History

Journal History

Wednesday, March 3, 2004 10:15 PM CST

Hi again to everyone.Sorry it has been a while since I have updated.Well GOD is really working alot of miricles is Cj's life.He is really doing good.He is going everywhere in his walker now .He just started really going everywhere just in the last few day's.We have to make sure all of the end tables are cleared off,because if we don't clear them Cj will.He got his hearing aids a couple of weeks ago.They really seem to make a difference.His speech therapist thinks it will improve his talking alot.So that is what were praying for.It seems like there are parts of the old CJ coming back.He loves going to school,he go's three days a week now.And he gets all of his therapy's there.
And yes they spoil him rotten.It's not like he is'nt spoiled enough.God has really used CJ to change a bunch of peoples lives like his dad and mine to start with.
God is so Great.Well I guess I better be going got a busy day tomorrow.
Thak you all for still checking on CJ. It really means alot!!!

xoxoxoxo
Mandy

Saturday, October 11, 2003 12:18 AM CDT

Well HI everyone,
CJ got a walker and a activities chair this past Wednesday,They told us that it would take a while for him to
get started walking in it.They said the theropist would have to work with him.But you know me ,being mommy
knows best ,I put him in it Wednesday night and he took off backwards.I was so thrilled.I knew God would help
CJ.Then I put him back in it Thursday night and he started going forward a little bit.It was awsome.
You know there had been days that I wondered if I would ever see him walk again.I know he is haveing to use the walker but hey I will accept that.This just proves to me that with some more theropy that he will be able to walk
By his self again some day.He amazes me more and more everyday.With all he is going threw he never seems to
let it bother him.He is always so happy.He has always been that way.He is agreat child.There are days that I miss the old CJ just him being in to everything and him Saying I LOVE YOU MOMMY.But I have faith that one of these days i will hear it again.But if i don't at lest I got the chance to hear it before.And i still hear his little voice telling me that he loves me.And I know he does.I can see it in his little eyes.
I have days to where I don't know which way to go,and just feel like I have the weight of the world on my sholders.
But I have to remember who is in charge.And then I realize that everything will be alright,wether it turns out my way or GODS way.I just remember that CJ is special and God would not have gave Jamie and I a child like CJ if he did'nt think we could handle it.God always seem to know when i am down because he always picks me back up.
I just wanted to let everyone know that no matter what happens God is always there to pick you up.
XOXOXOX
Mandy,Jamie&CJ

Saturday, September 6, 2003 7:40 PM CDT

Well I guess you are getting tired of seeing the same old update,so I am going to give you a new update.
Cj just got out of the hospital again.But this time it was'nt quite as serious.Cj started running a fever and it
got a little high fast.They finally decided that it was a viral infection.So they started treating it and he was
still running fevers,so they drew more cultures.This time the cultures showed a Staph Infection.
So they keep him a little longer and sent him home with a IV in his hand.And he was getting Vancomicine
Threw the IV.They are haveing a hard time getting blood from him.His vains like to roll and then when they get a
a vain it don't want to give no blood.While he was in the hospital and kept running fevers his platlets
droped from 360thousand to 70 thousand so they gave him two doses of I.V.I.G so that got them started back to growing.He starts a new program October 1.It's called Medically fragile childrens place.
They give all theropies and theres a doctor there that will follow CJ they have like a preschool program.
They have respice.Theres alot of neat things about this place.
He stll gets theropies at home right now.And he still go's to Pedeactric Hemotology,oncology.
We hate to leave his doctors there they have been so good to CJ and us.They act like we are family.
We really do miss seeing all of our friend that we meet threw our whole B.M.T adventure.
I hope all is well with all of you.It just seems like CJ went threw transplant with not to many problems
And after is when he is having all of his problems.But GOD is awsome.He has always had a hand on Cj
and i feel he always will.God has worked alot of MIRICLES in Cj's LIFE.Theres not many people that
passes away 3 times once for 15 minutes and brings him back.GOD has a purpose for CJ.
GOD is so good to us.Without him CJ would not be here now.I now that everything that has happened
with CJ from day one,has got Jamie and I where we needed to be.We are back in church,we are starting tomorrew
to teach 5 th grade Sunday school.We have meet alot of great friends threw church.Our lives just seem
so diffrent now.Cj may have a long way to go but I know that with GOD by his side CJ will get better.
Well i guess i have went on a little long sorry.Well when we have some more updates I will let you know.
Sending LOTS OF HUGS AND KISSES FROM SC
JAMIE,MANDY&CJ

Sunday, June 8, 2003 8:12 AM CDT

Hi again to everyone ,We stay pretty busy around here.
Cj is doing alot better we can see things now that reminds us of the old CJ.CJ is still wanting to
walk,and before long I beleave he will be.I took him a week ago to get fitted for leg braces.
So we should be getting them in a week or so.And when he gets them we pray it will help him to
start walking again.Cj is learning new words slowly but surely.He says mama,dada,papa,nana,
ball,wow .He still gets speech,OT,and PT,twice a week.He gets speech on Mondays,
OT,PT one Tuesdays and thursdays.
They come to our house and give him therapy now.
Well I guess I will go it's time to get ready for church.Im going to try to do better with updates.
XOXOXOX
Mandy,Jamie&CJ

Monday, March 31, 2003 9:24 AM CST

Hello to everyone,I know it has been a while since i have wrote.It has been really wierd around here lately.
Well we found out that when Cjs heart had stoped that while they were trying to get it started back
CJ has a stroke on the right side of his brain.So that means CJ can do less with his left side now.
CJ'S left side was his strongest side.CJ lost the ability to walk and talk and do the things CJ use to do
CJ can not eat by mouth yet, he has a feeding tube in his stomach.When CJ is able to eat again we
will have to start with baby food again.CJ has had a rough time.But he is a strong little fighter.
We go to theropy 3 times a week.And then other appointments the other days,so its pretty busy
around here.
But please continue to pray that CJ will make a full recovery.
Thanks for still checking in on CJ.

xoxoxoxo
MANDY,JAMIE&CJ

Tuesday, January 07, 2003 at 10:47 PM (CST)

Well i want to start out with telling everyone THANKS for all the prayers.We have been blessed with many MIRICLES this past week.Even all the doctors say that it is a miricle that Cj is with us today.Because Wednesday they told us that they really did'nt think Cj would make it threw the night.But he did and that is truly GOD,thats the reason Cj is with us today.Cj is still on the osalator i know that is not spelled right!Cj is still in really bad shape,but better than he was Wednesday.
Cj is still very critical,but we are puting our faith in GOD! God can work MIRICLES,Cj whole life has been a miricle.
They are saying if everything go's well Cj will be switched to the regular ventalator sometime and he will be on it for at least 6 to 8 weeks.
When we brought Cj in Wednesday Morning he was just like a wet noodle he was not responding to anything.And he was just gasping for air.
When they went to put him on the ventalator his Heart stoped they done CPR on him for 15 min.GOD brought him back to us.Later on that night his heart stoped 3 more times and GOD brought him back to us again!!
GOD has really been with CJ and our family also.
If it was not for our faith I do not know how we would have made it threw the night.
It is so hard to sit here and wounder if I will ever get to
see Cj's big blue eyes look up at me and hear him say mommy!
Or even know if i will ever get to hold him and hug him,and tell him how much he means to me.
I miss him so much right now and i still have him.
But know matter what happens GOD is with us and CJ.
So please everyone just keep on praying for our little angel.
He needs all the prayers he can get.
If anything changes we will let you all know.
And thanks to everyone that still checks in on CJ.

Keep US all in your prayers,
Mandy,Jamie,CJ
AND ALL THE PACE FAMILY!!

Wednesday, October 16, 2002 at 02:02 PM (CDT)

October 16,2002

Well I bet you all thought you would never hear from us!!! Well it has been a busy last couple of months.
Sorry it has been so long since our last update,we have sold our house and bought a new one.
So we have been trying to get everything done.We bought another one so we would have room for everyone to come visit.(hint hint).We really do miss everyone.Well we were supost to go back to Minnesota in September but
that got changed,since it was so close to CJ's year they wanted us to wait until November so we would'nt have to come back in December.So I guess that is a good thing.Well CJ is doing really well,he is off all of his med's
except his Pen VK, he is off the growth facter now so that is also good news.
He is wide open now never slowing down.My mom said she would have hated to see him if he did'nt have a transplant!!!
We went to Charleston this past weekend for Joe and Maggies walk for MPS, it was really great.CJ loved the Ocean we had a hard time trying to keep him out of it.We are wanting to try to get a walk started for CJ.
CJ is really enjoying being around his family again,and so are we.
Well like Isaid I don't have much time to do anything anymore besides try to keep Cj out of everyting.
But I am going to try to start updateing more.
Well I guess I will update later.

