about CaringBridge  |  home page  |  view guestbook  |  view photos  |  journal history  |  donate to CaringBridge

Click here to go back to the main page.

Saterday, Febuary 6, 2010

Hi Everyone,
Sorry I have not updated this in soooo long.Happy New Year to all. I have been doing well....well minus my recent sinus infection that has turned into a little walking pnemonia, but it is starting to get better.



Friday, April 17
Hi Everyone,
Lately I have been inspired to take on a new project. I am not ready to tell everyone what it is yet, but I would like it if you would pray for me to make wise decisions on undertaking my new concept. Hopfully I will be ready to share with all of you my increadable idea soon. Thank you for your prayers and support. I will write again soon.





Sunday, March 15 5:50 PM CDT
Hi Guys,
I am doing well. I have just gotten over my 2nd round of the cold I have had for 5 weeks...Yuck! Anyways I am doing well now and in school. I have just been transferred to a new neurologist. Well that is from my children’s neurologist to an adult neurologist UCSF. We made sure that he is willing to work with my team back east. He wants to learn about krabbe and all the tests they do for my post transplant check-ups. He seem to be very willing to learn and very open with us regarding all things medical. He also is not afraid to tell us he doesn’t know. (Which as you all know can be hard to find in a doctor.) I will write more soon.

Wednessday, July 16

Hi Everyone,
We got home safely early monday morning with only a little plane delay. I wish symposium was longer, it always seems like there isn't enough time and it always leaves me wanting more time with everyone. I can't wait to see you all again next year. I'll write more later. Love y'all


Friday July 4th
Hi Guys,
I can't wait to see everyone in a few days. I am soo excited!!Oh yeah Happy Fourth of July!

Wednesday, May 7, 2008 1:24 PM
Hey Everyone,
I got back from my four year post transplant check up at Duke. All my testing came back amazing!! The skin oppenings were caused by too much cortizone in my body. So Dr. K took me off all my Hydrocortizone. One Less Med.!!Yea!! All my openings have finally closed up!!! I will be going to Symposuim, Dr. K is using me as an example on how well transplant can work. I am excited to get to see everyone again, I can't wait!!


Sunday, April 20
Hey guys,
I'm back at Duke all my testing is going well. I will write after I get home on Tuesday.

Thursday, May1

Hey Everyone,
I got back from my four year post transplant check up at Duke. All my testing came back amazing!! The skin oppenings were caused by too much cortizone in my body. So Dr. K took me off all my Hydrocortizone. One Less Med.!!Yea!! All my openings have finally closed up!!! I will be going to Symposuim, Dr. K is using me as an example on how well transplant can work. I am excited to get to see everyone again, I can't wait!!


Sunday, April 20
Hey guys,
I'm back at Duke all my testing is going well. I will write after I get home on Tuesday.



Thursday, March 27

Sorry the last few entries I have forgotten to change the date. This entree is from two weeks ago. Not much has changed 6 out of the 7 openings have started to heal. The last one will not heal and keeps breaking open and bleeding. It refuses to start healing. I go back to North Carrolina in two weeks, I leave on the 14th for a week. It will be my four year studies.


Hi Everyone,
I know I’m not very good at updating regularly and I apologize. So here is what’s going on with me. I about 4 weeks ago got the flu that’s going around. Along with an ear infection and some kind of infection that dropped into my lungs. I got over that 2 and a half weeks ago. Then the stretch marks I have on my torso started to break open and bleed, they were very painful. I ended up with tiny slits and large deep ones. Right now I have 8 good size bruises on my right arm that are very painful and my left arm had a lot of pain how my right arm started the other day. They are starting as very painful spots and then in about 24 hrs or less the bruises come to the surface and remain very painful. I also have a very painful spot on my left collar bone, which is very concerning to me. I'm uses to having the bruising on my extremities but not on my torso. I really don't want to get any kind of blood clot that could make its way to my brain or my heart. The tiny slits in my stretch marks on my torso have closed and look better. When I get in any water, even cool water they turn anywhere from pink to bright red for 15- 30 min. then calm back down. I also have 5 deep tears in my stretch marks that are not healing and keep bleeding. They'll stop but if I move at all it tears them open again and they bleed. My mom just checked me out and she thinks the one might have puss in it. All of my stretch marks on my torso are still very pain full. I have 3 more days of the acyclovir and I am taking Advil every 4 hrs. I stopped the hydrocortisone cream because it was drying my skin out too much and causing more skin to break open. I am using lotion and on the non effected, such as my legs, sween cream which is very effective in keeping my sin hydrated. I am going in to see my doctor tomorrow she and Dr. K are stumped on what could be causing this, they have never seen anything like it and are guessing on what it might possibly be and how to treat it. Right now they are treating it like shingles but I’m guessing that will change when I go in tomorrow, because it is not having any effect on what is going on. I am still doing school and keeping up because I was smart and took my classes online this semester. I decided to do it that way because it seems something always comes up and I end up falling behind or having to drop the class. So this semester I’m not at all behind and can keep up with all my work no matter what is going on. I will update again soon… Jhyrvé







