my Doctor today this morning telling me that they did find an infection in Ashleys' red lumen. Atleast we now know why her wbc was elevated. That gave me some relief but the one news I didn't like was that Ashley has the ADNOE VIRUS AGAIN!!!!The doctor told me that there was a possibilty that it NEVER LEFT but that it was probably to small to detect again when they did the cultures. That was probably why it came back negative. Here I am once again dealing with that horrible virus that has taken so many of my friends children. The doctor said that "yes the Adnoe can be high risk but, what is in our favor is that she's this far out almost 100 and she has some wbc to help fight it. Yes when I was told back in February that she was postive for the Adnoe virus I was told that atleast we had some wbc to fight it but here we are still with this virus. I just hope that it doesn't get out of control. Her platelets dropped from 193,000-107,000 in ONE DAY!! Once again they said it is alittle concerning but that it's probably because of her infection in the line. For those that don't remember your platelets can drop when there is an infection. I just keep asking God for his healing powers. I know that I'm not alone. I know he's here with us. I just hope he pray that he heals Ashley and help us
go home soon.... We are getting antibiotics for the infection. Have to go now Ashley is upset right now.

Monday, April 26, 2004 1:22 PM CDT

Hola....(HI) Everything is going well so far. We actually had our first 100 day studies appt. Pulmonary function test which went well. We had a couple of blood work to do today and that was also good. Ashley hemolglobin actually went up since Thursday. From 8.60-9.0 on her own!! Her wbc is still on the high side now it is 22. The doctors say this can be just that her marrow is just making tons of everything. They really don't think that anything major is going on because her platelets are 195,000. If there were to be an infection her platelets would drop. THAT IS NOT HAPPENING AS YOU CAN ALL SEE!!!! At this point I'm trying to take day by day. Reminding myself that nothing could impossible when you say that you've put the situation in GODS HANDS and that's exactly what I did since day 1. Ashley engrafted early and that too was a bit of concern although they said that they have seen that happening with the little ones. It turns out that she was basically all donor!!! Now I don't see why this can't be the case again. GOD is performing another one of his miacles on Ashley making her bone marrow work harder so that her recovery can come sooner than I expect. I trust God with all my heart, and I believe that nothing is impossible for him to do. Why feel fear? when GOD is in CONTROL. Once again I'm human and there are times when fear wants to invade you and take over. God doesn't want his children to fear. When you fear your giving the "BAD" an opportunity to take over. Here I am today on day 94 still asking GOD to continue glorifying himself on Ashley and all of the other children that are also waiting for that miracle to come there way.
GOD IS IN CONTROL, AND WILL CONTINUE TO BE IN CONTROL OF MY LIFE AND OF THE ONES THAT I LOVE MOST!!!!!!!!!!!

Saturday, April 24, 2004 11:29 AM CDT

Today we are actually on day 92 post transplant. Ashley continues doing good. Thank God for this miracle. I was told on Thursday that I was going to have to stay here for another 3-4 weeks. The reason they are doing this is because they want to make sure that the GVH is kept under control and her steroids need to be weaned also. I was really excited about knowing that soon we were going to be home again but, if this is towards Ashleys benefit than I don't have a problem with this change. Her wbc is still elevated. It was actually 19.4 I believe on Thursday. We don't really know why. They did stop the antibiotics. We want to see what is going to happen with her wbc. I am just hoping that once again this is all Ashleys' doing.

Please continue praying for all of these children especially for those in the unit.

Bethany if you happen to read this your baby is coming soon. I hope your feeling good and ready for this baby.

Wednesday, April 21, 2004 1:15 PM CDT

Hola! We seem to be getting are stuff together again. Ashley was put on some antibiotics in case there was some infection but, yesterday I was told that nothing has grown in the cultures that took on Monday. Her wbc today was actually down to 15. They are not sure if it was because of the antibiotics. The GOOD thing is that everything seems to have been just God giving me a wake up call in case I was slacking off on something (which I doubt I was) but anyway we are doing fine. Still missing home and my family...Keep on sending those prayers please.

To my daughter Lesley, Remember mami loves you. We will soon be together again!!I love you honey.