XOXOXOX
Mandy,Jamie & CJ

Sunday, July 28, 2002 at 06:02 PM (CDT)

HI again to everyone,
Just wanted to let everyone know that CJ is still doing well,and he still manages to get in to everything.
There is nothing he does not get in to.He has figured out now how to take his part in everyting.
He is no longer the one getting beat up on ,he is the one doing the beating.
Well other than that not much has changed.
Just wanted to let everyone know that there are new pictures on his page,so check them out.
well little man just woke up so I better go.
Will write later.
XOXOXOX
Mandy,Jamie & CJ

Friday, July 12, 2002 at 02:11 PM (CDT)

DAY +230
Well not much has changed,we went to the doctor Monday and he said that CJ looked great!!
CJ is down to 4 meds now (yes) the doctor took him off of his potassium,magnesium,and hopfully the bicetra
will be next.He takes pen VK ,bicetra& bactrim and zertec now.
And it is great not having to keep up with as many as he started out on.
He is still very active and is getting more so everyday.He is still quit a little character.He always seems to make
me laugh when I am down.In fact he can make anyone laugh.By the way will put some new photos when ever
we get the program put back on our computer.When it was being fixed it was left off.
And Jamie says that we just can't put plain pictures on.Well we want everyone in Minnesota and Duke to know
that our prayers are with you,just remember to keep the FAITH!!!
Well better go for now ,I will write again in afew days.
XOXOXOX
Mandy,Jamie & CJ

Saturday, July 06, 2002 at 09:36 AM (CDT)

DAY+224
HI again to everyone,we hope everyone had a great July 4th.We had a really good time.
Our church has a huge singing and fireworks every year on some land of theres,we took CJ we found a place
away from everyone.So we could take him.There might not have been anyone around but we had a really great
time.That was the first time since October that we all three actually got to go some where together.
CJ danced all night long.And when it came time for the fireworks CJ could not take his eyes off of them,
I just loved watching his little eyes watching the fireworks,it was like noughthing he had ever seen before.
It was great to get to see him enjoy something after everything he has been threw.
These last two weeks CJ has just been full blast,he is doing things that we have never seen him do before.
He is getting up out of the floor now with out holding on to anything,he is tackling everyone he really getting to enjoy life.And that is a great thing to get to see.
GOD has really worked some miricles in ours and CJ's life,and we pray everyday that he will continue,so they can come up with a cure so we won't have to worry anymore.
We hope that all of our friends from all diffrent states are doing well,and can't wait to see you all again.
Well I guess I will be going for now,but continue to pray each day for CJ and all the other children!!!!
XOXOXOX
Mandy,Jamie& CJ

Thursday, June 27, 2002 at 08:23 PM (CDT)

DAY +215
Well sorry it's been so long since our last update,our computer has been out of service for a while.We finally got it back last night.
Well CJ is doing well all except for the two times he's had to go in the hospital,for
yes you guessed it FEVERS!!
Well he was in the hospital last Wednesday thru Saturday and also two weeks befor that for three days.
He is doing so well with everything,his bending and squating is getting better and better.He can get around so well now.And he is still in to everythng now more than ever.I think he is finally getting to enjoy the terrible two's.
He is really starting to back talk now.He is to smart for his on good!!
It is getting really hard keeping up with him now he is always on the go.
We are scheduled to be back in Minnesota September 19th and 20th.
We can't wait to see everyone again but a short visit.
We got some good news today,Riley and Jeanne found out today that Riley is 100%
2nd donor YOU GO BOY!!!!
IT'S ABOUT TIME!
Well we really do miss all of our friend we got to know in Minnesota,and can't wait to see them again. Well I will go for now but it won't take as long for me to update next time.
XOXOXOX
MANDY,JAMIE&CJ

Monday, May 27, 2002 at 07:24 PM (CDT)

+175 DAYS

Well sorry for taking so long to update,it's just been really busy getting use to everything.
Well since leaving Minnasota Cj has only had to have one plattlet transfusion,and he has not had to have blood yet!So that is really great.We continue to go to clinic every Monday and Thursday,but hopfully soon we will only have to go once a week,if
he continues to do well.His (WBC) at the last doctor visit was 14,500 and his (ANC)
was 10,000 his plattlet count was 95,000 wich is really good for CJ.He is loving being at home around all of our family.But we still miss all of our family that is in Minnasota and that has left Minnasota.We want to ask everyone to say a special
prayer for Rilley Wednesday he goes back in for his 2nd transplant wich will be Friday June 7th.And also remember his mom Jeanne she is having to go threw all of this by her self.Well since today was a holiday we will be going to the clinic tomorrow because they were closed today,so pray we continue to have good news!!!
Well I will try to update sooner next time.Better go for now will write later!!
XOXOXOX
MANDY,JAMIE& CJ

Monday, May 13, 2002 at 06:45 PM (CDT)

+161DAYS

Home Sweet Home at last!!Well we made it home about 12:30 Friday afternoon.
CJ is doing good, he loves being at home,and so do we.We went to see CJ's new doctors today and it went really well.they said CJ was doing well.We will go see them on Mondays and Thursdays.We really miss all of our friends we left behind but we will be back to visit soon enough.Well sorry so short but we have boxes to un pack.Just wanted to let everyone know that we made it home.
And just because we are home please don't stop praying for CJ.
Will write again soon.
XOXOXOX
Mandy,Jamie&CJ

Saturday, May 04, 2002 at 05:56 PM (CDT)

DAY+152

Well we are all so anxious to return home,we can not wait .
We are slowly but surely packing up our stuff,we are trying to get everything we can get done while Nana and Paigey is still here.Just please continue to pray that all goes well and that we have a safe and fast trip home.
Well I am so happy to be returning home to my family but i am also sad to leave my
family here.Jeanne and Riley are the only ones left that we are close to,Jeanne has became like a sister to me,and I truley hate to leave here.And please pray for Riley and Jeanne and family,Riley might have to go threw transplant all over again,because they are not sure that this transplant took.
Riley is a very strong little boy and he will be just fine.
Well better go for now,pray that we get to see everyone in South Carolina this week!!

Please pray no fevers,no sickness and for a safe trip home.

We are planing on leaveing Thursday around 4 or 5 that evening,we have to be at the clinic that morning to go over discharge.

Thank you GOD for all the MIRICLES that you have blessed CJ with,Thank you for letting this week finally get here.

XOXOXOX
MANDY

Thursday, May 02, 2002 at 01:19 PM (CDT)

DAY +150

Well HI again to everyone,well we seen Doctor Orchard today and he said that we
may return home next Friday!!!
We have been waiting for this week to come for a long time now ,so please pray all goes well this week.We can not wait to see everyone.
So please just pray we get to return this time.
Well CJ turned the big 2 yesterday,we had a great day here with NANA,PAIGEY&
PAPA,we really enjoyed the day.
We want to thank GOD for letting us share another year with our little angel
and we hope to share many more with him!
We can not wait to get home and share his birthday with all of our family!!

Better go for now,will keep everyone updated.
XOXOXOX
MANDY,LAMIE&CJ

Saturday, April 27, 2002 at 11:35 PM (CDT)

We wanted to let everyone know that another little angel is going to be with JESUS.
We are so deaply sorry to all of Kacie's family.
Kacie and the whole family will be greatly missed.
Please remember to keep Kathy,Donald & Erine in your prayers.
Along with all of the other little angels family's that we have lost.
Mandy,Jamie&Cj

April 27, 2002 - Day +198 - The Gates Of Heaven...

The white pearly gates of heaven are wide open to welcome a perfect angel into God�s kingdom. Jesus is waiting to hold and hug our
precious little one. Kacie will be joining the other little angels in heaven. Please pray that this evening is peaceful as Kacie leaves us here
on earth to be with her heavenly father.

Kacie has touched more lives than we can imagine. We receive letters everyday of people who have been praying and following her
journey. God has a better place for her now that is filled with no pain and only happiness.

We�re updating this journal entry early so that we can spend every precious moment with her. We will update more as we are able. We will
be planning a �Celebration of Life Ceremony� for Kacie soon and will update the journal entry with details.

