History

Journal History

Tuesday, July 6, 2004 9:02 AM CDT

Jordan’s Foundation for Neuroblastoma Research”, is named after
the late son of Don and Cheryl Luke. Jordan died of Neuroblastoma
cancer in 2004. The Luke family has created this Foundation in his
memory and in recognition of the ongoing fight against this rare and
deadly disease.

Our first event is underway and we are very excited to have “Lennar”
as our Title Sponsor! The funds raised through this tournament will
support Texas Childrens Hospital, cancer research centers mission
to save lives and reduce suffering through improved treatment in
search of a cure.

The Jordan Luke Memorial Charity Golf Tournament will be held
at Kingwood Country Club on November 3, 2004. With additional
support from the Texans Football Cheerleaders, The Re/Max
Realtors, hot air balloon, Lowe’s, Nike, News Media and many
others! We are expecting a turnout with as many as 360 players
and have secured three 18 hole courses in Kingwood. There will
be an opportunity for a “Hole in one” car on each course, as well
as lunch, prizes, dinner, silent and live auctions. All donations will
be recognized through inserts in the events programs, tournament
signs and announcements.

We encourage your support and together, we will continue to make a
difference in the fight against childhood cancer. Thank you for visiting
Jordan’s website. Here you will find other links to children across the
world with this deadly disease, as well as hospital links for a better
understanding of Neuroblastoma, a rare childhood cancer.

Warmly,

Cheryl Luke, Director
Jordan’s Proud Mommy

All donation's are payable to: Jordan's Foundation for NBR
2502 Walnut Knob Court
Kingwood, Texas 77345

Tuesday, July 6, 2004 8:46 AM CDT

“Jordan’s Foundation for Neuroblastoma Research”, is named after the
late son of Don and Cheryl Luke. Jordan died of Neuroblastoma cancer
in 2004. The Luke family has created this Foundation in his memory and
in recognition of the ongoing fight against this rare and deadly disease.

Our first event is underway and we are very excited to have “Lennar” as
our Title Sponsor! The funds raised through this tournament will support
Texas Childrens Hospital, cancer research centers mission to save lives
and reduce suffering through improved treatment in search of a cure.

The Jordan Luke Memorial Charity Golf Tournament will be held at
Kingwood Country Club on November 3, 2004. With additional support
from the Texans Football Cheerleaders, The Re/Max Realtors, hot air
balloon, Lowe’s, Nike, News Media and many others! We are expecting
a turnout with as many as 360 players and have secured three 18 hole
courses in Kingwood. There will be an opportunity for a “Hole in one”
car on each course, as well as lunch, prizes, dinner, silent and live auctions.
All donations will be recognized through inserts in the events programs,
tournament signs and announcements.

We encourage your support and together, we will continue to make a
difference in the fight against childhood cancer. Thank you for visiting
Jordan’s website. Here you will find other links to children across the
world with this deadly disease, as well as hospital links for a better
understanding of Neuroblastoma, a rare childhood cancer.

Warmly,

Cheryl Luke, Director
Jordan’s Proud Mommy

All donation's are payable to: Jordan's Foundation for NBR
2502 Walnut Knob Court
Kingwood, Texas 77345

Monday, May 10, 2004 10:38 AM CDT

It has been a while since I have posted anything on Jordan's website.
We love and miss Jordan so much, but we are trying to move forward
with life. We are also trying to live in Jordan's beautiful spirit. We cry
every day and want him back, but we know we can't have him back.
All we have his our baby in our hearts. And that will have to be enough.

We are in the process of establishing Jordan's Foundation to help find
a cure for Neuroblastoma! It is a very deadly disease and because 500
children in the world each year are diagnosed with it, there is not much
funding. It's all about numbers. Very sad and very true. I would like to
create more awareness, understanding and financial support for this
horrific, deadly, painful disease! Did you know there is a simple urine
test that can be given at birth to check for this deadly disease? Since
there is only 500 children each year that are diagnosed with it, the
urine test is not cost effective! If it is caught early the cure his high!!!
Unfortunately, it is almost always discovered at stage 4, the worst.

I was reading another website this morning and came across this and
wanted to share it with others! I hope it helps and gives you the ability
to not shy away from families who have lost a child, for whatever reason.
______________________________________________________

What do we wish others understood about the loss of our child?
Here is a partial list of such wishes:

I wish you would not be afraid to speak my child’s name. My
child lived and was very important and I need to hear his name.

I wish you wouldn’t feel awkward if I mention his name. If I cry
or get emotional if we talk about my child, I wish you knew that
it isn’t because you hurt me: the fact that my child died has
caused my tears. You have allowed me to cry and I thank you.
Crying and emotional outbursts are healing.

I will have emotional highs and lows, ups and downs. I wish you
wouldn’t think that if I have a good day my grief is all over, or if I
have a bad day I need psychiatric counseling.

I wish you knew that the death of a child is different from other
losses and must be viewed separately. It is the ultimate tragedy
and I wish you wouldn’t compare it to the loss of a parent, spouse
or pet.

Being a bereaved parent is not contagious, so I wish you wouldn’t
shy away from me.

I wish you knew that all the “crazy” grief reactions that I am having
are in fact very normal. Depression, anger, frustration, hopelessness,
the questioning of values and beliefs are to be expected following the
death of a child.

I wish you wouldn’t expect my grief to be over in six months. The first
few years are going to be exceedingly traumatic for us.

As with alcoholics, I will never be “cured” or a “former bereaved parent,”
but will forever be a “recovering bereaved parent.”

I wish you understood the physical reaction to grief. I may gain or lose
weight, sleep all the time or not at all, lose my short-term memory,
develop a host of illness and be accident prone, all of which may be
related to my grief.

Our child’s birthday, the anniversary of his death, and the holidays
are terrible times for us. I wish you could tell us that you are thinking
about our child these days and if we get quiet and withdrawn, just know
that we are thinking about our child and missing him terribly.