Monday, April 19, 2004 2:55 PM CDT

Today has been a very scaring day for me. The reason why I say this is because I was told that Ashley's wbc went up from 10-20. They think this was a pretty big jump. Sometimes when a child has an infection this can occure. There is a number of reasons to why this could of happened. First of all they increased her steroids to help get rid of her GVH.
Second it could just be that her wbc went up. Now they have seen this happen before in small kids but, the fact that she usually goes up slowly not so fast is concerning to them.
Remember transplants are very risky that is why they can't rule out anything from happening. So they decided to culture her lines for infections her blood and urine. Thyey also sent her for a chest x-ray. The result from that was good. Her chest looks good. Now I need to wait for the other cultures to come back.
I just don't want Ashley to get an infection this is not a good thing. Although they may be able to treat it. If that were to be the case. But you just don't need infections or viruses.Hopefully everything will be o.k. She looks good.

Thursday, April 15, 2004 3:58 PM CDT

Ashley is on day 85 out of transplant!!! Ashley's GVH on her skin is healing. This is after they increased her fk506 level and steroids. Today we went to clinic and I was told that her platelet are up to 183,000 her wbc went up also hemoglobin. Isn't God wonderful? Ashley had to get magnesuim today in clinic because it was alittle low. The Doc. think this happened because her FK 506. It's alittle harder to absorb and the kidneys are working alittle harder. For those who might be wondering why give them magnesium? Well, because magnesium help prevent seizures from occuring. So they don't want it to be low. Once again everything is o.k. here right now. Thank you all for your support. Please continue praying for our childrens health.

Sunday, April 11, 2004 8:46 AM CDT

Hi guys. Things are looking o.k. down here for us. Ashleys rash seems to be healing. They increased her steroids to help treat what they think is GVH on skin. Ashley platelet level is 144,000 close to being normal!!! I guess that virus I mentioned before is not causing us any trouble. So I guess they were probably right it might just be antiviral. This whole week I had my daughter Lesley with me. I enjoyed her company. But today her and her dad went back home. I thank God for all he has done for us throughout this whole transition. Although some times I can't help not feeling discouraged with all of the families that we know and have lost their children. I still need to continue thanking God for all he has done for us. To my friends just hang in their I know that what you are all going through must not be easy. I will continue praying for you all.

Wednesday, April 7, 2004 2:41 PM CDT

Hi guys. Well not much to say right now. We are having some graft-vrs.-host on the skin like we had when we were in 5200. The doctors raised her steroids and fk506 again a little more. Although I do know that this can happen I can't help not feeling concern....Ashley is on her weird night time schedule again. She is keeping me up till late at night and crying to make matter worse. To a point in which I woke up this morning and gave her the wrong about of blood pressure medicine. I felt really bad that I accidently let this happen. Some days I feel like I won't be able to keep up with all this. Yesterday I lost another little friend of mine. Jacob, me and my family will always remember you. I feel very lucky because I was able to see one last time on Saturday. I cried a couple of times by his bedside I couln't help seeing Luz in so much pain and seeing Jacob with tears coming down... I was able to talk to him and I actually saw him give us signs that he was listening to us. I also have my daughter Lesley with me for a week. This makes me feel good. Well time to go now.

Thursday, April 1, 2004 1:28 PM CST

Right now I feel so worried and scared... Ashley is doing good her platelets seem to be going up by themselves. They are actually 119,000. BUT today I was told that they spotted another virus in her stool. They know that it is not the Adnoe virus that we had before and they no it's not CMV virus. They just don't know. They say that they saw tiny particles but thta at this point they can't identify it. They also said that they can't culture it to see what it is. They are "ASSUMING" that it can be antiviral which is typical to be in the stool. They also said that it's good that she producing her wbc. This is why it is so important for them to have a high wbc (white blood count). I was really discouraged with this news. This is all a waiting game. I don't like the fact that they can't do anything right now. ANYTHING can be risky for these kids. That is why I feel like this. I need words of comfort at this point. I am seeing to many things around me. Keep in mind that there are alot of virus that they don't have the medicine for. NOT that I am saying that this is going to be Ashley's case. BUT these are things that I DO have in the back of my mind. GOD knows that he is ALL I have to hold on to. I just hope he continues helping me get through this. Ashley has responded very good through out these 70 days out, but you just can't help getting discouraged here and there. ALL I can do is continue praying to God. How can we keep these kids away from germs????HOW? First the adnoe now this...Anyway thanks for taking your time to read what I just had to say. Please continue praying for all of us here and the families on 5200 and PICU. May GOD bless you all.