Please keep us in prayer this evening. Pray that Kacie is comforted and rejoices at the party that the Lord has planned for her. God bless
each and every one of you.

Smiles & Giggles,

Donald, Kathi, Erin, & Kacie

Thursday, April 25, 2002 at 11:55 PM (CDT)

Well sorry again,I know that i am getting slack about updating.
Well Cj continues to do well,we finally got the first set of results back on the EBV
virus after the first dose of the powerful med for it and we are so pleased to say that it came back less than 100.That is really good that is as low as it goes.And that is just after the first dose.He had his third dose today,they test him every week for it
we just have not got any of the other results back yet.Well we are still praying that all continues to go well with the EBV and the tapering of the CSA (amune supresent) that is the drug that we are watching to make sure he does not get GVH again.They are getting him off of it alot faster now that he has had the EBV because it can make it worse.So please pray that he does not get GVH again.Well Cj will be off of it the 16th of May,and he will be threw with his last dose of the powerful stuff next week!!
Well CJ will be turning the BIG 2 on Wednesday he is growing so fast,or as Jamie puts it he is not mommy's baby anymore he will be a TODDLER!!
No matter what he will always be mommy's baby!
Well Nana and Aunt Paigey will be comeing on Sunday and staying til the following Sunday so they will be spending the big day with us,along with papa so CJ won't have to spend his B-Day with just mommy and daddy.
Well we can't wait to see nana and Paigey,we really wish we could see cousin Tanner we really miss him!!
Well I think CJ is ready to see some new faces ,ours seems to be getting old to him fast.
Well we are still praying that we will get to return home sometime next month so we can celabrate Cj's B-day with everyone.

Well i will be going for now but please remember to keep Riley,Kacie,Luke that will be here next week and all of the other precious children on 4E in your prayers,because they really do need them including CJ.

Please pray for the EBV virus to stay out of little CJ's body,and that the GVH stays away,so we can return home soon!!
Thanks again for all the prayers.
May GOD bless each and everyone of you!!
MANDY

Thursday, April 18, 2002 at 03:55 PM (CDT)

Well CJ finally broke away from the get well hotel!! +137 days
CJ got out of the hospital Tuesday.IT took us this long to recover from the week we had in there.Well CJ is doing well they are going to keep us here at least until they get him off of his CSA,and that will be the 16th of May.They said eventhow he is on the med to get rid of the EBV that with out him being off of the CSA that it would more than likely come back.And they want to watch him as he is comeing off of it to make sure he does'nt get GVH again.And Riley got his results back today,he is 3 to
4% doner.The DOC said that they would check him again next week to see what he was then,that if he was the same or higher then that was good but if he was lower then they would worry!! So please say a prayer for him that it will continue to rise.
I am sad to report again that we have lost yet another one of our precious hurler friends,Carley,she was back for her 2nd transplant and she has been struggling
for a while now on the vent,So please say a special prayer for her mom and dad and family,they were very special people.
Well please pray that CJ will continue to do well and that the tappering of the CSA
will go well and that he does not get GVH again and that the EBV will leave his body.
Please pray that this time everything go's well and we can actually return home this time.Pray for Riley and pray for Carleys family.

HUGS AND KISSES
MANDY

Sunday, April 14, 2002 at 10:17 PM (CDT)

Hello again to everyone!
Well CJ is still in the get well hotel,we don't know how much longer he will be in there.Cj got his first dose of Rituximab last night,it goes in IV over 4 hours,he did'nt seem to have any reactions to it.
Well they are doing xrays every morning of his chest to see what his heart looks like.Well the last 2 morning the fluid around his heart has not came back yet,so that
is a good thing.He still don't want to get down much,but he is awake now.
Well can you beleave this is the first day in the last 6 days that the doctors have not came in with something to say about something being wrong .
It felt pretty good,(knock on wood).Well it seems that Rileys counts are rolling in,
they are going to test him tomorrow to see whos marrow it is.
Please say a special prayer for him and his mommy and family,because we know what that week of waiting is like.

Thanks to everyone that has kept Cj and us in your prayers,thanks for everything you all have done for us.

HUGS AND KISSES
MANDY

P.S. Just wanted to tell everyone that there are finally new pictures on my web site!! Check them out!!

Friday, April 12, 2002 at 10:09 PM (CDT)

Well it has been a while since i have updated, well alot has been going on since Cj's
surgry! To start with CJ got a overdose onBenadryl when he went to surgry Tuesday.
The people puting him to sleep was giving him pre meds before giving him Platlets
and he is supost to get 10mg but they gave him 50mg.So he did not want to wake up,so we had to stay til the next morningor so we thought!!!

Cj started running a temp of 101.9 so we had to stay CJ did not wake up until real well until Thursday.Well because of the fever the done chest xrays, well Thursday morning the doctors came in and said that his hart looked inlarged and that the tissue that they sent off from the hurnia came back abnormal and that they were going to do more test to make sure that it was not post transplant lemphoma!!
Needles to say we were very shocked,and scared.
They thought that the abnormal cells might be caused by the EBV virus that CJ tested positive for a couple of months ago.Well they done EKG'S and ECHO's
on his hart,well come to find out his hart was not inlarged it just had fluid around it,
so they decided to do a hart tap to drain the fluid today so they could test the fluid,
well they drained off 180cc's of fluid wich is about 6 ounces,wich is alot.
They are doing test on the fluid.
Well to get back to the hernia,they done ct scans of his whole body to make sure they were not anymore cells,and they did'nt find any.Which was a alot off of our chest.
But it did come back as the EBV virus but they said that they have never caught
they cells this early before,it is a couple of stages befor cancer.
And if you don't do something about it now it could turn into cancer.
So they are going to start him on a med for it soon,they only thing is he will get it once a week for 4 weeks,so we will be in MN for at least 4more weeks.
So please just pray for little CJ he has been threw mor this week than he has his whole transplant!!He has had xrays,ct scans,overdose,spinal tap,hernia surgry,port placment,and he had his belly button hurnia fixed.And he has done so well threw it all.
Well thats not all that has happened another of our little friends has gone to be with
JESUS,Caleb past away early this morning,please pray for his sweet family.
They were such sweet people and we thought alot of them.

Well when we find out more I will let everyone know.
Lots of hugs and kisses
Mandy

Saturday, April 06, 2002 at 10:14 PM (CST)

CJ wanted us to write and tell everyone hello!
He said that in order for him to come home he is going to have to get the attention that he is getting here!!
Well anyway they tried a new med on him today,Ican't remember the name but it is
like the GCSF that makes his white cells grow,but this is supost to make thr red cells grow.He said that he did'nt know how it would work but he would try!!
He said that it might just take time for his red cells and platlets to bounce back.
Maybe it will work.

Well CJ's surgry is still planned for Tuesday we have to be at the hospital at 6:30am
and it is scheduled to start at 8:30,so please pray that Cj stays well and that the surgry go's well.Please pray that CJ has a fast recovery,and he will stay well and we can return home soon.
Well CJ said that it was time for night,night so since the boss said it I guess I better
go.

Please remember Riley,Carley,Kacie,and Caleb pray that GOD will continue to bless them the way he has blessed CJ.
And pray that GOD will give all of there parents the strenght to continue to take care of all of these little angels because it is a long and hard and tireing journey!!