Please understand the I am not the same person I was before my child
died, and do not expect me to "get back to my old self". I am forever
changed, but if you give me a chance, you may find that you like the
"new me".
_______________________________________________________

Love to All!
Don & Cheryl

Jordan's Rules: Let your children sleep in your
bed, let them make messes, have more patience,
don't take anything for granted and tell them
you love them all the time.

"Jordan's Foundation for Neuroblastoma Research"
2502 Walnut Knob Court
Kingwood, Texas 77345

Friday, April 16, 2004 2:19 PM CDT

It is with great sadness that we share with you that we
lost our little boy Jordan Alexander Luke on April 14,
2004 at 2:42 am. Jordan was at peace and in his fathers
arms. He fought a long, hard courageous battle with
Neuroblastoma Cancer which he could no longer sustain
the strength to fight.

Jordan Alexander Luke was born June 18, 1999 and
has been the pride and joy to us for all of his days.
He brought more love and happiness to our family
then most people will have in a lifetime. He will be
greatly missed by many, especially his family.

The Memorial Service will be held at:

Strawbridge United Methodist Church
5629 Kingwood Drive
Kingwood, Texas 77345

281-360-4500

April 17, 2004 at 11:00 am

Flowers are welcome and donations can be made
by check to "Jordan's Foundation for Neuroblastoma
Research"

You can leave your donation in a basket at the church
or mail it to: Jordan Luke
2502 Walnut Knob Court
Kingwood, Texas 77345

Love to All!
Don & Cheryl

Jordan's Rules: Let your children sleep in your
bed, let them make messes, have more patience,
don't take anything for granted and tell them
you love them all the time.

Friday, April 16, 2004 8:37 AM CDT

It is with great sadness that we share with you that we
lost our little boy Jordan Alexander Luke on March 14,
2004 at 2:42 am. Jordan was at peace and in his fathers
arms. He fought a long, hard courageous battle with
Neuroblastoma Cancer which he could no longer sustain
the strength to fight.

Jordan Alexander Luke was born June 18, 1999 and
has been the pride and joy to us for all of his days.
He brought more love and happiness to our family
then most people will have in a lifetime. He will be
greatly missed by many, especially his family.

The Memorial Service will be held at:

Strawbridge United Methodist Church
5629 Kingwood Drive
Kingwood, Texas 77345

281-360-4500

March 17, 2004 at 11:00 am

Flowers are welcome and donations can be made
by check to "Jordan's Foundation for Neuroblastoma
Research"

You can leave your donation in a basket at the church
or mail it to: Jordan Luke
2502 Walnut Knob Court
Kingwood, Texas 77345

Love to All!
Don & Cheryl

Jordan's Rules: Let your children sleep in your
bed, let them make messes, have more patience,
don't take anything for granted and tell them
you love them all the time.

Thursday, April 15, 2004 10:36 PM CDT

Monday, April 12, 2004 11:48 AM CDT

Well it wasn't the Easter I ever imagined having. Last
year Jordan went on an Easter egg hunt and had no
evidence of disease at the time. This year Jordan was
feeling terrible. He slept and moaned most of the day.
So it was mostly sad. Mom, Dad, Lynn and Rusty came
over for an early dinner which was very yummy! Jordan
just really felt bad and you could feel the sadness and
the void in the air. We are all just devastated.

Today has started the same way yesterday did. Tired
and sad. I am hoping that Jordan will wake up around
noon and want to interact with his aunt Lynn, his Nina,
his Poppy and me!

Everyone is amazed at Jordan. The medical staff does
not understand how Jordan could still be with us, taking
low dose of pain medication orally and interacting. It is
because of this: His will to live and two Natural Health
supplements. HE ASKS FOR THESE! One he calls the
brown medicine and the other is the green medicine.
This is all he takes in and it does not taste very good
either! There is no doubt in my mind and my husbands
that they make him feel better and that's why he asks
for them!

The brown medicine is called, "The Herbal Answer",
Organically Grown Plants Bio-Protected. It promotes
optimal functioning for the Digestive/Gastrointestinal,
Elimination/Detoxification of liver, skin & colon and
the Immune Systems. It naturally cleanses on a cellular
level throughout all the body systems and tissues in the
body. It re-natures the cells, tissues, glands, organs and
all systems of the body to function as originally designed.

The green medicine is called, "Chlorophyll" uniquely
formulated into a isotonic solution. This solution is
similar in it's osmotic compatibility with human blood.
It delivers oxygen!

After Jordan gets his medicines "That he asks for!" you
can see the difference it makes. He peps up and has
some energy. We will continue to give him what he asks
for and nothing more. These supplements along with
some others were provided to him by his brothers mom!
Wendy owns a couple of Health Food Stores in New York.
Thank You Wendy for giving Jordan life!

That's all, I need to tend to Jordan! Should any one like
more information about the health supplements, please
let me know!

Love to All!
Cheryl

Jordan's Rules: Let your children sleep in your
bed, let them make messes, have more patience,
don't take anything for granted and tell them
you love them all the time.

Thursday, April 8, 2004 3:36 PM CDT

Just a quick update!

Dad and Paul are out of the hospital and at home with
there families. Jordan is still home with us too. He is on
oxygen 24/7 and sleeps several hours out of the day.

He is very thin and weak, but he can still tell us he loves
us for eber and continues to be the boss here at home!
He is a very nice about it though. He continues to say
"thank you" and "no-thank you"

It hit me last night, hard! I can not even explain that.

Have a Happy Easter and kiss your babies!

Thank you all for your love, prayers and continued
support.

Love to All!
Cheryl

Jordan's Rules: Let your children sleep in your
bed, let them make messes, have more patience,
don't take anything for granted and tell them
you love them all the time.

Sunday, April 4, 2004 12:53 AM CDT

Well all is okay! My dad is in the hospital receiving the
medication to dissolve the blood clot and he is doing just
fine. As long as there is a TV so he can watch the news,
sports and the stock market, life is grand! As for Paul,
his surgery to place the stint was successful and he is in
recovery. He called my dad from Seattle and they began
exchanging their battle wound stories. Dad and Paul
should be out of the hospital early this week! Jay's
test results are still pending.

