History

Journal History

Tuesday, August 17, 2010 10:59 PM CDT

Justin, Loving you and missing you as always.... Happy 25th Birthday!

Tuesday, August 17, 2009 8:30 PM CDT

Happy 24th Birthday Justin...Always on my mind, always in my heart. I love you.

SUNDAY, August 17, 2008 8:51 PM CDT

Justin,
Happy 23rd Birthday baby!! Wow. That's hard to believe. As usual, we have been celebrating your birthday in the Islands and doing everything you would want to do. You are so missed, always loved and remembered. Daddy, Courtney and I went out on a big catamaran and went snorkeling, and then Daddy and Courtney went back out with the guys to go lobster diving. It was a great time and of course, Daddy told everyone about you and why we were here in the first place. He never misses an opportunity to talk about you to anyone who will listen.
I hope you are having a great time in heaven. You sure have lots of company up there. I love you so much Jus. There is never a day that goes by that you are not in our thoughts constantly. See you when we get to the other side baby. Keep us safe in our travels and please let us know that you are with us!!
Mom, Dad, and Courtney
xoxoxoxoxoxox

Thursday, April 4, 2008 00:00 AM CDT

EIGHT YEARS.... It sucks Justin. I miss you so much. I still look for you, wait for you to come in the door, listen for your voice, talk about you, talk to you, share stories with you, cry for you, and wait patiently to see you again some day. I love you with everything a mother has in her to give to her child. I hope you are feeling loved and know that you will be with us forever.

Sunday, December 23, 2007 1:09 PM CST

A message from Justin in Heaven...

I still hear the songs
I still see the lights
I still feel your love
on cold wintery nights

I still share your hopes
and all of your cares
I'll even remind you
to please say your prayers

I just want to tell you
you still make me proud
You stand head and shoulders
above all the crowd

Keep trying each moment
to stay in His Grace
I came here before you
to help set your place

You don't have to be
perfect all the time
he forgives you the slip
If you continue the climb

To my family and friends
please be thankful today
I'm still close beside you
In a new special way

I love you all dearly
now don't shed a tear
Cause I'm spending my
Christmas with Jesus this year.

Love forever.

Monday, August 13, 2007 9:17 PM CDT

Where have the years gone, Jus? I can't believe you are almost 22. I often think about how handsome you must be, you were such a cutie at 14. You remain in my thoughts constantly and I love you today more than ever before. As always, we will be celebrating your birthday in style! Please let us know that you are with us.
Love you Justin!
Mom, Dad, and Courtney

Monday, February 19, 2007 3:33 PM CST

Hi Justin,
Surely you and Sir-Sir are having a great time in heaven now with Mamoo by your side. Hope you received the very important message I sent to you! Don't forget how much you are and always will be loved.
You are always on my mind and in my heart. I love you.
Mom

Tuesday, December 26, 2006 4:17 PM CST

I hope everyone had a wonderful holiday. We had a great Christmas, but struggle with Paul's mom fighting cancer as well. Please keep her in your prayers.
Wishing you all a happy and healthy New Year.

Love you Jus!!

Saturday, October 21, 2006 1:55 PM CDT

Justin you are on my mind and always in my heart. I miss you so much. I hope you can feel our love, it's stronger than ever.

Sunday, September 17, 2006 11:31 AM CDT

HAPPY 23RD BIRTHDAY COURTNEY!! WE LOVE YOU!

Thursday, August 17, 2006 7:08 PM CDT

HAPPY 21st BIRTHDAY JUSTIN!! We are doing our best to celebrate this day in a way that you would love! We took a white water rafting trip today down the biggest river in the Dominican and had a great time. Mom broke her toe, Dad skinned his knee, Courtney fell out and hurt her ankle and got fried! But we knew you would have loved it! Tonight we are headed to the casino where you would be officially legal! You are on our minds nonstop Jus, and you are so loved. Hope you are having a great party on your end. We'll each be toasting you... probably not with peach schnops, we'll let Bobby do that! HaHa!
Justin, keep us safe and stay with us. We need you! Love you forever.
Thank you to everyone who continues to stop by this site and send us wishes. It means so much to us that you take time out of your busy schedules to remember Justin. God bless you all.

Love Ya Jus!

Wednesday, May 31, 2006 10:08 AM CDT

Another very successful event...another $10,000. Thank you for your continuous support!

Sunday, May 14, 2006 8:07 AM CDT

My wish for Mother's Day...is to know that both of my children are happy...

Details of the Relay for Life fundraiser:

Silent Auction / Barbeque / Car Show

Date: Saturday, May 20, Rain or shine

Place: Lynnhaven Middle School
1250 Bayne Drive, VB

Time: Car Show is from 10-4
Auction / BBQ is from 12-3
Cost for BBQ $8.00/person

Hope to see you there!!

Sunday, March 19, 2006 9:37 AM CST

As I look out the window, I can see the daffodils blooming and buds on the trees. Spring is definately in the air and we have certainly have had some teasing weather reminding us that balmy days are right around the corner. Spring is a time that we are reminded of new life and rebirth, but for our family, it is a reminder of death, cancer, struggle, destruction, agony, and dying. It is a painful reminder that Justin's beautiful face is missing from our day to day lives. It has been six heartbreaking, painful years. Cancer continues to ruin lives every day. A cancer diagnosis does not simply affect the person who is diagnosed, but it affects an entire network of family and friends. It destroys so much.

I am passionate about doing what I can to prevent cancer from destroying another family. While it is difficult for our family to be reminded of the hell we have gone through, it is equally important for us to remember Justin, share his life, and to feel like his death had a purpose. We have been actively involved with Relay for Life for the past six years, and with the help of many of you, we have raised over $150,000 to support the research done by the American Cancer Society. Many people do not believe that the money ACS receives is spent wisely, but I kn ow forst hand, that without ACS donations, Justin would not have had his only chance for life. The ACS donated the money to Duke for research on umbilical cord blood transplants. Therefore, I have to support this worthy cause, and I hope that any of you reading this will do the same.

Once again this year, we are having our Silent Auction and BBQ, also combining it with an awesome car show. It will be held on May 20th, with more details to follow. We look forward to help and support from all of you.

Thank you for continuing to follow us through our years of grief.
Susi, Paul, and Courtney

Saturday, February 11, 2006 11:24 AM CST

February, six years ago, we were just starting transplant. Where has the time gone, Jus? I hope you are happy and healthy, watching over all of us. I love you so much....

Saturday, December 17, 2005 8:05 AM CST

It is hard to believe that another Christmas holiday is here. The time goes by more quickly each year. I have one Christmas wish this year... I wish for peace within our hearts. The holidays are so bittersweet. A time that should be so joyful, often becomes such a stressful time for our family. Justin loved Christmas, and it was such a fun time for all of us. I wish I could understand the why...

Here's wishing you all peace, joy, and happiness during this Christmas season, and a happy and healthy 2006.

I found this poem...it fits well.

Misty Christmas Memories

Gentle snowflakes touch my face
As a tear trails down my cheek
Among crowds and glistening tinsel
Your face, I once more seek.

Another year has come to pass
With not once glimpse of you
Except in dreams, you visit me
In shades of hazy blue.

Christmas time will soon be here
I long to see your face
Just once again, to see your smile
And dream of your embrace.

Christmas time is boxed up
In tones of purple hue
It's wrapped in misty memories
And laced with thoughts of you.

Author/Written By:
Marilyn Ferguson
Š1987

Saturday, November 12, 2005 9:20 PM CST

Things to thankful for this Thanksgiving...

Courtney
Paul
wonderful family
great friends
good health
happiness
love
support

and the wopnderful 14 1/2 years I had with you Justin.
Despite the pain, we are blessed.