Tuesday, March 30, 2004 2:45 PM CST

My people, I was mistaken when I said that we were on day 66 Monday 29. The actuall day is today Tuesday 30,2004 #68. Soon we will be with the rest of our family. Ashley continues her progress. Thank you God. To all those who view our page thank you for your support. To all of the staff in 5200 thank you for your support while I was there. Please continue praying for all of our children. Especially for Janet,Joe and their son Trevor. I just got the news that Trevor second transplant didn't take either. Some of you may already know that they lost another son not that long ago and that this was Trevor second transplant. Please pray for this family. They are anxious and worried because they don't know at this point what would be the best thing to do. If you want you can look at their web page:caringbridge.org/tx/joinerboys.

Monday, March 29, 2004 12:53 AM CST

Well we are on day 66 post transplant!!! Ashley has continued making progress. It looks like she's even making her own platets. Pretty soon Ashley will have her new hearing aids. Things are looking good down here for us. Thank you God!!!! Please continue praying for my boy Alex Johnson in 5200 and for the rest of them.

Friday, March 26, 2004 2:34 PM CST

Day 62!!!! Ashley is feeling great! We got her ear molds done today. Hopefully she will be having her hearing aides placed sooon. We were told today that her stool came back negative for the adnoe virus. That's good news!!!But we still need to be on contact isolation for another 2-3weeks to wait and see if anything grows in the cultures that were taken. I strongly believe everything is going to be fine. Although sometimes like I mentioned before I do get discouraged with all I see and hear around me. Ashley is Ashley and so far she's done good. Thank you all for your support. Please continue praying for 5200&PICU patients.

A brief message for my family: I LOVE YOU LESLEY AND ARISTIDE, thank you both for your inspiring words and for reminding me that I'm not alone although there is some distance between us. Thank you. God is good and we will once again be a family.

Thursday, March 25, 2004 4:27 PM CST

i have great news for you all...Ashley is producing normal enzyme level for her genectic disorder!!!! YEAHHHHHHHHH!!!!I am very pleased to hear that my baby is responding very good to this transplant so far. We are currently on day 62 post transplant. Thank you God, I owe all of this to you. Ashley is being weaned of alot of her meds. today they are going to start her on FK by mouth and her steroids is also reduced to 3ml. I hope that Ashley continues getting better.God brought us this far I know there is a reason for all of this. Sometimes I sit down and still ask myself is this really happening??? But the reality is it is. Without Gods help and all of you this would of been really difficult to manage. Thank you for your support. Please continue praying for Ashley and for all of the families in 5200 and PICU. I would like to mention a couple of them myself: Charlene and her family who recently lost their only child Josh,Jacob Shotwell in PICU Please pray for him and for no damage to his kidneys and a fast recovery out of that unit. Nicolasroy for donor cells and for no need of another transplant. Master "T"(Terrence) for cells and engraftment and for his mom Sandra they've been here for ever. Trevor Joiner for donor cells. My "neighbor" Alex Johnson we need those cells to grow and get rid of that Adnoe virus. Last but not least my friend Shane for Donor cells and fast recovery. FOR ALL OF THEIR PARENTS: STRENGTH AND PATIENCE. GOD IS IN CONTROL OF THE SITUATION ALL WE HAVE TO DO IS ASK HIM FOR HELP AND WE SHALL RECEIVE. WE CAN'T DO THIS BY OURSELVES REMEMBER THAT.

Tuesday, March 23, 2004 1:57 PM CST

Hi everyone. Ashley is on day 60 post transplant. Ashley is doing good. Yesterday we had an appt. for her hearing. It seems like she is going to definitly going to need her hearing aides. We are going to get her ear molds done sometime this week. We did find out that one of her tubes in here ears isn't working the way it should be so we are going to get that checked by her ent doc. I also told her Doc. that I have been seeing some drainage coming out of her nose so, today they did a viral test. Well that's all for now. Please continue praying for Ashley progress and for the rest of the kids in 5200 and PICU.