HUGS AND KISSES
MANDY,JAMIE and CJ

Wednesday, April 03, 2002 at 02:39 PM (CST)

Sorry that it has been a while since my last update!!
Well we are going to try this again,CJ's surgry is scheduled for Tuesday April 9,
they are going to fix the hurnia and more than likly put the port in!
Cj is still being Cj, meaner that ever,he is still in to everything.Well it looks like one of CJ's friends is going to be on his way home soon.Elliot is fixing to leave.
Kristin (Elliots mom) and i were fighting to see who was going to get the operating room first.Elliot is getting a port also.He was going to get to go this week but the DR. that is doing there surgry was booked all week.
CJ was supost to have his surgry this week also but as I said it was booked.
We just ask for all of your prayers,that CJ will be able to have the surgry this time.
Please pray that Elliot and CJ stay fever free and that they stay well !!
Well we are really fighting with CJ now to take his meds now,ever since CJ had the sinus infection he is not wanting to take them,so please pray that by the time we return home that Jamie and I will still have our sanity!!!
Well i will update again later.
XOXOXO
MANDY

Thursday, March 28, 2002 at 05:37 PM (CST)

Hi every one asking that you would keep Carolyn and Andy, in your prayers there son Brady has been called home to rest in Jesus arms.
Brady is 2 1/2 years old, and we only had the opportunity to know them the last time we where in the hospital. I consider it a privilege to have
known them. May God watch over them threw this time of lose.
God is our refuge and strength, an ever present help in trouble. psalm 46:1

remember CJ ,Riley,Elliot,Carley,Kacie,Caleb, and all of the other kids on 4E in your prayers. you can check on there progress and let
them know you are praying for them at there web sites
http://4elliot.com
http://www.calebglover.com/index.html
http://www.kacieskrusade.org/index.html
love jamie

Well not alot going on,we are still just waiting(our life story).
Well CJ is doing well,he gets his last dose of IV antibiotics tomorrow night.
So please pray that the fevers stay away,and that what ever it was the antibiotics cured.We went to the clinic today they
preordered platlets yesterday for today,come to find out he did'nt need them today.They went ahead and gave them to
him so we get a day off tomorrow!!
We go back Thursday and see Doctor Orchard,so I guess we will see what he says about CJ.We asked AMY thats who
CJ sees everyday,we asked her when they would think about doing his surgry,and she said after the antibiotics was
stoped and
the fevers were gone,so pray that it is soon!
We ask you to pray for the fevers togo away we ask that his counts continue to stay up,we ask that we may return home
soon and we also pray for complete healing

Well I know it is alot to ask for but I know that our precious GOD can do anything
if you ask it in his precious name.
GOD can work MIRICLES,each of us parents that are here knows this because we
have already seen so many with our kids already!!!

THANK YOU GOD FOR ALL OF THE MIRICLES THAT YOU HAVE GAVE US ALLREADY,YOU ARE SO VERY GOOD
TO US LORD,AND FOR THAT WE ARE
SO VERY GREATFUL
AMEN

MANDY

Tuesday, March 26, 2002 at 12:59 PM (CST)

Well not alot going on,we are still just waiting(our life story).
Well CJ is doing well,he gets his last dose of IV antibiotics tomorrow night.
So please pray that the fevers stay away,and that what ever it was the antibiotics cured.We went to the clinic today they preordered platlets yesterday for today,come to find out he did'nt need them today.They went ahead and gave them to him so we get a day off tomorrow!!
We go back Thursday and see Doctor Orchard,so I guess we will see what he says about CJ.We asked AMY thats who CJ sees everyday,we asked her when they would think about doing his surgry,and she said after the antibiotics was stoped and
the fevers were gone,so pray that it is soon!
We ask you to pray for the fevers togo away we ask that his counts continue to stay up,we ask that we may return home soon and we also pray for complete healing
for CJ ,Riley,Elliot,Carley,Kacie,Caleb,Brady and all of the other kids on 4E

Well I know it is alot to ask for but I know that our precious GOD can do anything
if you ask it in his precious name.
GOD can work MIRICLES,each of us parents that are here knows this because we
have already seen so many with our kids already!!!

THANK YOU GOD FOR ALL OF THE MIRICLES THAT YOU HAVE GAVE US ALLREADY,YOU ARE SO VERY GOOD TO US LORD,AND FOR THAT WE ARE
SO VERY GREATFUL
AMEN

MANDY

Sunday, March 24, 2002 at 05:21 PM (CST)

+112 DAYS
HI again to everyone,well CJ continued to run a temp,every time they would take him off the antibiotic
the fever would come back.So they put him on a 7 day course.His fever's were'nt getting over 100.5 so
they decided to let us do the IV antibiotics at home,since we have done them before.And thay moved his temp up to
101.5.So if it gets that then we bring him back in.They think it is a infection in his line,so they are trying to cure it
this way.If this don't help then they will more than likly pull his hickman out.
So i hope this helps so we can start ending our journey here.
Well i will go for now time for antibiotics.
XOXOXO
MANDY,JAMIE AND CJ

Tuesday, March 19, 2002 at 10:14 PM (CST)

+109 DAYS
HI again ,I wanted to write and give a update on Cj.
Well we were suppost to get out of the hospital today,but CJ decided that he liked the attention so much he wanted to stay a few extra days.
Cj started running a temp last night 100.5 just enough to keep us in longer.
He ran it that one time and then it was gone.But the Doc's said today that in a way it was good because that shows that there was a viral thing going on,and that was what was making his counts bottom out.The biopsy results showed that the cell's
were recovering,and that it showed that he was making red cells and white cells
and it even showed he was starting to make a few platlets!!
Since CJ'S counts have been down he has been getting platlets everyday,but Doctor Blazer said when his count went up more then they would too.
This morning his WBC was 3.7 (3700) and his ANC was 2.1(2100),and that was great.Thats the highest they have been since before CJ had GVH that time.
And he did'nt need platlets .So we have to pray it stays that way and that we get out of the hospital soon.
Well i have another prayer request for a little boy named Caleb he is really going threw a hard time right now,he is on the osculator and he is really strugling .
Please also pray for his parents.Caleb does not have hurlers he has another disorder.
His family are a very sweet couple and they really need a miricle right now.
Also remember all the others.
Riley has his CT scan tomorrow,lets pray that they can get on with his transplant.
Well thanks again for all the prayers.
XOXOXO
Mandy

Sunday, March 17, 2002 at 09:57 PM (CST)

+105 DAYS
HI to everyone,well Cj is still in the hospital,but he seems to be doing better.
His counts are going up slowly.His wbc went from 1100 to 2200 today and his
ANC wich is what fights infection went from 300 to 1100 today.
So we were so glad to see his counts start going back up.
The doc's said if all is well then Cj could come back to the Apartment Tuesday.
So we will wait and see.Cj is not as slugish now that his counts are coming back.
They said that when they see that CJ'S counts are going to stay up then they will reschedule his surgery.So they are still going to keep us here a while to see how everything goes.But that is the best thing,so they get all the bugs out before we come back to South Carolina.We are just so tired,the hospital can really ware you out.I don't know how the families that have been in the hospital for so long deals with it.
Well we have got to know some more families since we have been in the hospital,and they are all so nice.I just ask all of you to keep them in your prayers also.Riley gets admited to the hospital wednesday,and if all is well with his CT SCAN then they will start KEMO Friday or Saturday,and little Eliot came to vist
CJ yesterday they got to stare at each other behind the glass.
It was like they were looking in the mirror.There is alot of CJ'S friends on the ventalator ,Carley,Kacie and Caleb,so please keep everyone of these kids in your
prayers.
Well i will go try to get some sleep,I'll write later!!
XOXOXO
MANDY
And God Said "No"
I asked God to take away my pride.
And God said "No".
He said it was not for him to take away,
but for me to give it up.

I asked God to make my handicapped child whole.
And God said "No".
He said his spirit was whole,
his body was only temporary.

I asked God to grant me patience.
And God said "No".
He said patience is a by-product of tribulations.
It isn't granted, it is earned.

I asked God to give me happiness.
And God said "No".
He said he gives me blessings, happiness is up to me.

I asked God to spare me pain.
And God said "No".
He said suffering draws you apart
from worldly cares and brings you closer to me.

I asked God to make my spirit grow.
And God said "No".
He said I must grow on my own.
But he will prune me to make me fruitful.
I asked for all things that I might enjoy life.

And God said "No".
He said I will give you life, that you may enjoy all things.

I asked God to help me LOVE others,
as much as he loves me.
And God said,
Ah, finally you have the idea.

