History

Sunday, November 12, 2006 1:47 PM CST

Hello everyone! Just thought that I would update. Today which I say everyone knows makes two years since Evline has passed away. It is still hard when this day comes. All most of us can do is think about what has happened to Evline. TO MY ANGEL WE LOVE YOU AND MISS YOU ALOT. WE WISH YOU WAS HERE WITH US. NOT JUST IN OUR HEARTS BUT WHERE WE CAN HOLD YOU AND GIVE YOU HUGS AND KISSES. REMEMBER THIS YOU ARE ALWAYS IN OUR FAMILY AND YOU ARE ALWAYS IN OUR THOUGHTS. WE LOVE YOU SO MUCH AND MISS YOU ALOT. LOVE ALWAYS MOMMY AND DADDY AND TOMMY AND FAMILY. Thank all of you that still comes in and checks up on us. Well I am going to go for now.

Tammy,Jerry,Tommy,and family

Friday, October 13, 2006 10:22 PM CDT

Hello. Sorry I don't get on the computer much. Been busy taking Tommy to the doctors. They referred him to Lexington to a lung specialist. They say it is over serve allergy's but who knows Harlan is weird. Every time will go in it is something new. He is started to look like evline especially the way he smiles. I'll half to get Cheryl to put a picture of him on here when she gets time to. I hope all is doing well and our prayers go out to everyone. To my little angel we love you and miss you and you will always be in our heart and thoughts. If I do not get to update by Halloween I just want to say Happy Halloween to you all and THANK YOU ALL FOR BEING HERE WITH US THROW EVERYTHING THAT WE HAVE BEEN THROW. Sorry I can't spell that good. I'll try to write more later.

Tammy,Jerry,Tommy,Cheryl,and Family

Saturday, September 9, 2006 5:16 PM CDT

Hey Sorry I have not updated in awhile. Been busy with Tommy. He has a visus is what they are saying. I don't think that it is a visus. To my angel girl We love you and miss you. We are always thinking about you. I hope everyone is fine. Lets us know if there are anything that we can do. Either here or at tammy_thomas_18@yahoo.com or if anyone knows Cheryl's e-mail address. Write more later.

Tammy, Jerry, Tommy, Cheryl, and Family.

Wednesday, April 12, 2006 9:28 AM CDT

Hello everyone. Thank you all that comes in and signs Evlines web site. We are thank to see that people still check in on us. Sorry I don't get to update alot. Tommy is doing fine. He still doesn't sleep threw the night. I can't wait till he does. I stay tried. We are always praying for everyone. We all are doing better but we all still miss our little angel Evline. She is always going to be apart of our family. Alot of people things that she is not because she is not here anymore. But she is always here in our hearts and dreams and still part of me. My family is always afraid that I am going to end up in a crazy house because I still talk about Evline alot. I know that I do but it helps me to talk about her. I know that Tommy don't understand to much at this young age but I tell him every night that his big sister Evline loves him. I try to tell him about her. I figured if he don't remember her when he gets older from what I am telling him know then I can just retell him. I want Tommy to know about Evline and what she was like. I hope that one day people will understand why I think that this is an important thing for little children to know about. I know that my life isn't perfect. no ones is. Everyone should have something to regret and if not that is good. I have alot of regrets. Well everyone I guess I'll try to update later. Happy Easter to everyone. I hope that you all will have a wonderful day.

Tammy,Tommy,and Our little angel Evline, etc........

Friday, February 24, 2006 2:12 PM CST

HELLO EVERYONE. JUST THOUGHT I'D LET EVERYONE KNOW THAT TOMMY IS OFF OF THE VENTILATER. HE IS DOING GOOD. OH IF WE HAVE NOT TOLD YOU ALL TOMMY IS JUST A CARRIER OF HURLER SYNDROME. VERY GOOD NEWS FOR ME AND JERRY AND MY FAMILY AND JERRY'S FAMILY. TOMMY HAD BATERIAL PNEMIONA AND STRIP THROAT. PLEASE OVER LOOK MY SPELLING I AM HAVING A DIFFICULT TIME SPELLING. WE ARE SUPPOSE TO GET OUT OF PICU TOMMORROW AND GO TO A DIFFERENT ROOM. EVLINE WE LOVE YOU AND MISS YOU DEARLY. WE KNOW THAT YOU ARE WATCHING OVER ALL OF US. GOD BLESS EVERRYONE AND KEEP US IN YOUR PRAYERS. LOTS OF LOVE BEING SENT TO EACH AND EVERYONE THAT WE KNOW AND DON'T KNOW. WE WILL BE PRAYING FOR YOU ALL. PLEASE FEEL LIKE YOU CAN GET ON HERE AND LETS US KNOW HOW YOU ALL ARE DOING. IT MAKES US HAPPY TO KNOW THAT YOU ALL STILL THINK ABOUT EVLINE AND STILL LOOK IN TIME TO TIME.
I WILL TRY TO UPDATE EVERY COUPLE OF DAYS IF I CAN.

TAMMY, TOMMY, JERRY, CHERYL, AND OUR LITTLE ANGEL EVLINE

Monday, February 20, 2006 7:26 PM CST

HELLO EVERYONE! THANKS FOR STOPPING BY EVLINE'S WEB SITE. IT HAS BEEN A WHILE SINCE THE LAST UPDATE. I THOUGHT I WOULD UPDATE A LITTLE AND TELL YOU ALL ABOUT TOMMY. RIGHT NOW WE ARE IN JOHNSON CITY BECAUSE TOMMY IS HAVING TROUBLE BREATHING WELL ACTUALLY HE STOPS BREATHING. ALL WE KNOW SO FAR IS THAT HE DOESN'T HAVE RSV OR THE FLU. THE DR. MOHON SAID THAT IT MIGHT BE AN IFECTION AROUND THE BRAIN. WE HOPE THAT HE DOESN'T. IT IS SCARY TO SEE HIM HOOKED UP TO A VENTILATER EXPECIALLY AFTER WE HAD SEEN EVLINE ON ONE AND WHAT IT DOES. WE ARE ALL PRAYING FOR EVERYONE THAT WE MEET AND KNOW. PLEASE KEEP TOMMY AND US IN YOUR PRAYERS. HOPEFULLY HE WILL BE OKAY.

I DON'T KNOW IF I CAN HANDLE GOING THROW THE SAME THING AGAIN. I STILL HURT BECAUSE EVLINE CAN NOT BE HERE WITH US. BUT I KNOW SHE IS IN OUR HEARTS AND SHE WILL ALWAYS BE ON OUR MINDS. WELL I HATE TO GO BUT I AM GOING TO GO BACK IN THE ROOM WITH TOMMY.

TAMMY, TOMMY, JERRY, CHERYL, AND OUR LITTLE ANGEL EVLINE

Saturday, January 28, 2006 9:32 PM CST

HELLO EVERYONE.

SORRY WE HAVE NOT UPDATED IN A LONG TIME. WE ALL HAVE BEEN BUSY. WELL EVLINE HAS A BABY BROTHER NOW. HE WAS BORN JAN. 14,2006. HE WAS 5 1/2 WEEKS EARLY AND WEIGHED 6LBS AND 1 OZ. HE WAS 19 1/4 INCHES LONG. HIS NAME IS TOMMY. EVERYBODY IS DOING FINE. WE STILL MISS OUR LITTLE ANGEL AND WE WILL ALWAYS MISS HER AND THINK ABOUT HER NO MATTER WHAT. I KNOW THAT PEOPLE WILL THINK THAT I AM WEIRD BUT I STILL HAVE A BIG HOLE IN MY HEART AND I KNOW THAT IT WILL NEVER BE FILLED AGAIN.

WE ALL STILL HAVE A HARD TIME WITHOUT EVLINE AND WE TRY TO GO ON WITH ARE DAY. I KNOW IT TAKES TIME TO HEAL BUT TO ME IT SEEMS HARDER EVERYDAY. ESPECIALLY WHEN YOU LOOK AT PICTURES AND GO TO HER GRAVE SITE AND WONDER WHAT THEY ARE DOING AND EVERYTHING. I DON'T KNOW ABOUT ANY OTHER PARENT BUT TO ME THAT'S THE WAY IT FEELS. IT'S HARD TO SAY WHAT YOU FEEL. I KNOW THAT IS HAS BEEN A YEAR AND 2 1/2 MONTHS SINCE EVLINE IS BEEN GONE AND I KNOW THAT YOU ALL MIGHT THINK THAT IT SHOULD BE EASIER BUT TO ME I KNOW THAT IT IS NOT EASIER.

I MIGHT NOT SHOW IT AROUND MY FAMILY OR JERRY'S FAMILY BUT I THINK THAT THEY KNOW BECAUSE I STILL TALK ABOUT HER AND I WILL ALWAYS TALK ABOUT HER AND THAT BEAUTIFUL SMILE THAT SHE HAD. EVLINE AND TOMMY ARE MY LIFE. WELL I GUESS I WILL QUIT WHILE I AM AHEAD IF I DON'T THERE WOULD PROBABLY BE A COULPE OF PAGES ON HERE ABOUT THE WAY I FEEL AND ME TALKING ABOUT EVLINE AND TOMMY AND EVERYONE ELSE TOO. WRITE MORE LATER.

BYE

TAMMY, TOMMY, JERRY, OUR LITTLE ANGEL EVLINE, AND CHERYL

Wednesday, August 10, 2005 11:22 AM CDT

Hello everyone. Sorry we haven't updated in a long time. Cheryl has been busy at work with school starting back. Jerry has been busy with work and trying to get his classes and trucks fixed. I hardley get to a computer unless I am at Cheryl's office. But when I start school back then I can get on the computer more. Except for the day's I have to go to the doctor's.

On Evline's birthday we had a party. I figured that it may help all of us. We let balloons go and eat cake and ice cream and took pictures. Jerry and all of us was still upset. Evline is going to have a brother or sister. We are all hoping that the baby is healthy and hopefully wont have the horrible diesease that our little angel had.

We just found out recently found out that little Ashely R. from N.C. passed away on June 28th. Ashely was our hope we will miss her dearly. Prayers are sent to their families and everyone else family. Please let us know how everyone is doing. We will try to update soon.

May God Bless You All And Your Families

Tammy, Jerry, Cheryl, The New Baby, and our little angel Evline

Monday, June 13, 2005

Well its been two months since the last update. I don't want to move Tammy's letter from here so I'll just add to it. Thanks everyone who signs the guest book even though it hasn't been updated. I check it almost every day and its a blessing to know that others still think about us. Jerry is still working. He may be moving into a new position in the engineers department which will be good. Tammy has helped this week with the Bible School that my other two grand daughters have gone to. They gave her an award Saturday for helping which made her day.

We're supposed to have some company this weekend. Some friends of ours that we met in NC are supposed to come stay a few days with us. Their child had a transplant a few days after Evline had hers. He had Krabbes disease. Thus far he is doing good. He is NC this week for follow-up tests. We are hoping and praying everything goes well for Joshua this week. I'm excited and looking forward to seeing them again. They were a big help to us in NC.

Everyong have a good week and thanks again for the kind words and prayers. Sometimes they are a crutch that helps us stand when we are so sad from missing Evline. We all miss her so much. She had big impact on people in the short length of time she was on this earth. It's been difficult learning to live without her physical presence. I think about her all the time. Once I dreamt of her. It's the only dream I can remember having of her. She was walking in the dream. Before she passed away she couldn't hardly bear to move her legs because of the steroids she was on. I couldn't hold her bottom up by her legs to change her diaper. I had to roll her from side to side and even then she cried. And the terrible thing was she had a diarhea (SP?). She would go thru about 20 diapers or more per day (and that's not an exaggeration). I know things are better now. I wouldn't want her to come back to live through what she was going through but I miss her so very much as does everyone else. She was a ray of Sunshine on a gloomy day. She would smile even when you knew she felt so bad. If I could be more like her, I would be a better person. Everyone take care and GOD bless.