HAPPY THANKSGIVING

Saturday, October 1, 2005 6:46 PM CDT

Dear Justin,

How are you Jus? I bet you are keeping busy up there lately. Were you there to greet Mr. Rostov? Take good care of him and show him aroung ok? Thanks Jus.

Well, this is the week I really hate...6 years ago, life was so good. And then out of the blue, leukemia strikes again. Life can be so unfair. I know it is selfish of me to wish you back here...so..I am selfish. That's life. I want you back. I still think of you every minute. Where are you hiding? I will always keep looking for you...and the candle still burns in the window, waiting for you to find your way home.

Today Justin's brother got married. Are you celebrating with him now?? I bet it's really easy for you to be in more than one place at a time. Well, you were heavy on my mind and in my heart. I guess that will never change. Please let me know that you are close by Jus. I love you so much that it hurts. But nobody can take that from me!

So...until we meet again, stay close by! I need you every single day. Love you....

Sunday, August 14, 2005 1:58 AM CDT

Hi Justin,
Wow, I was just sitting here thinking about you and the fact that your birthday is on Wednesday and you will be 20 years old! Where has the time gone? Here I am still wondering why you were so brutally ripped from my life and all of a sudden you are 20 years old! It is still so hard to believe that you are gone and not returning. I see some of your friends from time to time. They are still such great kids. I try to imagine you now and wonder how tall you would be and what your voice would sound like. I imagine it would be deep and strong. I can still hear you. I just wish I could feel your whisper on my cheek like I used to. I miss you so much. There is not a day that goes by that you are not constantly on my mind. I am so thankful for Daddy and your beautiful sister. Wednesday we will celebrate YOU and be thankful for the 14 years we were graced with your presence. We never had a dull moment when you were around. I can't wait to see you again Jus, some day. Life on earth is but a moment in time compared to eternity with you. I love you so...
Mom

Monday, July 4, 2005 11:08 PM CDT

Justin,

It's been awhile since I have updated here. Just want you to know that there is not a minute that you are not in my thoughts.

I love you Jus.

Saturday, March 26, 2005 10:37 AM CST

To my sweet Justin,
April 4th is almost here. The memories of that day are so painful. I remember being able to feel your spirit lifting from my arms, and I knew you were gone. Equally painful, was coming home and seeing Courtney's horribly aching heart.
Some days it is so hard to believe that it has been 5 years since you began your heavenly journey. Some days it feels like it was just yesterday. Where does the time go? I still look for you and wait for you to come through the door. I can hear your voice yelling that you are home. I keep waiting Jus, where are you? I even wake up in the mornings struggling to remember my dreams, hoping to have seen your smile or remember feeling one of your your strong hugs. I talk about you often. I hope you know how much we all miss you and how our love continues to grow stronger each day. At times, our family struggles. I look to you for strength and guidance, because I know you have connections with God. I'll never forget what a wonderful, loving, warm, conpassionate, inquisitive, friendly, obnoxious, pain in the butt kid you were!! I love you with every inch of my being, and I am so thankful for the time we had together... I want more, is that asking too much?

When I think of you, which I so often do, I remember your sense of humor, your love, caring, and your compassion... all those things that are such an important part of you.
When I think of you, which I so often do, I remember how you've made such a difference in the world for so many people, how you brought our community together, and how you inspired over 10,000 people to become bone marrow doners...
When I think of you, which I so often do, I remember your courage and your quiet strength that made it possible for you to keep going as long as you did...even when the going got tough. You were an inspiration to so many people.
But most of all, when I think of you, I think of how much you mean to me, and how much I will always love you.

I am so fortunate to have you Courtney, you remind me of Justin in so many ways. I see his smile in your smile, his eyes in your eyes. But mostly, I see you, and I know how lucky I am to have you in my life. Thank you for being such a wonderful daughter.
Mommy

Wednesday, February 9, 2005 7:59 PM CST

***

Tuesday, December 28, 2004 9:03 AM CST

Wishing everyone a happy and healthy 2005. God bless all of you who still find time to remember Justin and check in on us. Reading your notes is helpful and healing.

Monday, December 6, 2004 6:11 PM CST

We would like to wish everyone the happiest of holidays. This will be our fifth Christmas without Justin. Holidays are the most difficult of all, regardless of the time that has passed... I have only one gift that I want for Christmas, and I know I will never get it, so for now, I think it's best to simply remember the reason we are celebrating. Please take time to remember all the families who have to spend Christmas without their children, and those who continue to fight.

Peace...

http://www.jacquielawson.com/viewcard.asp?code=TW13208746

Sunday, November 7, 2004 2:55 PM CST

Justin,
As time goes by, memories are sweeter and more precious than ever. I wish there could be more of them. I want more pictures of you. The ones I have are becoming faded...can you help me? I miss you so much. Sometimes the pain is so raw and tears at my heart. It doesn't go away, it never will. But we help each other, and we will be ok Jus, just knowing we will see you again one day.
I Love you!

FOOTPRINTS IN THE SAND

One night I dreamed I was walking along the
beach with the LORD. Many scenes from my
life flashed across the sky.

In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there was one only.

This bothered me because I noticed that during
the low periods of my life, when I was suffering
from anguish, sorrow or defeat, I could see only
one set of footprints, so I said to the Lord,

"You promised me Lord, that if I followed you,
you would walk with me always. But I have
noticed that during the most trying periods of
my life there has only been one set of footprints
in the sand. Why, when I needed you most,
have you not been there for me?"

The Lord replied, "The years when you have
seen only one set of footprints, my child, is
when I carried you."

Written by Mary Stevenson 1936

Sunday, October 3, 2004 12:54 AM CDT

**I added a new family photo!***

Justin,
This is the week I hate so much...the week you were diagnosed. Five years ago, life was so good, until this week. I still wonder why, Jus. You were right when you said it wasn't fair that you had to go through this twice. Life is just so unfair sometimes. I hope heaven is everything we have learned about and that you are able to be with us when ever you want. I'm counting on being able to see you again one day.
Hey, can you believe that your big sister has turned 21?? Take good care of her and keep her safe ok? She needs you more than ever. I miss you and love you so much.
Love,
Mom

" You're in a better place I've heard a thousand times
And at least a thousand times I've rejoiced for you
But the reason why I'm broken, the reason why I cry
Is how long must I wait to be with you
I close my eyes and I see your face; If home's where my heart is
then I'm out of place. Lord, won't you give me strength to make
it through somehow, I've never been more homesick than now."

Tuesday, August 17, 2004 9:16 AM CDT

Justin,
HAPPY 19th BIRTHDAY! It is so hard to believe that it was 19 years ago since we were blessed with the gift of you! I hope you are having a very special day up there in heaven. Now that you would be graduated from high school and heading off to college, I have something new that I can pretend. I can pretend that you have just gone away to school and that you are having fun and learning about life, and that soon you will be coming home to me, daddy and Courtney. What a great day to look forward to! We love you and miss you more and more each day Jus. I always remind myself that all of this time on earth, is but a moment in time compared to spending eternity with you when we all get to heaven. I am so blessed to be your mom.
I love you.

Monday, July 12, 2004 8:48 PM CDT

Hi Justin,
It was such a sad day today, but it was good knowing that you and Bear are together again. Losing Bear was like losing one more part of you, Jus. He was the best dog ever. I hope you are playing together right now. Can't wait to see you both again.
I love you!

Bear...
I shall see beauty, but none to match your living grace.
I shall hear music, but none as sweet as the droning song with which you loved me.
I shall fill my days, but I shall not, I cannot forget.
Sleep soft, dear friend...