Please pray for my other little girl back home "Lesley" for her well being and safety.

Lesley I LOVE YOU AND I MISS YOU VERY MUCH!!!!

Sunday, March 21, 2004 12:48 AM CST

Ashley is doing great so far. I just had my family down here with me. That was nice. It was nice seeing my daughter Lesley, mom and my husband. We had no clinic today. Well time to go now. Please continue praying for all those children in 5200 and PICU and for the Parents also. We need all the strength we can have right now.

Thursday, March 18, 2004 12:25 AM CST

Things are looking good for us. Ashley saw Dr.Prasad who is her primary Dr. he said she looks very good. Her steroids got decreased from 5ml.to4ml her graftvrs.host med. will probably be stopped soon. Ashley appetite is great. She saw her physical therepist today and she saw some improvement. Which I had already noticed. GOD IS JUST SOOOOO GOOD!!!!!We are going to get her an appt. with her ent(hearing) maybe we can get her loner hearing aids if she still needs them. I wouldn't be surprised if GOD already corrected that. I'm seeing GODS doing in her life that I know anything can happen when GOD IS WORKING IN YOUR LIFE!!! I was also told that our 6 months checkup will probably be July 26 for about a week. Once again please keep on praying for these children in 5200 and PICU. We need prayers and miracles.

Monday, March 15, 2004 11:48 AM CST

Hi guys! Things are looking good here. Ashley is feeling good and looking good. I thank god for this. We didn't have to go to clinic today we are on day 52 post transplant. We come this vv far and no complications yet! GOD IS GOOD!!! Please continue praying for our children and for the rest of the kids in 5200 and picu.

Saturday, March 13, 2004 1:53 PM CST

Hi! Well I really don't have much to update you with right now. Ashley is continuing to do good. We only have to go to clinic on Saturday, Tuesday, and Thursday. They already took her off TPN on Thursday. Her steroid level was reduced to 5ml. and no more creams on her skin. She hasn't have any blood transfusions since we came out of 5200 on Feb 23. That is GOOD!!!! Well I hope things continue to going good here. Please pray for the families that are still in 5200.

Tuesday, March 9, 2004 1:32 PM CST

Hi people! Ashley is on day 46 post transplant! Ashley is doing great. We didn't have to go to clinic today for the first time! I did send in my labs with a friend who is also in the RMD house. I feel very greatful to have so many wonderful people around me here in North Carolina. I thought I was going to be all by myself but things changed. God is good. He knew his plan and that's why he allowed me to come down here without family. Thank you GOD. We had a small incident yesterday with Ashley FK506 pump. I hooked her to the pump and I went to pick her up to put her in her crib, the pump almost fell to the floor but I caught it just on time then I sat her in the crib. Everything looked fine but then blood started pumping back into the FK506 and onto her crib. I was very scared!!! Betty called the unit and they asked to have her taken in. Everything was fine they flushed her line and gave her antibiotic that would cover her for 24 hrs. in case of an infection. They gave her the other half of the FK that she didn't get. Thank god the line was ok. and Ashley was ok. well time to go! Thank you all for your messages.

Monday, March 8, 2004 10:46 AM CST

It's been a while since I last wrote. Ashley is currently on day 45 post transplant. She is doing very good. She just had her 1 birthday on saturday 6. We were all very excited about that. I was able to see her get her first birthday and with her transplant already done and so far a successful one. My family was down here this weekend. That made me feel good. My daughter Lesley brought me her "student of the month award" that was nice to hear. Saturday Ashley platelets were low and we thought that Sunday she would need platelet on Sunday It turns out that they were actually higher. That means her bone marrow is probably making them. Isn't that nice?

Sunday, February 29, 2004 11:01 AM CST

Hi! Ashley wbc today was 24.3 I believe. Things are looking good around here. She got platlets yesterday. Her blood pressure was high which unusual. I'm just praying to God that everything continues to go well for my baby and the rest of those children up in 5200. If any of the parents happen to check Ashleys web page this message goes to you: I may not be their in person but, my heart and prayers go to each and everyone of you. Don't loose hope your children will be fine. Believe and trust your God. He will only allow what is best for all. I miss being with you all but we have to continue the journey. To all of the nurses that took care of Ashley and showed her inconditional care I thank you all and wish you all continue what you are doing because I have to tell you, YOU GIRLS WERE GREAT!!!! WE MISS YOU!!! KEEP IN TOUCH WITH US MY NUMBER IS (919)286-9305 ext:144.