Thursday, April 7, 2005 9:31 AM CDT
I'm sorry everyone that I haven't updated. I know it can be aggravating to visit and read the same stuff time after time. Tammy has written a letter for Evline and she asked me to post it to her site. The letter is dated March 10, 2005.

Baby Girl,

It seems like yesterday when we had to make the hardest decision of our lives. Letting you go was letting a piece of our family and a piece of our heart leave forever. Someone we will never get to replace in our lives.

Mommy remembers your beautiful smile and how you made everyone smile even when they was down. There are a lot of things that I regret and that I wish that I could have done differently but I didnt' get that chance to try to change what now I know that shouldn't even happen.

I hated that when you was here that I didn't get to spend a lot more time with you and give you more hugs and kisses that I felt that you needed. Mommy is sorry for listening to the doctor about leaving to get a flu shot. I shouldn't never have left.

Mommy regrets leaving you. Yo know that me and daddy loves you so much and misses you so much. Evline mommy and daddy and the rest of the family wishes you was still here.

There is times I wish that I could go back in time and try all again. I would tried to do more then what I did. I tried so hard to be a good mommy and it seems that I failed because I lost you. I want you to know you are my world, my heart, and my soul. You always made mommy happy even when mommy was down.

We love you and miss you. Write later sweety.

Love Always
Your Mommy

Tuesday, January 11, 2005 9:58 AM CST

Hello everyone,

I've been meaning to update this web page but it seems there's always something else that needs to be done. I guess it's because when I update, I usually do it with tears in my eyes. We are learning how to live our lives on a daily basis without the physical presence of our little Evline. My husband and I were talking on Christmas Eve and we both agreed that it feels like there is a huge hole in our family. Evline touched so many lives in a positive manner and if I can just keep some of those lessons alive in my memory, I will be a better person for it. It seemed that no matter how bad things were for her she could always smile. Even the doctors and nurses commented on this. On 5200, sometimes the nurses would stick their head in the door just to get a smile from Evline. If I could just do that can you imagine how much more pleasant it would be to be around me. I try to remember this when I'm having a bad day.

Christmas for us was sad but good. We were blessed in that all our children were home for Christmas this year. Sometimes my oldest son spends Christmas in northern Ohio with his wife's family-which is understandable-but this year I was glad he, his wife, and their two children were home. My family, my brother's family, and my sister's families usually have Christmas dinner at my mother's house on Christmas Eve. This year my house was elected as the place for Christmas dinner. All went well. We all survived and it felt good to be together. I did miss my youngest brother and his family. He doesn't attend our family functions anymore and every time I see mom she mentions how much she misses having him there. Christmas day I watched my two grand daughters open their Christmas presents, I took flowers down and put them on Evline's grave, then went to bed. We give our children, their girlfriends and my daughter-in-law money for Christmas then on Christmas day I have a few things for them to open. Since they were small I have always had stockings. This year I thought I had told everyone that I couldn't do stockings because I couldn't bear to leave Evline out and I didn't want to hang one up and leave it empty. I didn't think until after Christmas that I could have gotten things to put on her grave and put them in her stocking. Anyway, on Christmas they were asking about their stocking. My youngest son will be 18 this month, so I figured they were probably getting too old for stockings and I assumed it would be okay. That is what I get for assuming anything. I woke up that evening to my husband cooking dinner--which was delicious. We ate, I cleaned up then went back to bed.

Jerry has started a new job. He night watches at a local mining company. He works about 50-60 hours per week. He seems to enjoy the job and especially likes the paydays. I worry that he is working too much. I guess by now you can tell I am a worry wort (SP?). Some days he works 15-16 hours for 3 or 4 days straight which leaves 8-9 hours for him to drive home, fix himself something to eat, sleep, and drive back to work. I'm afraid he will fall asleep at the wheel. He was very late coming home one morning and I was fit to be tied. I've had one son to almost get killed in a car accident on that road and I was afraid something had happened to Jerry. As I started up the road to find him I passed him returning home. He had been at my sisters. He stayed mad at me most of the day. I know he is 19 but I don't care if he were 91, I will always worry about my children.

I have a new grand son. He was born on Dec. 21. He weighed 9 pounds 11 ounces. When they put him in the nursery with the other babies, he looked as if he were so much older than them. He is such a sweet baby. He's very alert and smiles--when he's awake. He is the son of the girl who wrote the poem for Evline. I talked to the pediatrician about the baby being a first cousin to Evline and the possibility that he could have a MPS disorder. The chances are slim that he would because both parents would have to be carriers of the defective gene but we are keeping an eye on him just in case.

Well I guess this is enough for now. We miss all our friends in Durham and I would love to have spent the holidays there with sweet Evline but that wasn't in GOD's plan. HE has given Evline the most complete healing possible and I know she has no more pain, sickness, or disease. I know she laughs easily and loves entertaining the angels. We still appreciate everyone's kind words and prayers. You have been such a comfort to us. Keep all the little children and their families whose lives are touched by these horrible diseases in your prayers.

Cheryl, Jerry, Tammy, and our little miss Evline.

Wednesday, December 15, 2004 2:56 PM CST

Hello everyone,

Sorry it has been so long since the last update. Jerry and Tammy seem to be doing okay. I know things have to be hard. It is hard for me and I�m just the grandmother. They have been thru so much. To be parents by the time you are 18 is hard enough. But, to have a child pass away before you�re 20 � I can�t even imagine. Tammy seems more able to talk about it than Jerry which doesn�t mean its any easier for Tammy. We all deal with grief in our own way. Tammy asked me to help her with the Thank you notes and Jerry made us leave the room to do the notes. They have gone thru a lot of her stuff. I know that couldn�t have been easy for them. I worry about them. Its not good to keep things bottled up. I just wish I knew what to say or do. I know that time is the only antidote and it doesn�t cure completely. It just makes the pain more easier to bear.

I am back to work. I think that was one of the hardest things for me to do. The first day I came back I cried most of the way to work. Me being able to go back to work was supposed to be at the end of her stay in NC and she was supposed to be one her way to becoming well. It signified the end of our stay in NC but not in the way I would have wanted it to. Another thing that was hard is I work with children from 6 weeks to 3 years of age. I still feel like it is all a dream. I keep wanting to wake up. I miss Evline so much. If I pay attention to the time it bothers me even more. Seems like almost every hour we had something to do�from medicine time to watching occasional TV programs together. Preparing to or administering her medicine seemed to take up most of the time.

My husband and I went to North Carolina this weekend to visit some friends at the Ronald McDonald House. It felt good to see Becky and her family again. The closer I got to NC the more vivid the memories of Evline were. We had a new house built while I was in NC and sometimes nothing seems real. Evline was never in the new house. My husband was trying to have it built while we were gone so that she would have a nice clean/safe place to come home to.

I�m going to go for now. I�ve been visiting some of the web pages when I can. I don�t have my computer at home even put together yet so I do what I can at work. Once again I want to say that I truly appreciate every thing that everyone has done for us. Your kind words and prayers are what got us thru everything. Especially remember Jerry and Tammy when you pray. I can�t imagine how they feel.

May GOD Bless and keep everyone.

Cheryl, Jerry, Tammy, and our little angel Evline

Friday, December 17, 2004

I am changing the heading to Evline's web page. I am placing the poem here that was written by Arlena. I wanted to change the heading and wanted Arlena's poem to always be a part of Evline's site so I am placing it here so it will be in her journal history. I am adding a poem written by my youngest son's fiance for Evline. Brandon, my youngest son, and Carlena are expecting a child any day. Pray that it is okay. Thanks for everything everyone has done and the kind words said. They have been our lifeline on many occasions.

*A GRANDMOTHER'S LOVE*

A grandmother's love is a wonderful thing,
Especially when they sing.
They treat you like you were theirs,
They even have those little special needs and cares.
When they hold a baby that is so sweet,
They hold them tight and sing them to sleep.
When a grandmother holds her grand baby for the very first time,
Then they can say they've held everything.
For a baby so sweet,
Is an angel from GOD.
It's sent with love and needs special care,
When they cry you even share a tear.
They show you the real meaning to life you never seen before,
This is something that can't be ignored.
For when you think you can't go on look at the love of a baby,
And you'll feel ok with no exceptions of a maybe.

Written by: Arlena Blevins
3-25-04
A special dedication to Cheryl and to her granddaughter Evline

Wednesday, November 24, 2004 9:36 AM CST

Hello everyone,

I'm sorry I haven't updated in so long. I appreciate everyone's patience and understanding. I've not yet read the guestbook. I tried yesterday and read a few entries but that is as far as I was able to get. We miss our little star so much. I know she is happy. I know her legs don't hurt any more and she is able to move them now. I know she smiles easily at her new friends and she feels no more pain or sorrow. These thoughts and everyone's prayers are the only comfort that helps get Jerry, Tammy, and I (along with her papaw Jeff, her other grandparents, and all other whose hearts were touched by her presence on earth) through this time of sorrow.

Jerry and Tammy put up a brave front. I'll see Jerry's eyes water and he leaves the room and I know he is grieving. Tammy has been spending a lot of time with her mother and family during the day and I know they are a comfort to her. They've not been able to go through Evline's things we had in North Carolina. They've gone through a few things, I think mostly looking for their clothes. Without thinking, when they packed, they put their stuff in boxes and bags with Evline's. She is my granddaughter and I miss her terribly. I can't imagine how it is for Jerry and Tammy. It bothers them because they weren't with her before she had her pulmunary bleed in her lungs. Jerry had pneumonia, for the first time in his life as far as I can remember, and Dr. K wanted him to stay in KY for Evline's safety. The doctors here in KY were treating him with Amoxicillian and he wasn't getting any better. When Evline became sick, I e-mailed Dr. K and she called in a prescription for a Z-pac for Jerry. That did the trick but he nor Tammy got to see Evline awake before JESUS took her home. That hasn't been easy for them.

Jerry and Tammy picked out a beautiful outfit for Evline to wear and they chose a hat just like the one the respiratory therapist bought for her before her release from 5200. The color of the hat was a little different and it was a different brand otherwise it was the same. She looked just like a little doll that you see in catalogs that you can order.

We will still keep this website if we are able and I will check in on our friends when I can. Please know that we appreciate the support we have received through everyone's words of encouragement and prayers.

We love you all.

Cheryl, Jerry, Tammy, and our little angel Evline

Wednesday, November 24, 2004 9:36 AM CST

Friday, November 12, 2004 8:14 PM CST

Hello again everyone. It is with a heavy heart that I write this update. I won't go into too much details, but for all those out there praying for Evline, GOD has decided to take her home to be with HIM. We lost our dear sweet little miss Evline at about 5:05 p.m. this evening. It has been a struggle throughout the night and all through the day. I haven't slept since 8:00 a.m. yesterday morning. She died in her daddy's arms with a lot of her family members mourning her journey. Funeral arrangements haven't been made as of now. Will try to update later when I have the arrangements. Remember us all in your prayers. Be sure to mention the little children who suffer needlessly from these horrible diseases. Our lives have been greatly enriched by having her as a part of them and she will be greatly missed.

Love to all.

Wednesday, November 10, 2004 2:27 PM CST

Hello everyone again. Thanks ever so much for all your support and prayers. That is what has helped us through this. Evline is still on the vent. Seems like they have to increase or add a new med daily to keep her sedated. They began the methadone (SP?) and valium Monday. So, from what I gather they plan to begin steps that will gett her off the ventilator. They tried yesterday to let her breath on her on but she could only take 12-13 breathes per minute and her blood gases were terrible so the vent is doing her breathing for her again. She is still on low settings although she is now on 40% oxygen and was on 35% Sunday. She is receiving platelets pretty much daily. Once she needed them twice in 24 hours. Her threshhold was at 150,000. That has been lowered to 100,000. When I called earlier she was at 112,000, so she'll probably need platelets today also. She is on a Nicardipine drip for her blood pressure. They have had to add Enalapryl (SP?) to that to keep her blood pressure under control. Her blood pressure has been a lot better since she is on the vent than it was on the oscillator.

