Latest Updates From Steven's Mom & Dad

 
Monday, January 12th 1998
Steven is doing well. We are working on getting him to eat still.
Even with the medications they have him on to get him to eat he still wont. He is very very board!! We sent a letter today to a local radio station to see about getting some songs he likes played. His favorite songs are Lean on me and I get knock down but I get up again, your NEVER GONNA KEEP ME DOWN! see Steven's links for the radio stations address! HUGS 

 
Friday, January 2nd 1998
Steven is much better!! Today was his clinic visit. He got his 
IV out. Now he can take a bath without worrying about getthing 
things wet that shouldn't be! He is so exicted. The down side 
it now he had to have his blood drawn and a Iv put in ever two 
weeks. He is not to crazy about that idea. He had a great new 
years day and ate black eyed peas!! We are going to get this 
year off to a good start. I Hope each of you have a Wonderful year this year. I know we will!! HUGS The Haley family
 
Sunday, December 28th 1997
We just got home from the hospital! :(
Tuesday the 23rd, right after I wrote that update Steven started
to run a high fever. We went into clinic and they did a culture
of his hickman line. Things were going crapy by Christmas eve 
he was running 103.8 temp under the arm. He was cranky and
feeling really bad. We did however get the temp down with
tylonal and had a great Christmas eve!!!! The next morning 
after the kids kept us up all night having a blast. 
I was just drifting off when the phone rang. It was Dr. Bowman.
He said that his line culture was possitive and I was to bring
him right in!! :( The kine would have to come out!! *ack*
So I did that brought him right in. Dr. Bowman started 
him on Vanco( antibotic) and then watched him. 
His fever hit 104.8 under the arm that night. 
Then it stayed up most of the next day and he got very sick.
Then they took out his hickman and did a back stick.
We got great news!! His bone marrow is clean!!!NO cancer and 
is working great!! The back sticks really hurt and his blood 
had to be drawn four times. This really stunk cause now we had
no lines to draw from!! *pout* Poor baby looked like a pin
cushion. Well then while we were getting ready to go home and 
he was looking better the doc came in and said " his last 
test was postive too!" That meant we couldn't go and he 
would have to stay another night. Well now that did it he 
didn't feel good and they said he would have to stay another
night of sticks!! He started to cry. I have a iv and can't move
my hand to color or do anything I hurt and I AM BOARD MOMMY!!!!
broke my heart. then this morning the doctor said Steven 
you wanna go home you look good today. Needless to say he 
said YES cause we are now home. We just need to keep his 
fever undercontrol and get him past this infection and he will
be ok!!! Dispite the hospital stay he still had a wonderful
Chirtmas!! I hope you all did too!!! and HAPPY NEW YEAR...what
a way to start cancer free!!!!!! smiley faces the Haleys
 
Tuesday. December 23rd 1997
Steven is doing really good right now! He is starting to
look like himself again. We are working on getting him off 
some of the meds he is on. They are steriods so we are 
trying real hard to get him to eat. The doctor said now 
there is only a 1 in 5 chance that the cancer could come 
back!! We have had a outstanding month. Tuesday Kmart 
treated him to breakfast with SANTA. Then they gave each of
the boys a toys and stockings. After that they gave them 20$
and said the boys could use the employee discount!!! The kids
had a blast!! Thursday The H.O. clinic Threw a party and
Wendy's brought the food!! Kids even got frosties! They
handed us a free phone card at the door coming in and kids
got presants going out!!Then they had lots of crafts for 
the kids. Friday was my husbands company party
( casino style)!! Didn't get home till 4 am!! Steven got
to stay at Grandmas house!! Saturday we went up in a 
hellacopter, to look at Christmas lights!! Ross Perow
Donated his hanger for the kids to use!!! The kids 
cleaned up there too with Santa,toys, stockings, face 
painting, balloon animals,petting zoo and much much more.. 
Over 1000 critically ill kids showed up!! Then Sunday we 
had a Party With A Wish With Wings. They got to ride on 
a fire truckwith Santa, Mrs Santa, Frosty, Raggady Ann, 
and Rudolf! I tell you these kids are getting spoiled!! 
I hope you guys get spoiled this year too!!!
HUGS and HAPPY HOLIDAYS
Steven's family!!!!!