Through it all

Add to My Profile | More Videos




What is Krabbe Disease?
Globoid Cell Leukodystrophy, more commonly known as Krabbe (crab-a) Disease, is an inherited neurodegenerative lysosomal enzyme disorder affecting the central and peripheral nervous systems. Children who inherit the disorder lack an important enzyme (GALC) that is needed for the production of normal myelin (white matter) in the central and peripheral nervous systems. Myelin is the protective covering of the nerve cells and acts like insulation surrounding an electric wire. When the enzyme GALC is deficient it produces toxic substances in the brain, causing myelin loss, change to brain cells, and neurological damage.


The Cause Behind Krabbe Disease

Krabbe disease is inherited in an autosomal recessive manner. If both parents carry a disease-causing mutation in the GALC gene there is a 25 percent chance of having a Krabbe affected child with each conception, a 25 percent chance that each offspring will be a carrier and a 50 percent chance of having a child who does not carry a disease causing mutation. This genetic disease is found in all ethnic groups. The carrier rate in the general population is estimated to be 1 in 125. Krabbe Disease occurs in about 1 in 100,000 births in the United States. Diagnosis can easily be made by testing the white cells from a blood sample for GALC activity.

Friday, September 7, 2007 1:21 PM CDT

Hi everyone I thought it was about time I updated this. So here goes… Two Tuesdays ago I had my hip give out on me and I ended up bruising a lot. I had talked to Dr. Escolar about this and she wanted me to get an MRI done. We got an appointment for that Thursday. So I went around doing everything as I normally would but with significantly more pain in my hip than the normal minor amount I usually have. So Thursday comes around and I go in, in the morning to have the MRI of my hip done. Well I get through the first cycle with only minor twitching of my leg. But as the second cycle started my muscles in my leg start to spasm and they could not complete the MRI. When the Tec. came in and asked if I had any metal anywhere around my hip because something did not look right but I had been moving too much for him to tell exactly what it was. I told him that I had nothing metal on. We rescheduled for that evening. When we went in that evening I had taken 3mg of Adivan (and yes I walked in and out of there by myself...Lol), so the MRI went fine. The next morning my pediatrician called and left a message that said that my MRI was extremely irregular and to call her back as soon as possible. I had stayed home from school that day because I did not feel so great. My mom had talked to Dr. K. that morning and she told her briefly that I had fractured my hip and I was not to put any pressure on it. Dr. K and Dr. Escolar had a meeting on how to deal with my fractured hip. They finished and called my mom and told her to take me to an orthopedic surgeon and I had a possibility of needing hip surgery. The insurance gave us a name of an orthopedic surgeon that we could go see. We made an appointment with him for yesterday. So yesterday we went to see him and he came in and talked with us and looked at the MRI’s we brought with us. He showed us where my hip had fractured and also showed us the gray area around where the fracture was. He explained to us that on the ball of the hip where it had fractured and the grayish area around it was dead and that the vascular system was not feeding that area and hadn’t fed it probably for quite some time. He went on to tell us that it was probably from all the steroids that I had taken through transplant. After that he wanted to take some X-ray’s to see exactly what the bone looked like as a whole. We got to see those too. They looked like someone had taken a bite out of the ball of my hip. We all went back in the exam room and he told me I need a hip replacement, and he was going to refer me to his mentor at Stanford. We now have an appointment to see him on the 26th of this month. That has been what’s happening in my life fight now. I’ll write more later on.

Sunday, August 5, 2007 11:53 PM CDT

Hey guys nothing really new since symposium. I had a great time there, and no problems coming home. This week I'm off to Idaho for a week to visit my grandma. Then I get back and two days later I start a new semester.

This is one of my favorite poems:

One night a man had a dream.
He dreamed he was walking along the beach with the Lord.
Across the sky flashed scenes from his life.
For each scene, he noticed two sets of footprints in the sand;
one belonging to him, and the other to the Lord.
When the last scene of his life flashed before him, he looked back at the footprints in the sand.
He noticed that many times along the path of his life
there was only one set of footprints.
He also noticed that it happened at the very lowest and saddest times in his life.
This really bothered him and he questioned the Lord about it.
"Lord, you said that once I decided to follow you, you'd walk with me all the way.
But I have noticed that during the most troublesome times in my life,
there is only one set of footprints.
I don't understand why when I needed you most you would leave me."
The Lord replied, "My precious, precious child, I love you and I would never leave you.
During your times of trial and suffering, when you see only one set of footprints, it was then that I carried you.