Right now I am in KY. My car needed some work and I hadn't seen my other two children and grand children in two and half months. I came to KY Friday, went back to NC Saturday, came back to KY Sunday and hoped to be back in NC by Tues. However, they had to order the part for my car and couldn't fix it until today. It has been good being home but I worry so much about the baby. I really miss her. I call throughout the day and the nurses are kind enough to keep me updated. Jerry and Tammy also keep me updated with what they find out. They are in NC now. I plan to go back to NC in a few hours. My husband doesn't want me on the road after dark because I'll be by myself. If I don't leave tonight, I'll be on the road back to NC by tomorrow. Once the baby is out of ICU I probably won't be back until we can come home.

Keep us in your prayers. That is what has carried us thus far. Remember all the little children that are enduring these terrible sicknesses. Our love to you all.

Cheryl, Jerry, Tammy, and dear sweet little miss Evline

Thursday, November 4, 2004 10:06 AM CST

Sorry I haven't updated in so long. Evline is doing better that the doctors expected. They put Evline on an oscillator Saturday when she had her bleeding in her lungs. The pressure from the oscillator was used to stop the bleeding. They thought in the beginning that the she would be on the oscillator for at least 10 days or more. Yesterday they told me that they are going to wean her from the oscillator to the ventillator. They hope to have her on the vent today. Her blood gases have been good and they haven't gotten fresh blood from her lungs. The doc said that the worst that probably could happen is they would have to put her back on the oscillator. They are having a hard time keeping her blood pressure under control. Her blood pressure was going up before it was time for her medicines so they have her on a drip. They are also having a hard time keeping her sedated. They've added a new medicine which has a side effect of lowering the blood pressure which in her case is a good thing. She also has a lot of fluid on her and they are trying to get that off her. She is on two different dieuretics (SP?). One she has as a constant drip. They think her blood pressure will improve if they can get the fluid off. The IV's they were able to get in her foot have stopped working so they had to put one in her head. We do not like that at all but it was either that or she didn't get her pain meds. It's hard to see her like that. I can't talk to her much or touch her much because she tries to respond to my voice and touch which means she is waking up and we don't want that right now. We don't want her to feel any pain so I mostly just sit in the room with her. The docs say the bleed wasn't the kind they thought it was. They say she is doing really well. The respiratory people have sent off several cultures to see if it was viral, bacterial, or fungal related. The surgery people just say they don't know. Dr. K believes it was from the transplant. In the beginning the docs said they didn't think it was from the transplant because she is so far out. Dr. K said this usually happens at 40-60 days out if its bone marrow but she is sure it is due to the transplant. Evline is now 97 days post transplant. All I know is if it was related to anything other than the surgery, if we were at the Ronald McDonald House, I could not have gotten her to the hospital in time. It happened so fast. Dr. Prasad said that he was worried about her kidney functions. Her body evidently was without oxygen for a while and this often effects the kidneys but hers are fine. Her eyes haven't been reacting to light but she is heavily sedated. They said that since she tries to get the tubes out and moves her body when she starts to wake up that lets them know she is okay neurologically. I hope and pray that she is.

Before Evline became sick we were able to meet Angela Rodriquez. Since Evline has been in PICU I have also met Ann Himes. I feel so fortunate to have been able to meet not one but two families who have gone through much of what we are going through. It meant so much to us that they sought us out. Ashley and Evline are so similar. Ashley is a wonderful little girl. I only wish we lived nearer to each other. I know Evline and Ashley would be such good friends. And little Andrew. He looks so cute walking around. He is something else. Both have stolen my heart. I just wanted to be able to hold them and hug them but I wouldn't touch them because Evline has the adenovirus. They probably wouldn't have let me anyway. I can see it now. I would've been crying and squeezing and they would have been screaming and pushing away from me.

Remember Evline in your prayers. GOD has blessed us so much and I hate to ask but Evline still has such a long way to go and I know she can't do it without HIS help.

May GOD Bless and touch all the little children, especially those that are sick.

Cheryl, Jerry, Tammy, and most importantly--little miss Evline

Monday, November 1, 2004 11:58 PM CST

I am so sorry that I haven't updated in awhile. I have been here alone with Evline for almost a month and it is hard to get to the computer sometimes. I tried to bring her up here one day and she got fussy so I gave up. Anyway here is a quick update.

She has had a diarhea (SP?) for several weeks now. She is also having some problems digesting her food. Tuesday Dr. K ordered an ultrasound of her gall bladder. They found that it was swollen with 'sludge' in it. She has also been experiencing pain and vomiting. The surgeon said that no one knows where her symptoms are from and he wouldn't guarantee that taking her gall bladder out would solve anything but there is a lot of 'sludge' in her gall bladder. Dr. K felt that it would help her a lot if it was removed. So they did surgery Thurs. She did fairly well until Sat. She started having trouble breathing. As the day wore on it grew worse. She had a breathing treatment at 12:00. They called respiratory up for another treatment at 3:00. She was pretty swollen so they decided to try to get the fluid off her. Respiratory decided to wait to see if this helped with breathing. I noticed however that he kept hanging around. If they called him off the floor he always came back a few minutes later. She was on oxygen and it was on 4 litres just to get her oxygen saturations normal. He came in at 6:15 to do her breathing treatment. I told him that I was going to go down stairs and get me a sandwich and I would be right back. I went straight downstairs and came back as soon as I could pay for my food. When I got back the therapist asked if she had coughed up blood before. I told him no! She had coughed up some blood and we didn't know where it was coming from. To make a long story short, she started bleeding in her lungs. They worked with her for two hours trying to get her stablized. She started bleeding from her lungs and almost died. Her body went without oxygen for a while. Dr. K thinks that there was no neurologicial damage but I know the nurses are having a problem getting her to respond to light in her pupils. They think its all the sedation she is on. The nurse tonight told me that her pupils are equal and thats a good sign but she is still not responding well to light. Also, her kidneys didn't shut down and they usually do when they are without oxygen for awhile so that's another good sign. Dr. K says she will be okay. She is certain the bleeding in her lungs is a complication of the Blood Cord Transplant. The lucky thing for us is that she was already in the hospital from her surgery. The Ronald McDonald House is only a mile from the hospital but if it had happened here, I wouldn't have made it to the hospital in enough time. I don't know what the cause was. The infectious control team are trying to find out if it was bacterial, fungal, or viral. The respiratory and ICU doc looked into her lungs and they don't think there was a tear but nothing is known for sure right now. She is stable. The other bone marrow doctor told me last night that she is not out of the woods yet. Dr. K told me today that she will be ok. I know she is doing as well as can be expected. They are having a hard time keeping her sedated. She keeps wanting to move around. She has IV's in both feet and one in her artery in her right arm that checks her blood pressure and heart rate with every heart beat. These are besides the three Central lines in her chest. She has three Central Lines but only two holes. She has ten pumps in her room and most of them are running almost constantly. They have pain medicine she is on constantly and then some they give her as a booster when she starts trying to move around which is almost hourly. She is hard to keep sedated. If you pray, say a little prayer for her.

Jerry has had pneumonia and has been in KY for a few weeks. He and Tammy are supposed to be back in a couple days. My husband Jeff, Jerry and Tammy raced down here Sat. and went home today.

I'm going to go for now. I'm going to try to get some sleep. I will try to update more often. I'm sorry the updates have been few and far between. Thanks for everyone's concern and remember little Evline in your prayers.

Cheryl, Jerry, Tammy, and most importantl--Miss Evline

Wednesday, October 13, 2004 1:57 PM CDT

Hi everyone,

I think today is day +75. I'm just going to do a quick update while Evline sleeps. She doesn't nap long. Jerry and Tammy are in Ky. Last week they went back for some appointments and got the flu shot while they were there. Tammy isn't feeling well so she stayed in Ky. Jerry came and saw the baby this past weekend. Evline is still having a problem with diarhea (SP?). Her diapers are usually between 15 and 20 per day--including nights. She can go as much at night as during the day. Every test has come back negative. They have her on antibiotic by IV in case its bacterial, IVIG by mouth in case its viral, but they think its GvH. They increased her steriods, Tuesday, Oct. 5 and are now giving her a medicine on Tuesdays by IV to combat GvH. Her steriods were 4.5 mg twice daily and Dr. K raised them to 9 mg twice daily. Dr. K decreased her steriods yesterday to 7 mg twice daily. They think the increased steriods are affecting her muscles. Now she won't stand on her legs and crys when I put the diaper on her. I don't pull her bottom up by her legs anymore, I roll her from side to side to put her diaper on. Dr. K also asked me to start giving her 2.5 ml Ammodium AD at night. She is also getting a medicine with her food that is supposed to help her digest it better. We'll see in a couple days if this works. I sure hope so. This diarhea is affecting her electrolytes. Last week she had to have something almost every day, either fluids, magnesium, potassium, or sodium bicarb. As of Thurs. she is back on TPN. She was off TPN before she was released from the hospital.

Also, little Joshua--he is off the oscolator. They weaned him from the vent but had to put him back on it because his heart is so enlarged it is putting pressure on the tubes going to his lungs. The docs are trying to wean him from the vent again. If they can't, there is talk of sending him home with a trachea and vent. The docs are giving him a new medicine and they have told his parents that if this doesn't work, thats all they can do. Thus far the medicine is working good. His blood pressure has been the best its been in along while.

Remember all the children in your prayers. I thank everyone for their concern, encouraging words, and most of all for their prayers. The good LORD above and you are what has gotten us through this thus far. Don't forget about us in your prayers.

Cheryl, Jerry, Tammy, and Evline

Sunday, September 26, 2004 1:09 PM CDT

Day +58

Hello everyone,

I would like everyone to continue praying for little Joshua. The emergency surgery that the doctors were going to perform was not needed. Joshua was having difficulty with his blood pressure. He was sent to the PICU to try to stablize him for surgery. The doctors did another echo and the doctor said there wasn't as much fluid as there was earlier. So, Becky came back to the Ronald McDonald House somewhat relieved to care for her daughter while Nick stayed at the hospital. However, Joshua is still facing many difficulties. They called and said his lungs were filling with fluid and he will have to go on the vent. His lungs are very sick too and they aren't sure what is the cause. According to the last update, his body may be taking care of the fluid around the heart, but his lungs are still in trouble. If I understood Becky correctly, his lungs are thicker than they should be and he had to be put on a special type of ventilator. They had hoped to wean him down and possibly completely off the vent by tomorrow. But, each time they try, his oxygen level drops and they have to raise it again. Please continue to pray for little Joshua. He is 10 weeks old and weighs less than 10 pounds.