Saturday, February 28, 2004 2:44 PM CST

Hello once again. It's been a while since I last wrote to you guys and keeping you all updated on Ashley's progress. I just happened to get a chance to write now. I didn't know that the computer here was already fixed. I have GOOD NEWS!!!! ASHLEY IS CURRRENTLY 96% DONOR CELL!!! Don't get discouraged it should be 100% but Doc. said to be that being that the fish test was done on day 30 after transplant there was a possibilty that it would come back less than 100%. Hopefully that 4% remaining will come down and she would soon be 100% ALL DONOR!!!! They also said that she has a very strong bone marrow and she already is engrafted. Which is in Ashley's benefit. Ashley is doing good. They will repeat the fish test again on March 23 exactly 2 months post transplant. I have to stop writing right now because Ashley is not letting me cont. writing. I will come back later. Thanks for writing to us.

Sunday, February 22, 2004 7:07 PM CST

Hi people!! Ashley will be getting discharged on Monday!!!Her wbc today was 11.3. The doctors say she looks like she's ready to be discharged. I also agree. I feel very excited because things look like they are moving along pretty good. I will be staying in the Ronald Mcdonald House down here. Tomorrow Ashley is going to get the fish test done. Hopefully when I get those results back they are going to tell me that they are donor cells. PLEASE GOD ALLOW THOSE CELLS TO BE DONOR CELLS!!!! Thank you all for checking up on Ashley. I will continue to keep you all of her progress. Remember the last thing you can do is loose hope and your faith in believing everything will go well.

Friday, February 20, 2004 11:54 PM CST

Hola!! Today Ashley's wbc was 7.0 Ashley has had a great day today. We are going to be getting discharged on Monday!! She did get platelets today. Ashley is currently on day 28 post transplant. She is fully engrafted at this point and ready to hit the road. We still have to go to clinic 7 days a week up until day 45. That is because she had an unrelated cord blood transplant. My mom and daughter are still with me here. They are leaving on Sunday. I wish they didn't have to leave. Although I'am not going to be in the hospital I will continue checking up my emails. So continue writing to us. I hope everything continues as it is now. ASHLEY GROW CELLS, GROW!!!

Thursday, February 19, 2004 10:46 AM CST

Hey guys!! Ashley wbc today is 4.2. Grow cells grow!! Ashley was given some lasics today. Her weight was 10.6 today. So we had to get rid of some of that extra fluid. Her blood pressure has been good today.

Wednesday, February 18, 2004 9:36 PM CST

Hi! Ashley wbc today was 3.6 and her anc was 3,310!!! Grow cells grow!! This morning Ashley had a little pump we really don't know what caused it. Her blood pressure dropped and Ashley was looking lifeless. The doctors weren't really sure if it was the platelet transfussion they had given her before that since they split the unit in half and gave the other half to onother patient that probably got some type of bacteria or contamination in it or if it was dehydration from all of the lasics that that they had been giving her. Her hemoglobin was 8.4 meaning that apparently she didn't require blood transfussion. They usually give blood when it's below 8. They also said that her blood level could of also been lower than 8.4 and it could of been a false lab result. They went ahead and gave her a blood transfusion. That gave her a boost but her weight is another issue. Her weight was 9.6 kilo yesterday today it was up to 10.2 We also think she might be retaining fluid. They don't want to give her lasics today because that may raise her blood pressure and they are not giving her blood pressure med. today because of the low blood pressure she's been having today. We have to wait till tomorrow and see. We don't want her to retain to much fluid either. Well once again thanks for visiting Ashley web page. I will update you tomorrow. Keep praying for Ashley.

Tuesday, February 17, 2004 2:14 PM CST

Ashley way to go!!!! WBC is 2.8 today and her ANC is 1,624!!! We are looking to get discharged on Monday or Tuesday most likely Tuesday. Ashley is looking good thank God. I feel pretty confortable right now Ashley is doing good, Lesley is here with me and my mom is helping me out. The only thing that's concerning me right now is that Aristide hasn't been able to work like he had plan. I hope things straighten out for him soon. That's all for now. Aristide you are going to be fine. Don't get discouraged. We love you.