 
Sun. October 18th 1997
Steven is still doing well. We are still having trouble 
with the GVH. It seems as though most kids are off the 
meds by now that steven is still on. He is however really
 doing good in other area's. We  had a little scare with
bone pain again, but I am sure it is just me worring. He
 has been playing and running around!!! He is very excited 
about halloween. He is going to trick or treat the hospital.
 He is going to be the new Robin this year!!! Douglas is 
going to be Darth Vader. Steven wanted to be Yoda but we 
couldn't find a costume we could afford. Michael is going
 to be what ever mom throws together at the last sec 
*LOL*

Wed. October 1st 1997
Sorry it is getting so long between updates guys forgive us!! 
:) GOt great news though!!!!!!!Steven is in Remission!!!!!!
He had a back stick this past friday! It went fairly well
he needed tubs in his ears because he was showing a huge 
hearing lose so they did it all at one time!! Steven can 
go to places now that he couldn't before. He can go to out door 
events (if he doesn't touch anything) and events that have
our H.O. families there. His on the good side his 
bone marrow showed him in remisson but on the negative 
side it is still very very surpressed and may take time
to get going. We got to go to our first Public thing this  
weekened! Steven went to a air show that helped raise 
money to give to A WISH WITH WINGS inc. Steven had fun and
they took him up in one of the old planes!!! HE did get 
over heated though and had to go home. This MOnday he went
to a celeberty golf ternament !! HE got soo spoiled!!!
They picked us up at the hospital in a carter bus that was soo 
fancy!! It looked like the inside of a limo!! Then Crazy Ray
played with the kids while we rode over there. He was
a doll!!!!! HE really made the kids laugh(there were 11
kids there, all our kids) then we pulled up in front 
and Pudge Rodregus met us inside the bus with his 
wife and son! They were soo sweet!! when we got of the bus 
it was like being famus ourselves! 
The cameras were flying!! There was even a red carpet!! 
This was truely for the kids!! The celebarties out numbered
the kids and gae them tons of special attention!!!The kids 
got all kinds of gifts like 7 shirts, a 
pair of shorts,a back pack,a watch,a pin,a towel,two hats,
bummper stickers,two cups,a picture signed, a base ball,and
much much more!!!! The kids got everything signs and then 
some!!! By everyone there!!! It was great!!!! They even gave
me get a shirt for my baby at home and got it signed!!
Douglas Stevens Big borther got to go and got the 
same things!! Then Steven was sword fighting with Pudges 
little five years old(he was a doll) It really warmed my heart 
to see they were just people like us! We had many group 
shots done I think Steven will be in a realastate magazine 
I am not sure which one or what all did stories on it! it was
great! Then they feed us lunch and played golf with the kids. 
I really fell this was a wonderful weekened and wanted to 
give special thanks to Pudge and his family for doing this
for us!!!!! THANKS PUDGE!!!

 
 
Mon. August 29th 1997
Steven just had his apt. with Doctor Bowman. He is doing good and
the odds of the cancer coming back are now one in five!!!!*yeah*
Now we just keep him for getting sick and rejecting and we will be Just fine. After five years the concerder him cured! well, at his 100day mark they are going to do a back stick. :( this will tell us if he is still in remission. We hate those they hurt soo much!! Well we are
on day "71" post transplant. We are getting there! Keep praying thankyou!!!hugs BABYLIZ


Mon. August 25th 1997
Well it has been a long time but I am back on the net. Steven is doing good.We had a round with GVH(like rejection) and had to be put on Iv steriods but
he is back on oral steriods and doing better. He looks like tweety bird his face is swollen
and he has a long huge eye brow from the steriod side affects. They said it will go away 
after we get him off the steriods. He is feeling good! Playing and running around. He only has to have hi
Iv once a week for IVIG(a drug to build immune system) HE just started kindergarden(home bound). Steven 
can write his name now!! soon to have art work by him on here!!! He is eating a drinking better
and looks healther. He says hugs and smiley faces to everyone!!