Now for my beautiful baby boy, Jordan, he is hanging
in there, sleeping quite a bit and he does not want to
go. He is truly an amazing child and I wish so bad that
I could fix him and give him what he really wants, LIFE.

It's a beautiful day outside so I think I will spend it in
my bedroom with Jordan!

Thank you all for your love, prayers and continued
support.

Love to All!
Cheryl

Jordan's Rules: Let your children sleep in your
bed, let them make messes, have more patience,
don't take anything for granted and tell them
you love them all the time.

Friday, April 2, 2004 2:56 PM CST

Jordan is having a nice long nap, so I though I would
let you know what's going on. Jordan is holding his own
for now and I take pictures of him sleeping! I love them.

For the rest of the family, my dad is at the hospital
as of this morning. Not too big of a deal. He has a blood
clot in his leg and they will have to give him medication
through IV to dissolve the clot. Should take a couple of
days. Then Candace, my sister in Seattle, her father in
law "Jay", is also at the hospital on an outpatient basis

getting some test run on his Thyroid. We are not sure
what is going on with him. And very dear friends of our
families, "Paul", is in the hospital having another stint
put in his heart!

So I think we should all have a party to celebrate these
events, as they represent the ability to continue with life.

I love my family and extended family so much, they are
just good people and I am very grateful to have such a
wonderful family!

Please pray for the outcomes of our upcoming events to
all be successful!

Thank you all for your love, prayers and continued
support.

Love to All!
Cheryl

Jordan's Rules: Let your children sleep in your
bed, let them make messes, have more patience,
don't take anything for granted and tell them
you love them all the time.

Wednesday, March 31, 2004 4:27 PM CST

There have been so many things that have happened
since the last update, I don't want to remember
to clearly right now! We are also at a very private
point in our journey with Jordan. I know many of
you read Jordan's website with hopes of any update
and I am very sorry I have not had the ability to do so.

As for now, Jordan is still with us. He is sleeping most of
the time and continues to communicate with us a little
bit. We can still exchange "I WUV YOUS" and his pain
in under control. However, he did leave us briefly three
times this past weekend and came back to us, on his own
each time. He is amazing! Christie, Jordan's home nurse
tells us he is not going by the book!!! Of course not.........
He is a Luke!

Unless, I have a real desire to spend time on Jordan's
web page, please know that I will update it when Jordan
has made his final trip to Heaven. Until then we are
keeping Jordan's home quiet, peaceful, safe and loving.
We are cuddling and holding hands as much as we can.

One day I will need to express my feelings and will post
it on his website. Thanks for listening! (Therapy)

Thank you all for your love, prayers and continued
support.

Love to All!
Cheryl

Jordan's Rules: Let your children sleep in your
bed, let them make messes, have more patience,
don't take anything for granted and tell them
you love them all the time.

Wednesday, March 24, 2004 2:09 PM CST

Tomorrow will be a week since the last blood transfusion.
The one prior to it gave us 3 good weeks with Jordan. The
one we did last week is not benefiting Jordan the way we
had hoped.

He is sleeping more and more and his pain is increasing.
We were considering a platelet transfusion today or
tomorrow, but after speaking with Dr. Russell and
considering Jordan's condition, we have decided against
it. The complications that come along with a platelet
transfusion are not worth the small amount of benefit.

So, today we are sad as we know the end is coming soon.
Jordan is comfortable and still has some happy moments.
He is still alert and communicating with us when he is
not asleep.

In the past few months I have been trying to read him a
book and talk to him about where he is going. But he has
always been very adamant about not going there! Well
last night was different.

He wanted to go outside and sit in the chair. It was lovely
out! I put him in the chair with his blanket and when I
stood up he was crying. It was a different cry, one I have
never heard before....I knew he was afraid. So I kneeled
down and held both his hands and told him this. "Jordan
honey, you are very sick and we can't fix it. It is going to
be okay though. You are going to be in heaven with God,
the angels and all the other children. Mommy and Daddy
will be in heaven with you some day and all of us will be
there. It's just that some of us go to heaven before others.
But I will always love you forever". HE LET ME SAY ALL
OF THAT AND DID NOT MAKE A PEEP! (AMAZING) Then
I asked him, "Jordan, have you seen the angels?".....I don't
know mommy?

So I ask this if you for my baby Jordan... Please pray for
no seizures and that the angels come and hold his hand,
show him the way and give him peace! Thank-You!

Love to All!
Cheryl

Jordan's Rules: Let your children sleep in your
bed, let them make messes, have more patience,
don't take anything for granted and tell them
you love them all the time.

Friday, March 19, 2004 10:15 AM CST

I have not updated you lately because I was waiting
for yesterday. Jordan went to Texas Children's for a
blood transfusion. Wednesday night Jordan wanted
to sleep with his daddy. That was great for me, I got
to sleep. Not so good for daddy. Jordan was up every
two hours with pain and was struggling to breathe.
That's when we realized we should have gone in
Wednesday for the transfusion instead of Thursday!

We made it through the day under extreme stress and
fear that we were going to loose Jordan that day. What
an awful day. I can't even tell you how horrific it was.

The hospital raced around like crazy and pushed in
every direction they could to get the blood! Don and
I are sitting there with our eyes full of tears as we take
deep breathes to hold those tears back hoping and
hoping and hoping that the blood will not be to late.
Jordan wanted to sit on his daddy lap as he gasped for
air. They even went so far as to get a 4 wall private
room ready for us and pulled the "do not resuscitate
orders" (that were signed in December) to the front of
his chart so that all were informed.

From the time we arrived and the blood started going
in it had been 3 hours of agony. We relaxed a little
after the blood transfusion began. Then we realized
that his heart may have worked to hard the last day
or so and would just be tired and not want to work
anymore even with more blood!

We know that we have probably only bought a few
weeks. But today Jordan is up, happy, cooked his own
egg (with mommy's help) he is watching TV, counting,
drawing and yelling "Where is Hannah mommy" ,
"Lemonade mommy" ,"Go to the store and buy it"!
I just love it when he is bossy. Just like his daddy!