Monday, March 26, 2007 6:24 PM CDT

Well I go back for my three year check up (wow I just said 3 years!!) in one week. I get my port removed on week from thursday. Yea!!!!!!!!! I can't wait! If you can't tell I'm just a Little Excited!!yippy!!Anyways I am looking forward to seeing all my doctors and nurses again. I am hopping for great test results.

When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When cares are pressing you down a bit,
Rest if you must, but don't you quit.

Life is queer with its twists and turns,
As every one of us sometimes learns.
And many a fellow turns about,
When he might have won, had he stuck it out.
Don't give up, though the pace seems slow,
You may succeed with another blow.

Often the goal is nearer than
It seems to a faint and faltering man;
Often the struggler has given up,
When he might have captured the victor's cup;
And he learned too late when the night came down,
How close he was to the golden crown.

Success is failure turned inside out,
The silver tint of the clouds of doubt.
And you never can tell how close you are,
It may be near when it seems afar;
So stick to the fight when you're hardest hit,
It's when things seem worst that you mustn't quit.

Sunday, January 14, 2007 11:37 AM CST

Hi everyone,
Well Dr. K took me totally off my IVIG!!! yeah! Any ways things here are going well. My chickenpox/shingles are gone and all their symptoms. I start school again on tuesday. My family and I just came back from LA. My cousin was married last weekend down there. It was great to see all of them. the ceremony was beautiful. Other than thatnot much else is going on. I am looking forward to seeing everyone at symposium. I also hope to see good results on my 3 year tests in April. Wow i just wrote three years !!! It dosen't seem that long!! Got too run. . .

I refuse to be discouraged,
to be sad, or to cry:
I refuse to be down hearted,
and here's the reason why.....

I have a God who's mighty!
who's sovereign and supreme;
I have a God who loves me,
and I am on His team.

He is all wise and powerful,
Jesus is His name;
though everything is changeable,
My God remains the same.

My God knows all that's happening;
beginning to end.
His presence in my comfort,
He is my dearest friend.

When sickness comes to weaken me,
to bring my head down low,
I call upon my mighty God;
into His arms I go.

When circumstances threaten
to rob me from my peace;
He draws me close unto His breast,
where all my strivings cease.

And when my heart melts within me,
and weakness takes control;
He gathers me into His arms,
He soothes my heart and soul.

The great "I am" is with me,
my life is in His hand,
the "Son of the Lord" is my hope,
its's in His strength I stand.

I refuse to be defeated,
my eyes are on my God;
He has promised to be with me,
as through the life I trod.

I'm looking past all my circumstances,
to heaven's throne above;
my prayers have reached to heart of God,
I'm resting in His love.

I give God thanks in everything,
my eyes are on His face;
the battle's His, the victory is mine;
He'll help me win the race

Tuesday, December 19, 2006 0:48 AM CST

Hi everyone, Happy Holidays!!I ended up not getting off my IVIG,although I only have it every other month now though. I also came off my acyclovir which was a good and bad thing. It was good because it's one less pill to take. It wasn't so good getting the chicken pox it was surpressing. Well they actually were some where between a chicken pox and a shingle. They are going away. I wish the pain would go away faster,but I know it will eventually. I also had my wonderful spontaneous sub dermal bleeding. I think it will continue when ever my body is under stress. I'm just special that way. (sometimes I wish I wasn't) In time all things will pass. My body just likes to take it's own sweet time in doing thing. Other than that things arround here are pretty good. Luke is visiting his best friend in Flordia for Christmas. My mom and I are heading down south to visit my great-aunt for Christmas. My cousins will be there too.More to come later so for now Happy Holidays

Wednesday, October 25, 2006 11:31 PM CDT

Hy everyone got back from Duke. We had a great, short visit. We got to see Kelly and Michelle,Mckinsey,and Ashley while we were back. I had great news from the doctors. I hopefully will get off my monthly infusion of IVIG and three oral meddications. We are all back at home am I am attending the local j.c. taking an English and a Weight Lifting class (in the weight lifting class I work with some of handicapped students. My mom is doing great. She and I are cooking this week for my brothers choir dinner. We are cooking to feed 500 ( this is not a typo, five hundred I'm serious. . . YIKES!). My brother is playing Tevya from Fiddler on the Roof. ( choir dinner = food + show (Fiddler on the Roof)). Also I hope to see everyone at the Symposium in 2007.! Well it's getting late and I have class first thing in the morning. . . will write more later.