Evline is doing better since they have taken her off the magnesium and sodium chloride. The magnesium acts as a laxative and the sodium chloride upsets her stomach. She has had problems with her stools for a while now and she has been gagging when we would try to feed her. We had to encourage her to eat and sometimes she vomited some with her meds or after eating. Friday, around 5:00 p.m. she felt warm and when I took her temperature under her arm it was 99.8. She was vomiting and she had diarhea (SP?). She hadn't taken a nap that day with the exception of one that lasted about 10 minutes and a couple times she dosed. She had been irritable most of the day and didn't want to play. She would wine for her bottle but when she drank just a little bit, she vomitted. We called the doctor and were told to try pedialyte and monitor her. She began vomiting again and this time she vomitted a great deal. I had vomit on me from my neck down my right leg and poop down my left leg. I believe what milk she had drank had soured on her stomache from the fever. We hadn't been able to get her to eat much. All she had eaten was 1/2 jar baby food that morning and a small amount late that evening. I sent Jerry and Tammy for some Pedialyte and while they were gone, I borrowed some sterile water from Becky. I gave this to her just an ounce at a time. She wasn't too pleased with this. She acted so thirsty. But, I was afraid if she drank too much too fast, she would get sick again. As of midnight Friday her temperature was normal and it hasn't gone up since. We gave her Pedialyte the rest of the night and Jerry and Tammy checked her temperature until around 3:00 a.m. Yesterday she was more her normal self. She ate two jars of baby food and some of the juice from the baked beans I had fixed. We haven't given her milk back yet. We have been mixing her Pedia sure with pedialyte to see if that will keep her stomache from getting upset. She is doing much better. She hasn't run a fever. She takes her meds easier. She doesn't gag as much with her feeds and her bottom is actually looking better. We will probably try her milk today and see how she does.

Her labs today show that her hgb is 8.7 and her white cell count is 5.7. These are the lowest these have been in several weeks. Her sodium was low and her magnesium was just above normal. If anyone has any suggestions or if your child has had these symptoms, please let us know. Perhaps you might have an idea or you can let us know what the future may hold. I don't know why she has trouble with her potassium, magnesium, and sodium levels. I am concerned this is a sign of something going wrong in her little body.

Remember Joshua and Evline in your prayers. GOD Bless everyone.

Cheryl, Jerry, Tammy, and Evline

Thursday, September 23, 2004 1:41 PM CDT

Day +55

Hello Everyone

First I wanted to ask everyone to PLEASE remember little Joshua Barrousa (SP?) in your prayers. He has Krabbes. He was doing extrememly well until a couple days ago. Apparently he has a valve in his heart that isn't working properly. They put a drain tube in Tuesday and drained 40 ml of fluid from around his heart. He is a small infant so this was quite a bit of fluid for him. They left the catheter in to drain more fluid. Today they found out that the catheter has come out. They've moved him from the bone marrow unit to PICU to stablize him so they can put the catheter back in. He is struggling to breath. His face and body are swollen. His mouth has what looks to blisters on it. His blood pressure is high and they are fighting to controll it. He is so small and fighting so hard. PLEASE say a prayer for little Joshua.

As far as Evline is concerned. We've had our little bumps compared to Joshua. We are now having to convince her to eat and her bottom is very raw and painful for her. She cries if we even try to look in her diaper because she's afraid we will change it. When I change it I take a wet paper towel and dab her bottom with it and even this is painful for her. They really don't think it is GvH but that is a possibility. She tested negative this time for the adneovirus. So hopefully soon she will be taken out of isolation. She has been taking magnesium by mouth and that may be influencing her poop so today they took her off the pill. She takes sodium chloride now which is difficult to get down her. We put it in her food but now we have to convince her to eat so its not easy. They told us as long as we get the dosage down her, it didn't matter if it took hours. We can put a little in her bottle, a little in her food, and whatever else works. The concern with the magnesium and sodium is if the levels get too low, she can have seizures. Her oxygen at night has been excellent. She hasn't had to have blood or platelets since her release and she's making cells on her own without the growth factor. Her hgb today was 9.3 and white cells were 8.8. Her platelets were good also. She isn't losing weight fast. She is loosing at a slow rate but they are decreasing her steriod. If we can keep her eating and get her bottom well, she will be okay.

I will go for now. Sorry so long since the last update. Its not always easy to get to the computers here. Someone is usually on them. I came up to the computer room about 11:00 one night and they were still on the computer. Anyway, remember to PLEASE say a prayer for Josua.

Cheryl, Jerry, Tammy, and Evline

Thursday, September 16, 2004 2:02 PM CDT

Hi everyone,

Just a little update on Evline. I won't say quick because often my updates are anything but quick. Evline is still playing and she brings a smile to everyone that she meets. When a new nurse or doctor sees her they usually comment that they were told to expect a good visit with her because she is a very happy baby. I know she has kept my spirits lifted.

She still has the symptoms from the adneovirus; however, her nose doesn't run as much. Her cough sounds a little worse. The docs think the mucos is draining down the back of her neck and perhaps that is why her cough sounds more 'croupier.' She hasn't any fevers, thank GOD.

Evline's potassium levels have been high for several weeks and now her magnesium and sodium levels are consistently low. Therefore, she has been placed on two new medicines. She now has to take magnesium and sodium chloride twice daily. Due to the high potassium levels, we try not to feed her foods high in potassium. Unfortunately, most of the foods high in magnesium are also the ones high in potassium. So when we avoid those high in potassium, she doesn't get the magnesium she needs. Her sodium also has been low for several days thus the new addition of sodium chloride, 5 ml twice daily (YUCK!!!). The sodium chloride tastes just like salt water.

On the positive side, the docs are slowly weaning her from her steriod that she takes by IV. However, on one of the visits to the clinic she was prescribed another steriod. Her dosage was to be 10 ml (two teaspoonsful) twice daily. I was concerned with the amount of that dosage so I e-mailed Dr. Kurtzberg. She called the doc who gave this prescription to Evline and they called to tell us not to give her that medicine. Her system doesn't seem to be processing potassium, sodium, and magnesium well so they thought this new steriod might help the adrenal glands do their job. Evidently, Dr. K wanted to try other avenues rather than put her on another steriod.

She had a diarhea yesterday but her poop is back to 'normal' now. I thought there was some blood in it this morning but I'm not sure. The docs saw one of her diapers at clinic today and saw nothing suspicious. So, for now we will just keep an eye on it. Lately she is a little more cranky than usuall but she seems okay. She had to have magnesium given to her by IV a few days ago. Since then she has been naucious. Yesterday and today she has been able to eat better. She doesn't gag as much when she tries to eat. Even though she gags, we still encourage her to eat to keep up her strength.

Her oxygen levels at night have been good, thank GOD!!! and she hasn't needed the oxygen in several days. She wakes up almost every morning with a smile on her face eager to play. She gives us the courage to face whatever lies ahead. I worry a lot about her but I know that she has really been blessed to have done as well as she has. Sometimes I feel guilty but I am so thankful. My heart really goes out to those who have faced more challenges than us. Caterina, another Hurler child, is enduring a large bump on her road to better health. Her link is at the bottom of the page. Please remember her and her family in your prayers along with all the other children on 5th floor and all over the world that have to live through the terrible ordeals that accompany their disorders. Most of these children do this with a smile which is more than I can say for myself and they are an inspiration to me. They are my heros.

Take care, stay well, and GOD Bless!!!

Love

Cheryl, Jerry, Tammy, and Evline

Sunday, September 12, 2004 10:59 PM CDT

Hey all. Evline is during good. She still has a runny nose not as bad I think at least and her cough sounds bad. Yesterday she was nausea and really didn't feel good all she wanted to do is sleep. Her oxygen levels are good. They dropped three times last night but went staight back up so she didn't half to use oxygen. Today she feels a little better and at least she was playing some and eating a little better. Well I am going to go back to the room with Evline and Cheryl. I'll write again soon.

Tammy, Jerry, Cheryl, and Little Evline

Thursday, September 9, 2004 2:53 PM CDT

Day + 41

Evline still has a runny nose and a cough. Otherwise she is doing very well. They keep adjusting her medicine and they've added another one, a steroid by mouth--hydrocortisone. Tammy and I were a little concerned about the dosage--10ml twice daily. But according to the docs that is okay. Evidently they think her adrenal glands aren't working well and this is to help process her potassium and sodium. Occasionally her potassium has been high and her sodium is low. She still plays a lot. The nurses were calling her Sunshine before we left the hospital.

We would like to thank everyone for their prayers and their encouraging words. We know that it is through GOD's help that Evline has progressed as well as she has. And without the encouraging words, it would have been so much more difficult. There were times that I know I would have freaked out if someone wasn't there to say, its okay, this is not so abnormal. Or they would say, this happened to me also and we are okay. There are also the few that it doesn't work out okay and my heart really goes out to those families.

Well, I've got to get to the room. May GOD and bless and keep everyone. Also, when you pray, I have an Uncle on my fathers side that has been recently diagnosed with cancer. He is currently taking radiation treatments. He's too old and weak for surgery or chemo. Please remember him in your prayers.

Cheryl, Jerry, Tammy, and Evline

Saturday, September 4, 2004 7:21 PM CDT

Hey you all! Just trying to add a new entry before evline wakes up. She is know at 19. something. She is doing really good. A little cough but she had it when she left the hosptial. She is playing and sleeping good. She eats good too. We are finally settled down at the Ronald Mcdonald House. Her Papaw Jeff come down today. Cheryl is really happy to get to see him.

The mornings are hard cause we don't get to sleep that much. Jerry stays up till 3:00 a.m. just to give her breathing medicine to her. Still yet she don't go to sleep till about 1:00 a.m. and then she still get up threw the night. We all are taking turns in give evline her medicine.

Sometimes it is harder then other just because you have to be very carefully and she throws a fit because she doesn't like nobody messing with the lines. She still is throwing a fit with the mouth medicine. It doesn't taste good from what I hear.

We want to say to Bethany our favorite nurse on 5200 that we miss talking to her and miss seeing her. I believe that evline really grew attached to her. Well half to go check on evline. Bye bye for now but not forever.

tammy,jerry, evline, cheryl

Monday, August 30, 2004 6:57 PM CDT

Hey! More good news. Evline gets discharged Wednesday. She get a two hour pass to come to the Ronald Mcdonald House tomorrow. She is now at 10.8 on her white cells. She is still congested but is doing better. Her daddy is also doing better. She is being sent home with medicines and oxygen at night. Which we figured that would still be the same. Maybe one day it will change. Evline is playing alot more and trying to sleep during the day instead of night time. We are cleaning her room out early that way everything will be set up for her when she gets out for the two hour pass. I don't know if she is going to like me taking some of her toys back the Ronald Mcdonald house but I think she'll be alright for a day. I am going to get back to the room before she wakes up.
bye

tammy,jerry,evline,cheryl

Friday, August 27, 2004 10:38 PM CDT

hey you guys we have got good news. Evline's bone marrow took she is on the road to go home well at least to the Ronald Mcdonald House for the next three in a half months. Thank you all for your kind words and pray. Keep her and us in your prayers. She is doing really good. the dr. said that monday we will set a date when evline will get to leave the hospital. Me and her daddy has been sick so therefore we haven't got to spend much time with her but know that i am better i at least get to go in the room with her. Cheryl and Jeff got to go on their anniversary date today. I know that she was really happy to get to leave and spend some time with him. it is hard for me through because i have to keep a mask on and it is hard to breathe threw them. but i am very thankful at least i get to spend time with my baby. Evline is 6.4 today and eating alot and also is playing alot. I didn't think that she had that much energy boy was i wrong. she has more energy now. i think anyways. hate to make this update short but i half to go back in the room before evline wakes up. I'll keep praying for everyone.

Tammy, Evline, Jerry, Cheryl,Jeff

Wednesday, August 25, 2004 0:35 AM CDT

Day +26

Hello everyone,

Sorry its been so long between updates. Evline has tested positive for a virus. She's in contact isolation now. The test was drawn Monday, Aug. 16th. The quick test was negative but the culture showed positive. Its amounts to what would normally be a cold but with her suppressed immune system, it can be worse. She hasn't had to have oxygen since yesterday so I'm hoping shes getting better. The thing is her mom, Tammy, has acute Tonsilitis and her dad, Jerry, has acute Bronchitis. So, right now its just Evline and me for a few days. Jeff is supposed to be down here by Thurs. It will be our 22nd anniversary.

I had the good fortune of meeting a child today who was 7 years post transplant. She is a beautiful little girl. Her mother says she does well academically as well as physically. Meeting them was a true blessing.