Monday, February 16, 2004 12:21 AM CST

Hi guys! Today Ashley was officially engrafted!!! Her WBC was 1.6 and her ANC was 680. The Doctors are talking about getting her discharged by the end of this week. We still have to stay here in NC till probably May. Ashley is getting off some of her meds. That's great!!! I drew her blood last night for the very first time. That felt o.k. I didn't feel weird. Mom and my daughter and brother are here with me. That's nice. Once again Thank you all for your support. Lesley likes being here with me. She doesn't want to go back home. She has to because she has to go to school. I am going to miss her.

Sunday, February 15, 2004 5:28 PM CST

Hello. I am very excited today. I had my husband, daughter and mother and a family friend come over to see us. Ashley is doing good. Her WBC is 1.2 today and her ANC was 868. If I'm not mistaken. I love having my family here with me and Ashley. We needed some campionship. I will be up dating the pic. soon. Keep on praying for us. We need it. My husband left back home today. I hope to see him soon again. "Aristide thank you for everything you've done for me and the girls. We love you and hope you have a safe trip back home."To my family back home "I love you all and miss you all. I hope to see you soon. Thank you all for all your support. Aurelia, Naty, and Mayra gracias por todo su apoyo que me han brindado a mi y mi familia. Gracias por entender nuestra situacion que de cierta forma no a tocado a todo de una manera otra. Sigan dandonos su apoyo. Estoy muy agradecida con ustedes. Las quiero mucho. Cuidense mucho.

Friday, February 13, 2004 8:47 PM CST

Today Ashley White Blood Count went down alittle more from 0.9 to 0.8 Doctor say that is normal and it can happen. Her ANC also dropped from 612 to 468 so that's why we couldn't consider it engraftment. Now we have to start all over again. Count 3 more days of WBC higher then 5 And ANC higher then 500 for 3 days straight. Over all Ashley is doing good. Some rash issues and fever here and there. Thank you for taking your time in reading on how Ashley is doing. Thank you God for another + day. My family is on there way over here from NY. YEAH!!!!!!!!!!!!!!

Thursday, February 12, 2004 9:43 PM CST

Hey guys. Things are looking good for Ashley. Her WBC was 0.9 it went down just one point but her ANC went up from 610 to 612. ANC are the baby cell in her body. Ashley has just been having some blood pressure issues today but we think that its the new med. that she started yesterday called FK506. Eventually that should get back to normal. It may be that her body needs more time to get used to it. The Doctor said that she may get discharged in about a week and half from today if things cont. to go the way they have been up until today. I am very excited because tomorrow my husband and my mother, daughter will be coming over to visit us. My mother and daughter will be staying for one whole week with me. Yeah!!!! I wish my husband would be able to stay for a longer time but he needs to go back to work. Sometimes I forget about that and then I get upset. But that's how life is you can't always have everything you want at the same time. I guess we will be able to spend more time as a family when all of this is taken care of. Once again Thank you God for another wonderful day.

Wednesday, February 11, 2004 6:47 PM CST

To all of those people that took their time to sit down and actually read my daughter web page. THANK YOU!!! I will be writing back to you all when I get a chance. I feel very fortunate to see how many people are giving us their support even if they are the other side of the world. Ashley and Lesley were two blessings that god send Aristide and myself. I wouldn't change those two days September 17, 1998 and March 6, 2003 for anything in the world. Thank you God for having me in mind to be the mother of these two little angels. Ashley WBC count for today was 1 and her ANC was 610. If by Friday its still above 500 and cells remain above 5 she is completely engraft!!! Things are looking good. They changed one of her meds. from cyclosporine to fk506. She does seem to have a rash again but we are trying to take care of that. We changed her med. and I am putting on the lotions that they gave me. I must tell you this is not an easy transition but God is helping deal with the daily challenges since I'm out here by myself. Sometimes I wonder how am I dealing with it all. But this is my commitment with Ashley that I made since the day I got pregnant. I will go forward with all the challenges that may arise throughout this whole experience. God would not give me a load I wouldn't be able to handle. Lesley I love you, please don't forget that.