Wednesday, September 20, 2006 12:54 AM CDT

Hey guys I'm doing great love school and I'm getting ready to go back to Duke on the 8th of Oct. for my 2& 1/2 year checkup. Here is a poem I love.
Standing for what you believe in,
Regardless of the odds against you,
and the pressure that tears at your resistance,
... means courage.
Keeping a smile on your face,
When inside you feel like dying,
For the sake of supporting others,
... means strength.

Stopping at nothing,
And doing what's in your heart,
You know is right,
... means determination.

Doing more than is expected,
To make another's life a little more bearable,
Without uttering a single complaint,
... means compassion.

Helping a friend in need,
No matter the time or effort,
To the best of your ability,
... means loyalty.

Giving more than you have,
And expecting nothing,
But nothing in return,
... means selflessness.

Holding your head high,
And being the best you know you can be
When life seems to fall apart at your feet,
Facing each difficulty with the confidence

That time will bring you better tomorrows,
And never giving up,
... means confidence.

Sunday, August 28, 2005 11:18 PM CDT

All is well here in California. Jhyrve is doing fine. She is know 18 years old. Happy Birthday to my girl!

It has been a while.... so here goes. Her one year studies went great! We were in North Carolina at the end of April. We did get to go to the Rainbow Walk. It was the first time everyone got to see Jhyrve walk across the field. It was a beautiful day.

Thanks to the Hunters Hope gathering.We saw Dr.K and Dr. Escolar and met some of the other movers and shakers making a difference with Krabbe. Met alot new friends and got to see some of my transplant moms. (great people!)We love you all.

Jhyrve and I started going to college together, but not in the same class. It's a little stressful on Jhyrve, but she is doing great!She is tired of taking her meds and we struggle a bit. In the long and short of it she is really doing good.

Thank you all for your support, Much Love Karen

Wednesday, May 11, 2005 2:28 PM CDT

Today is our first day back from Duke and Jhyrves one year studies. Dr.K is so pleased with her. Jhyrve last Tuesday walked the hall with Dr.K. for the first time. Jhyrve started walking alone (outside) around three weeks ago. What an improvement. She is regaining her life once again. Jhyrve has had some of her questions answered to her liking and some of the answers were still not answered the way that Jhyrve wanted the doctors to answer them. But she will have to work harder so all the answers can be yes..
Jhyrves big question to both Dr.K and Dr. Escolar was...."Can I drive NOW?" the answer to this question is not this year. Dr. Escolar will test her reflexs next year and give her a new answer then... probley yes. Dr. Escolar thinks by next year Jhyrve should be back to her normal self once again. Good things to look ahead too...

Jhyrve got the "Big Go ahead" to attend a College starting in August. Our local DVC jr. college. She is so looking forward to starting something new. Jhyrve has had her schedule out and is already trying to figure out what classes to take. For now Jhyrve is planning to become a physical therapist (Peds) I am so happy. She will have such a good insight into what the kids are going through. No, I mean No excuses will fly by her and she her self has tried them all. Good luck to those kids. But I know Jhyrve has a very tender side for kids and will be good with and for them..

It was very nice to see all our favorite nurses back at our second home. DUKE We miss you all! We will return in October 05'. A rather nice time to visit North Carolina. We will get to enjoy the fall colors for a few days. The trip will be a short one. Three days, so we will be moving fast, but will come around to see all our (family) friends. For you now we love you all!

Jhyrve and I went to the Rainbow Walk last weekend. It was wonderful! The weather was beautiful! Met so many new families. Jhyrve walked one lap durnig the walk. Go Jhyrve Go! The staff worked so hard to make it enjoyable for all the kids and there families. How big your hearts are, but we did know that. Keep up the good work! At the walk our little friend was there, Jackson White. Jackson your smile is so big and contagious. Looking good. Hoping to see you home soon.. we will keep our eyes peeled. Until then Jackson we keep you in prayer.

Our trip home was long. We made it in good time. It does make for one long day. We are so thankful that we our so blessed by God.


Jhyrves best friend Tori her dad, Allen, has designed a pin to help raise money for Jhyrve. It is in a heart shape and on the inside it is pink and purple ( Jhyrves farvorite colors). Really cute! If you would like one you can send a email to: Jhyrvepins@Yahho.com

Tuesday, March 22, 2005 10:34 AM CST

Hello, Hello!

First I would like to say thank you all for your patients with me. It has been so much! As a mom dealing with a teenager and transplant, (NO one should have this combo...) it is hard to do one, but both at one time. WOW I do know there are alot of us out there. So I do want to say, stay encouraged, it's worth IT! God has a plan. Jhyrve was and is my wounderful gift from Him! I am truly blessed by God and Jhyrve.