Friday, June 18, 2004 10:31 AM CDT

Hi Jus,
Well, I can hardly believe that today is the day you would graduate from high school. You should be here. You should have a chance to walk across that stage and get that diploma that you were working so hard for. Your friends will all be there. We are planning to go to see Bobby and Justin and everyone else you loved so much, celebrate this milestone in their lives. I know you will be there in spirit, it's just not the same. I miss you so much. Not a day goes by that I don't feel that horrible ache in my heart. I am so thankful for Courtney, I'm not sure what I would have done without her.
Anyway, I just wanted this day to be recognized for you. You are and always will be so very special to me. I am so proud to be your mom! I love you Justin.
Mommy

Monday, May 31, 2004 10:02 PM CDT

"I'll lend you, for a little while,
a child of mine,"He said
"For you to love while he lives
and mourn when he is dead.
It may be six or seven
years, or twenty-two or three, but will you
till I call him back,
take care of him for me?
He'll bring his charms to gladden you
and shall his stay be brief,
you'll have his lovely memories
as solace for your grief.
I cannot promise he will stay,
as all from earth return
but there are lessons taught down there
that I want this child to learn.
I've looked the wide world over
in my search for teachers true,
and from the throngs that crown life's lanes,
I have selected YOU.
Now will you give him all your love
-not think the labor vain
nor hate me when I come to call
to take him back again."
I fancied that I heard them say
"Dear Lord, Thy will be done.
For all the joys thy child will bring
The risk of grief we'll run.
We will shelter him with tenderness,
We'll love him while we may---
And for the happiness we've known
Forever grateful stay.
But should the angels call for him
Much sooner than we've planned,
We'll brave the bitter grief that comes
And try to understand."

Written By: Edgar A. Guest
(from "All In a Lifetime"--Copyright, 1938)

Monday, March 29, 2004 2:18 PM CST

Hi Justin,
Well it's been almost 4 years since you left us. I don't know where the time has gone. April 4, 2000. Sometimes it seems like forever, somtimes like yesterday. Daddy's been watching the NCAA tournament and once again Duke has earned a spot in the final four. It reminds me of your last weekend with us when you proudly wore your UNC T-shirt with all those Duke folks around and cheered for your favorite team. I can't watch a basketball game without thinking of that weekend. You were so full of life, still smiling, despite all the problems you faced. It still seems so unfair to me that you had to leave us. It's so hard to know that you are out there some place, but so far beyond my grasp. I want to hug you and love you so badly. I know I can still love you, and I do, more than you can imagine, but it's just not the same. I suppose it's selfish of me to wish you back, but I would give anything in this world to see you once again Justin. Your friends are all grown up now, getting ready to graduate from high school. You should be sharing this time with them. Please put in a few good words up there for Daddy, me, and Courtney, just so we can be sure to be together again some day. I miss you Justin. I will love you and miss you forever.

Life is but a stopping place,
A pause in what's to be.
A resting place along the road
To sweet eternity.

We all have different journeys,
Different paths along the way,
We were all meant to learn some things,
But never meant to stay...

Our destination is a place
Far greater than we know.
For some, the journey is quicker,
For some, the journey is slow.

And when the journey finally ends,
We'll claim a great reward,
And find an everlasting peace,
Together with the Lord.

Wednesday, February 11, 2004 8:57 PM CST

Dear Justin,
Four years ago we sat together at Duke day after day, night after night, watching and waiting for your new life to begin. We shared stories. We laughed and we cried together. But we never talked about death. That wasn't part of MY plan. I guess I was pretty naive at the time, so sure that I would leave Duke with you and your huge smile at my side. I just knew that our prayers would be answered. Now it seems like forever that you've been gone and sometimes I have to struggle to remember all the wonderful times. Sometime I find myself searching for you, thinking you've just been away. Your pictures are everywhere Justin and I often stare at you until my huge smile eventually becomes heavy and I can feel the tears starting to roll down my cheeks. They were right when they told me that time heals. But there is such a heaviness in my heart. It never goes away and sometimes I wonder if our family will ever be truely happy again, but we are trying hard. I have a mask that fits very well and no one can even tell I'm wearing it. It hides my feelings well, but one thing I will never hide is just how much I will always love you. Please don't forget how much we still need you. I'm really counting on you to "be there" for all of us!
Happy Valentine's Day Jussy. I wonder how many girlfriends you'd have now...

I WILL LOVE YOU

As long as I can dream,
As long as I can think,
As long as I have a memory,
I will love you.

As long as I have eyes to see,
And ears to hear,
And lips to speak...
I will love you.

As long as I have a heart to feel,
A soul stirring inside me,
An imagination to hold you...
I will love you.

As long as there is a time,
As long as there is a love
As long as I have breath to speak your name...
I will love you.

Author Unknown

Sunday, December 28, 2003 3:12 PM CST

Another Christmas is behind us and still, we find the strength to go on each day. The days are not easier and we have not forgotten the important link that is missing from our lives, but we go on because Justin loved life so much and God gives us the strength to do so. There is a small amount of peace and comfort found in knowing that Justin continues to be with us and we will be with him one day again. We have spent some wonderful days with Courtney and it has been such a blessing to see her so happy. She has grown into such a beautiful young lady and we are tremendously proud of her. She never hesitates to share her story about Justin and she has made us very proud. Thank you to those of you who continue to check on us, it means so much. For all of you, we wish you a healthy, happy, and very prosperous 2004, and we hope you will continue to keep those fighting the battle of their lives in your prayers, and help us to continue fighting to find a cure for cancer. May God bless you all!

May the angels keep you til morning.
May they guide you through the night.
May they comfort all your sorrows.
May they help you win the fight.
May they keep watch on your soul.
May they show you better ways.
May they guard you while you're sleeping.
May they see you through your days.
May they show you new hopes.
May they still your every doubt.
May they calm your every fear.
May they hear you when you shout.
May the angels keep you till morning.
More than this I cannot pray.
And if the angels ever fail you,
Then may God be there that day.

~author unknown~

Saturday, December 13, 2003 9:52 PM CST

MERRY CHRISTMAS...May you all find peace, love, and happiness during this beautiful holiday season....and may heaven bless you with the kind of Christmas gifts that never ever end.
Thank you for remembering us, thank you especially for remembering Justin.
God bless everyone.

Monday, November 24, 2003 3:42 PM CST

As the holiday season approaches, there is a constant ache in my heart from missing Justin so much. I wonder often if it will ever go away, but I know it won't. Our family is doing well, but we will never be the same. But perhaps we will be better in some ways, because we value the time we have together and try to love with all we can. Enjoy the holidays together. Take time to share your love and don't sweat the small stuff. Life is too short.

THROUGHOUT THE SEASON OF THANKSGIVING, MAY OUR HEARTS BE FULL OF LOVE FOR ALL HUMANKIND. LET US DRAW NEAR TO FAMILY AND FRIENDS AND REACH OUT TO STRANGERS. IN OTHER WORDS, MAY WE ACT MORE LIKE ANGELS.

Thanksgiving is....

Thanksgiving is a
time of gratitude to God,
our Creator and Provider,
whose guidance and care
go before us...
and whose love
is with us forever.

Thanksgiving is a time
to reflect on the changes,
to remember that we, too,
grow and change
from one season of life to another.

Thanksgiving is a time
of changing seasons,
when leaves turn golden
in Autumn's wake
and apples are crisp
in the first chill breezes of fall.

Let us remember the true meaning of Thanksgiving.
As we see the beauty of Autumn,
let us acknowledge the many blessings
which are ours...
let us think of our families and friends..
whether on Earth or in Heaven above...
and let us give thanks in our hearts.

Author Unknown

Saturday, November 8, 2003 5:49 PM CST

May the angels keep you till morning.
May they guide you through the night.
May they comfort all your sorrows.
May they help you win the fight.
May they keep watch on your soul.
May they show you better ways.
May they guard you while you're sleeping.
May they see you through your days.
May they show you new hopes.
May they still your every doubt.
May they calm your every fear.
May they hear you when you shout.
May the angels keep you till morning.
More than this I cannot pray.
And if the angels ever fail you.
Then may God be there that day.