Tues. July 29th 1997
I am sorry it took me so long to update everyone!! Alot has been going on.
To start We are HOME!!!! Steven had a great BREAK-OUT PARTY.
He had Pizza and cake! It was Star Wars of course!! He has whatched those movies over and over and over!!
Steven has been home and playing!! He is feeling better too!! Although the risk of
GVH is still high it feels good to be home! Steven gets IVIG every Tuesday.
This is to help build up his immune system. He wont be able to go places for a long time.
He has along way to go!! We need to get him eating. He isn't and may have to go back on tpn's.
He was getting IV fluids, But I think he still will be. We have a apt with the doctor tomarrow!!
I had a scare with mumps and couldn't come home with Steven. Turned out to be something wrong with 
my salvtory glad. Now I am home a getting back into the swing of things! PLEASE everyone
the wonderful lady that keeps up this page just lost her mother in law to cancer!! She is VERY 
special to me!! Could you all say a little prayer for her!!! Give me some time I will do my best to start 
going through all the e-mail!! I haven't forgotten ya'll!! AS a matter of fact having all the prayer and love
and support my net friends have shown has really pulled me through this THANKYOU!!!!!!
 A VERY SPECIAL THANKS TO THE MAN THAT SAVED STEVENS LIFE BY GIVING HIS BONE-MARROW!!!!!!!
 

Tues. July 8th 1997
 Well Today is a GREAT day!!!!!! Today is not only Steven's daddy's
38th Birthday , but We found out  STEVEN is coming home!!!!!! They are taking 
him off his Tpn's(IV food) today and Starting him on oral meds. The
things we are whatching for now are GVH, High blood pressure, infections,and
cancer. He is getting a back stick tomarrow. *ouch*:0( His counts are way above 
average at this stage. I feel like all the prayers are really making a 
difference!!!!! The doctors said at this time Steven is doing far better then most.
Please don't stop praying we still have a long road ahead. We need to 
make it past the Gvh(like rejection) and keep the cancer away! The Gvh scare I have heard can be up to a year
but I am not really sure. They cancer is 5 years to cure. Pray really hard!! Steven is tired and 
needs to rest! We are hoping to take him to Destine then Disney next year sometime. It will be at least a 
year before his immature immune system works good. Till then we will be at home alot!(Much better then being at the hospital though)
Steven has been playing basket ball behind his bone marrow room by the nurses station.
He looks so cute! Says he is like Michael Jorden!His break out party will be Thursday. We are having a Star Wars Party!!! He is a 
Star wars Nut. He has most of the movies memorized. Yoda is his favorite guy! Friday will be our first clinic visit post transplant.
I am sooo scared.......I wanted to let everyone on the net that has been helping us know that:  You  got us through this, 
being isolated for friends and family for so long was made bearable with the help of wonderful
people on the net taking time to pray, give blood(life), donate marrow(life),send letters,post cards,packages, make home pages for him and phone calls.
YOu can make a difference in a persons life....Look at my Steven!!! HUGE HUGS AND THANKS!!! Steven's mommy Babyliz

 
June 2, 1997

Today is the big day!!We are going in for our transplant! It will
take a few months before Steven and I are home.(hubby will still be here 
with our other kids though.) I won't be on for a while so I would just 
like to say to all our friends and supporters, THANKYOU for all the
prayers, cards and gifts!! They really lift our spirits!I would 
also like to thank the ones that went to have there blood tested 
to give the gift of life!!!Steven has a doner but, please don't 
stop getting people on the bone marrow registry there are so
many kids passing everyday because nobody matched them! You may be
there only hope! We have been getting so many e-mails that it is hard 
to keep up. If we have not answered you yet I have my hubby on the 
job (keeps his mind busy*wink*)It may take some time things are 
going to be ruff for awhile. 
If you want to write Steven Please send stuff to: 

Steven Haley's room
c/o Cook-Ft. Worth Children's Medical Center
801 7th Ave.
3 north 3007
Fort Worth, Texas
76104-2796

You can call 817-885-4000 and ask for Steven's room 
You are all Special to us and will always be in our hearts!!!
THANK YOU so much!!! HUGS and Smiley faces Trevy(aka Steven's mommy)
    
 

Mon 26, May 1997
    Well Steven is home. He is on Breathing treatments 
& Two different I.V.'s Ampho-B(and aniti-fungle)and Timentin (antibiotic)
He had a fungle pneumomia. This is very serios and can be life threatening 
if it comes back in transplant.
 