As we have sailed into the New Year things have been very good. Three weeks ago Jhyrve caught a cold. It took her body by surprise.. and we ended up at Childrens Hospital in Oakland for four days. We are hoping never to enter there doors again. We had a few challenges with the doctor and a few of the nurses. We entered the hospital on Tuesday and left on friday. Jhyrve did not want to spend the weekend there, neighter did I want her there any longer. We came home with Dr.K's blessings and allowed Jhyrve to find her base line again. After a few days she was looking like her old spunky self again. Who-YA! Jhyrves numbers are great! moving right up. Her recovery from the hospital stay was the quickest I've ever seen her numbers jump back to normal and then go beyond! Very encouraged!!!

She is able to write very well again. It has been about 18 mos. that she has had problems with her handwriting. So it is very nice to see things start to turn around and return to her. Her walking is improving. We bought her a cane last month. So between the wheelchair, walls and the cane she is making great strides!!

Last week her two girlfriends, Kathrine and Caroline, came over to exercise with her. They did a little too much. They had so much fun. It great to see them together. Lots of laughs and gigles...

Tomrrow, March 23, is our one year anniversary. Jhyrve got her central line put in and we enter 5200. Really room 5211. WOW, it has goes by so slowly, but also so quickly. I miss all my mom friends from 5200 and the nurses! I pray for you all! I feel such sadness and also such joy, such thankfulness. What a Year it has been! I praise God for her making it to this point and I do know she will have a very full live because of what He has done for us...

We, well mostly mom, is still trying to get moved into the house. It is coming along. Not very fast, but I am getting there. In Luke's room, his stickers have mostly fallen off the wall so he and I are trying to get the wall cleaned off so we can paint it blue again. Jhyrves room is very much the same, as is the rest of the house. It's all I can do to keep up with the house and kids and bills and life... just like the rest of the world.. we just keep on going..

Jhyrve is having a bit of trouble with the rain still. It really bothers her ablity to sleep and just makes her feel bad in general. We have had sooo much rain this year. We both are sick of the rain and would love to see a lot of sunshine, weeks of it would be nice. Jackson as you are returing soon bring the sun with you OK?..

A question of Jhyrve and a place to make a donation. We use COTA. On the bottom of this page is there email and place to donate. Thank you very much for asking, we do need the help and we do Thank all of you continue to support us.

May God bless all of our children. Keeping them safe.....

Karen, Jhyrve and Lucas.

Wednesday, January 12, 2005 9:51 PM CST

Well HELLO everyone!!!

Thank you all for your warm and thoughtful greetings. We are in the New House and it is such a blessing! We could have never in a Million years thought this past year would end up with us on TV, A New House and a jet ride home. WOW! WOWIE! WOW! Lucas says we live in a magazine. I think he is close. We are told by ABC/Lock & Key Productions that we will be on Sunday 8pm Jan.23. So you can all come and see our new home.

We were kept at the Hilton until we saw the house.When we got to the house Jhyrves eyes did not leave her friends and teachers. ABC let the Chior sing to her as we arrived. We all cried and cried.It was so nice to see our friends. On the other side of the bus was our family. My mom and brother Tom. My cousin Sue and Greg and there girls Charlissa and Chelynn. My Aunt Joan and Scott my other cousin. Paul the kids dad and my sister-in-laws Sue and Terry. What support! it was great! Also standing in the family booth was Steve and Lize Wallace. They submitted us for the make over. They also did so much for us. They were the ones keeping us a float$. We are so blessed to have so many who care and love us.

Last Friday Steve Wallace called me up and said meet me at the Car place. I told him I had been so busy that I hadn't had time to shower and looked like 10 miles of bad road. He told me It didn't matter, that we were just looking. He did not know what a Santa Fe was and wanted to see one. So off we meet. Well Steve is so good. By the time I got there he had a Santa Fe already lined up for us to have. My car had died just as we left over a year ago. (The icing of the cake.) It's the same car we rented while we were in NC. This is the best car for Jhyrve. It keeps her independent. She can get in and out on her own and the wheel chair is easy for me to get in and out of the back of the car. It saves my back.

Jhyrve and I are getting to know the nurses at Oakland Childerns Hospital (but for all our favorites at Duke) You all have our hearts and our Love!! We both miss you all!
I will be booking a flight tomrrow, so Duke here we come! Get our bed ready! Set up those Test,because we will be flying through them all and heading home ASAP.

Jhyrve is doing very well. She is less depended on the wheel chair and using the crutches more and more. Her legs are getting stronger everyday. It's great to have her spirits up and her friends over on the weekends. Most of her friends got there flu shots. They are worried about keeping her safe. They are great friends. Jhyrves best friend Tori is a God send. They care so much for one another. It's so very good to have them together again.