So today is great and yesterday is over! I would really
appreciate it everyone would go donate blood and or
platelets. If you have not stopped to save a Childs
life.....please do so! Remember one donation saves 4
children's lives. There are so many children with cancer
it would blow your mind. And lets not forget about the
adults too. If you are O- they need you more than ever!!!
PLEASE GO DONATE! MAKE IT A PART OF YOUR LIFE!
It is an easy way to give a great gift to other people!

On March 17th, little Robyn Brooks from the UK lost her
battle to Neuroblastoma. We met her family in New
York. She fought for 4 years. Please send a prayer of
peace to her and her family.

On March 18th, little Cierra Lugo lost her battle to
Neuroblastoma too. She suffered so much. Please
send a prayer of peace to her, her mommy Shannen
and her family.

Take today to live to the fullest and reflect on what you
can make better and do it.

Love to All!
Cheryl

Jordan's Rules: Let your children sleep in your
bed, let them make messes, have more patience,
don't take anything for granted and tell them
you love them all the time.

Saturday, March 13, 2004 12:04 AM CST

Sometimes I just don't know what to tell you! I
know how hard it is for us and then for me to pull
you into our crazy world concerns me. Many of
you love us so much and many of you care from a
far, to have the courage to continue with Jordan's
journey is very painful to you as well.

It appears as though the platelet transfusion has

temporarily stopped or slowed the internal bleed-
ing. Jordan continues to defy the odds. Jordan is
still having minimal pain that is controlled with
very little pain medication and is interacting with
everyone just fine. He has gotten very good at
getting what he wants!

The other morning Jordan was sitting up in bed
being very quiet for mommy. I was still sleeping.
I must have moved a tiny bit so Jordan said "I
wuv you mommy" and I managed to wake up
enough to open one eye and say "I love too
Jordan" then Jordan said "NICK JR"!

We are still enjoying our baby and we continued
to be amazed at his strength and courage. He is
such a blessing and our love grows deeper and
deeper. I suppose we are just very proud parents!

We are considering another blood transfusion
next week. This is a very tough decision. But
Jordan will lead the way!

GO ORDAN!!!!! The "J" is missing on purpose!
Kristin, a very dear friend of mine ran a marathon.
Yes all 27 miles! She was running for Jordan and
the J fell off her shirt. So when the people were
cheering it sounded like GO ORDAN, GO ORDAN,
GO ORDAN!

Thanks Kristin, we love you!

Love to All!
Cheryl

Jordan's Rules: Let your children sleep in your
bed, let them make messes, have more patience,
don't take anything for granted and tell them
you love them all the time.

Monday, March 8, 2004 5:33 PM CST

Just wanted to let you all know that Jordan has
returned to his grumpy days. He just gets really
tired and does not feel good. He is also angry, with
every right to be! He has also gotten a little bossy
too!

Last night his legs and arms were cold, so I put the
heating pad over the bed spread. Christie, Jordan's
nurse, explained to us that the limbs are the first
to go cold from the lack of blood to circulate. The
body is designed to save the blood for the organs
last. He wakes up in the mornings with quite a bit
of pain and we spend our morning with pain meds
and other meds to get him going. There are still
spurts during the day when he feels good.

He is struggling a bit and we are doing our very
best to give him the love & comfort he needs. At
night when we go to sleep (and also at naps) he
wants to hold hands! Jordan will say "hand, hand,
hand" and will repeat it until you get in the bed,
get situated and have your hand in his! We just
hold hands all night! He is a very sweet sweet boy!
OH, I started telling him that "I love you for ever
Jordan" and he will say " I wub you eber mommy"!
I think I might have already told you that?

Now for the angry stuff. One time when daddy was
holding him and he was mad, WOW IT WAS QUITE
A SHOCK TO SEE! Jordan went right to Don's face
and bit him on the cheek HARD and with a very angry
face. I think he tried to hit him too! Another time, back

during chemotherapy Jordan had walked from our
room to his room and was struggling a bit. You can
see from the kitchen to his room. We have solid wood
doors 10' tall. Jordan was leaning into the door with
both hands on it and slamming it into the wall. Don
was headed over to stop him and then we both real-
ized he was so mad, so we just let him finish. Now we
have a small hole in the wall where the knob hit. I
think I'll just keep it!

Finally, the bossy stuff. We enjoyed a "Sonic" chant!!!
One morning in the kitchen just a few days ago when
Aunt Candace was here from Seattle Jordan said:
SONIC, GRILL CHEESE, TATOR TOTS, NOW! He did
a little power punch with his hand into the air! So off
to Sonic Candace went.

We love him so and we will miss him for eber!

Will update soon!

Thanks to All for your love, prayers and continued
support!

Warmly!
Cheryl

Jordan's Rules: Let your children sleep in your bed, let them
make messes, have more patience, don't take anything for
granted and tell them you love them all the time.

Sunday, March 7, 2004 2:08 PM CST

Our beautiful little boy, Rocky/Jordan, has had some
more good days. It's great to be wrong and difficult to
be confused. So we are grateful for our good days with
Rocky/Jordan and have learned to never underestimate
the human spirit! Wow, Jordan is an amazing little boy!

Will update soon!

Thanks to All for your love, prayers and continued support!

Love to All!
Cheryl

Jordan's Rules: Let your children sleep in your bed, let them
make messes, have more patience, don't take anything for
granted and tell them you love them all the time.

Friday, March 5, 2004 5:37 PM CST

Our beautiful little boy, Jordan, has been feeling so rotten
the past few days. We always hope for "one more day" of
him snapping out of it and having a fun day. I hope I am
wrong, but I don't think that he will. I feel in my heart that
Jordan is near the end of his suffering. We have just a few

more days.

Jordan is sleeping quite a bit more and is very weak. Since
the tumors are living on his blood supply it makes his little
heart work very, very hard. So his heart rate is elevated and
it will reach a plateau and then it will slow down and finally
be at rest. He should have a peaceful passing.

We are surrounded with family and friends and the only
thing we need from you are your thoughts and prayers!

Thanks to All for your love, prayers and continued support!