Saturday, September 20, 2003 9:42 PM CDT

The past couple of days have been hectic thanks to an unwelcomed visit from Hurrican Isabel. I spent a few days working around the clock at the hospital while Paul and Courtney took care of things at home. We made out pretty well compared to some. Some of the damage we have seen has been horrible, but fortunately everyone is safe! Definately had a angel watching over us!!
Wednesday the 17th was Courtney's 20th birthday. She had big plans to attend a concert which was cancelled at the last minute because of the hurricane, but I think she had a good evening anyway. It's hard to believe she is 20 already! And it's special days like birthdays and holidays that missing Justin is so hard.....

We are never truly alone.
Angels wipe away our tears;
they tend the tender human heart,
Our pain, our grief, our fears.

Monday, September 1, 2003 9:21 AM CDT

We are always thinking of you Justin, always loving you.

Oh, to leave my wordly cares
Behind me far below,
To chase the clouds up to the sun,
And dwell where angels go.

If I could only catch the wind
and soar where angels fly,
I would ride upon the breeze
And climb to heaven high.

Tuesday, August 26, 2003 11:52 PM CDT

Thank you to everyone who remembered Justin's birthday! It means so much to us to know that Justin is still in your thoughts. We spent his 18th birthday in sunny Mexico. We figured we had to celebrate big for this one! Being together as a family makes the day a little easier to get through. Thank you again for remembering...

Heaven's Grocery Store

As I was walking down life's highway
many years ago
I came upon a sign that read
Heavens Grocery Store.

When I got a little closer
the doors swung open wide
And when I came to myself
I was standing inside.

I saw a host of angels.
They were standing everywhere
One handed me a basket and said
"My child shop with care."

Everything a human needed
was in that grocery store
And what you could not carry
you could come back for more

First I got some Patience.
Love was in that same row.
Further down was Understanding,
you need that everywhere you go.

I got a box or two of Wisdom
and Faith a bag or two.
And Charity of course
I would need some of that too.

I couldn't miss the Holy Ghost
It was all over the place.
And then some Strength
and Courage to help me run this race.

My basket was getting full
but I remembered I needed Grace,
And then I chose Salvation for Salvation was for free
I tried to get enough of that to do for you and me.

Then I started to the counter
to pay my grocery bill
For I thought I had everything
to do the Masters will.

As I went up the aisle
I saw Prayer and put that in,
For I knew when I stepped outside
I would run into sin.

Peace and Joy were plentiful,
the last things on the shelf.
Song and Praise were hanging near
so I just helped myself.

Then I said to the angel
"Now how much do I owe?"
He smiled and said
"Just take them everywhere you go."

Again I asked "Really now,
How much do I owe?"
"My child" he said, "God paid your bill
a long long time ago.

I love you Jussy!!

Thursday, June 12, 2003 11:57 AM CDT

STOOD BY YOUR BED

I stood by your bed last night, I came to have a peep.
I could see that you were crying, you found it hard to sleep.

I sung to you softly as you brushed away a tear,
"It's me, I haven't left you, I'm well, I'm fine, I'm here."

I was close to you at breakfast, I watched you pour the tea,
You were thinking of the many times your hands reached down to me.

I was with you at my grave today, you tend it with such care.
I want to reassure you, that I'm not lying there.

I walked with you towards the house, as you fumbled for your key.
I gently put my hand on you, I smiled and said "it's me."

You looked so very tired, and sank into a chair.
I tried so hard to let you know, that I was standing there.

It's possible for me to be so near you every day.
To say to you with certainty, "I never went away."

You sat there very quietly, then smiled, I think you knew ...
in the stillness of that evening, I was very close to you.

The day is over... I smile and watch you yawning
and say "goodnight, God bless, I'll see you in the morning."

And when the time is right for you to cross the brief divide,
I'll rush across to greet you and we'll stand, side by side.

I have so many things to show you, there is so much for you to see.
Be patient, live your journey out ... then come home to be with me.

Author Unknown

Saturday, April 5, 2003 10:23 PM CST

Hi Everyone,
As you know, yesterday was the third anniversary of Justin's journey to heaven. The past three years have been the most difficult of my life, And I still feel a need to find a purpose for Justin's death. So...we work, we continue to fight for what we believe, and we attempt to carry on the lagacy that was created by Justin. Tonight is Daylight Savings time. We turn the clocks ahead one hour. Those of you who attended Justin's funeral may remember Justin's Uncle Ed talking about Justin, and reminding all of you that Daylight Savings Time is a great way to remember "Justin Time". As I have done in the past, I would like to share Edwards words once again, and remind you all about "Justin Time" and how you could be "just in time" to help another person in need.

Excerpt from Eulogy for Justin April 8, 2000

In this time of anguish, one very kind and considerate question that has continuously been asked of the family is "Is there anything we can do to help?". At first blush, the tendency is to answer "Thank you, outside of your prayers, we really cant think of anything more that you can do". But looking at this crowd, and knowing the way this community has come together in support of Justin and the Thatcher family, perhaps Justin has provided us with another answer to that question: "There is more we can all do"!

Among those of us here at St. Gregorys, at least among the adult population, Im sure that there is a very high proportion of the audience that has been tested for the National Marrow Donor Program, far disproportionate in relation to nationwide statistics. That is a wonderful tribute to Justin in itself, yet the fact islets say for those of us over "30"our time on the National Registry will run its course as we each turn 60 years of age. To you adults here, not in the Program or on the Registry, we urge you to do so.

But what I really would like to do today is convey my message to the young people in attendance: Justins many wonderful friendshis neighbors, his classmates, teammates, and friends who have come to know him through so many different ways, including his webpage and guestbook. Those of you in your mid-teens already know quite well of certain "Rights of Passage" so to speak that will come your way as you attain different age levelsDrivers License at 16 for example, and those of you who are clever already know of some other privileges that will accrue to you when you turn 18 or 21 years of age.

I ask that you seriously consider adding a new "Right of Passage" to your own list for the years ahead, one that can honor Justin Thatcher. Just as you saw Justins extended family bring our "Gifts" up to the altar as a part of this funeral mass, so too can you bring a "gift" forward in Justins namethe "Gift of Life". When you turn 18 years of age, each of you will be eligible individually to be tested for the National Marrow Donor Program. It will cost you a few dollars, but you will find that process itself far less painful than it was for you to come to church today to mourn the loss of a friend.

A positive aspect of your "Gift of Life", being tested soon after youve turned 18, is that you will then be a part of the National Registry for over 40 years into the future. What a wonderful legacy for Justin, and it is something you easily "can do to help". As you grow in the years to come, as you head off to college, enter the working world, and eventually have a family of your ownremember to encourage your friends and family to also consider the "Gift of Life" by simply being tested themselves.

Today we are here because a "match" could not be found for Justin, yet weve also heard that a local Navy man, tested in one of the many drives for Justin, has recently learned he is the "perfect match" for someone out there in need. We know there are other recipients out there as well, desperately seeking their potential donor match! By being tested once you are eligible at 18, your "Gift of Life" just might save the life of someone elses loved one out thereor perhaps another donor might at sometime in the future be there for someone as close to you as Justin is to all of us, someone you love!

To help you remember this plea, I would like to give you a "visual aid". Think back to last weekend, April 2nd, as we all advanced our clocks forward to "Daylight Savings Time". On April 4th, God advanced Justins clock forward a lifetime! In memory of Justin, and to his legacy in your future "Gift of Life", each year in the Spring as you advance your clocks forward in the countdown to your 18th birthdayI ask that you discard the term "daylight savings time" in favor of a new one: "Justin Time". Perhaps your Gift will be the very one that is "Just In Time" to save a life?