This is probably one of the quickest updates I have done. Evline was restless when I left the room and I don't want to be gone too long. I've also posted new pictures.

Remember Evline in your prayers along with all the other precious little ones here on 5200.

Thursday, August 19, 2004 10:48 PM CDT

Just wanted to try to get a quick update in. Somehow my quick updates aren't so quick. Anyway, its seems I was mistaken about her ANC. It isn't above 500. The nurse told me a few nights ago that it was but when I talked to the doctor yesterday he said it only three hundred something. I figure the nurse must have looked at the numbers wrong. But, her white count is at 1.4. It doubled from .7 yesterday. I was a little concerned but I am assured that that is okay. You know me, always the worry wort.

Jerry is gone to get Tammy. They should be back tomorrow or Saturday. The discharge nurse came by today. She and I will meet tomorrow to discuss, I guess, discharge instructions. They are supposed to train us on the pumps next week.

They've cut her TPN back to 18 hours. We are told if everything goes well we may be discharged by the end of next week. My husband is supposed to visit us next week. He is taking a vacation from work. Next Thursday we will be married 22 years. He plans to be here for our Anniversary. I really miss him and I look forward to seeing him again. He couldn't be here when she was admitted but maybe he'll get to be here for her discharge.

Evline had an allergic reaction this evening. We aren't sure what the reaction was to. I noticed after the nurse changed her TPN that she was sorta cranky and acted sleepy. She had just awakened from her nap about an hour before. Then I noticed she was tugging at her shirt near her lines. I took her shirt off and her whole chest was red as was her back. I called for the nurse. She went for the doctor. By the time they returned her head neck and upper torso was blood red. She was crying and scratching her head. They gave her some benadryl. I raised her legs and it was on her bottom and heading down her legs. Also, she broke out in hives on her back and shoulders. They think it was the mega vitamin in the TPN. They stopped the regular TPN and later they started her on TPN without the vitamin. She looks okay now and she seems to be resting comfortably.

Well I guess I'd better go. I don't want to leave her for too long. Thanks again everyone for your prayers and kind words. They have helped carry us through all this, especially the prayers. I know GOD has helped her and us. This experience has been a real eye opener for me. Sometimes I want to question why because these children don't deserve this. But I have to believe that something good will come of it, something wonderful. I also believe GOD has HIS eyes on these children, not just the Hurler children, but also the ones with Krabbes, Hunters, MPS III, cancer, tumors, and all the other horrible afflictions these children endure. They are the strong ones. I really admire these children.

Love to all.

Cheryl, Jerry, Tammy, and dear Miss Evline

Wednesday, August 18, 2004 0:32 AM CDT

Hello everyone,

Day 18

Sorry for the amount of time between updates. Seems like there just isn't time sometimes. It is Tuesday night, well I guess early Wednesday morning. Evline is asleep and I thought I would sneak out and do a quick update. Evline was at .6 yesterday, Monday, and today, Tuesday, she is at .7. Her ANC was just above 500 yesterday. If she stays above 500 for 3 days shes considered engrafted. She had a hard time breathing last night. Her respirations were fast and she labored for breath. It was as if she was having an asthma attack all night long. Today her respirations have been fast but it has been easier for her to breath. The doctor last night and the the one today said they believe it is where she is engrafting and her lungs are reacting to it. They also believe she is retaining fluid. They gave her an extra dose of diuretic last night and increased her dosage today. The doctor said today that if she is retaining fluid, it could be trying to build in the lungs. Tonight she isn't on the oxygen yet and her breathing is a lot better. Her navel is starting to poke out and looks a little purplish. It almost looks as if she has a rupture but I can't think of a time when she would have strained hard enough for that to occur. Jerry hasn't mentioned it either and I'm sure he would have. When I talked to the doctor he said that she could have fluid in the belly and it is putting pressure on her navel. We also think she is having some bone pain. She cries when I lift her legs to change her diaper and sometimes when I hold her and rock her for her naps, she acts as if it hurts her shoulders to lay on my arm. Yet she doesn't want to lay in the bed to go to sleep. She likes for me to hold her and sing to her.

Now for the good news. Throughout all this there has not been a day that she wouldn't sit up and play. Everyone talks about how easily she smiles and how hard she plays. The doctor said yesterday, Monday, August 16th that she has done really well and she may be released from the floor in a couple of weeks if her cells keep climbing. So, hopefully she will continue to do well. I know that it has been by the hand of GOD that she has done so well. The major concern now is fluid retention and her blood pressure. She is still on two different kinds of blood pressure medicine. However, this could be connected to the fluid retention. Hopefully this will improve.

I'll go for now. GOD Bless Everyone. Stay well. And thanks ever so very much for your kind words of support and prayers.

Cheryl, Jerry, Tammy, and little Miss Evline

Friday, August 13, 2004 10:08 PM CDT

Day +14

Hi everyone,

Evline is sleeping and I thought I would sneak out to do a quick update. This week has been a busy week. Tammy had a sore throat Wednesday. According to the ER doctor she has tonsilitice (SP?). I took her home Wednesday so she could get medical care.

Jerry called about 4:00 a.m. Thurs. and said Evline's white cell count is at 0.2. I intended to return Thursday but Jerry called and said the weather wasn't too good. My husband and I decided I would wait until today to return. This gave me the opportunity to visit with my other two grandchildren. The three year old would play for a while and then she would give me a hug or she would lay her head in my lap and say "J.J. loves you mamaw", or "J.J. misses you mamaw." I spent a few wonderful hours chasing Kiki around the house as she tried to sneak into areas that she wasn't allowed to go such as the bedrooms or the bathroom. She would laugh and for us it was a wonderful game.

Then, this morning more good news. Evline's white cell count had risen to 0.3. The nurse explained that they can fluctuate up and down but that doesn't mean they aren't growing. We won't know if she is engrafted for some time yet. Evidently, where Evline's donor cells were from the cord blood of a little boy, we may not have to wait too long to get the results.

They've started Evline on a diuretic. For some time now she has been drinking water. We think this has kept her system flushed therefore the mucocitis wasn't too bad. As the days since transplant have progressed, she has been drinking more and more water. The day I took Tammy home, she drank 30 ounces the day before and at least 30 ounces the night before. I asked the doctor if she could have milk. He said as long as it doesn't have lactaid and she tolerates it well that was fine. She drank her first milk Wed. night. Evidently, the medicines she is on can cause them to retain fluid. This coupled with the amount of liquids she is drinking has caused some concerns and the doctor put her on a diuretic to help take care of the problem.

Tonight she feels a little warm. While her temperature is still normal, the nurse, Geneise, said it is a little higher than what she normally is. When I left she felt warm. Her oxygen level has been dropping lately and we are using the blowby on her. Hopefully, if the diuretic drains the fluid from her, the oxygen levels will return to normal.

Well, gotta run. This was longer than I anticipated. Hope everyone has a good weekend. Stay well and GOD Bless.

Cheryl, Jerry, Tammy and Miss Evline.

Monday, August 9, 2004 5:50 PM CDT

Day 10

Sorry everyone for the delay in updating. Seems like this week has flew by. Evline turned 1 on Aug. 3rd. We had her a small birthday party back home before she was admitted to the hospital. On her birthday Tammy, Jerry, and I baked her a cake and had a small party. A lot of the nurses came by and got a piece of cake, which we were very thankful for. It made it seem more like a party. One nurse in particular even bought her something, her name is Bethany. She is one of our favorite nurses. All the nurses are great, but seems like you just feel closer or relate better to a certain few. Evline ate cheese curls and some of her cake. She mostly 'painted' her bed and herself with the cake. She had a good time.

They moved us. We are now in room 5209. This was a change because it is a smaller room. I was concerned because the child that was in 5209 had to be moved because he had contracted a blood infection. The room had to be cleaned twice and the filters in the room had to be changed. I'm still not comfortable with it but I guess I have no choice.

The doctors say she is doing great. They're keeping a close eye on her blood pressure. She has a mild LVH, so they are a little more concerned. She is now on two different BP medicines, one she takes by mouth and one by IV. She still plays hard and has a smile for everyone. The nurses comment almost daily on how hard she plays and how happy she seems to be. This I credit this to GOD because I know HE is taking care of her. She doesn't have the sores in her mouth yet; however, she does have a small ridge of something that you can hardly see on the tip of her tongue. I noticed it a couple days ago and the doctor commented on it today. He said she still may get the sores. I believe the reason she hasn't gotten so sick is because she drinks water through her bottle. Many are surprised that she can still take her bottle or that she even wants it. She went a little while without it, then after they put her on the morphine pump, she began taking it again. The doctor said we shouldn't give her milk yet but it is okay for her to have water. What is so odd is that she never drank water before now. They say as long as her weight doesn't go up, she is okay. They are worried about fluid retention. I believe GOD saw a way for her to be able to drink water and this has kept her system flushed. She has a small infection around her lines on the outside of her body. She hasn't been able to go to the weekly dressings yet. This is making places on her skin where the tape has to removed daily. Today the nurse used a bandage and just wrapped her chest over the gauze rather than using the tape. Hopefully this will allow her skin to heal. Her bottom is looking 100etter. It is still raw and red but it is healing slowly.

We are still waiting for the cells to develop. Bethany said it is too soon but by next week, maybe...

Her papaw Jeff came down this weekend and was able to spend some time with her. This is the first he has been able to see her since just before she was admitted to the hospital. I was very glad to see him. I miss my family, but in 22 years, this is the most time that Jeff and I have been apart. Its not easy but it is worth it and more for Evline.

Evline's other grandparents and her great-grandmother on her mother's side were able to come and see her also this weekend. It was their first time visiting her also. I know Tammy misses her parents and I know she was glad they were able to make it.

Evline had a great time with all her visitors this weekend.

We would like to thank everyone for their prayers and kind words. I know I keep saying the same thing, but I really mean it and I just want people to know that we really mean it. It is the prayers and encouragement that keep us going.

Everyone stay well and take care. GOD Bless.

Cheryl, Jerry, Tammy, and our precious Miss Evline

Monday, August 2, 2004 6:56 PM CDT

Evline is at day 3 now. Dr. Driscoll said she is doing just what they expect. He expects soon that she will need a transfusion. He thought it might happen this weekend but her hemoglobin stayed just above 8. It was 8.2 now it is 8.7. I asked him if that meant that she was still making blood and he assured me that her bone marrow is lethally damaged and she is not making blood. Her white cell count is 0.1. He said she will need platelets soon also.

Tomorrow is Evline's birthday. We celebrated with family before she was admitted into the hospital. Tomorrow some of the hospital staff is supposed to hang streamers outside her door. Tammy is thinking about getting a cake. Tomorrow Evline turns 1, the next day Kiki turns 1, and then Friday my third grand daughter turns 3. I don't know what has happened to the time. I blinked and I had one grand daughter. I turned around and when I turned back I had two more. They are truly wonderful children and I love all three very much.

There isn't much to report. The Dr. said that she will start getting sicker before she gets better. She has started vomiting some. She is still taking her bottle but it is only water and it is usually not much. She likes her bottle when she sleeps.

Caterina came by and said hi today. She was out in the hall with her mother and grand mother. She had her mask on which I think is remarkable. I can't even get Evline to keep a mask on long enough to get from the bed to the door. Perhaps later she will if we keep encouraging her.

As time goes on I'm sure I'll have more to report. Your comments on the guestbook mean a lot to us and your prayers mean even more. We are very, very thankful for all those who have supported us and have prayed for us and Evline. Believe me your prayers have not gone unheard. I believe it is by the grace of GOD that she has done so well.

Everyone take care and stay well. May GOD Bless you all.