Tuesday, February 10, 2004 8:40 PM CST

Hi guys. Ashley is doing good today. Her WBC is still 0.7 but her ANC is upto 497! almost 500. The only new I have to share with you today is that tomorrow Ashley is going to get a new double line placed because the cuff on that one came out. The single one will be removed also. She was given some platelets today just to prepare her for that surgery tomorrow. I took her out to the hallway to give her a ride in her little wagon that Duke lend us. That's it for now.

Tuesday, February 10, 2004 3:29 AM CST

Hello. It is actually 4:30am and I am still awake with Ashley. The nurses have had to change her dressing 4x's so far because her single line is bleeding. We have to wait and see the Doc. are going to determine later today. She does have this bump on the top of that site. We are assuming that it's just some blood that got caught in there. Well i am very excited because On Friday my daughter and my honey, my mom and sister are coming down to see us. I've been looking forward for that day to come. I miss them very much. Lesley and mom are going to actually stay down here with me for a whole week. Lesley has winter recess coming up. So right now I have something to look forward to.

Monday, February 9, 2004 4:57 PM CST

Hi. Today Ashley had WBC of 0.7 and an ANC of 392!!! We are assuming that soon Ashley will be engrafted. If she gets to 500 and above and her WBC stays higher then 5 for 3 days then they consider to be engraftment. The next step would be to find out if they are own cells oe the donor cells. I think they are donor cells since she had a couple of reactions that may indicate that to us. Thei did have to give her a new medicine today because her bilirumin (something that the liver excretes) was a little to high for her. That indicates that the liver is working alittle harder. And we don't want it to get bad. Today when we did her daily dressing on the lines we notice that she has a little bump on her single lumin. Doctors said that they were going to keep an eye on it for infection but that they think it was a bruise that was formed under her skin. This can sometimes happen when they get their lines placed in. I have keep an eye on it myself because was actually the one who noticed it. Ashley, grow cells grow!! God bless you. Lesley I love you and I miss you very much. Hope to see you guys here soon. Lesley I know you're not feeling to good I hope you feel better. Love mom.

Sunday, February 8, 2004 3:37 PM CST

Hi. We have a couple of good things to share with you guys at this point. First of all Ashley's WBC count is 0.4!!! 2.She at a stage where she may no longer be at risk for getting more mucositis. Ashley had no sores in her mouth so far and if she did get mucositis in her trachea,stomach it wasn't so bad. Doctor say that if she had mucositis somewhere it is most likely healing since her WBC is coming back up. Thank you god!! 3. I already have a place to stay in when Ashley gets discharged from the hospital. We have our studio back in the Ronald Mcdonald House. It's a beautiful studio. This is why I strongly believe God is involved in my life. This why I say this. I was happy to know that my oldest daughter was going to have a week off from school. But I knew it would be to expensive to pay for a hotel room for my mom to come and stay. So I happened to have my social worker come by on thursday. I mentioned to her what was going on and she said to me that there were 2 rooms available in the Ronald Mcdonald House and since I was already in the Waiting list I could probably get my suite back. I got very excited to hear her say this to me. She then told me it was available and that I could actually go tomorrow (Friday) and do my paperwork. Now my family has a place to come to and When we get discharged from the Hospital we have a place to stay in. Now my daughter and my mom have a place to stay and they can stay for 1 week with me. God has just been very nice with me. Thank you GOD!!!!! And just the way Ashley transition been through out all of this. God has been involved since day one and because we have believed in him and in his powers and invited him into our lives and prayed to him and asked him to lead the way. Ashley is in his hands. I can't express what it is that I am feeling right now but something great is happening in my life at this point but I don't know what it is. Everything god does has a purpose.

Friday, February 6, 2004 12:30 AM CST

Things are looking for Ashley. Her WBC is 0.3 today so we are on our way with those new cells!!!!!!! Ashley just feels like sleeping more now. Doctors say when cells start coming in their body goes through a whole lot. Her face is alot puffier because of the steriods. Thank you all for nice messages. LESLEY I LOVE YOU SWEETHEART!!! I MISS YOU,IQUI family&friends. I wish I would be able to spend more time with you guys. I feel lonely at times and just wish I could be back home. But Ashley needs to be here and this is the least I can do for baby Ashley. You girls are my life and joy. Don't forget that Lesley.