That is our answer to the question of "what you can do"; we can think of no greater tribute in Justins honor than that. Each of you can be the legacy that keeps Justins flame, and Justins smile, alive for the years to come.

Thank you all....

AND TO MY JUSTIN,
The horrible ache in our hearts never goes away, but the love for you still grows with each passing day. May God continue to hold you closely in His loving arms, untill we meet again. We miss you, we love you always.

GOD LOOKED AROUND HIS GARDEN AND FOUND AN EMPTY PLACE. HE THEN LOOKED DOWN UPON THE EARTH AND SAW YOUR TIRED FACE. HE PUT HIS ARMS AROUND YOU AND LIFTED YOU TO REST. GOD'S GARDEN MUST BE BEAUTIFUL, HE ALWAYS TAKES THE BEST. HE KNEW YOU WERE SUFFERING, HE KNEW YOU WERE IN PAIN. HE KNEW YOU WOULD NEVER GET BETTER ON EARTH AGAIN. HE SAW THE ROAD WAS GETTING ROUGH, AND THE HILLS WERE HARD TO CLIMB. SO HE CLOSED YOUR WEARY EYELIDS AND WHISPERED "PEACE BE THINE". IT BROKE OUR HEARTS TO LOSE YOU, BUT YOU DIDN'T GO ALONE, FOR PART OF US WENT WITH YOU THE DAY GOD CALLED YOU HOME.
WE WILL ALWAYS LOVE YOU, JUSTIN.
Mom, Dad, and Courtney

Saturday, March 29, 2003 4:06 PM CST

Tonight is First Colonial High School's Junior Prom. I took a picture of Justin's buddy Bobby with Courtney as he was leaving. Justin should be going to his prom tonight. Instead of thinking of this 3 year angel anniversary, I should be taking pictures of Justin and his date as they are on their way to the prom. This life without Justin is still so hard to believe, still so painful.....

Friday, March 7, 2003 6:26 PM CST

Hi Everyone,
I really don't have much to update on us, but just wanted you all to know how much it means to us that you are still here, checking in and sending messages to Justin. It is so hard to believe that it has been 3 years since we were fighting this battle, still hoping to win.
Wishing you all peace.

Justin,
We miss you so much and think of you every minute of each day.

LITTLE DID WE KNOW THAT MORNING,
GOD WAS GOING TO CALL YOUR NAME.
IN LIFE WE LOVED YOU DEARLY,
IN DEATH WE DO THE SAME.

YOU LEFT US BEAUTIFUL MEMORIES,
YOUR LOVE IS STILL OUR GUIDE.
AND THOUGH WE CANNOT SEE YOU,
YOU ARE ALWAYS AT OUR SIDE.

OUR FAMILY CHAIN IS BROKEN,
AND NOTHING SEEMS THE SAME.
BUT AS GOD CALLS US ONE BY ONE,
THE CHAIN WILL LINK AGAIN.

UNTIL WE MEET AGAIN....
WE LOVE YOU JUSTIN!

Saturday, January 25, 2003 at 1535PM (CST)

Wishing you all warm and sunny days. Hope you are finding a way to keep warm!
We are kicking off our 2003 Relay for Life fundraising, so you'll all be hearing from us at some time or another. Maybe one of these days, there won't be any such thing as cancer, and fund raising to find a cure will be behind us. Every day it seems like I hear of more and more people, includung children, who have been diagnosed with this horrible disease. Of course, too many people think cancer only happens to other people. I used to be naive like that too. It's too bad that sometimes we have to learn things the hard way. For now, I have to find reason for Justin's death. I need to know that the endless tears and aching heart serve a purpose. I need to do something to make Justin proud of me, like I am of him. I hope you will join Courtney, Paul, and me in our efforts with Relay. I hope we can count on your support. I hope and pray that this will be as close as cancer ever gets to you or your family.
There is a little girl named Alex who has relapsed with AML for the SEVENTH TIME, and she will be needing another transplant. I have mentioned Alex in the past. Her family has gone through an incredible journey including the recent birth of a premature infant and near death of mom. Please check out her website and keep Alex in your prayers. Her website is www.alexupdate.com

Justin,
We mention your name
We speak of you often
God bless you my child
You are never forgotten.

We remember your smile
We remember your love
God bless you and keep you
In heaven above.

I love you!

Thursday, January 02, 2003 at 09:00 PM (CST)

WISHING YOU ALL A BELATED HAPPY AND HEALTHY 2003. It's hard to believe it will be three years since our transplant journey began. Some days it seems like time stands still. Other times it flies by... We still miss Justin more than ever. Broken hearts never really heal.

THE YEAR BEFORE LAST

Author unknown.

The holiday season is approaching,
and with it comes the New Year.
Although for me time passes slowly,
New Year's Day will ring in quickly.

I dread this New Year's Day
because they will look at me
in a terribly strange way
when I get misty-eyed,
and talk about something you had done.

After you first left me,
they reasoned when I cried,
"He's only been gone a few months."
And I would catch that look of
understanding in their eyes,
and found some comfort that they knew.

But on last New Year's Day,
my first thought upon awakening was,
Oh God, my son died last year,
not just a few months ago, not even this year,
but last year.
He will never live in this year.

They didn't understand, they didn't reason,
that last year, for me, the loss was still new.
They thought, "It happened last year,
so long ago, why does she still cry?"
I could see it in their eyes.

This New Year's Day, will it be different?
Will my first thought upon awakening be,
Oh God, my son died the year before last,
not a few months ago, not this year or even last year,
but the year before last?
He will never live in this year.

Will they even listen, should I not look them
in the eyes, for fear that I shall see,
"Why is she still crying? It happened so long ago.
It was the year before last."

Those words that we use
to describe the passage of time,
a few months,
this year,
last year, the year before last.
They don't know that time stands still for me.

Will they understand that's why I cry?
Don't they know
my son just died ...
the year before last?

I love you Justin.

Thursday, December 12, 2002 at 09:03 AM (CST)

Wishing you all a most joyous Christmas holiday and many blessings for a wonderful New Year! Please continue to hold Justin's memory warmly in your hearts.

Christmas Eve
by Dr. Richard Dew

Silent night, holy night...

"It's about time," he says quietly.
Deliberately, wordlessly,
They gather the materials
Carefully put away last year,
The matches, candle, candle jar
To fend off the harsh winter wind.

Tis the season to be jolly...

Slowly they drive toward the town's edge,
Past homes with bright, blinking bulbs.
Cars of faraway relatives
Fill their drives. Happy, laughing
Families, children home from school,
Pass by on the way to midnight Mass.

It's the most wonderful time of the year...

At last, town lights left far behind,
They sit mute, each wrapped in private
Cocoons of memories of Christmas past,
Excited whispers from their room,
Silly giggles, fervent good-night
Kisses, anticipation of morning.

On a cold winter's night that was so deep...

Through the gate, down the drive, engine killed.
Frozen grass crunching underfoot
Hand-in-hand they walk up the hill
To the familiar moonlit stone.
With practiced hands they brush it clean,
Then prepare their votive Noel.

The world in solemn stillness lay...

Lump in throat, arm-in-arm,
Candle lit, they stand and weep,
But not so bitter as in years past.
The pain's as deep but not so long,
As once again they dream of things
That should have been but never were.

The stars in the sky look down where he lay...

"Let's go," he says. She nods assent.
They leave, though turn back once to see
The lonely flame of their lost child
Gleaming peacefully through the dark.
He whispers softly, his visit done,
"Merry Christmas and good-night, my child."

Sleep in heavenly peace,
Sleep in heavenly peace.

Sweet dreams angel, I LOVE YOU!
Mommy

Sunday, November 24, 2002 at 12:56 AM (CST)

Thanksgiving is....