Cheryl, Jerry, Tammy, and Evline

Friday, July 30, 2004 5:22 PM CDT

Today Evline received her transplant. I couldn't believe something so important, that has such an impact on a person's life, came in such a small amount. Its strange. Up until today I've been afraid and worried. I'm still worried but I felt happier today than I have in a long while. I don't feel as afraid anymore. I guess its because we are past the point of no return and we have no choice anymore. Its either transplant or she dies. I worry because her match is 4 out of 6 numbers. But, thus far GOD has done a wonderful job taking care of her and I have no reason to believe that HE will stop now. Present at the transplant was me, Jerry, Tammy, two nurses, and of course Evline, the star of the show, who was asleep. Now for the healing to begin and we wait for the cells to grow.

Miss Evline surprised us again. She started taking her bottle again. She took three ounces of water last night. She was tossing and turning and fighting sleep so I gave her a water bottle. That did the trick. I don't know if it was because the morphine takes the edge off the pain or what, but she took three ounces and didn't vomit. She went right off to sleep. Today she has taken about two ounces more.

They started TPN today and she is supposed to have the feeding tube taken out. The doctor said she is right on track and everything looks good for her. He told us to expect her to get sicker before getting better. I watch her playing you would never know all that is going on inside her. She loves to play and be held, especially if you are standing.

I met Caterina today. She is adorable. She had just woke up from a nap and wasn't ready for visitors but she is a little doll. She is about three months older than Evline. She has the same diagnosis as Evline and is beginning her treatment. Everyone remember her in your prayers, please.

On the down side, guess what? I got a $100 ticket last night. It was almost 11:00 p.m. and I parked my car down towards the Clinic. When I arrive, Jerry gets the car and leaves and when they arrive I get the car. I went up and Tammy filled me in on everything as far as Evline's care. Anymore this is the only time I see Jerry and Tammy is when we change shifts. Jerry and Tammy left and didn't find the ticket until this morning. It is for $100.00. I can't believe it.

Well, I'm going to close. I'm going to try to take a nap before going back to the hospital. Everyone take care and stay well.

Remember Evline in your prayers and thanks again for all the support and kindness you have shown us.

Cheryl, Jerry, Tammy, and Evline

Thursday, July 29, 2004 3:54 PM CDT

Well, its day -1. According to doctors and nurses she is doing well. She ran a temperature last night and she is broke out in hives. She's not eating anymore. She mananged to eat about 8 ounces day before yesterday. But that night she gagged when I tried to give her a milk bottle. So, I gave her a water bottle. She drank three ounces of water that night. She didn't take a bottle yesterday. She did gum some graham crackers but I don't think she swallowed any. Last night I gave her a water bottle to go to sleep with. She drank about 2 and 1/2 ounces and then vomited it back up. For a couple of days now I noticed she's been occasionally crying like something is hurting her. Once she would roll back and forth and just cry and I couldn't figure out what was wrong. I told the nurse and she said she thought she was just upset but I knew. Anyway, yesterday I had her diaper off her bottom while she slept. When she woke up I was cleaning her up when she started having a bowel movement. She would squirt diarrhea and scream. I knew then what was hurting her. By the time I called the nurse, she went back and got her some pain medicine and returned, the bowel movement would be over. They said this is part of the mucocidous (SP?). Now they've got her hooked to a morphene pump that is giving her a very small amount continously. If we notice her acting distressed or in pain, then we can press a button to give a little more. After being pressed, it is eight minutes before it can be pressed again. And it won't give no more than 2 ml or mg (not sure which) in a 4 hour period. I am glad of that. Jerry was worried about overdosing her.

She doesn't get anymore chemo. She gets her last ATG today. According to the doc, its after the transplant when we'll really start seeing the effects of the chemo on her body.

The nurses say she had been a real trooper. She still sits and plays. She will go to sleep without her bottle, she doesn't even cry. Her little bottom is still in bad shape and when I clean her, she lays very still. She doesn't complain much. She's tougher than I am. I would be ranting and raving, screaming and crying. She just lays there and makes a grunting noise occasionally.

I guess thats all for today. I need to go check on the laundry and try to catch a nap before going out to the hospital tonight.

Thanks for all your kind words and prayers. You don't know how much they have meant to us.

Cheryl, Jerry, Tammy, and Evline

Monday, July 26, 2004 6:41 PM CDT

Hello everyone,

Well, Evline is still doing pretty good during her chemo. This is her second day of the Cytoxin (SP?). She has two more days to go on this medicine. Our mornings begin with an EKG at 8:00, her mouth care at 9:00, her vitals and her Cytoxin begins at 10:00 during which her heart is monitored. For a while now she's not been going into a good sleep until about 1:00 or 1:30 in the morning. Last night she was asleep by 12:00. Evline usually wakes up at least twice during the night. Now sometimes I wake her up changing her diaper. I don't want her bottom to get any worse, so I get up every couple hours or so and change her.

The nurses say they are surprised because she is still eating. She takes her bottle pretty good. Some foods that she ate before she can't tolerate now such as mashed potatoes and eggs. But Tammy and Jerry have succeeded in feeding her graham crackers and cookies. She tried to eat eggs this morning. She actually got some of them down before she started vomiting. She stayed nausious for a while. So no more eggs for Miss Evline for a long while.

She is sleeping more and gets tired a little easier. Tomorrow she begins the ATG to kill out the rest of the white cells in her system. The nurses say she will really feel yucky when this begins. This is the medicine that will cause her to run a temperature.

Also, she is currently on blood pressuer medicine and still her bp is high at times. Now the nurses try to take it when shes asleep hoping to get a low blood pressure.

On the up side she got her hearing aides today. When the audiologist put the hearing aide in her left ear her eyes went wide and she just turned and looked at the audiologist. I wanted to cry because as much as I knew she had a hearing loss, I guess I just wanted to believe they were wrong. I took the right hearing aide out when she was laying in my arms and I was rocking her because it was making a ringing noise. Then I couldn't get it back in. Barbara had to help me. It looked so easy and she didn't mind a bit when the audiologist put them in. Boy did I have a fight when I did it. I guess because I didn't know what I was doing. But, I'll learn.

Well that's about it for now. We miss everyone back home. Tammy I know misses her family. This is the most she has had to spend away from them. She has Jerry and I but I know its not the same and she misses her family terribly. I miss my other two grand daughters Janice and Kiki. Janice will be three on August 6th and Kiki will be 1 on August 4. Evline is 11 hours and 50 minutes older than Kiki. Evline will be 1 on August 3rd. I talked to Janice today and she has a new puppy. She told me it was a pretty puppy. Then I heard her say "papaw, wanna talk." Jeff laughed he said she was trying to show me the puppy, evidently through the phone. I miss my husband and my other two sons and everyone else. I found out I'm to be a grandmother once again. It is due in December. For years I was hoping for another child until I met my first grand daughter. Now I know GOD did something better, HE gave me grandchildren and I love them dearly. I thought there was no better love than the love for a child, I was wrong. I don't love my grand children more but I do have a strong love for them and I am so proud of them.

That's all for now. Everyone take care and GOD Bless.

Cheryl, Jerry, Tammy and Evline

Friday, July 23, 2004 7:07 PM CDT

Hello everyone. Well Evline is doing well with taking the first part of the chemo--the Busulfan. She has vomited only twice and they were at least 45 minutes after taking the medicine so it didn't have to be repeated. They are giving her Dilantin to prevent seizures. They told us today that her Dilantin levels were low so they are increasing her medicine.

Also Evline began taking blood pressure medicine yesterday. Her blood pressure has been running a little high. The nurses said that Hurler children sometimes have a thickening in the heart which causes them to have the high blood pressure early in the transplant process. Evline has a little thickening in the left ventricle wall. She will be on this throughout the transplant.

And she has developed a diarhea (SP?). This is probably normal but her little bottom is becoming very raw. I know this may be more info than anyone wants but if anyone knows any little secrets that helps we would appreciate it. A raw bottom is very painful.

Her speech therapist and physical therapist came yesterday. By the time they were finished and I had bathed her off, she was so tired that she threaded her little arm under mine so that I would lay her down in my lap and went right off to sleep.

Lately we've noticed she hasn't been taking as much milk as she normally does. They changed her from Neosure to Pregestimil yesterday which is a type of formula she was on before the Neosure. They want her on a Lactose free diet and Neosure has Lactose but Pregestimil doesn't. They want her on Lactose free because she will soon not be able to tolerate the Lactose.

Even with all this Evline is still the playful, energectic little girl she always has been. Everyone comments on how happy she is. She has a smile for everyone and most of them remember her from when she had her tonsils removed in June. Some of the ones that aren't even assigned to her stop to get a smile from her or just to say hi. She is such a special little gift from GOD.

Well, I'm going to the room to get a little nap before I go back to the hospital. I have the night shift as the nurses call it. I stay at night and Jerry and Tammy stay during the day. Before I go, there are some very special people I know who are going through a really tough time right now. I don't have their permission to write any specifics so if everyone would just remember them in their prayers I would appreciate it. They go to church and they know the LORD can move in all things but it never hurts to have others praying for you also. In fact, it just might help. So, when you say a prayer just ask the LORD to help them through this time according to HIS will.

Everyone take care and stay well.

Cheryl, Tammy, Jerry, and most of all Evline.

Wednesday, July 21, 2004 7:01 PM CDT

Hi everyone,

This is Cheryl. Well, Evline's transplant process has finally begun. It was originally scheduled at the end of June but Tammy got sick. To be on the safe side, and negotiations were still going on with Evline's insurance, it was postponed a week. Guess what, Tammy got what appeared to be the beginnings of a cold but turned out to be allergies. Still negotiations were going on with the insurance and it was postponed another week. Then Evline developed a rash, some of which had the characteristics of Chicken Pox, so to be on the safe side, it was postponed again. This time the insurance negotiations were settled. Finally, Evline was admitted yesterday morning and received her C lines. She woke up pretty sore. She has two lines in her chest. One has a double line and the other a single. They had trouble getting the single line into the blood vessel and had to cut her on her neck and I guess insert it into the vessel there rather than at the collar bone. She began her dilantin (SP?) last night and her Busulfan this morning. Last night she began running a fever. It was around 100.7. I was surprised and a little worried but they began her chemo this morning at 4:00. They are doing cultures on her lines to check for infection. The medicine makes her naucious. But she is being a real trooper. The occupational therapist began working with her today. I reckon she will have a speech therapist and physical therapist also, if I understood them correctly.

We appreciate everyones thoughtfulness and we ask that you keep praying for Miss Evline. GOD has been so good to us thus far. He has blessed us tremendously. I'm not attending church right now but I know where my help comes from and I am thankful.

Friday, June 25, 2004 8:43 PM CDT

Hey everyone!

This is the first time that I wrote any kind of journal entry on sissy's website. She gets her BMT on July 9th. I am happy but scared at the same time. She gets her centrals lines tuesday and gets put into the hospital to start her chemo the next day. She will first be getting a chemo therpy medcine called Busulfan for four days, then she will get another kind chemo therpy medicine called Cytoxan for four more days then she will have one day to rest from those drugs, then the next day she will have her stem cell transplant. The dangerous thing about bmt is not so much the bone marrow but the chemo that wipes out her immune system. that makes her realy weak and able to get sick realy easy. they have to put a NG tube down her nose so that they can make sure that she gets the medicine instead of her swolling the medicine and worring about her not getting all of it or throwing it back up.well thats all for now bye.

Cheryl, Tammy, Jerry, and Evline

Wednesday, June 16, 2004 7:49 PM CDT

Just wanted to add this to the web page. Today is Friday, June 18th. Evline is still in the hospital. Her oxygen levels keep dropping at night into the 70's while she sleeps. It doesn't do it during the day when she naps, only at night. They put her on 1 litre of oxygen last night and if that had worked they were going to send her home with oxygen. It didn't work. They are bringing in a Pulmonologist today. I guess we'll go from there. Remember her in your prayers.

Hi Everyone!!!