~ Claudia Weisz ~

Wednesday, March 13, 2002 at 09:13 AM (CST)

+100 DAYS
Well Im am writing to ask for a special prayer to be said today for CJ.
His count's still are not doing well,they are going to do a bone marrow biopcy
today at 11:00 and said that they might have the piliminary results back this afternoon.
GOD has seen CJ threw so much i am sure he will see him threw this.
CJ is a miricle,he has touched so many people.
So please pray that GOD will see CJ threw this.
Just pray that GOD will put his hand on CJ and all the other kids up here,they all could
use a good prayer!!
Love,
Mandy

Monday, March 11, 2002 at 10:42 PM (CST)

+98 DAYS
Well I got some bad news,CJ was readmited to the hospital today for a fever.
His white blood count has also droped a little,so they are going to do a bone marrow biopcy
Wednesday,to see if he has enough cells,or if his marrow is just being lazy.
If the cells are low then they will get somemore cells from the donor,and give them to CJ
threw his line.But they will have to watch him again for GVH,so we are praying that it
is just a bug.They are going to give him GCSF (growth factor) everyday to try to pump his counts up,
so we are just praying that is all it is going to take.His surgry is on hold for right now until
they see what his counts are doing.So i just ask for special prayers to be said for him,that he won't
need a boost,and that the GCAF will take care of it.Pray that his cultures come back negative.
Well just remember CJ in your prayers along with all the other familys on 4c.
I will write when we find out something.
THANKS,
MANDY,JAMIE AND CJ

Sunday, March 10, 2002 at 10:54 AM (CST)

+98 DAYS
Hi again,well CJ continues to do good.We are still counting down the days.
Cj is off of the steroids now,and he is not eating like he use to,instead of 10 meals a day he is
eating 1 good meal a day and snacking the rest of the day.
The Doctor's said that after he came off of the steroids then sometimes there appetites go away.
But lets pray he continues to eat ,and that he gets his appetite back soon.
But besides that he is doing real good.
His surgery is Wednesday so remember to say a special prayer.
Hopefully everything will go well and we will be home in a week or two!!
We are praying so hard that we will get to come home soon!!!
Well Riley will be back Wednesday to see the doctors to see if his lungs are clear,
and then they will see one of the other doctors Friday to see if everything is ok to start the transplant!!
So remember him in prayer also.Last we herd Elliot is doing well also,all of his 60 day labs were good.
Well i guess i will go ,NANA and GRANNY GREAT left this morning so we are really missing them.
Jamie's dad is here so that's good,he is suppose to help Jamie drive home.
Well i will write again in a few days.
XOXOXO
MANDY,JAMIE AND CJ

Wednesday, March 06, 2002 at 05:03 PM (CST)

+94 DAYS
Well hello again to everyone,
I know it has been awhile since I have updated but we have been spending time with nana and granny great.
Well we went to the surgeon yesterday,and they are going to fix his hernia next Wednesday at 12:00.
He said he didn't think he would have to stay over night.Then the day after is his 100 day work up.
AMY said they wanted to see how he does threw his surgery and they done another blood test for the EBV virus,
and she wanted to see how they looked.Last time they went from 6300 to 2500 so that was good ,we hope they will
continue to go down.So after all of that and if all goes well , and nothing else comes up then hopefully we will be coming home soon.
We go see CJ'S main doctor tomorrow Doctor Orchard so we will see if he says anything.
Lets pray that all goes well with everything and that Cj has a quick recovery,and that we will be on our way home soon.
XOXOXO
MANDY,JAMIE AND CJ

Thursday, February 28, 2002 at 08:41 PM (CST)

+88 DAYS
Well we've got some good news to report.CJ'S MRI and CT SCAN came back and they are
no signs of the EBV virus and that is really good news.GOD really has blessed CJ, GOD does work
MIRACLES.CJ is a miracle in it's self.One day next week they are going to take CJ's hickman line out
and put a port in for him to come home with, and they are also while they are doing that they are going to
fix CJ'S Hurnia.So if all continues to go well, then we may return home in a couple of weeks!!!
Please pray all go's well.I know I have ask everyone to pray alot,but I know that is what has brought CJ threw all of this.Cj is a very special little boy and he has a lot
of special friends and family.We are really blessed to have friends and family
as special as you all.We hope to see you all real soon.
XOXOXO
MANDY,JAMIE,CJ

MONDAY, February 25, 2002 at 12:38 PM (CST)

+85 DAYS
Well HI again to everyone,we went to the clinic today and CJ's everything looked good
they said ,and they had a cancelation at the hospital.
He was scheduled for the CT scan and the MRI the 7th of March,but now we are going
to have it done this Wednesday.So thats means we won't have to worry as long.
So just please say a prayer for him,that there will not be anything there that should not be.
And that everything go's well so we can be on our way home soon.
Well thanks again for all the prayers.
XOXOXO
MANDY

To My Anticipated Son
I anticipated complaining of a waking baby;
Not of being grateful he's able to wake at all.
I anticipated the wonder of time rushing past;
Not of reflecting on milestones so small.
I anticipated crying at immunizations and bumps while learning his way;
Not of agonizing at more tests, evaluations, and word of more delays.
I anticipated choices over preschool, clothes, and scout troops;
Not of choices between hospitals, specialists, and which support groups.
I anticipated loving him, but enjoying his independence from me soon;
Not of loving him so much I'd want to keep him sheltered in my cocoon.
I anticipated health and perfection when my baby was inside, thinking
anything less would be tragic;
But now that he is here, my special son has worked some kind of magic.
I anticipated anger and disappointment at this fate;
Not the joy and growth and knowledge that have become mine as of late.
I anticipated something different, that is certainly true;
But that's because I never could have anticipated one I love as much as you.

Thursday February 21, 2002 4:48 PM CST

+81 DAYS
Dear friends and family,
CJ is continuing to do well,but we got some test results back to day for EBV virus.
This is like an adult MONO.But in transplant patients it can be serious.This is a new test that they have started this month.
It is not a very acurate test ,thats why they have'nt been doing it.But they decided they should start.
They don't know if CJ has it or not,so they are going to do some more test.They have scheduled MARCH 7 he will
have a hole body CT scan done,to see if there are any signs of it in his body.They will do blood test weekly to test,to see what his #
are.Like his # today was 6,000 out of 100,000,wich it is not very high.But the DOC said anything over a couple of thousand they keep a eye on.
He said he is not to concerned right now.He said they will have to monitor this for a couple of months if all the test come back and his # don't keep going up,
and if the scans are good.He said if everything is good then they can probable check him at home.
I just want to ask for all of your prayers,GOD has seen us threw this far and I know he will continue to bless CJ.
Just pray all go's well with the test and we will be on our way home soon.Thanks so much for everything.
XOXOXO
MANDY,JAMIE AND CJ

Monday February 18, 2002 2:21 PM CST

+78 DAYS
Just wanted to write and tell everyone HELLO !!Well we had a short visit at the clinic today.
We had to be there at 10:30 and we was out by 11:00.Theres a first time for everything.
Well I hope everyone is doing ok.CJ is doing fine he is still meaner than ever.
The Docs still say CJ is doing good.He did'nt have to get platlets to day,he got them Saturday and usualy
he gets them every other day!! So we don't know if that means anything or not.
They want us to come in the morning to see what they are doing.
If he is'nt making his on yet at lest they are lasting longer.Pray that they are doing something.
Well she said that everything else is looking good to.
Well I hope everything is going good for everyone else.
Well I have one more prayer request,One of Jamies aunts is not feeling well the last couple of weeks
So just pray that everything is going to be ok and that she will start feeling better real soon!!!
Well im going to go for now,I will write again when we find out what CJ'S platlets are doing!!!
XOXOXO
MANDY,JAMIE AND CJ

Saturday February 16, 2002 7:35 PM CST

DAY +76
Well CJ continues to do well,not much has changed .CJ is still not making platlets
but the DOC. are not concerned.CJ'S DOC.said that it could take a long time.
He said some kids go home getting them.He said that CJ is doing good.
So lets just continue to pray that CJ will continue to do well and stay well,and that
GOD will give him everything he needs to come home in a couple of weeks.
CJ has 26 more days until day 100.Hopfuly we will be home soon after that.(PLEASE PRAY)
We are so ready to come home,we miss everyone so much.We can't wait to see everyone.
Well CJ and all the other kids up here go threw so much.So please continue to pray for all of CJ'S little friends.
RILEY-WHO HAD RSV AND GOT SENT BACK TO OKLAHOMA FOR 4 WEEKS UNTIL HIS LUNGS HEAL.
ELLIOT- HE IS DOING GREAT
ANDREA'S FAMILY
AND TOM AND JODY WICH IS ALEXIS'S FAMILY
And remember all of the other HURLER children that I do not have updates on.
Well I guess i will be going we have MEDS to give and cloths to fold.
Well i WILL UPDATE LATER.
Thank again for eachone of your prayers.
LOVE,
MANDY,JAMIE AND CJ

Sunday February 13, 2002 11:06 PM CST

Hello every one well it has been sum time seance I have wrote.
well Cj continues to amaze the doctors we received good news
to day well amazing news we got Cj enzyme level this is the
only reason for coming to Minnesota. For it is the enzyme
that Cj is missing that would eventually take his life. Doctor
Peters sad that eventually over the years that Cj would be at
the same level as his donor... The donor was 30.3 percent enzyme
in his body it is suppose to take years to get to this level. Well that
is wear God comes in the pitcher, because God gives in God size amounts!
And is loyal to his children Cj is now 57.6 percent more than his donor
how do you explain it only one word GOD. he continues to bless Cj
and we are for ever thankful, for as long as we are blessed with his presents
on earth. Thanks to all that have not for got are family and all the prayers
that you have lifted up on behalf of Cj we thank you. pray that God will
continue to bless Cj so we may return home soon. love you all
JAMIE, MANDY, and Cj
P.S to God be all the glory
and remember Alexis & Andrea family
in there time of loss!!!