Thanksgiving is a
time of gratitude to God,
our Creator and Provider,
whose guidance and care
go before us...
and whose love
is with us forever.

Thanksgiving is a time
to reflect on the changes,
to remember that we, too,
grow and change
from one season of life to another.

Thanksgiving is a time
of changing seasons,
when leaves turn golden
in Autumn's wake
and apples are crisp
in the first chill breezes of fall.

Let us remember the true meaning of Thanksgiving.
As we see the beauty of Autumn,
let us acknowledge the many blessings
which are ours...
let us think of our families and friends..
WHETHER ON EARTH OR IN HEAVEN ABOVE...
and let us give thanks in our hearts.

Author Unknown

HAPPY THANKSGIVING TO ALL... I LOVE YOU SO MUCH JUSTIN!

Thursday, October 17, 2002 at 07:29 PM (CDT)

Dear JUSTIN,

The moment that you died,
Our hearts split in two,
The one side filled with memories,
The other died with you.

We often lay awake at night,
When the world is fast asleep,
And take a walk down memory lane,
With tears upon our cheeks.

Remembering you is easy,
We do it every day,
But missing you is a heartache,
That never goes away.

We hold you tightly within our hearts,
And there you will remain,
Life has gone on without you,
But it never will be the same.

For those who still have their children,
Treat them with tender care,
You will never know the emptiness,
As when you turn and their not there.

Author Unknown

Tuesday, September 17, 2002 at 11:47 AM (CDT)

HAPPY BIRTHDAY COURTNEY!!!! WE LOVE YOU!!

Just wanted to ask all of you to say some prayers for Tommy Burnette. He is an 8 year old little boy from Duke. He has had THREE transplants, the first was before Justin had his. Tommy and his family have been going through this miserable transplant life for three years now and Tommy will soon become another of God's angels. Visit his website and please keep Tommy and his family in your prayers. www.erols.com/tburnette
Thanks.

Friday, September 13, 2002 at 08:30 AM (CDT)

Hi Justin,
I just felt like writing to you... I miss you so much. We think of you constantly, not a minute of the day goes by that you aren't with me. Hope you know that. I long to hear your sweet voice and see your beautiful smile. I can't wait to see you again! Courtney still hurts for you so much, but I bet you are proud of her for all she is doing with her life now! She's really enjoying college and I just know you are watching over her. We really need to feel you with us Jussy. Don't forget, we love you more and more each day, and pray that one day we will all be together again as a family.
I love you most.
Mommy

Saturday, August 17, 2002 at 08:05 PM (CDT)

Hi Everyone,
Just wanted to thank all of you who took the time to leave birthday messages for Justin and our family. As you can guess, it is not an easy day to get through. We have made it sort of a ritual to take a family vacation the week of Justin's birthday, and that seems to help us to get through the day a little easier. Being with family and sharing "Justin stories", being able to laugh and cry together does us good. This past week we spent at Sanibel Island in the Gulf of Mexico. Courtney and I were on the beach one day looking for shells. At about the same time as I scooped up a net full of shells, I commented that I wished Justin was with us. Then I looked down into the net, and there sitting on the very edge of the net, were 3 shells that were perfectly arranged to look like an angel, wings and all. Courtney and I thought it was a great sign that Justin was on our shoulders watching and sharing in our family vacation! It's so hard to believe that Justin would be 17 today! I try to imagine what he would be like now. I want to see him, touch him, hear him. Time sure has a way of slipping by, but I am still unable to comprehend a lifetime without him. Thank you again for remembering, and for taking the time to let us know.

Hey Justin,
How are you? Wow, 17 today!! Hope you are having the greatest birthday in heaven! Did you hear me singing to you??? I just wish I could give you the kind of birthday that Moms like to give their 17 year old sons! Loving you with all of my heart is the best I can do for now, until I see you again. I know you will always be Courtney's little brother, but since you are probably taller than her, can you do me a favor and keep a close eye on her, watch over her and keep her safe and happy as she starts college next week? I know you are as proud of her as we are! Thanks Jussy, I love you. I love you MOST!
HAPPY BIRTHDAY BABY!!!!
Love, Mommy

Tuesday, July 23, 2002 at 09:02 PM (CDT)

THE TIDE RECEDES
BUT LEAVES BEHIND
BRIGHT SEASHELLS ON THE SAND.

THE SUN GOES DOWN
BUT GENTLE WARMTH
STILL LINGERS ON THE LAND.

THE MUSIC STOPS
AND YET IT ECHOES
IN THE SWEET REFRAINS.

FOR EVERY JOY
THAT PASSES
SOMETHING BEAUTIFUL REMAINS.

I miss you Justin, more than you'll ever know.
Love always,
Mommy

Sunday, June 16, 2002 at 10:22 AM (CDT)

Hi Justin,
I know you have been with us this weekend, but I just thought I'd share a few thoughts. Friday night was really exciting for us to watch Courtney graduate from High School. I am so proud of her and I know you must be also. Please continue to watch over her Jus, and keep her happy and safe during all of these celebrations. She brings me so much joy now and watching her finally smile again and be happy, really lifts my spirits. After graduation, Daddy and I headed to Relay for Life for the next 16 hours. They all still remember you Justin. You had well over a hundred luminaries lit in your memory, and they burned for hours and we overheard many people saying your name and remembering your story. Our little "Friends of Justin" teams raised over $20,000 in your memory. I have not yet heard if Relay reached their $2 million goal, but I know they were close.
And today, well, it's Father's Day. Let Daddy know you are here. He loves you and misses you so much.
Courtney and I overheard a beautiful song by Josh Groban last weekend on our way to church. I finally found it and now I can sing it to you. Can you hear me? I love you Justin.

TO WHERE YOU ARE

WHO CAN SAY FOR CERTAIN
MAYBE YOU'RE STILL HERE
I FEEL YOU ALL AROUND ME
YOUR MEMORY'S SO CLEAR

DEEP IN THE STILLNESS
I CAN HEAR YOU SPEAK
YOU'RE STILL AN INSPIRATION
CAN IT BE

THAT YOU ARE MY
FOREVER LOVE
AND YOU ARE WATCHING OVER ME
FROM UP ABOVE

FLY ME UP TO WHERE YOU ARE
BEYOND A DISTANT STAR
I WISH UPON TONIGHT
TO SEE YOU SMILE

IF ONLY FOR AWHILE
TO KNOW YOU'RE THERE
A BREATH AWAY'S NOT FAR
TO WHERE YOU ARE

ARE YOU GENTLY SLEEPING
HERE INSIDE MY DREAM
AND ISN'T FAITH BELIEVING
ALL POWER CAN'T BE SEEN

AS MY HEART HOLDS YOU
JUST ONE BEAT AWAY
I CHERISH ALL YOU GAVE ME
EVERY DAY

CAUSE YOU ARE MY
FOREVER LOVE
WATCHING ME
FROM UP ABOVE

AND I BELIEVE
THAT ANGELS BREATHE
AND THAT LOVE WILL LIVE ON
AND NEVER LEAVE

FLY ME UP TO WHERE YOU ARE
BEYOND A DISTANT STAR
I WISH UPON TONIGHT
TO SEE YOU SMILE

IF ONLY FOR AWHILE
TO KNOW YOU'RE THERE
A BREATH AWAY'S NOT FAR
TO WHERE YOU ARE

I KNOW YOU'RE THERE
A BREATH AWAY'S NOT FAR
TO WHERE YOU ARE...