God has blessed us all. Thank you all for your prayers, without them I don't know where we would be?? I will be tring to write you all. Things are so busy still. But I will slowly get there. One day at a time, It has taken me a long time to understand this, but I am learning........

Wednesday, December 8, 2004 11:04 PM CST

Jhyrves progress has been steady. On the third of November she had a port put in her left chest wall. It looks great and she has healed nicely. The nurses tell me it's very easy to access. And Jyhrve says it's not so bad.

THE BIG NEWS FLASH:

Well today Ty from Extreme Make Over: Home Edition call on us at about 11am this morning. We are having our home made over so we can go home!!!! We are all in shock!!!! and loving every minute of it. A new home! A mold free zone for Jhyrve to live in. WOW!!!!!Thanks to ABC and Extreme Home we can go home.

It's been a tough couple of weeks waiting to find out if we were chosen. And now the wait is over and on December 14th we will be flown home to a new house. I still can't believe that it is happening to us. Jhyrve has hardly slept in two nights. So tonight the we will sleep alot easier. A huge weight has been lifted off our shoulders. And the question of what to do about the house is over!

We have been away from home nine months and one week. Home is just a breath away.

Sunday, October 3, 2004 2:49 PM CDT

Sorry that it has taken me so long to get back to writing. Here’s what’s been going on all summer.

Once we left the hospital it got a little crazy with all the medicines. Trying to keep everything straight and on time. And trust me she left with a lot of meds. Jhyrvé is still on many pill form medicines and three respiratory medicines, three times a day. We have a lot to do in a day!

In June, Jhyrvé had fallen. Her right knee took the blow. (Her right side is the Krabbe-effected side) Jhyrvé’s right knee had a bruise that was 13 in. long by 6 in. wide. It was purple! It looked fake because it had so much blood under the skin. Within a week, new areas on her right leg started to spontaneously bleed. Then it was her left leg’s turn. Jhyrvé had a matching pair of legs. Black and blue!! She looked like I had beaten her with a baseball bat all over legs. We kidded about it a lot. Jhyrvé said it was very painful. Her body has taken back all the escaped blood, but you can still see the skin is discolored. It too will go away soon. Last weekend both of her legs did the spontaneous bleeding again. Not as bad. It hurts and looks like I've been at her with a small stick. My poor child.

Her walking began to deteriorate because of the fall in June and because of the amount of steroids she has been taking. So it's been an up hill climb to get her back into shape. She works out with her PT, Lisa, twice a week and OT, Karen, twice a week. It keeps us at the hospital 4 out of 5 days a week. Jhyrvé is moving around better. She's been using a wheelchair for long distance and I help her with short hops. This past week she got a new pair of crutches and as soon as she got them she had a small fall. I was able to catch her before she hit her bottom on the cement sidewalk out in front of the apartment. She twisted her ankle a bit. So her ankle is still a little swollen, hurting, and sore, but looking much better.

Her spirits are good! From time to time she and I do get to get out. Dr. Kurtzberg gave Jhyrvé limited places to go. Last week her limits were expanded. Jhyrvé is busy making plans. She’s got places to go and things to see.

In July we watched as Jhyrvé turned 17 years old. This was not a good birthday. Paul, Lucas, Grandma Nan and Aunt Joan were here. We all did our best to celebrate for and with her.

Yesterday was Kelly’s (from Hunter's Hope) birthday. It gave us a chance to go visit and celebrate her birthday. Yeah Kelly.

This coming week will be Jhyrvé’s six month studies. As of October 1st, she is six months out!!!!!! Yeah!!! And her counts are looking so very good. She is so much bigger than most of the kids we see here. It has taken her bone marrow longer to grow. (We still try from time to time to do the "cell dance" on our own… It's working!!) We will be waiting to see what the studies tell us about the inside of Jhyrvé....

Things here are going along and Jhyrvé and I are counting the days until my mom, Nan, arrives. That will be Oct.25. (22 days, the count down is on!)

I want to say, thank you to all who have been writing to us here on Caring Bridge, for all your prayers and strengthening words! For we see God’s hand in our everyday life. He is so faithful! He is our strength! And you all have touched our lives and I am truly honored that you are so faithful with your prayers for us both. THANK YOU ALL!!!

And please remember 5200 and all of the kids up there. Every room is filled right now and needs all of our prayers, everyday!

Sunday, May 9, 2004 6:48 AM CDT

Jhyrve went out on her first hour pass last Thursday, April 29. We got to go to the famous fish tank over in clinic. Kakky, our best buddy, help us. We left the floor, here at 5200, at 8p.m. or so. It was dark out. I know Jhyrve was hoping to see the sun, but no luck.