Love to All!
Cheryl

Jordan's Rules: Let your children sleep in your bed, let them
make messes, have more patience, don't take anything for
granted and tell them you love them all the time.

Wednesday, March 3, 2004 1:58 PM CST

It seams that Jordan will not have anything to do with the doctors
idea of time frame. Last week our thoughts were about a week and
Jordan is still defying the odds! In fact on Monday it started with
painting his hand and feet for prints on really nice paper to frame.
My friend Kristin came over with the supplies and her children to
do the task. I had phoned his school teacher, Lori to have her chat
on the phone with Jordan since he was in such a great mood. But
she then got someone to cover her class and came over. So we
listened to music that Lori had previously made cd's of for Jordan
to have at home and we sang and danced our way through all the
hand and feet painting and printing! While this is going on the
phone is ringing off the wall and Christie brought over a yummy
chicken salad for the girls. While we were eating Stacy stopped by
with a gift for Jordan. Just a few short hours later Michelle popped
in with Hannah, Jordan's girlfriend and Jacob. The 3 of them have
known each other from about 4 months of age! If Jordan was not
paralyzed he would have been running around this house with them!
Later in the evening Nina and Poppy came over for dinner and
Jordan was still happy and entertaining for all! He can just light
up a room!

Last night at dinner Jordan again was the entertainment for all! We
have really enjoyed this time with him. Oh, by the way he is finally
potty trained. He asked daddy at 3:00 am to go poo. Dad thought
he just needed to change his pants. Jordan said "NO, Potty".
Amazing, got a few pictures on the pot the next day. Mommy is
very proud of that picture!

Today is Wednesday and Jordan is very grumpy. So hopefully a
nap will snap him back into the amazing child he is this afternoon!

Thanks to All for your love, prayers and continued support!

Love to All!
Cheryl

Jordan's Rules: Let your children sleep in your bed, let them make
messes, have more patience, don't take anything
for granted and tell them you love them all the time.

Sunday, February 29, 2004 8:33 AM CST

This past week has been really tough. Monday was great and it all went
downhill from there. Jordan's nurse, Christie, came for his check up on
Tuesday and we had discovered a little peteekeei (sp). Those are little
red dots on the skin that represents low platelet counts. So we decided
that Jordan still had quality of life in him and we made arrangements
for blood and platelet transfusions.

We checked in the Clinic at Texas Children's Hospital early Thurs-
day morning. After we got the blood counts back it showed the
hemoglobin (red cells) at 2.9, which is extremely low. His platelet
count had just dropped to the magical number for transfusion. But the
real concern was the blood. Since it was so low that meant the heart
was working overtime and the blood had to be given back very slow
as to not shock it along with medication. We spent the entire day there
doing the transfusions and had to come back Friday morning to finish
the red blood cells.

The final number Dr. Russell wanted to achieve was 12 and Friday
morning we should have been at 8. When the nurse told be me the
number 3.7 I knew immediately something was wrong. Dr. Russell
then explained to us that this represents internal bleeding. The
tumors inside are bleeding into themselves but the supply is Jordan's
blood. We went ahead and finished the blood transfusion and brought
our beautiful boy home!

We are devastated and heart broken. This does not even put it into
perspective. We will continue to have a good time with Jordan and
will be by his side as he moves onto his next life. The time frame for
that is about a week. But I will continue to update the website.

According to Dr. Russell, this is the most painless way to pass, as
Jordan will just go to sleep and not wake up. There is a chance of
seizures which he will not feel. All of you want to know what you
can do to help. Please pray that Jordan will not have any seizures
as I don't want to see him suffer any more.

Thanks to All for your love, prayers and continued support!

Love to All!
Cheryl

Jordan's Rules: Let your children sleep in your bed, let them make
messes, have more patience, don't take anything
for granted and tell them you love them all the time.

Sunday, February 29, 2004 8:23 AM CST

This past week has been really tough. Monday was great and it all went
downhill from there. Jordan's nurse, Christie, came for his check up on
Tuesday and we had discovered a little peteekeei (sp). Those are little
red dots on the skin that represents low platelet counts. So we decided
that Jordan still had quality of life in him and we made arrangements
for blood and platelet transfusions.

We checked in the Clinic at Texas Children's Hospital early Thursday
morning. After we got the blood counts back it showed the hemoglobin
(red cells) at 2.9, which is extremely low. His platelet count had just
dropped to the magical number for transfusion. But the real concern
was the blood. Since it was so low that meant the heart was working
overtime and the blood had to be given back very slow as to not shock
it along with medication. We spent the entire day there doing the trans-
fusions and had to come back Friday morning to finish the red blood cells.

The final number Dr. Russell wanted to achieve was 12 and Friday morning
we should have been at 8. When the nurse told be me the number 3.7 I knew
immediately something was wrong. Dr. Russell then explained to us that this
represents internal bleeding. The tumors inside are bleeding into themselves
but the supply is Jordan's blood. We went ahead and finished the blood trans--
fusion and brought our beautiful boy home!

We are devastated and heart broken. This does not even put it into perspective.
We will continue to have a good time with Jordan and will be by his side as he
moves onto his next life. The time frame for that is about a week. But I will
continue to update the website.

According to Dr. Russell, this is the most painless way to pass, as Jordan will
just go to sleep and not wake up. There is a chance of seizures which he will
not feel. All of you want to know what you can do to help. Please pray that
Jordan will not have any seizures as I don't want to see him suffer any more

Thanks to All for your love, prayers and continued support!

Love to All!
Cheryl

Jordan's Rules: Let your children sleep in your bed, let them make messes,
have more patience, don't take anything for granted and
tell them you love them all the time.

Sunday, February 29, 2004 8:17 AM CST

This past week has been really tough. Monday was great and it all went downhill
from there. Jordan's nurse, Christie, came for his check up on Tuesday and we
had discovered a little peteekeei (sp). Those are little red dots on the skin that
represents low platelet counts. So we decided that Jordan still had quality of
life in him and we made arrangements for blood and platelet transfusions.