I miss you baby.
Love, Mommy

Wednesday, May 15, 2002 at 04:19 PM (CDT)

DRIVING

You know how it is when you are driving:
suddenly you realize you have driven several miles,
but you don't remember getting there.
With grief the miles are years.
Driving is habit. The destination changes;
you are to turn left, but you still turn right.
When the child in the store calls, "Mom!"
I turn the way I always did.
We detour to avoid obstacles.
I drive blocks out of my way to bypass his playground.
If you are old enough, you will see
a car like one you owned when you were young,
and you will travel back through time.
Yesterday, I saw my child
in the passenger seat of a small car
approaching a red light. I changed
lanes to get a better look.
His head was the same, his blue eyes familiar.
He was close,
but his mother drove him away.
I should have driven forward, but I couldn't.
Wiping my eyes, I could see in my rear-view mirror
the driver behind me honking his horn, screaming,
"What's the matter with you?" The question
I was asking myself.

(S. Wagner)

Saturday, April 27, 2002 at 07:12 PM (CDT)

Got a picture of you I carry in my heart
Close my eyes to see it when the world gets dark
Got a memory of you I carry in my soul
I wrap it close around me when the nights get cold
If you asked me how I'm doin', I'd say just fine
But the truth is, if you could read my mind

Not a day goes by that I don't think of you
After all this time you're still with me it's true
Somehow you remain locked so deep inside
Not a day goes by

.....Minutes turn to hours, and the hours to days
Seems it's been forever that I've felt this way

Not a day goes by that I don't think of you
After all this time you're still with me it's true
Somehow you remain locked so deep inside
Not a day goes by

LOVE YOU FOREVER JUSSY....

Monday, April 01, 2002 at 12:14 AM (CST)

Happy Easter...Happy Spring...
It's so hard to believe that another April is here and this Thursday will be the second anniversary of Justin's death. The past two years have been indescribably painful for our family, although with the pain, we have had many blessings. I try to continue looking at our experience as something positive. So many people have been blessed with a chance at life from the bone marrow drives, and that number will continue to grow. We also had the opportunity to meet so many wonderful families and to be blessed with knowing that Justin touched their hearts in some way. I am still so proud of Justin. I feel like he really used his time on this earth to accomplish a lot of quality living. And he was a happy person. He knew how to have fun. He was definately not an angel on earth, but he did know when to be a gentleman. I feel so good to think that I had a part of that. I just hope he knew how much he was loved. When I read the pages of the guestbook, I am still touched. It is such a warm feeling to see that each day, someone is remembering. You have no idea how important it is to us to know that Justin is remembered. Every single day, my mind wonders to a day during his illness, and I hope that I made the right decisions... and wonder if things could have been different only if... Then I try to remember that God has a plan for us all, and that He does things in His time, not ours. So...remember that life is for living, to enjoy and be happy. It can be very short, so be good to each other and live so that you can be proud of yourself!

Jussy, I know your up there watching over us all. Hope you can feel our love for you, as time has only strengthened it. I miss you. I try to imagine how you would look now. I can see your smile and I feel it tugging at my heart. I wish I could hear your voice, and feel your touch. Someday we will all be together again, and that will be heavenly. Until we meet again sweet baby, watch over us. Take care of Courtney, she loves you so.

GOD LOOKED AROUND HIS GARDEN AND FOUND AN EMPTY PLACE. HE THEN LOOKED DOWN UPON THE EARTH AND SAW YOUR TIRED FACE. HE PUT HIS ARMS AROUND YOU AND LIFTED YOU TO REST. GOD'S GARDEN MUST BE BEAUTIFUL, HE ALWAYS TAKES THE BEST. HE KNEW YOU WERE SUFFERING, HE KNEW YOU WERE IN PAIN. HE KNEW YOU WOULD NEVER GET BETTER ON EARTH AGAIN. HE SAW THE ROAD WAS GETTING ROUGH, AND THE HILLS WERE HARD TO CLIMB. SO HE CLOSED YOUR WEARY EYELIDS AND WHISPERED "PEACE BE THINE". IT BROKE OUR HEARTS TO LOSE YOU, BUT YOU DIDN'T GO ALONE, FOR PART OF US WENT WITH YOU THE DAY GOD CALLED YOU HOME.
WE WILL ALWAYS LOVE YOU, JUSTIN

Tuesday February 12, 2002 1:00 PM CST

Hi Everyone,
The month of February is supposed to have been Justin's REbirthday month. Two years ago was such an exciting time for us, and we had so much hope for Justin's future. For me, it was also a wonderful time to spend with Justin and learn what a special child he really was. It was a time to count my blessings and to take notice of all the wonderful gifts God had given our family. In a way, Justin's illness was like a gift that helped to bring our family closer. But what a painful lesson we learned. I hope each of you reading this journal will take a minute to be thankful for your friends and families. life is so short and grief lasts forever.

I wanted to let everyone know that we made $880.00 on our first Relay for Life fundraiser, so we are off to a great start. And Lynnhaven won the basketball game! We are asking that if anyone else wants to be on our relay team, to please have all registration forms turned in to us by this friday, Feb.15th.

Thanks for your support!

Friday February 1, 2002 5:58 AM CST

Hi Everyone,
We're having our first fundraiser for Relay for Life and we are really hoping for a great turnout. There will be a charity basketball game this Tuesday, February 5th at 6PM. The game is at Great Neck Middle School on Great Neck Road and it will be a faculty game, GNMS staff against Lynnhaven Middle School staff. Tickets are $3.00 and will be available at the door. Last year, LMS won the game. It's a fun game, but more importantly, the procedes all go to the American Cancer Society. Hope to see you all there!
Thanks...

Wednesday, January 09, 2002 at 07:13 PM (CST)

Hi Everyone,
Hope you all had a great holiday. Just wanted to say Happy New Year and thank you all for being such wonderful friends to us, and for helping us to keep Justin alive in our hearts. Every single day, there are wonderful memories that come to mind about Justin. Along with the memory comes laughter and tears... The beautiful snow storm we had last week reminded me of the night Justin and I made our journey to Duke, plowing our way through 23 inches of snow!! Hard to believe that it was two years ago. I remember Justin's concern when we heard on the radio that vehicles were not to be on the road unless they had four wheel drive, and I told him that I had four wheels on my car, so we were safe! My attempt at humor led Justin to believe he had the dumbest mom alive!
Well, we are getting ready to kick off our "Friend's of Justin" Relay for Life teams, so we are looking for some people who really want to do some fund raising. Last year we had some people who were great fund-raisers and helped us raise $40,000! Then there were a few other people who didn't do anything. We need the workers, you know who you are!! Hope we can count on you again this year!
A quick update on Abby for those of you are interrested. She is at day +16 post bone marrow transplant, and finally showing some signs of cell growth! Please keep her in your thoughts and prayers!
Keep warm!

Sunday, December 16, 2001 at 11:51 AM (CST)

Hi Everyone,
The basketball game was a great fundraiser! We raised about $2000 for Justin's scholarship fund. The gym at FCHS was packed and once again, the support from this community was overwhelming. We are so thankful to everyone who made the event possible! As soon as the holidays are over, we will begin working on "Relay for Life."
December is one of the most difficult months for us. It's a time for fun and families, and our family has a huge chunk missing. It never goes away. The empty, painful feeling in my heart is always there. We try to get closer to each other, thinking that maybe we can fill the gap, but it doesn't work. One thing good about the Christmas holiday is that it's a reminder to me that God will let me be with Justin again one day!
I hope you will all remember to check on Abby frequently, and keep her in your prayers. She is currently getting ready for transplant at Texas Children's Hospital in Houston, and her mommy will be her donor. (www.caringbridge.com/va/abbyallies)Abby seems to have a special connection to angels, so I have a feeling Justin is right there!
From our family to yours, we wish you a wonderful Christmas, and a happy, healthy 2002.

Justin, I love you!!