On Friday however we did watch the sun set together over at the fish tank. It was a beautiful evening and the sky was so pink and turned into a red delight. As the sky darken and drew black we decieded to head back to the floor (5200) and walk a few laps before heading in for the night. She prefures to walk at 5200, because she dose not need to wear her mask and can breathe easyier. We've tried to leave the floor everyday.

Jhyrve needs me, be back soon.....

Thursday, April 29, 2004 9:55 PM CDT

Well, last night Jhyrve slept 5 hours! YEAH!! She has become her old self again. She spent the day in the hallway with some of her nurses. Today started the Rainbow walk weekend. (Rainbow walk is the yearly fundraiser here) They released balloons for the kids and then it was time to play! Jane and Linsey, form family support, came up to play BINGO! Everyone of the kids were in the hallway having so much fun..It was great fun for all. The kids were smiling from ear to ear. Jhyrve helped Annabelle. Annabelle is 3 years old and a beautiful little girl.

So as we go off to sleep tonight (12:30am), prayers have been answered for me. Jhyrve is sleeping. She took a nap that lasted 3 hours today. That in it's self was a blessing. The more sleep she can get the better off she wil be. Healing take place when we sleep, so sleep Jhyrve sleep. Tonight we will get another good night of sleep whooray!!!!!!!!

The doctors are changing Jhyrve's medicians to pill form, so we can go out to the apartment. It will still be awhile before we go home -home to California. But soon, very soon we will be flying home- home... and that will be very nice.

Tuesday, April 27, 2004 10:44 PM CDT

Well I was hoping for a better night last night. But....

Got Jhyrve ready for bed and I hopped in my bed only to hear a loud crack of Jhyrve's back. Doctor Jim was called into our room at 12am. It appears that she has pulled a couple of her muscles in her back. She only slept three hours last night because her back pain is so bad!!

Tonight it has been worse after the doctors made there rounds this afternoon. They needed to check out her back. She now says it worse after the doctors checked her out. I put on some Ben Gay, which should make her back warm up,but not so. She says it is freezing her and why did I do that. It seems as though things work backwards for Jhyrve. If something should get warm you get cold and if you think it would make a person cold, well she gets hot.

A couple of us mom's were in the kitchen tonight and one of them said, we here on 5200 live 30 minutes at a time. That is very true. You hope that the next 30 minutes will be restful, peaceful, free of pain for you child. You find yourself praying alot. Asking God, not only for your child, but all 16 rooms to sleep restfully...That these kids (even the bigger kids -teenagers) can get a good nights sleep, pain free. That's not always the case.

This was the first day and again tonght that Jhyrve has cried and asked if we could just go home. To go home and forget about what is happening to her. It was very hard not to cry in front of her. I keep reminding myself I need to be strong for her. And I believe that Jesus will make sure I will be able to do the job I need to do for Jhyrve right now. He is my strength in times of trouble... and she and I both feel we are in trouble.. but He is here on this floor, watching over us all.

Pray that Jhyrve will get some sleep tonight. She is having trouble sleeping ever sence we started this proscess. She really needs to get some restful sleep so she can alow her body to heal. Thank you all for your faithful prays. We all here need them, even us moms..

Monday, April 26, 2004 8:09 PM CDT

Well we are recovering from last week. Jhyrve had a somewhat crazy week. On Tuesday they started giving Jhyrve Methadone, getting her ready to be discharged. They thought the Methadone would be a good pain killer for the outside life. But on the second day of using Methadone she began seeing her brother out of the corrner of her eye. The problem was Lucas was back home in California. Jhyrve also started hearing her girlfriends talking to her and at times she thought she saw them in our room. But the thing that scared me the most was when she was in the bathroom she called to me in a soft voice and said "Mom the too tiggers are talking about me. I know that they are my slippers, but they are discussing me with each other." I was sitting on my little bed in the corner. The tigger slippers were two feet in front of me. Yes they were facing each other, but they sure weren't talking. At least I couldn't hear them.

She also became obsessed with drinking, eating and walking her laps in the hallway. At this time she was closing her eyes for two minutes and thing she was asleep for hours. No matter what I said she would not have any recall about anything. I thought I was loosing my mind by Firday. We had not slept much is days. I truly thought I was going to go crazy. I did talk with the nurses first and then the doctors. They put her on half a dose on Thursday and completely off on Firday. She was acting herself by friday night. Jhyrve slept most of Saturday and so did I. WOW!!! what a week.

She is having a little stomach problems. The doctors are trying to settle her tummy upset. Our check out day is set for May 7th. If all goes well...