Saturday February 9, 2002 12:36 AM CST

Well it is time for a update, +69
CJ is doing good,we took him to the clinic the other day,and they done a nasal wash
on him.Well it came back that CJ had the FLU!!
But he never had any symptoms of it.So they started him on a another antibiotic.
But I guess it is a good thing that he did'nt feel craby,or they would have put him back in the hospital.The doctor said yesterday that he was doing good.The only thing that he was watching now was his platlets.His white count is finaly going back up.(thank GOD)now lets just pray they continue to go up and stay up.
So if he continues to do well then maybe it won't be long til we come back home.
We are so home sick,we miss everyone so much.
The only thing that we will have to wait on is platlets.But they said that it was normal
that he has'nt started making his on yet,but they said that they think he would by his 100 days.So please pray that GOD will continue to bless CJ and give him what he needs to come home.
CJ's other papa and grandma is here with us right now,and he is really loving it.
They will be leaving tomorrow if they don't get stuck up here in our blizzard.
they are calling for a very windy snow storm.
Well continue to pray for CJ and pray that we will be returning to SOUTH CAROLINA
VERY SOON!!!!
XOXOXO
MANDY,JAMIE AND CJ

Tuesday February 5, 2002 9:09 PM CST +65

WELL HELLO AGAIN TO EVERYONE,
CJ is still doing good,he woke up with a fever yesterday morning,so we thought we
was going you know where.But when we got to the clinic it was gone.
I think CJ just enjoy's making us look crazy and over protective.
CJ's counts are slowly creeping back up,we pray that they stay up.
Well CJ'S 100 day work up will be MARCH 14TH so just pray we get good news and
that CJ continues to do well so we can get home.Well i guess I better go it is MED
TIME!!!
P.S HERE IS YOUR UPDATE JODY!!
XOXOXO
MANDY,JAMIE ANDCJ

Friday February 1, 2002 7:27 PM CST +61 DAYS

Hello again,it's been a while since i have updated.Not alot has changed,CJ seems to still be doing good.The only thing now is his white blood count is going up and down.
It's droping a little low.But the doctors don't seem to be worried about it.She said today that between 40 and 80 days out they can drop so maybe that is what it is.Just say a special prayer for him,that his counts go back up and stay up and he starts making his on platlets.Thats what we are waiting on.
We got a letter today that CJ'S 100 day work up is March 14th. They will do xrays and all kinds of test on him that day.
So also pray that go's well.And maybe if CJ
starts keeping his counts up and all go's well then maybe just maybe we can come home.
Well CJ'S friend Riley still has not got his transplant,they are sending him back to
OKLAHOMA until his lungs clear up.He has RSV
the same thing that CJ had that time they put him in the hospital.So they will go back home for about 4 weeks.
So that means that we are going to be by ourselves again.Since Jody's gone and now them.But maybe it wont be to long and we will be coming home.
Well I better be going I will update again later.
HUGS AND KISSES
MANDY,JAMIE AND CJ

Saturday January 26, 2002 1:40 AM CST

Today I am not writing about CJ.
Today I am writing in LOVING MEMORY OF
ALEXIS WIGGINS.Yesterday we lost a very precious little girl,she lost her battle with hurlers.
She was like all the rest she touched everyone.We meet her and her mom Jody when CJ went in the hospital for his transplant.
Alexis had her transplant last MARCH.But she has been threw so much.They had been here a year the 23rd of January,and she past
away yesterday the 24th.That little angel
has pulled threw so much but she just could'nt fight this one.Alexis was very lucky to have a mom like Jody,she stayed beside her for the hole time she was here and the dad could'nt be here the hole time but I know that he was a big part of her life.
But Jody and TOM and the kids will be leaving tommorow,so we said our goodby's tonight,and now we feel like we have lost a very important part of our life.
Because Jody is what made us feel like we could make it this far away from home.
She was always someone we could talk to that was going threw what we were,and she understud how we felt.Please pray that they will find peace with everything they have been threw.FROM ALL OF US HURLER KIDS,ALEXIS YOU ARE TRULY OUR ANGEL!!AND WILL NEVER BE FORGOT.

Wednesday January 23, 2002 3:34 PM CST

Well hi again,
CJ is still doing good,the doctor said she was happy with his progress.Well I am mainly writing to ask for some prayers!!
CJ's little hurler friend Alexis,the doctors found fungus on her lungs,they put her back in the hospital because she was having breathing dificulties.But it turned out to be a fungus.They found out yesterday that the fungus had spread threw her body.
Witch that is not what you want to hear.
Alexis is really struggling right now.
She needs a miricle!! The doctors say that theres not much they can do.BUT i know someone who can GOD.He can work miricles.
And please remember to pray for the family,
Jody (the mom)really needs some prayers.
No one can emagine the pain that she is feeling right now,watching her child go threw this.Just please pray,pray ,pray.

MANDY,JAMIE AND CJ

Monday January 21, 2002 1:43 PM CST

Well not much has changed,CJ is still doing good.I really think that everything is finally catching up with him.He wants to sleep alot lately.He does not feel bad he is just tired.He wants to sleep and eat.
He still plays some but i guess he is just resting up for when he gets to come home.
Jamie and i are doing all right we are just worn out.We never get to slow down,there is always something to do.Well i will write more later.It is time for a nap!!!
P.S. CJ'S LITTLE FRIEND RILEY WENT IN THE HOSPITAL TODAY TO GET READY FOR HIS TRANSPLANT,AND ALL OF CJ'S LITTLE FRIENDS ON 4A ALEXIS,ELLIOT,ANDREA,KACIE NEED OUR PRAYERS TOO!

Wednesday January 16, 2002 8:36 PM CST

Hello again to everyone,
Well we are out of the hospital and back at the apartment.They let us come home yesterday.CJ's still has GRAFT V HOST but it is getting better.We went to the clinic today and they went back up on his steroids
so he could get rid of the GVH.So maybe it will get it out of his system,so we can get his counts to stay up.The GVH can make his counts flucsuate.So we are just playing the waiting game again.CJ has been eating alot and now that his dose of steroids are going back up he really will eat alot,I don't know what we will do.We are still just having to go to the clinic every other day,
so we get tomorrow off.They took him off of two of his meds but added another blood presure med so he is back on two for blood presure it was doing better but with his steroids going back up then it will cause his blood presure to go back up.
Well i guess i will be going but just remember to pray for all of CJ'S little friends and pray that CJ don't have many more set backs.Well i will write latter.
HUGS AND KISSES TO EVERYONE!!
MANDY,JAMIE AND CJ

Wednesday January 16, 2002 8:36 PM CST

Saturday, January 12, 2002 at 11:26 PM (CST)

Sorry that it has been a couple of days since i wrote.Well CJ is back in the hospital again,he woke up yesterday morning throwing up,and not feeling very good.And they also sent him for a skin biopcey because he is broke out in a rash on his body.Well anyway it turned out to be GVH
graft verses host disease.They say it is all right to have a little GVH just as long as they get start doing something before it gets severe.CJ is feeling better to day but he started running a temp. last night ,but just one time.So even if there was noughting else going on he would still be there at lest 48 hours.So now with this going on who knows how long he will be in there.He started having real runny stool this morning ,so they said that could be caused from the antibiotics or a couple of other things.So they are going to do a culture on it and see.If he continues to have it and noughting comes back on the culture then they are going to do a gut biopcey.Because that could mean that the GVH is in his gut!So needles to say dad and I are having a hurler day!!
So please just pray for CJ that everything will be all right for CJ.He has came to far and to get sick now.CJ don't seem to be leting it slow him down any,so thats good.
I just pray to God that it is'nt in his tummy.They are just giving his steroid cream to rub on it now,but they said if in acouple of days if it don't start looking beter then they will put him on some steroids.Lets just pray that it works.
Well i am going to try and get some rest so when we find out i will let everyone know.
MANDY,JAMIE AND CJ