We have a doner!! A perfect match! Can you believe that?? Right down to the DNA!
Now all we do is wait to see if he passes his physical. Although it would be
devisating to us for him not to pass I feel he is already our Angel. He is a 
really special guy to go through this for us!! All we know about him is that
he is a 48 year old male and he is saving my son life! We will find out Wednesday
if he passed his physical. I pray he does. If he does and we can get Steven's lungs
healthy then we will go to bone marrow on the 2nd of JUNE!!!!
 
Pray really hard it is getting close!
   Steven is home right now and feeling pretty good. HE goes in tomorrow for a 
back stick and a x-ray of his lungs. I am a little worried because he still has a cough,
but he is still fever free and that is a good sign. We have nurses that come out 
once a day for 4 hours and watch him, but he is board! He is pinging off the walls.
His brothers are sick and had to go stay with Aunt Sunshine. This mean NO play mates.
He misses the hospital(can you beilive that??) He says there are kids there to play
with but he doesn't like that sick part! I am so proud of him he is taking all his
meds just like a big boy!

Thanks again to everyone that is there for us in prayer and all the cards and gifts!!!
They really do make it easier!!
HUGE HUGS,
Your friend,
BABY LIZARD

Friday 9, May 1997

Well Things didn't stay good long Steven got a fever back and had to go back
in the hosptial. He is still having trouble with his loungs. They said it
would be at least Tuesday before he could go. I needed a break so Danny is
up there with him. He is in room 3010. I am going in the morning. It is nice
to see the other kids, my baby Michael and Douglas.  They were really clingy
today. It has been two weeks since I have even got to see the baby. He was
sick so we had to send him to grandma's and his Aunts house. That was really
hard. I really missed him. Our e-mail has changed for everyone who doesn't
know yet. Please give us extra prayers tonight hopefully we will find a
doner soon and we will be closer to the end of this night mare. Sorry a
little moody tonight. Would like to thank everyone for all the gifts cards
and letters!! Steven really LOVES THEM!!!! He is doing good right now he
said"I love going to the hospital, It's FUN.....Well except that sick part"
Really well put huh?? The love we get really helps the tuff stuff more
bareable. He will be having a back stick Friday. It maybe earlier if he is
still in the hospital.  That will tell us if the cancer is still out of
control and needs more chemo, if not then we just wait for the doner. I am
praying with all my heart the doner is here soon! HUGS and SMILEY FACES
(that is what Steven says.....) Steven's mommy

Thurs, 1 May 1997
Steven is doing poor today. I think he is starting to to feel the 
effects of the chemo. He had a low grade tempature this morning.
I gave him tylenol and some tavist-1. He is really congested and crabby. He is sleeping really heavy,
we are hoping that when the tylenol wears off he doesn't spike a 
high temp. I am trying to keep it down cause he has gran mal-feveral sezsours. 
I am praying he has out grown them. The doctors think he could. We got the neetest
news yesterday. The Wish with Wings said someone made a donation in Steven's honer!
That was sooooo sweet!!! Well, I will update you later today.
HUGS Trevy
Here is the hospital and room number where Steven is now!

Cook-Ft. Worth Children's Medical Center
801 7th Ave.
3 north 3007
Fort Worth, Texas
76104-2796
you can call 817-885-4000 and ask for Steven's room
 

Friday,18 April 1997
Today is a sad day for us who pray for Steven!