Tuesday, April 20, 2004 9:17 PM CDT

Hello,

I will start with a little (recent) history. In early January I witnessed Jhyrvé eating with her left hand. She is normally right handed. I asked to see her right hand. She couldn't keep it from shaking. She told me she was hiding it from everyone. I asked her “how?” She said she would sit on it or keep it in her coat pocket. I felt awful about what I was hearing, so I called her doctor the next day. After a few visits to Dr. Brown, our neurologist, we entered Children’s Hospital in Oakland on February 10th for testing.

We talked a lot about Jhyrvé and about family illness. Our niece, Haley, died from Krabbé, which caught our neurologist’s attention, since she had never heard of the disease. Jhyrvé was put through a battery of tests which were all coming back fine. But there was something else going on. So Dr. Brown got on the Internet to see if she could find out what Krabbé disease was and what it did to the body. Unknown to Paul and I, she sent off blood to Dr. Wenger in Philadelphia for Krabbé testing.

We left the hospital and went home to wait. On February 18th, Dr. Brown called us in for a meeting to let us know what all of the tests showed. She told us that Jhyrvé had a rare, slowly-progressing form of Krabbé.

As I listened to what was being said, I couldn't believe it. But I knew we had to talk to Paul’s brother Greg. Krabbé disease took the life of Greg’s daughter Haley when she was just 21 months old. We called Greg, and his first words were that we needed to act yesterday! We asked who would know the most about this disease. Greg gave us Dr. Kurtzberg’s phone number. I called her office the next day at 9am and talked with Kelly the receptionist, who told me that Dr.Kurtzberg may call me by that evening. I was amazed when she called me back in 20 minutes and spent one hour on the phone with me. She let me know that Jhyrvé indeed needed a cord blood transplant and explained everything. I was so thankful. June Allison called twenty minutes later, introduced herself, and said that they had a team ready to get us through this transplant. The rest is history.

We flew from Oakland, California to Duke University in North Carolina on March 2nd. Jhyrvé did two and a half weeks of testing. She had her central line catheter surgically placed on March 22 and was admitted to the hospital. At four o’clock we went up to her new room on the PBMT unit on the 5th floor, also known as 5200. We occupy room 5211. We are known as Cell Mates. The room is just that small.

On March 23rd, Jhyrvé received her first chemo, Busulfan. She took this for 4 days. It went OK. On March 27th she received her second chemo, Cytoxan. She also received Cytoxan for 4 days, but on the 3rd day of Cytoxan she started a drug called ATG. Jhyrvé had a very hard time with this combination. In the morning she got Cytoxan and then by 3pm came the ATG. The ATG brought on a fever of 103.2° within the first 20 minutes. The fever broke in 2 hours. She slept for 2 hours… very deep sleep. Then the fever came back at 11pm. She was at 104.7° and stayed there until 7am. Along with the fever, she had hives. They were large and white. The hives even moved around a little, and what wasn’t white was red. It was a long, hard night. None of us slept; not Jhyrvé, Jill, her nurse, nor myself. They weighed Jhyrvé and found that she had gained 10 lbs. over night. By noon, she was feeling better. She even ate lunch and looked great!

Day two brought about the same. Her temperature was 103.4° and she was throwing up. While the red rash remained, the white, moving hives were gone. At 2 am she received her first 2 bags of red blood cells. Her fever broke around 4 am. No more Cytoxan. On day -1, also known as “the day of rest”, she got the ATG without the chemo and she did great… no fever, no rash. She slept a little. It was her last day of ATG. We were both very tired. That night she received her first bag of Platelets.

April 1, Transplant Day had arrived! Jhyrvé was very sleepy that morning. Her stomach was starting to get upset, so they gave her something to settle it. The side effect was that it would make her sleep. That was good. But it was now noon and time for transplant. They pre-medicated her with 50mg of Benadryl, so even if we wanted her to wake up, there was no way she was going too! We tried, but no luck. We did take pictures. Paul and I were very excited. Her Cord Blood came from a New York boy. Geneise, Jhyrvé’s nurse for the day, started the cord blood (stem cell) infusion. It took about an hour and went without a hitch. Her blood pressure stayed great, no fever. Geneise said it was the smoothest transplants that week. We’ve now adopted the PBMT unit’s mantra… “Grow Cells, Grow!”.

more to come...


Karen, Paul and Jhyrvé

Friday, April 9, 2004 11:00 AM EDT

We set up this site weeks ago and hadn't visited since. We were so pleasantly surprised to find so many warm wished posted here. We really appreciate your loving thoughts and will start posting updates this weekend.

Click here to go back to the main page.

----End of History----