We checked in the Clinic at Texas Children's Hospital early Thursday morning.
After we got the blood counts back it showed the hemoglobin (red cells) at 2.9,
which is extremely low. His platelet count had just dropped to the magical
number for transfusion. But the real concern was the blood. Since it was so low
that meant the heart was working overtime and the blood had to be given back
very slow as to not shock it along with medication. We spent the entire day
there doing the transfusions and had to come back Friday morning to finish the
red blood cells.

The final number Dr. Russell wanted to achieve was 12 and Friday morning
we should have been at 8. When the nurse told be me the number 3.7 I knew
immediately something was wrong. Dr. Russell then explained to us that this
represents internal bleeding. The tumors inside are bleeding into themselves
but the supply is Jordan's blood. We went ahead and finished the blood trans--
fusion and brought our beautiful boy home!

We are devastated and heart broken. This does not even put it into perspective.
We will continue to have a good time with Jordan and will be by his side as he
moves onto his next life. The time frame for that is about a week. But I will
continue to update the website.

According to Dr. Russell, this is the most painless way to pass, as Jordan will
just go to sleep and not wake up. There is a chance of seizures which he will
not feel. All of you want to know what you can do to help. Please pray that
Jordan will not have any seizures as I don't want to see him suffer any more

Thanks to All for your love, prayers and continued support!

Love to All!
Cheryl

Jordan's Rules: Let your children sleep in your bed, let them make messes,
have more patience, don't take anything for granted and
tell them you love them all the time.

Saturday, February 28, 2004 8:02 PM CST

This past week has been really tough. Monday was great and it all went downhill
from there. Jordan's nurse, Christie, came for his check up on Tuesday and we
had discovered a little peteekeei (sp). Those are little red dots on the skin that
represents low platelet counts. So we decided that Jordan still had quality of
life in him and we made arrangements for blood and platelet transfusions.

We checked in the Clinic at Texas Children's Hospital early Thursday morning.
After we got the blood counts back it showed the hemoglobin (red cells) at 2.9,
which is extremely low. His platelet count had just dropped to the magical
number for transfusion. But the real concern was the blood. Since it was so low
that meant the heart was working overtime and the blood had to be given back
very slow as to not shock it along with medication. We spent the entire day
there doing the transfusions and had to come back Friday morning to finish the
red blood cells.

The final number Dr. Russell wanted to achieve was 12 and Friday morning
we should have been at 8. When the nurse told be me the number 3.7 I knew
immediately something was wrong. Dr. Russell then explained to us that this
represents internal bleeding. The tumors inside are bleeding into themselves
but the supply is Jordan's blood. We went ahead and finished the blood trans--
fusion and brought our beautiful boy home!

We are devastated and heart broken. This does not even put it into perspective.
We will continue to have a good time with Jordan and will be by his side as he
moves onto his next life. The time frame for that is about a week. But I will
continue to update the website.

According to Dr. Russell, this is the most painless way to pass, as Jordan will
just go to sleep and not wake up. There is a chance of seizures which he will
not feel. All of you want to know what you can do to help. Please pray that
Jordan will not have any seizures as I don't want to see him suffer any more

Thanks to All for your love, prayers and continued support!

Love to All!
Cheryl

Jordan's Rules: Let your children sleep in your bed, let them make messes,
have more patience, don't take anything for granted and
tell them you love them all the time.

Saturday, February 28, 2004 9:19 AM CST

This past week has been really tough. Monday was great and it all went downhill
from there. Jordan's nurse, Christie, came for his check up on Tuesday and we
had discovered a little peteekeei (sp). Those are little red dots on the skin that
represents low platelet counts. So we decided that Jordan still had quality of
life in him and we made arrangements for blood and platelet transfusions.

We checked in the Clinic at Texas Children's Hospital early Thursday morning.
After we got the blood counts back it showed the hemoglobin (red cells) at 2.9,
which is extremely low. His platelet count had just dropped to the magical
number for transfusion. But the real concern was the blood. Since it was so low
that meant the heart was working overtime and the blood had to be given back
very slow as to not shock it along with medication. We spent the entire day
there doing the transfusions and had to come back Friday morning to finish the
red blood cells.

The final number Dr. Russell wanted to achieve was 12 and Friday morning
we should have been at 8. When the nurse told be me the number 3.7 I knew
immediately something was wrong. Dr. Russell then explained to us that this
represents internal bleeding. The tumors inside are bleeding into themselves
but the supply is Jordan's blood. We went ahead and finished the blood trans--
fusion and brought our beautiful boy home!

We are devastated and heart broken. This does not even put it into perspective.
We will continue to have a good time with Jordan and will be by his side as he
moves onto his next life. The time frame for that is about a week. But I will
continue to update the website.

According to Dr. Russell, this is the most painless way to pass, as Jordan will
just go to sleep and not wake up. There is a chance of seizures which he will
not feel. All of you want to know what you can do to help. Please pray that
Jordan will not have any seizures as I don't want to see him suffer any more

Thanks to All for your love, prayers and continued support!

Love to All!
Cheryl

Monday, February 23, 2004 9:39 PM CST

Wow, what an incredible day. Jordan woke up with the wave of nausea
over his face. He held it back and I slowly gave him his pain medication.
I waited about and hour then gave him his Motrin. This is a normal
routine for us and he usually throws up. But this morning he held it all
back. He has not been himself for about the past 2 weeks. And today,
he snapped out of it and he was his old self today. We played, he sang,
he smiled, he laughed.

Barbara & Denise have been helping me keep up with this monstrosity
of a home for the past 2 years. They have been a part of our family
since before Jordan's diagnoses May 2002. Jordan just loves Barbie
and Neesee (that's what he calls them) and today he played with them
just like he use too! All day he has had a great time, so of course I
did too. Nina & Poppy came over after dads heart tests downtown
today and Jordan was still happy, smiling, laughing and being his
adorable self.