We are here at Duke University. It's been really busy. They have done almost every test possible on Evline. She's doing well. They took out her tonsils and adnoids and put tubes in her ears two days ago. She's a little grumpy but she's doing okay. She's not as friendly with strangers as she was. Now she acts like she's kinda scared of what they will do to her. She's scheduled for her C-Lines on June 29th and the transplant is sceduled for July 9th. We're a little scared but we're okay. Everyone has been so supportive.

Sorry I haven't updated recently. We've been down here since Monday, June 7th and this is the first opportunity that I've had to update.

Remember us in your prayers.

Cheryl, Jerry, Tammy, and of course Evline

Thursday, June 3, 2004 4:59 PM CDT

Hello everyone!!! We've gotten some exciting news. Kentucky medicaid has agreed to pay for an evaluation at Duke University. What this means; I don't know. I reckon that medicaid is doing things in steps. Right now they've approved the evaluation then I guess they'll consider the next step. But, at least they have agreed to this. It gives us hope that they will agree to the transplant when the time comes. We are supposed to be there by 4:00 Sunday. Right now we are excited and scared. We don't know what the future holds. We are nervous about her chances of surviving everything. Also, she has a little bit of a cold or something.

We just found out yesterday evening so it doesn't give me a lot of time to get things worked out at work. Today I took the kids on an end of the year field trip. So, tomorrow I will need to close out their files. But, I don't care. If I get it done, I get it done.

Everyone take care and GOD Bless.

Tuesday, May 25, 2004 3:58 PM CDT

Sorry everyone that its been so long since the update. So much has happened in the last almost three weeks. We went to see the surgeon for a consultation last Monday, May 17th. She took us over to talk to the Anesthesiologist (SP?). She knew time was very important since Evline hasn't had an ert in 8 weeks. They scheduled her port for today. She seemed to be trying to hurry things along. I was a little stunned because it took three weeks to get a consultation but once we were there it was like 'you need this done really fast so now we are going to try to hurry'. However, they were really nice and the surgeon seemed concerned and answered all our questions, I'm just a little frustrated at the time factor. The port would have to heal completely before she can have her treatment. She was diagnosed on January 23rd. Since then she has had 2 treatments. It just seemed like time was passing so swiftly for her, I'm worried about the damage that has occurred since she was diagnosed. She was 5 months old when she was diagnosed and now she is getting ready to turn 10 months old.

So, I finally took some advice from some of you all and contacted Dr. Kurtzberg. LORD how I wish I had done that sooner. She e-mailed me back almost immediately. After a few e-mails back and forth she told me that they would do a search for a match for Evline at no cost or obligation to us. By Friday she told me she had a match. When I received the good news via e-mail, I almost fell trying to get out from behind my desk to tell my co-workers. Some were crying too and we were all so excited. Everyone was asking what's next. I told them I would have to find out. She asked for a home number to contact us by. She called Saturday.

Jerry and Tammy both agreed that they wanted to have the transplant done at Duke University. I have heard a lot of good things about Duke and particularly about Dr. Kurtzberg especially from parents of children who have been under her care. Dr. Kurtzberg prefers the blood cord and said the cells would get into the brain and bones better. She also uses two C-Lines so needless to say, we are not in Cincinnati today for the port. I almost wish she did use the port. It would be so much easier on her for a little while for the blood draws and IVs she may need in the future. Currently they are working out the finances. I hope that Evline't medical card will pay for the transplant. If everything works out we should be down there in a couple of weeks. Jerry also graduated Sunday. This past few days have been so good, it scares me. I'm afraid of whats going to happen next. I believe GOD has worked through all this so I'm hoping we'll be okay.

Poor little Evline did roll out of bed yesterday morning. I was in the bathroom getting ready for work when I heard a big thud. I thought Oh GOD please no. I was very still and listened because Evline has a hoarse cry. Sure enough I heard her. I ran from the bathroom into my bedroom (good thing the kids weren't up yet, LOL) and sure enough there she lay. I picked her up and looked her over good. I couldn't find a place on her. I've always heard its good luck for a baby to roll out of bed before they are a year old. This makes twice, once was in a hotel room in Cincinnati. Does this mean she'll have twice the good luck? Pray for little Evline.

Well, I'll go for now. Sorry this is so long. Pray that GOD's will would be done because HE knows what is best.

Thursday, May 6, 2004 1:22 PM CDT

Sorry its been so long since the update. Evline has been doing very well considering. She has a little bit of a cough but otherwise she seems to be doing okay. The last time we went to get her enzyme treatment they were unable to access her veins. Jerry and Tammy have decided to have a port put in. I would like to thank everyone for the information and the web sites. They proved very helpful. Thus far everything we've heard from those who've had a port has been good. We've also talked to other doctors about it and they like the port better. One doctor went as far as to say that if it were their child they would go with the port. We've told the docs this. Now we have another problem. Evline doesn't weigh enough. A child is supposed to weigh 22 pounds and she weighs 18. We have an appointment in a couple of weeks to talk to the surgeons to see if they think they can put a port in Evline. When we meet with them it will be 8 weeks since her last treatment and she has only had two treatments since being diagnosed in January. I don't know how long it will be after the consultation until the port is actually put in. Also, we've been told it could be months until she gets her transplant.

I believe the reason Evline hasn't had any problems with ear infections and is doing so well is prayers. We want to thank everyone for those prayers. Prayers is what she needs the most. They are her best hope. For those of you who have been praying for my uncle Jack, he passed away this morning. Remember his loved ones in your prayers.

Wednesday, April 21, 2004 7:56 AM CDT

Evline can't have her Enzyme Replacement Therapy because the doctors were unable to access their veins. We are going to have to either let the doctors put a pik line in her arm or a port in her chest. We are scared of both. If you have any information about either one, please sign in the guestbook and let us know what you know.

Well we took Evline back to Cincinnati last Monday. They were unable to do the treatment again. This time it wasn't because Evline was sick or anything, they couldn't get the IV started. They tried for I know two hours. We even tried a heating pad to warm the veins. I guess it helps the veins to expand, but it was no use. Evline was crying, I was crying, even one of the nurses was crying. I reckon they are really good at getting the IV's in. I know when she was in the hospital a few weeks ago they couldn't get the IV in. Now they tell us that the veins are no longer an option. The options now are no infusions, a pik line, or a port. We considered a central line but that can only be done once and she'll need that for the bone marrow transplant. We are leaning towards the pik line in the arm. We really don't know the pros and cons of these options yet.

I talked to the Angie with bone marrow and there were too many numbers that didn't match with the specimens they have thus far. They are sending back to the bank for more. It looks like it could take a few more months.

Remember Evline in your prayers. Don't forget my Uncle Jack. He's in Knoxville in the hospital. The doctors aren't giving us much hope but it's all in GOD's hands. We really do appreciate all the support and prayers from everyone.

Monday, April 12, 2004 10:54 AM CDT

Well, Evline got out of the hospital Thursday. She has a bad cough but otherwise she seems ok. My son, Evline's uncle, got married Saturday. Their wedding was small and I thought it was beautiful. The reception was great. It was held at an old school gym which worked out perfectly. The food and a few small tables were set up at one end where most of us older adults were eating and talking. The kareoke (probably not spelled correctly) was set up in the middle and the teenage girls took care of the music and sung some of the songs. At the far end of the gym is a basketball goal and the young boys played ball for a while. It gave everyone something to do without children getting in the way and complaining about being bored. My son and his new wife pretty much took care of everything themselves and I thought they did a wonderful job. I'm glad they did. This past Friday is the first Friday I've been home in the evening in a long time. So, if they had depended on me, they might have been disappointed.

Easter was fun. Like big dummies we went to the lake and bar-b-qued. My sisters and I have celebrated Easter at the lake together for the past few (feels like several) years. Usually, even if it is below freezing outside, my three sons go swimming. This year only one kept up the tradition, Evline's dad. He went to dive in and hit bottom which gave us all a good laugh (even him). It looked deeper that it actually was. He has survived thus far. This weekend feels like it was a month long but we had a good time.

I know this journal entry is more about the family than Evline but Evline was there for all events and she was such a good baby. She still has the cough so we are keeping up the breathing treatments and antibiotic. She has a steriod type medicine to take but it makes her gag and she vomits everytime I try to give it to her. Therefore, we are giving her the Pulmicort and Albuterol. She sounds hoarse now just about all the time. The cartilege on her vocal cords is longer than it should be, so I'm thinking that may be why. Her next enzyme treatment is scheduled for Mon., April 19th. I'm hoping everything goes well.

See you guys next time. Remember Evline and Uncle Jack in your prayers. He has good days and bad days, but the LORD can move. Just pray that HIS will be done with both Evline and Uncle Jack and that we are able to accept HIS will.

THIS IS FOR BLUEDOMINUSS--IN ANSWER TO YOUR COMMENTS IN THE GUEST BOOK FOR WEDNESDAY APRIL 14, 2004, 9:35 CDT. I'VE LIED ABOUT NOTHING. ANYONE THAT HAS BEEN THERE FOR ANY OF THE EVENTS MENTIONED IN THESE JOURNALS CAN VERIFY THEM. ANYTHING OTHER THAN WHAT IS MENTIONED HERE-YOU'LL HAVE TO BE MORE SPECIFIC. I NOTICED YOU DIDN'T INCLUDE YOUR NAME. I WONDER WHY. IF YOU KNOW ME THAT WELL THEN YOU KNOW HOW TO GET IN TOUCH WITH ME. BELIEVE ME I WOULD LOVE TO MEET YOU. AS FAR AS THE MEAL TICKET GOES, I HAVE SET UP A BANK ACCOUNT FOR HER. THAT MONEY WILL BE SPENT EITHER ON HER DIRECTLY OR IN SUCH A WAY AS TO ENSURE THAT HER NEEDS ARE MET ESPECIALLY HER MEDICAL NEEDS. IF YOU WANT RECEIPTS I WILL GLADLY PRODUCE THEM WHEN THEY OCCUR. SINCE NONE OF THE ACCOUNT HAS BEEN SPENT BECAUSE WE HAVE PAID FOR EVERYTHING, I HAVE NO RECEIPTS NOW. HOWEVER, I CAN PRODUCE RECEIPTS AS TO WHAT I HAVE SPENT PERSONALLY. WE WILL CONTINUE TO PAY FOR EVERYTHING AS LONG AS WE ARE ABLE. THE MONEY IN THE ACCOUNT IS SET ASIDE FOR THE TIME WHEN WE CAN'T PAY FOR THINGS. SINCE HER ILLNESS IS A LIFELONG ILLNESS I'M SURE THE DAY WILL COME WHEN THE MONEY IS NEEDED.
MAYBE, JUST MAYBE, IF YOU TRY HARD ENOUGH, YOU CAN THINK OF A WAY THAT YOU PLAY A MORE POSITIVE ROLE IN THE STRUGGLE TO GET EVLINE AS WELL AS POSIBLE. OTHERWISE, YOU'RE WASTING YOUR TIME HERE. IF YOU DON'T HAVE THE GALL TO TALK TO ME FACE TO FACE, OR AT LEAST INCLUDE A FIRST NAME, I DON'T HAVE THE TIME OR THE ENERGY TO WASTE ON YOU. THIS IS THE ONLY TIME I PLAN TO ADDRESS YOUR COMMENTS. THIS WEB SITE IS FOR EVLINE. SHE IS THE STAR OF THIS SITE, NOT YOU OR ME. (Besides that, you really need to learn how to spell.)