Wednesday, February 4, 2004 3:44 PM CST

!Hola! Hoy les contare que Ashley esta reaccionando muy bien gracias adios. Hoy recibio platelets. Todavia solamente tenemos 0.1 cellulas blanca. Los doctores dicen que es normal que se queden asi por un tiempo por lo menos 1-2 semanas. Yo sigo con muchas esperanza de que todo no vaz a salir bien.

Hi guys. Ashley is doing good today. No fever. The rash that she had is clearing up since they are giving her that extra dose of steriods an increase of 9ml. to 200ml. That's to help clear it up before it gets worse. She did receive a platelet transfusion since it dropped to 15 and if it gets lower then 20 she then needed platelets. Her white blood cell(wbc) is still at 0.1 for the third day doc. say that normal and nothing to worrying about since you can still give it up to 4 weeks to engraft. Keep on praying for Ashley. Hoping that those cells are actually her donors cells and not her own.

Monday, February 2, 2004 3:36 PM CST

HI! I have great news for you guys. Ashley seems to be starting to engraft. Her white blood cell count was 0.1. It's a small change but those cells are starting to rise again. We are thinking that it could be her donors cell because of a rash she is getting. She had a fever this morning but so far so good. God is listening to our prayers. We are in day +10 after transplant and they say it is a little early but they've seen it happen before. God knows what he is allowing to happen and why. I won't question him. I feel very excited!

Sunday, February 1, 2004 4:09 PM CST

Hi! Ashley is having a good day so far. We are keepig on eye on her because it looks like she might begin to get a rash. This can be a sign of her probably starting to get some cells on the way! We are hoping for the best. Keep on praying for health and that when those cells do come in that they are her donors cells and not her own.

Saturday, January 31, 2004 4:27 PM CST

Hi people. Today Ashley has been doing very good. She is not having anything major going on. She was getting some fevers early this morning but, now they are gone. She did get some platelets last night. I know that God our father is with us because Ashley has been responding very good through out this whole process so far. There is no doubt that God is with her making the whole transition alot easier for her. I hope he continues his blessings. Stick to your faith for I'm doing the same here.

Thursday, January 29, 2004 6:29 PM CST

Thank you all for sending me and my daughter Ashley so many wonderful and touching mesages. i know that me amd my family are not alone because of all of you! Thank you for the time and for all those touching words. I must tell you that when I was reading the messages you all sent my tears started to fall down because I was touched by you all. Keep on praying for a miracle I know GOD is doing his part he's already working in my life and in the life of the ones that I love. Keep writing to us for I will keep you guys posted. I love you all. Today Ashley ended needing another blood transfusion and platelets, potassium. she has been running a fever not to high The Doc. are watching for risk of infection. But I'm still hanging on praying to our GOD for Ashleys health and for the continous health of my other daughter LESLEY. Mami you know I'm away trying to help your sister but we will be back home and the good thing about this is that you are going to have a stronger and more loving family. That's my commitment to you girls. Por favor sigan resando nuestra hija. This message goes to my husband thank you honey for being there for us. You are taking care of your part. I acknowledge that and I want everyone to know that to.

Tuesday, January 27, 2004 4:19 PM CST

Today Ashley been getting fever since yesterday. They have her on two antibiotics just in case she has some type of infection trying to arise. We definitly don't want her to catch one since it can conplicate the whole thing. Remember she has no white blood count. I'm trying to hang on since she needs me most right now. I'm not really getting enough sleep but it's worth it. They are giving her some potassium because it was kind of low. You need that so that your heart can function correctly. Keep on praying for her it really has help. Thank you all for your nice messages and for actually taking your time in writing to us words that can keep us motivated.

Monday, January 26, 2004

This page has been created to update everyone on Ashley's treatment. We are currently at Duke University getting a unrelated cord blood transplant. Today Ashley got her new line placed in. Health wise she is pretty good shape at this moment. She is no longer eating which was expected so they have her on something called TPN. All I can tell you guys is that those prayers are working!!! Ashleys transition here hasn't been as bad as it could be. Por favor continuen resando por la salud de Ashley.

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