Dad is having his yearly check up for his heart condition and there may
be a blockage....so he has gone to a heart specialist for further testing
and we should have the results of his tests tomorrow or Wednesday. We
hope and pray it is nothing. Mom & Dad are celebrating their 50th wedding
anniversary along with dad's 71st birthday. February 21st was the day for
both! HAPPY 71ST BIRTHDAY DAD! HAPPY 50 WEDDING ANNIVERSARY
MOM & DAD! Wow 50 years being married to the same person. That is
amazing!! CONGRATULATIONS FOR STICKING IT OUT AND STAYING
IN LOVE!

It's pass my bedtime, I just wanted to let you know what a great day Jordan
had today.....and so did we!

Love, Peace & Happiness to All!
Cheryl

Monday, February 23, 2004 10:22 AM CST

It is so difficult to update you about Jordan. He just is not feeling well!
He is sleeping more and more and is having more pain. So as the pain
increases so does the pain medication. His liver is getting bigger and
you can see that in his little body. The cancer in the bone marrow is
gaining strength as Jordan's coloring is so pale and he is bruising
easier. This is so hard to do. I still cannot believe that we are having
to do this. I just look at him and cannot understand why a little child
has to endure such pain and suffering. And then to loose his life just
wrecks me. My heart is broken to bits. I just love him so much.

I tell him "I love you Jordan, forever" and he says "I wuv you mommy,
eber"! I don't know how to do this. We still share smiles and laughter
when he is feeling okay. It's just not as much anymore. This morning
he woke up feeling terrible and I gave him his meds. Now he is feeling
better and counting: 10-1 BLASTOFF! Sound like we could have a
little fun right now!

Thank you for your continued support!

I Love You!
Cheryl

Wednesday, February 18, 2004 1:31 PM CST

The following piece was written by the mum of a wonderful Angel called Kyla. Juliet, mum, wrote this during Kyla's battle with brain tumor. I think what
Juliet writes so beautifully holds true regardless of whether it is a child or a partner you are trying to hold it all together for.

"The Strength of an Egg"

Parents of children with cancer are often referred to or viewed as having "strength like a rock". Albeit flattering it is not quite true. It is more like the strength of an egg. An egg you ask? Yes!
If you'll think about it, you'll see my point.

An egg has a polished, smooth outer appearance, with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be
as smooth or solid.

Most children, at some point, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an even
slightly different angle, will break. The contents, once so neatly concealed, will come spilling out. The no-longer perfect shell will be crushed. It looks so fragile that it seems inconceivable that it ever held any strength.

A rock, on the other hand is solid all the way through. To break it is almost impossible. If you succeed, you will find that there is nothing inside but more rock. It takes a lot more than pure hardness to hold the "HAND OF HOPE".

Parents of children with cancer are not solid all the way through. We hurt, we fear, we cry, we hope. It takes a very careful balancing act to keep the shell from being shattered. "Balancing an egg" while running a household,
going for doctors' visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed!

Occasionally, the angle will be off and the shell will break, shattering hope and the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty, though, parents of children with cancer will pick
themselves up and put themselves back together again.
Juliet Freitag (mom to Angel Kyla)

I wanted to share this with all of you. The person that is right next to you, that you don't know...Remember you have no idea what there life has been. Be kind and gentle!

Love to all!
Cheryl

Tuesday, February 17, 2004 3:13 PM CST

With all the pain medication Jordan has been a little back up! (7 days backed up) So of course we were here to help!!! Oh Boy!!! Let's just say I was up all night begging for no more poo!

We slept in this morning until about 10:30. And NO that was
not additional sleep! But anyway, Jordan feels much better
today with all the excess luggage gone and we played with the alphabet train and visited with his nurse Christi today. He tires easily these days but we do our best to have as much fun as possible when he's up!

That's about it! Have a great day!

Love,
Cheryl

Monday, February 16, 2004 12:44 AM CST

Good Morning Everyone,

It's just difficult to send out updates sometime. Sorry it's taken me so long. Jordan is doing fairly well. We
have had some pretty good days with him. And although he is
sleeping more we are able to control his pain without him loosing his mind and his sweet personality. I am the one loosing my mind! OH...sorry that happened along time ago!

Don't get me wrong: he still fusses and works the room to get his way!!! It's actually pretty funny to watch that smart boy in action! So we are still having fun! One day
he wanted his daddy to get out of the room. He told his daddy "BYE" three times. Daddy said "I'm not leaving"...
Jordan said "MORE JUICE DADDY"! He knew that would work!
And for me, he just tells me to "CLEAN KITCHEN MOMMY"!

Here's a funny one: Long time ago we were out shopping and I was trying to teach Jordan that Daddy goes to work to get the money. Just recently one morning daddy was off to work. After daddy was gone Jordan asked me "Mommy where is daddy", I said, "he went to work", Jordan said "to get
the monies?" I said YES! PRICELESS!

Our hearts continue to break for Jordan, our family and all the other Neuroblastoma warriors! Having children and watching them grow up is a dream come true for most of us.
No one has children to watch them suffer and then become an angel. And the pain that comes along with it is one I never knew existed.

Someone asked me a long time ago: "If you knew just how sick your baby was going to be and knowing the outcome, would you choose to do it again"?
I could never answer that question.....until one day last week. Living with so much pain makes it almost impossible to really learn/feel the depth of the love. It's there, it just gets lost in all the protective gear and it is so unbelievably HUGE!

My answer to that question is YES! I don't think all of that HUGE LOVE would have filled my heart and soul the way it has without the unfortunate illness.

So in my lifetime with my one child, my experience is a love that is perfect! I am so grateful for that gift! I will cherish all that it has taught me. I hope this makes sense. And I hope it helps you even just bit, to realize
your love, your family, your life and to cherish it and take good care of it!

God Bless!
Cheryl

Wednesday, February 11, 2004 9:31 AM CST

I hope you all enjoyed Lynn's prayer. I truly wish our prayer would be answered. However, I think god has more
important things for Jordan. The past couple of days were
good and bad. One day he was great and yesterday and today
he is not feeling very good. His nurse "Kristie" came to
see him yesterday, as she does twice a week now. Jordan really likes her, he always wants to know what she has in her bag. He helps her with his examination. I really am just rambling, because I don't know what to tell you. Jordan is not feeling well and we are terrified. Please continue to pray for our baby as he get close to the doors of heaven.