Tuesday, January 08, 2002 at 03:33 PM (CST)

TIME FOR A GREAT UPDATE!! (DAY +37)
Well we got some great news yesterday,
we got the results back on the DNA results
and CJ is 100% in grafted,wich means that all the marrow in his body is the donors.
The only test now that we are waiting for is the enzyme test to come back,but that takes about 6 weeks.That will tell us how much of the enzyme that Cj is missing,that he got from his donor.
Dr Peters told us yesterday that from past experience that he feels that CJ will have some of the donors enzyme since he is 100% ingrafted.
He said that he would'nt have what he was supost to right off ,but over time he should.
So now that we got another prayer answered,and we are so thankful for that too,so now we just have to pray for one more and that is to let him have the enzyme that he was missing.GOD has really been good to us he has blessed our family in so many ways.
We will never be able to let him know how thankful we are.CJ'S sickness has really turned my life around,and has changed how i see things now.I just want to thank each and everyone of you for all of your prayers
you will never know what it has ment to Jamie and I.I would like to ask you all for one more prayer,CJ and all of his little friends in the hospital on 4A needs your prayers also.We have really meet alot of nice people up here that understand what we are going threw,because they are going threw the same thing.
Well thanks again for everything.
HUGS AND KISSES
MANDY,JAMIE AND CJ

Saturday, January 05, 2002 at 09:58 PM (CST)

HI again to everyone!
Well it was a gloomy day for us,Paigey and Nana had to go home today.
So now its just us three again,and it looks like it's going to be this way until we come home.But maybe it won't be to long if CJ continues to do well and everything go's well then maybe we will get to come home in a couple of months..Well the DNA test they done to see whose marrow it is ,we will hopefully know something Monday so say an extra prayer! Well we are still having to check his bloodpresure a couple of times a day,thanks to UNCLE ROGER,PAT AND NATHAN for the GRINCH they gave him for christmas he lets us take it now with no problem.As long as Jamie puts it on top of his head and dances around while i take it,then he is fine.
Well we have got to go to the clinic in the morning for them to check and see if he needs any blood products.The doctor said she was going to try to get us on a schedule, so we can come on Tuesdays and Thursdays so we will see.
Well I guess I will go for now so we can get some rest,I will write later.

MANDY,JAMIE AND CJ

Thursday, January 03, 2002 at 05:09 PM (CST)

Hello again to everyone
Well CJ still seems to be doing good,and feeling fine.I think CJ has finaly got his appetite back now.He is constantly eating now.Andeating things that he did not like before,like eggs,olives,mayonnaise sandwiches.He don't like some of the things that he use to,like yogart,he still eats some cheese but not like he use to,and ice cream he don't eat alot of it either.And he loves coke cola now and sprite.
He is really trying to test us now since he got what he wanted in the hospital,he thinks he should now.He is wanting to bite and scratch and hit when you make him mad.And with nana here it is hard to correct him, as so last week with papa here.
But Im just glad he is here to test us.Well we did'nt have to go to the clinic today
so we just got out and took CJ for a ride so he would'nt be couped up in the apt.
all day.Well CJ's buddy is back RILEY we got to see him yesterday in the clinic.
Rileys go's into the hospital tomorrow and then his transplant is January 17th.
SO good luck to Riley and please pray for him also.
Well I will update later .
HUGS AND KISSES
MANDY,JAMIE AND CJ

Tuesday, January 01, 2002 at 10:59 AM (CST)

Happy New Year to everyone!!
Well I hope all is well with everyone back home,and every where else.
Well things seem to be going pretty good here,CJ seem's to be doing good.
We have been going to the clinic everyday since Cj got out of the hospital,and his potasium was still high,so they were thinking that one of the blood presure meds
could be why it was still high.Because what they thought was causing it which was the Bio Carbs are fine now,but anyway they took him compleatly off of the enalipril now and his potasium was 4.0 yesterday which is really good.
And everything else was good to so they gave us a day off today so we did'nt have to go to the clinic today,so that means a day of rest!!
Well papa Buford has gone home now and I really do think papa hated to go.
But I bet he will be back soon.
Nana and paigey is still here and we are really loving that.And we are dreading when they have to leave.But we are hoping that everything will continue to go well so it
won't be to long and we will be coming home as well.Continue to pray that all go's well.
Well I guess I will go,I will write later.

P.S. WE WAN'T TO WISH YOU ALL A VERY HAPPY NEW YEAR!!

HUGS AND KISSES
MANDY,JAMIE AND CJ

Friday, December 28, 2001 at 09:06 PM (CST)

Hello again to everyone
Well CJ got to come back to the apartment today,and seem's to really be enjoying
it.His blood presure is still a little on the hi side,so the put him on another blood presure med.So CJ is on two different med twice daily.His potasium is lower now and his BIO CARBS ARE A LITTLE higher now so that is good.We are trying to figure out why CJ only likes to drink when he is in the hospital,and when he is out we can't get him to drink that much.But maybe he will start drinking more soon.
We are going to have to get him to so he won't have to go back in the hospital.
CJ has really been a mirical, GOD has really blessed us.
GOD has really been good to us.He gave us the best christmas present ever.CJ.
We have also been blessed to have friends and family like you all.
We are hoping and praying that we stay out of the hospital this time.
The hospital stay this time was'nt bad this time either,when his nurses and everyone else herd CJ was back they all had to come up and see him.That felt so good to know that CJ touched them too.
Well I will write back later,and please if you read this ,sign our gest book.
We love to read what everyone says,it makes us feel closer to home.
CJ is happy because he has his PAPA BUFORD HERE AND HIS NANA,AND PAIGEY HERE (WELL WE ALL ARE HAPPY)
Well i will write back later.
WITH ALL OUR LOVE
MANDY,JAMIE AND CJ

Thursday, December 27, 2001 at 10:00 PM (CST)

HI TO EVERYONE,well CJ got put back in the hospital CHRISTMAS DAY,
because his potasium was high and they could not figure out why.
They think now that he was a little dehidrated and not urinating enough.
So they are having to give him something called bio carbs they say that if it gets to low then that can cause his potasium to go up.But they are saying that if things go well they might let him come back to the apartment tomorrow.He is having a problem with high blood presure.They have put him on another blood presure med, so that makes 2 he is on now.Well sorry i havent wrote in a while but things have been really busy.
Well I will write back later.
MANDY,JAMIE AND CJ

Saturday, December 22, 2001 at 08:00 PM (CST)

Well CJ got to come back to the apartment yesterday.
He was so happy,he went from room to room.The apartment was clean until CJ got here.He is doing good.I don't know about daddy and I,he has got so many medications ,and keeping all of them seperated is a job.He has 16 doses a day.
And all most every hour he is taking something.But it is so good to have him home.
We hope and pray that he stays out of the hospital.But if not thats ok.We just have to get him better.His counts today was 2800,so they are still going up.
Well Cj said to tell everyone hey,and he can't wait to get home and see everyone.
Cj can't stand the medication so he fusses and crys when we give it to him.
But he will get use to it.Well got to go it's time for another dose.
I will write back when I can.Keep praying for CJ.

Mandy,Jamie and Cj

Saturday, December 22, 2001 at 08:00 PM (CST)

Wednesday, December 19, 2001 at 11:00 PM (CST)

Hello again to everyone.
CJ is still doing good,his counts are still up and they seem to be rising.
We got Cj out in the hall today and he loved it.We pulled him in a wagon, he rode in a little car that you pull and he just walked around.Well we got some good news yesterday,they told us that we might get out by CHRISTMAS!!
Then they came back in today and said that they thought about letting us out SATURDAY,if everything continues to go well and no fevers! So please pray that everything go's well.The doctors said that they did not exspect him to do so well.
All of his therapist say he is doing so well.He has phisical therapy,speech,and ocupational therapy.They said when he gets home that they don't think he will need any therapy except for maybe once a month and that is to just see how he is doing.
So that is really good news! All CJ wants to do now is flirt.He flirts with all his nurses.
This week he has had his favorite nurses,they are the ones that spoil him rotten.
They let him have everything.Well I really do hope that we get out at least before christmas if not SATURDAY. And I hope we can keep him out of the hospital,at least for a while.I hope he does'nt have to go back at all.Well just remember they will do the test that tells who's marrow it is some time next week.
So please just remember to say an extra prayer for him.Well i guess i will be going so i will let you know the verdict when we find out when we get to go .