Wednesday, April 7, 2004 8:38 AM CDT

Sorry everyone that I haven't updated recently. Seems like there's no time. I can't believe its been almost a month since the last update. The Enzyme Replacement Therapy following my last update went really well. My mother-in-law was scheduled to have a heart catherization done on Thursday March 18 and ended up haveing open heart surgery on Friday March 19. They did a double bypass. The doc said she still has an artery that is 40locked. She had a tough time coming off the respirator. She is also a diabetic and her recovery has been slow. She was in Central Baptist Hospital. She got to come home Monday April 5th. I have been staying in Lexington on and off since March 19. Her sister and I took turns staying with her. Evline even stayed with me some up there. The nurses all seemed to love and play with her. Evline was a good baby and didn't fuss too much. Even the nursed commented occasionally on how good she was.
Evline was scheduled for an ERT this past Monday April 5th but had a temp of 99.5 so she didn't get her treatment. They gave her some tylenol and she did great all day Monday. I thought yeah, she got out of that one. But Monday night she started feeling warm again and Tuesday morning she woke with a temp of 103. So she's in the hospital as a precaution. As of yesterday evening her temp was normal; however, she does have some coughing. The respiratory therapist said there is some congestion in her chest. This morning Jerry, her dad, called and said the doc said she will probably go home tomorrow. He said she is doing a lot better. Last night before I left to go home she had played most of the day and napped. She didn't seem to mind the oxygen tent or anything. Sometimes I had to put my head in the tent and play with her otherwise she was fairly content.
We are supposed to contact Cinn. Children's Hospital the end of this week to see if we should take Evline up there next Monday. Also, they seem pretty close to finding a match for Evline for Bone Marrow Transplant. I'm tickled and afraid at the same time. I know she has a large chance of suffering complications or even death from the transplant.
Remember my uncle when you pray. He is in the 4th stage of cancer. We were able to go to Tenn to see him this past weekend. He is very dear to me. Pray that GOD's will to be done both with Evline and Uncle Jack.

Thursday, March 11, 2004 12:04

Evline received her first Enzyme Replacement Therapy (ERT) Monday. It went really well. The doctor said she really didn't expect any reaction to the ERT until about the third infusion. The nurse had a little trouble getting Evline's vein. Other than that, it went okay. We met with the bone marrow transplant people. They took blood from Evline, Tammy and Jerry. They are supposed to let us know next week if they think they will be able to find a match. According to them, Evline will be in the hospital for six to eight weeks provided there are no complications. Then we will have to stay in the Cincinnati city limits for 100 days.

I want to thank everyone for their prayers and support. Evline's oxygen level during the ERT stayed around 97-100 which is wonderful for her. It is usually in the lower 90's which is within a normal range but is low for a child. I just believe that GOD's hand was on her Monday for her level to have been that high. In fact, she hasn't had a breathing treatment since Sunday night. That doesn't mean that she won't tonight but thank GOD she hasn't needed one yet. I was a little concerned this morning because she is starting to sound a little congested. She's also been throwing up more than usual. But, she's not yet run a temperature so I'm hoping she is okay.

Everyone remember little Katilynn. She wasn't able to receive her ERT because she had a temperature. When I visited her web page I noticed in the guestbook where she has been put in the hospital. Everyone remember them in your prayers. Colds and flus are so much more serious for these children and they need all the prayers they can get.

Again I want to thank everyone for their kind words of support in the guestbook and in person, for their prayers, and for their concern for our baby Evline. It has just meant so so much to us. Tammy, Evline's mother, prints the guestbook entries to keep. They are a comfort to us.

Friday, March 5, 2004 12:20 AM CST

Sorry I haven't updated in so long. I hope this finds everyone doing well. We took Evline to Johnson City to see a gastroenterologist (not sure if I spelled that correctly-its a stomach doctor). She is scheduled for a swallow test and stomach x-ray in a couple of weeks. I've been trying my best to keep Evline well for the ERT Monday. I got a little worried Wednesday when we were at Johnson City-she was running a small temperature. However, she seems to be doing well. She still has trouble breathing at night. It sounds like something is capping the air off and stops her from breathing. Then she wakes up irritated. I've noticed her nose isn't running as much as it normally does; hopefully that's a good sign.

We are supposed to meet Katilynn and her family Monday. We look forward to that.

I plan to update the pictures in the photo album if anyone would like to view them.

We really appreciate all the kind words in the guestbook and the prayers that everyone is praying for dear Evline. Its very comforting to know that there are so many people who take the time to care. There are even some who take the time ro check in on Evline on a fairly regular basis. We are truly blessed.

Remember us Monday and pray that all goes well for Evline. It is so hard to hit her veins and I am afraid she will need to be stuck numerous times for her to receive her therapy.

Monday, February 23, 2004 12:31 AM CST

First I would like to thank everyone for their support. It really means a lot to Evline's mom and dad, me, papaw, and the entire family to see how many care and to read the encouraging words written in the guestbook. It brings tears to my eyes and really touches my heart. Its like a blanket of comfort and we really do appreciate it.

The trip itself to Cincinnati Friday was fairly uneventful. However, what the doctor had to say was disturbing. He gave us a copy of the photos of Evline's neck. She has what is called a floppy larynx. Our vocal cords are attached to two pieces of cartilage. These stick up like two little tips where they are attached. Evline's stick up like fingers and lap over her vocal cords. How much this is affecting her breathing is unknown. They won't know this unless they do a sleep study. An operation is an option but it is one that Dr. Wood and the rest of us would like to avoid. He said that with anyone there is swelling when the cartilage is trimmed but with Hurler children there is massive swelling. Many times they end up on a ventilator or something. The doctor is hoping that when the ERT begins, the MPS buildup will stop and allow Evline to get better with time. From what he saw, the swelling of the cartilage appears to be from MPS buildup. Also, there are little bumps or nodules on her neck which is from the reflux. We have got to get this under control as soon as possible. If some of what she is refluxing gets into her lungs, this can cause infections. This can be very devastating or even fatal when she has her chemotherapy.
Dr. Wood said her lungs look good. They put a saline solution in and gathered a specimen to see if she is aspirating. The results of that should be back sometime this week.
When we got there they almost didn't do the bronchoscopy because of the way Evline is congested. We told them that according to her pediatrician this is the best she will be able to breathe due to the small nasal passages. So, they decided to go ahead with the procedure. Hopefully this procedure won't make her sick and I am glad to get it over with. The ERT is scheduled to begin March 8 as long as we can keep her well.
Remember Evline in your prayers and thanks ever so much again for the kind, encouraging words and support.

Cheryl

Wednesday, February 18, 2004 8:08 PM CST

Well I guess things are finally in motion now. I talked with Dr. Wood's office and the details for the bronchoscopy have been arranged. This has been scheduled for Friday Feb. 20. I took Evline for her physical today. Dr. Saxena is recommending a 24 hour hospital stay for observation purposes because Evline has trouble with her breathing. He has diagnosed her with asthma. Otherwise, her physical was okay. Michelle e-mailed me today with the first three infusion dates for her ERT. I'm hoping she doesn't have a reaction. From what I understand most children do have some type of reaction by about the 3rd infusion. The ERT dates have been scheduled for Mondays so I won't have to miss two days work and I won't have to reschedule that many home visits. I only have one home visit on Mondays so that will work out great. However, if papaw decides to go, Mondays aren't good for him. I don't think papaw will be there for very visit so I think the dates will be fine.

By the way, today is her great grandmother's birthday. Happy Birthday grandma Lillie!!!

Sunday, February 15, 2004 9:35 AM CST

I guess for the first page of the journal I should start at the beginning, when Evline was first born. She was born on August 3, 2003. Her mother had a hard time with the birth. It seems Evline was stuck in the birth canal or something. Her face was so swollen when she was born. She weighed 8 pounds and 8 ounces. I noticed the knot on Evline's back before she came home from the hospital after she was born. Her mother, Tammy, took her to the doctor and they appeared to be unconcerned. We took her to another doctor. He ordered an x-ray, but told us the knot must be extra tissue and talked as if it was nothing to worry about. We were concerned because her mother had scoliosis as a child.
The pediatrician had some concerns of his own for which he referred us to see a geneticist in Corbin, a Dr. Hall. His concerns were the shape of her head, possible hearing loss, and a small ASD in her heart. Tammy and her father Jerry kept saying that they didn't believe their daughter was deaf in her left ear. I thought perhaps the pediatrician thought there was a genetic reason for her hearing loss. Her back wasn't even mentioned on the referral. Dr. Hall seem to think her back was a major indication that there was something wrong. We saw Dr. Hall in Corbin on Wednesday, Dec. 17. After examing her, Dr. Hall told us that he was referring us to Cincinnati Children's Hospital. He said he believed she had something serously wrong with her that could be life threatening. He said he believed she had a 'syndrome.' When I asked him the name of the 'syndrome' he said she would need to be tested to determine the specific type. He told us children usually don't live long with this. He gave us more information but by the time he had gotten to this information I was trying so hard to stop crying, I couldn't hear all he was saying. I was trying to concentrate on his voice and the other info he was trying to give us, but it was so hard... I went there expecting him to tell us there was a genetic reason for her hearing loss and maybe help her mother and father accept the fact that she may very well have a hearing loss. I was not in any way expecting to hear what Dr. Hall and the genetics counselor had to tell us that day.
We went to see Dr. Leslie on Jan. 7th where a full body x-ray was taken and blood work was completed. Then there was the almost unbearable wait. We were told at this doctor visit what to expect. We were told that Evline most likely had Hurler Syndrome. We talked about the enzyme replacement therapy, and bone marrow transplant. Dr. Leslie recommended both. She seemed pretty certain and I knew from what research I had done that Evline exhibited the signs and symptoms of Hurlers. Yet until the results of the blood test were known, there was that glimmer of hope that everyone was wrong. I hated the waiting but then I dreaded hearing the results. Towards the end, I was calling Michelle, the genetics counselor, almost daily wanting to know if the results were in. Evline was put in the hospital for RSV on Wed. Jan. 21st. I received a call from home that someone from the children's hospital had called, so I called them back on my calling card from the hospital room on Fri. Jan. 23rd. According to the results Evline has none of the enzyme needed and she had, from what I understand, the worst form of MPS--Hurlers. I really appreciated Michele's patience with me because I called her every day. Even though I knew she would call when she knew something, it seemed to help me just knowing what was going on; what efforts were being made to find out the results.
Before going to Cincinnati, we had taken Evline to a cardiologist in Kingsport who told us that the ASD (small whole in her heart) had not changed but that her left ventricle wall had thickened. When we went to Cincinnatti, Dr Leslie told us her liver was enlarged. When the local pediatrician put her in the hospital, he told us her spleen is enlarged. We've had her back to the pediatrician since her hospital stay. Actually we've had her there almost weekly. Our last visit was on Tue. Feb. 10. He showed me her stomache and said he thought her liver was enlarged even further. He asked when she is supposed to begin her enzyme replacement therapy. I explained that she has to have some tests completed including a bronchoscopy for which she is scheduled for on Fri. Feb. 20. On Tue., Feb. 4, she saw the pulmonologist in Cincinnati and is now taking Zantac for reflux. It seems to be taking so long to get things started for her. Seems like every time she goes to the doctor there's something else wrong or something is worse. She stays so congested in her head. The local pediatrician said that-as well as she breathes now is probably the best she will be able to breathe until the enzyme replacement therapy (ERT) begins. We are trying so hard to keep her well so she can get the bronchoscopy done. This is an important test since she has so much trouble with her breathing. The 17th of Feb. will make two months since our visit with the geneticist in Corbin and the only thing that has happened thus far is we've found out for sure that she has Hurler Syndrome, she's been diagnosed with reflux, and an appointment has been made for the bronchoscopy. It is so hard to be patient. I worry so much about her and it seems that she stays on the verge of being sick.
On a more positive note, I would like to say that I appreciate everyones prayers, concerns, and support. I appreciate the families I work with for being so patient and understanding with me. As much as I have tried not to let this interfere with my job, it has. I'm lucky to work where I work and have the clients I have. They have given me prayer cloths and support as well as listened to me when I should be listening to them and give them support.

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