Love to All!
Cheryl

Saturday, February 7, 2004 12:44 AM CST

May God always protect you and your loved-ones.

The following is a prayer for Jordan delivered by the Porat family to the Kotel, the Western Wall in Jerusalem, on Friday, February 6th, 2004:

God,

Thank you for giving us Jordan. We knew he was special from the moment he was born. Jordan Alexander Luke, born on the 18th of June, in the year 1999, was his Nina & Poppy's 1st Grandchild, and the prettiest new born I had ever seen. A "South-Paw" like his father, Jordan amazed his parents, Don & Cheryl, by reciting his ABCs & 123s as early as 2 years of age. At 2 1/2 years old, Jordan could spell his name and count in ascending or descending order, in English or Spanish. This astounded his Doctors and Nurses. Jordan is only 4 1/2 years old and now has the extraordinary social skills of someone older and wiser. The children in his preschool are learning colors and geometric shapes while Jordan, who already knows his colors and geometric shapes, is learning how to spell. He is so smart, God! Everyone who has every met Jordan instantly falls in love with him. Jordan has two older, adoring brothers, Jason & Jarrod. Jordan's favorite games are Hide-and-Seek and a game he created, called the Alphabet Train. God, Jordan rarely complains and has always been an exceptionally happy child. He is truly a wondrous gift from you.

Cheryl, Don, Jason & Jarrod; my partner, Rusti; my Mom & Dad, Jordan's Nina & Poppy have only one prayer: God, please heal Jordan, make him healthy, free of disease, and whole. God, this is my prayer too! I realize that you must need Jordan for something really important; however, I would like you to know how important it is that Jordan remain here with us. God, please make Jordan well and always protect and watch over him.

Amen,

Lynn Brown (Jordan's Aunt)
Houston, Texas USA

Monday, February 2, 2004 12:03 AM CST

Good Morning, Jordan is doing better today. He has notbeen eating and all of the sudden he is hungry and I am running back and forth to the kitchen making this and that as he changes his mind faster than I can open the frig.
It's a good thing he is not asking for a 5 course meal!

Some days are so hard and sad and others are great! What a confusing disease along with allot of other words I can think of. It is still so unreal where we are today in terms of Jordan's illness or that he is even ill!

Although relapse is not a good sign there are many children that go forward with optional treatment and achieve ned" (no evidence of disease) status again. Unfortunately, Jordan's relapse was so severe that we felt Jordan should be at home with his family. It's the beginning of February and he is still with us today sharing laughter and his precious smile. The days are getting harder for him and us but he has had more fun, love and laughter then some adults have had! He truly is a special child.

Thank-You for signing in. As I read your thought's and prayers for our family, tears fall down my face. But they also give my heart a little peace!

Love to All!
Cheryl

Wednesday, January 28, 2004 8:04 AM CST

Well Jordan's class mates didn't make it over but
his two teachers did. Jordan was very withdrawn but
we snapped him but of it with the helium balloon
tank. So we had lots of fun and got several more
smiles.

The last couple of nights have been a little harder
for Jordan. And today he is not feeling well at all.
We do believe that Jordan has turned that corner, so
to speak. It won't be long and we will have to let
Jordan go. He is fighting so hard to stay here. It
just breaks my heart.

Love to All!
Don & Cheryl

Tuesday, January 27, 2004 8:48 AM CST

So Jordan's radiation was complete and we were sent home. That was a very hard day. It meant "no more treatment" and we just hoped we could make it through the end of the year. Well we did and Jordan has had a blast.

Jason & Jarrod (two older brothers)came to visit for the holidays and Jordan wanted to know where they were every morning he woke up. "Mommy, where's Jason & Jarrod?" I would tell him they are sleeping in the other bedrooms, did he want to wake them up? And sometimes we would. Very sweet memories. He just loves his brothers. Jason's in College and Jarrod is in New York finishing High School, so
when they come Jordan is very excited!!!

We had the Santa Party. It was so great! It was a beautiful day and not a cloud in the sky. There was about
35 children with there parents and Santa came down the street in a horse drawn surrey with presents for all the
children. Santa and Jordan passed out the presents. It was so cute you could feel the excitement in the children as they anxiously awaited to hear there name called out. Santa then gave rides up and down the street. Each family brought a dozen balloons and we did the balloon release. Jordan loves to see ballons go into the sky. I will never forget that special day.

The day after was Christmas. We had scurried around for gifts and came up a little short. So Jason and Jarrod got cash! We gave them a card that said "sorry you got delt a crappy hand" and wrapped in a clean diaper. We all got a nice chuckle. By now though, Jordan thinks we are having daily parties. So every day Jordan would say "Party Mommy?"
We would have to make stuff up! Thank goodness we had a guitar for Jarrod to play. I think he played Old McDonald about 100 times. And after Jordan went to sleep I got to hear about Jason's college adventures. He is only 5 minutes from the beach in Carolina. Tough life.

Jordan's up and not feeling to great today. His teacher's and classmates are suppose to come over this afternoon for a little singing! So hopefully after some medicine he will be up for some entertainment.

Love to All!
Cheryl

Friday, January 23, 2004 3:24 PM CST

We knew somthing was wrong with Jordan Thanksgiving morning but it was not until the first week of December that his relapse was official. There have been more than a few relapse scares over the past few years, which is an aweful feeling, but we were not going to let this scare take us down that road until it was confirmed.

The 1st week of December it was confirmed. The first issue addressed were the tumors located between the 5-7th vertebrae in his spinal cord. His legs were not functioning and he had severe pain. We had to make very fast decisions. Jordan had about 6 radiation treatments to his spine and all the other scans were completed for a full understanding of his relapse.

Jordan's relapse is very severe. We were shocked and devestated. The doctors did not give him much time but Jordan is still with us today and doing pretty good. I will send out an update about the holidays with Jordan later. Love to All!

Sunday, July 28, 2002 at 12:56 PM (CDT)

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