I just got off the telephone with Baby Lizard (Trevy). She informed me Steven had a hickman placed 
in his heart yesterday. He also had another bone marrow test. The test came back with some 
shocking results. Steven's white blood count is progressing rapidly and so are the cancer cells. 
He will be hospitalized next Tuesday the 22nd day of April for massive blasts of Chemo Therapy. 
Through this therapy they are hoping to keep him going until they have found a bone marrow donor that matches.
Right now they have 4 possible matches. They are waiting for the foundation to contact these possible donors. 
Now we are in a waiting game. Steven has to wait and hope that time will be on his side. 



Email Steven at:babylizard@earthlink.net


Snail Mail cards and prayers to:
Dan, Trevi, Steven Haley
612 Blevins
Fort Worth, Texas 76111

Steven and his family need all the support, prayers, and donors that are possible.


"Pray for our Children. They are GOD'S Gift for the future" 

Tues, 8 April 1997

  Well it is official: Steven is having a transplant. It looks as though
they are hitting him with everything they can. He will have full body
radiation and chemo. They are hoping to give him a cord bloodbone-marrow
transplant(from a umbillical cord of a newborn baby)or a straight to bone-marrow transplant.

Right now our family is working on increasing the bone-marrow donors in the registry.
We ask for your prayers and help in getting as many people to become life saving donors
as possible. Our goal is 2000+ donors. To help fund, join or start a bone-marrow drive 
if you live in the Dallas, Fort Worth area call 817-885-4019, or 1-800-643-2448 - fax: 817-336-2136
and ask for Vickie.

     For information on the national registry (USA) you may call 817-885-4019, 817-885-1409, 
or 1-800-643-2448. All others please contact your local hospital for information on how to start one in your area.
The average cost in the USA is $65. However it is normally FREE during drives for minority donors.
If the drives are sponsored then the all donors can be tested for Free. We are hoping to raise enough
money to help our donors do this for "Free"! Please spread the word as quickly as possible.

     Everyday, children and adults are dying while waiting for the perfect match. *YOU* could be the one who
could offer another the gift of life! Please ask your family, friends, co-workers and even employers.
They may be the link to a sponsor or even the perfect match for our little "Angel" fighting for his life! 

     Steven loves cards, e-mails and letters.

Thank you,

The Haley Family

Wed, 21 March 1997

     Steven had his blood test this month and it looked good! He 
will be going in to have his bone marrow checked
on the 4th of March. We hate those they really hurt. :( He is 
such a tuff little guy. We are so proud of him!
Still haven't gotten our pictures processed from Disney, you 
know the money thing. Soon as we get them, I will make a huge page
for you all to see! Keep praying... :)

                                            HUGS BABYLIZ




Fri, 29 Jan 1997

     We just got back from Disney World! They spoiled us rotten! 
The Dallas cowboys Limo service picked us up in a white super-streach and took us to the airport!Our limo driver treated us just like royalty.
Then American Airlines spoiled us! Kim our wish coordinator took us in the cockpit to meet the 
Captain and crew(she took lots of pictures. Budget rental car loaned us a bran-new white
Tarus. It was pretty. Then off to Give Kids the World. It was beautiful! GKTW looked just like Disney itself!
We got there and they gave Steven a Mickey doll and fed us dinner! 
We ate all our meals in a ginger bread house with other Wish families. The volunteers did everything for us! Our house was just that a house! Washer,drier,dishwasher,dishes,frig stocked with food,and much more!
They gave us tickets to ANY local attraction.....DISNEY, MGM, EPCOT, UNIVERAL, SEAWORLD, AMC, KING HENRY'S, MEDEVIL TIMES, AND MUCH MUCH MORE....
There was so much to do that we could not do it all! We had breakfast with Goofy,Pluto,Yogi and Booboo. Then had dinner with Santa and the mayor of GKTW Mayor Clayton(HUGE Rabit and His magic friend).
Right before we left we had our pictures done with Mickey and minny!Also, at a Party for the Mayor we met Goofy,Pluto,Belle,Mary poppens and had so much fun! They had a Arcade that didn't cost anything to play.
A marogo round in a huge mushroom. Talking clown trash cans, a Ice cream caboose, heated pool, and soo much more. They rented us a camcorder and even fixed the tape up for us. They gave us film, 8x10 of our pic with 
the mickey couple. But the coolest thing the kids liked was they put a gift in our room for each of the boys to find every night when we got home.
Mayor Clayton(The big bunny and magic friend) tucked the kids in bed....
aka fluffed pillows ect....I can barely explain how wonderful this trip was and How much it ment to our family! I can Thankyou!!!! 
Please stand by for LOTS of pictures!!!! thankyou for everyone helping make this so special! It was all the little things that made it so memorable!