MANDY,JAMIE AND CJ

Dad's quote of the day
"Prayers That Prevail"

I have been praying my prayer a fathers prayer for many weeks.
Father God... we've been talking about your word and your
promises, and Lord I ask you to touch baby Cj Pace. I ask you in
the name of your own son, Jesus, to reveal your greatness and your
glory to us once again so that me and my wife can tell everyone of
your faithfulness. I ask you Lord to curse and take away every
thing that's not right in his body, any germ, any infection, any virus.
I ask you to make him well, FATHER GOD...
We're not worthy of an answer, but we come boldly because we're
asking in of Jesus Christ, and you said if we would ask we would receive,
and if we would seek we would find and if we knocked it would be opened
to us. So we're asking now, Lord do this great thing, and we'll praise
you forever and ever, for we ask in Jesus name. Amen...

Monday, December 17, 2001 at 10:54 PM (CST)

Hello to all of our readers,CJ has been doing pretty good the last 2 days.
He is starting to get his appetite back.CJ had a McDonalds cheese burger yesterday,he piged out on it.
CJ counts have been doing really good,yesterday his count was 600,today it is a1000. If his counts stay up tomorrow also,then he can go for a wagon ride and roam the hall tomorrow.He will love getting out of the room,if we can keep the mask on him.(THAT SHOULD BE FUN).And if things keep going this good then it should'nt be long and we can go back to the apartment.They are going to start trying to get him off of the food drip.They will just run it a couple of hours a day instead of 24 hours a day.So maybe that will make him a little hungryer so he won't depend on the drip.And there is still noughthing growing on his cultures,so that is good.They told us today that sometimes they run a fever when there counts go up.
Well at +21 days they will draw some blood to see who's marrow is growing.
So please just say a extra prayer that it is mostly the donors.That will be a week from tomorrow.So please just pray that GOD continues to bless CJ.And that CJ'S counts will just continue to rise.Well I got out of the hospital for a little while tonight
and went to the store with some of the other hurler mom.
It felt good to talk to them and to just get out.They both are really nice people.And there kids rooms are just a couple of rooms down from CJ'S.Well tomorrow is Jamies day to get out and do what he wants to do.Well I guess I will write back latter,and thanks again for all the prayers and everything else.

MANDY,JAMIE AND CJ

DAD'S QUOTE OF THE DAY
" Too often we neglect the
privilege of prayer until we encounter
suffering or difficulty"

Saturday, December 15, 2001 at 10:47 PM (CST)

Hey everyone,well Cj's count were 300 today.So maybe it will rise a little each day.
CJ was playing and having a ball all day today.About 8:00 tonight Cj started running a fever.They came and done cultures but we won't know anything on them for a couple of days.We are just praying that it is'nt anything,CJ has done to good to get sick now.So just please pray for him.But Cj is still playing and he's not acting like he is sick,so maybe it is just a fluke.The doctor that told his nurse to do the cultures
told her that when she done the cultures it better not be anything because Cj has done so well.He said that if it was something then it was her fault! (ha,ha)
Well just pray that it is noughting.I will write back latter.

MANDY,JAMIE AND CJ

Dads quote of the day

"No matter how dark and hopeless
a situation might seem, never stop
PRAYING"

Friday, December 14, 2001 at 02:27 PM (CST)

Well CJ is doing great today.Yesterday his white blood counts was less than a100.
But today they have went up to 200.That means that it is starting to work.
When his counts are 500 and stay 500 for 3 days he can get out of this room and
walk the halls and just roam.And when that happens it should'nt be long before he gets out and can go back to the apartment. Can't wait!
The doctors have fell in love with him,they say he makes them laugh!
The nurses have him spoiled rotten.What ever he wants he gets.
His nurse today is really spoiling him,he wanted her watch so he got it,he wanted her badge and guess what he got it too.We are going to have a hard time when we get out.He is going to think what ever he wants he should get it.

GOD has really blessed us.And i know that it is GOD that is helping him trough this.
When we first found out about CJ i was angry with GOD I could'nt stop asking why.
But now i see it as GOD gave us a very special gift,and I would'nt trade it for the world.CJ is a angel,and we are so thankful that he chose us to give this special gift too,we are so lucky.I would'nt trade this for all the money in the world.I will never take one day for granted that i have with CJ ever again.

JAMIE,MANDY AND CJ

Wednesday, December 12, 2001 at 01:08 PM (CST)

Hey everyone, theres not to much going on so far today.
CJ is sleeping so I thought I would try to write a little.
CJ is still doing good,the doctors came in and said everything was still going
smoothly.And he still looks and sounds good.His counts are still less than a 100,
but thats to be exspected.He has been a little wild man today,he is in to everything.
He has been trying to cut his IV off, he has been trying to get under the bed.
He grabed one of the nurses behind today and said (butt).Mrs.Claus and one of the
elves stuck there head in today and gave him some stickers.He really did'nt pay them much attention.He is still being CJ.Papa called and he is coming back next Wednesday,so we are all glad of that.
Well CJ just woke up so got to go.
JAMIE,MANDY AND CJ

Tuesday, December 11, 2001 at 10:16 AM (CST)

Well sorry I did'nt write yesterday, but it was one of them day's.
Cj's hickman line in his chest busted.So they had to put him to sleep again
to put a new one in.This makes the 3rd one.The last one cj pulled out.
He was in such a good mood when he was'nt attached to any IV'S.
Every time the door opened he went for it,he was getting out of here.
He had just started back eating and drinking the day before ,after this happened
he could'nt have anything because they had to put him to sleep.
So he had noughting from 11 until 9:30.They did'nt get to replace it until 6:30 and he got out of recovery at 9:30.And to add to that before he could go he had to have some platlets,so they had to start an iv in his foot.They had his foot taped to a board
so he could'nt get down to play so he cried all day long.
Besides all of that the doctors came in yesterday and said that he looked good. They also said that CJ was a little character and that they loved coming to see him because he maid them laugh and that he was so polite.
Well Jamie added some pictures if you want to check them out .
I will try to write tonight .Well thanks again for all the prayers.
LOVE MANDY,JAMIE AND THE LITTLE CHARACTER

Sunday, December 09, 2001 at 09:22 AM (CST)

I am starting this web page for my son.For those of you that do not know him
his name is C.J.
C.J is 19 months old ,he was diagnosed with HURLER SYNDROM at 12 months.
So we are in Minnesota now so C.J can get a bone marrow transplant.It is not a cure but it can slow the process down or even turn it around.Kids with what C.J has does not have a long life spand. It is usually around 10 years,and some even erlier.
But with this transplant if it is successful it can prolong his life and give him a better quality in life.With out it these kids usually stop walking,talking or even doing things for themselves.And we feel that C.J deserves the best life we can give him.
We are from South Carolina but Minnesota is the closest place that do the transplants for what C.J has.We were willing to go as far as we had to to save our little boy.When they told us that our little boy might not live to see his 10th birthday,
It was a feeling that I will never forget.When someone tell you things like that you start thinking about the little thing that you and myself take for granted .Like seeing them walk or talk and the most important to me is hearing them say ILOVE YOU MOMMY!
C.J had to go threw 8 days of kemo and 1 day of radiation,he got his transplant DECEMBER 4th at 2:30in the morning.So now we are just playing the waiting game.
It takes anywhere from 14 days to 21 days after to see if his blood counts come up,to see if is going to take or not.
Right now C.J is doing pretty good, he started running a fever yesterday,but they say thats pretty common.But any time there fever is higher than 100.5 they start doing cultures on everything and they take xrays of there chest.
So thats what we done yesterday.
The xray came back fine but the cultures take a couple of days.
C.J was up till 5:00 this morning eating ice,he is starting to get mouth sores so I guess it felt good.They think he has them in his tummy too.
Thats common too it is caused from the kemo.
We shaved his head last week ,we left a little bit but its starting to fall out now.
Jamie and I are fine we are just praying for a MIRICLE.We really have faith in God that he is going to give us one.But with out God we would not have made it this far.
Well i will try to update this at least every couple of days i will try everyday ,but im not promising anything.
Thanks for all the prayers,and just please continue the prayers for C.j
LOVE MANDY,JAMIE AND C.J

Saturday, December 08, 2001 at 04:15 PM (CST)

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