                                 HUGE HUGE HUGS Trevy and Danny



Fri, 13 Dec 1996

*****STEVEN IS IN OFFICIAL REMISSION*******
     Even though there is still a 70% chance of him coming out this is 
GREAT news! Please don't stop praying!The first year is the most important!

                             HUGS BABYLIZARD!!!(Steven's mommy)



Thu, 14 Nov 1996

  Steven is doing great today(11-14) and is running around the house gettinginto things! I think we got through this round of chemo without any bigproblems! He will go in (in a few weeks) for a bone asperation that shouldtell us if he is in FULL remission. I am sure it will be!! Then in a fewmonths after his blood counts come up real good they will do a bone marrow
harvest for emergancies. In January we will be off to Disney!!!*yeah* When we get back it will be almost time for Steven's Birthday! He will be 5!!*January 27th* We are going to have a HUGE Party! In December the wish with
wings is going to take us up in a hellecopter to look atChristmas lights!!We are very excited! Then they are going to have a special Christmas partyfor the kids! I am sure the hospital will do stuff so Steven should get spoiled this year!! HUGS to everyone that keeps us in their prayers and
you'll be in our hearts!


                            BABYLIZARD(Steven's mommy)



Monday, 4 Nov 1996

Steven is doing good right now. We are a week and two days off chemo. The
chemo can hit at anytime now. We are still fever free which is a great sign.
We went in for blood counts this morning and they were falling. This is
expected though. He is a little crankey and woke up with a nose bleed. He
got a platelets transfusion.  He is home again and we are just waiting right
now. His hair is growing in in spots and he looks like a dalmatian puppy. He
went as a Blue zeo ranger for trick or treating. They had a thing at the
hospital for the kids that can't be around people. It was FUN! He had a
BLAST! Some of the nabor kids toke a bag around for him so he got loads of
candy! He is still eating and has been doing a great job keeping it down,
that was a relief. We are at 38 pounds! Thankyou again everyone for all your
prayers They really do help!!

                                      HUGS BABY LIZARD


Wed, 23 Oct 1996

   Well, Steven is doing better today then yesterday. He got a teddy bear 
for his Back poke(they give the kids a toy after every ruff poccedure.) He
looks so sweet Laying there sleeping with the teddy. I tolk a picture and 
will try to get it on the net soon as I can.  I came home for a quick shower
and wanted to fill ya'll in. Please let everyone know!  I haven't updated my
nick name list since the BIG crash!(:0) So couldn't tell all my friends and
don't have time.


                                HUGS BABYLIZARD



Mon, 21 Oct 1996

     Well today is the BIG day!! The last round of chemo!!! I am so scared 
will you please ask everyone to pray extra hard tonight!! He will get a
back poke too. {{I hate those!!!}} We should be home sunday. Because
of money reasons we lost our other phone line(for the computer).  We will
still be coming on though. This is the round that makes him sick!  :( 
Thankyou everyone for your prayers.

                                                   BABY LIZARD



Tue, 08 Oct 1996

      Steven went back to the hospital on Monday, he has a temperature.Today, Trevy called me at work and ask me to bring Steven's halloween costume up to the hospital.His temp had dropped =0) and there was to be a halloween party and trick or treating later tonight. Well I get there and delivered the costume:a Billy Power Ranger, and his temp was back
up. =0( Well later tonight Trevy calls and wants me to find the camera she wants to take pictures of him at the party!!!! :) So iguess he willgo, but he will be wearing 2 masks. A sterile mask under his "Billy"one.*s*Thanks to all who have been there for us and continue to be there forus, and all who will be there for us no matter the outcome of Stevie's 
situation. Bless you all. Will try to update asap.
                                    Stevie's Daddy (danny)




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