Tuesday, November 27, 2001 at 09:57 PM (CST)

Hi Everyone,
There are a couple of things I want to share with you. First of all, First Colonial High School is hosting a fund-raiser basketball game on Tuesday, December 4th for Justin's scholarship fund. I hope you will all come out and support us! There will be 2 games, the first game is at 5:30pm and will be FC girls against Catholic High girls. The second game will be at 7:30pm, FC boys against Cape Henry boys. The tickets are $4 and you can get them from us or at the door. Hope to see you all there! Dec 4th is the anniversary of our huge bone marrow drive. Two years ago we were still hoping to beat this and hoping to find a bone marrow match. Well, anyway...we still need your support. Hope to see you all at the game on Tuesday. It means a lot to us.
Another thing I'd like to ask of you... there is a little girl in Chesapeake who was diagnosed with AML in August 2000. Her name is Abby. I have followed her progress since that time, and she has been in remission since last September. Her parents have just learned that she has relapsed and will be going to Texas Children's Hospital for a transplant. Abby is a special little girl and I know the ache and fear in her parent's hearts too well. Please keep Abby in your thoughts and prayers, and visit her website if you can and leave a note for her. Her website is www.caringbridge.com/va/abbyallies
Hope you all had a great Thanksgiving. Hard to believe Christmas is just a few weeks away. I hope you will please take time during this busy holiday season to remember why we celebrate Christmas, remember that is is more fun to give than to receive, and enjoy sharing this time with friends and family.
Happy Holidays!

Tuesday, November 20, 2001 at 08:52 PM (CST)

Hi Everyone,
I haven't updated for awhile, so I thought I'd leave a note for all of you who are still so faithful at checking in and leaving notes. First of all, Kelley's family was so grateful to everyone for all of the prayers and good wishes sent for her brother, Michael. He is now home from the hospital, and a very fortunate young man. Please continue to keep him in your thoughts and prayers.
Hard to believe it is the end of November and the holidays are upon us once again. It is not the most cheerful time of the year for us, and I can't imagine that it ever will be again. Justin is still a very large part of my thoughts every single hour of every day. Time has lessened the intensity of the pain, but it will never go away. There are some days when it all seems so fresh and I feel like I have been kicked in the stomach. I still can't imagine not seeing him for the rest of my days on this earth, and if I didn't have faith, and trust God that I would see him again, I don't think I could survive this ordeal. During this time of Thanksgiving, please take time to be thankful for your families. Remember that life on earth is short and thank God for the blessings He gives us. Try not to worry about the little things that aren't really important. I wish you all a wonderful holiday. Thank you for your continued prayers for our family and for your constant support. Thank you for remembering Justin. To me, there is nothing I wish for more!!

Jussy, I love you!

Thursday, October 25, 2001 at 08:17 PM (CDT)

Hi,
I have a special favor to ask of everyone. Anyone who has followed Justin's Page and has read any of the guestbook entries, has surely seen the many messages left by Justin's special friend, Kelley. Please remember Kelley and her family, especially her brother Michael in your thoughts. Michael is very ill and needs your prayers more than anything. Please feel free to leave a note for Kelley in the guestbook, I know she checks it every single day. She and her family have been there for us in more ways than you can imagine. Please pray for Michael. Kelley, we are here for you sweetie and we love you dearly. I hope you feel an angel on your shoulder, for I can't imagine anyplace else Justin would be right now.
Thanks everyone.

Monday, October 08, 2001 at 09:43 PM (CDT)

October 8th...another day I'll never forget. The beginning of the end.

I'll lend to you for a little while, a child of Mine, He said.
For you to love while he lives, and mourn for when he's dead.
He may be three or four, or twenty-two or three,
but will you, till I call for him, take care of him for Me?
I cannot promise he will stay, since all from earth return,
but these are lessons taught down there I want this child to learn.
I've looked this wide world over, in my search for teachers true,
and in the throngs that crowd life's ways, I have selected you.
Now will you give him all your love nor think your labor vain,
nor hate me when I call for him and take him home again?
I fancied when I heard them say "Dear Lord thy will be done".
For all the joy this child can bring, the risk of grief we'll run.
We'll shelter him with tenderness, we'll love him while we may,
and for the happiness we have known, forever grateful we will stay.
But should the angels call for him much sooner than we'd planned,
we'll brave the bitter grief that comes and try to understand.
Another little lamb, has gone home to Him who gave,
another darling child, is sheltered in his grave.
God needed one more Angel amidst his shining band,
and so He bent with a loving smile and took my Justin's hand.

I will always love you Justin.

Thursday, October 04, 2001 at 05:48 PM (CDT)

Hi Everyone,
Well, it's been 18 months today that we've been without Justin. It is so hard to believe, even after all this time, that he isn't coming home to me. I like to think that each day on this earth is one day closer to being with him. Someone once told me that when your child dies, you will never again fear death. That is so true. I know I have much to do in this life yet, but I find comfort in knowing that Justin will be there for me when I leave. This experience has really been a test of faith, but I find my faith in God is only strengthened because of my need to know that I will see Justin again. As his mommy, I can only pray that he is happy and healthy, and still able to feel our love for him. October is a difficult month. Two years ago, we were still a "normal" family, rushing through life, without a care in the world. Oct. 8th, our lives changed forever, and too late, we learned that life is too short to worry about the unimportant things. Take time to be with family. Take time to show your love. Take time to thank God for all the good He does for us. Take time to appreciate others.

I have a special request. You may remember our friend Jenna who has had such a long and difficult transplant journey. Jenna is such an inspiration. If you have followed her website at all, then you know that she and her family have amazing faith. They are very quick to thank all of those who have prayed for Jenna's healing. Now her brother Gabriel needs prayers. He was involved in a serious accident and has some very significant injuries to his spine. Please check in on Jenna's website if you get a chance to let them know that you care. Her website address is
www.caringbridge.com/page/jennaswebsite

Thanks! God bless.

Sunday, September 16, 2001 at 09:21 PM (CDT)

Hi Everyone,
Hope you will help me to wish my sweet Courtney a HAPPY 18th BIRTHDAY!!! It's hard to believe she is already 18 (Sept 17) and I know that these special days are still so hard for her without her little brother. I love you Courtney!!

Well, it's been such a difficult week for our country. The events of September 11 are still so fresh in my mind, and in my heart I feel pain for all of those who have lost loved ones. I pray that God gives them the strength they will need to go on. I can't even begin to imagine the horror that I see on TV. I actually found comfort in knowing that Justin was safe...

On September 11, thousands of
Americans lost their lives to a
senseless and cowardly act of terrorism
and an entire nation mourned.
However, these terrorists
knew nothing about the
American spirit.
They greatly underestimated our
strength, resolve, and bravery.
We've met with disaster,
but we've come together in the midst
of adversity and found strength
through one another.
We refuse to be beaten, bullied,
or weakened by terrorists.
And we are far from helpless.
We will stand together through
this crisis, and we will heal.
We will raise our flag
and let it fly high and victorious
beneath the stars.
And we will emerge stronger
than ever before,
united through our pride,
our compassion,
and our faith in God.

~ by Bobette Bryan, 2001

Sunday, September 09, 2001 at 07:07 PM (CDT)

Hi Everyone,
We just want to thank all of you who helped to make another fund raiser so successful! What a day we had today! The weather was perfect and we had a great turnout. We brought in over $4300 for Justin's scholarship fund. Thanks again to everyone who helped to make this event such a successful one. We are most grateful to all of you!!

Saturday, September 08, 2001 at 03:39 PM (CDT)

PLEASE REMEMBER TO COME TO THE SUPERAUTOSHOW TOMORROW, SUNDAY SEPTEMBER 9TH FROM 11-4:30, AT THE SUPER KMART ON HOLLAND ROAD. THIS EVENT WILL HELP TO SUPPORT JUSTIN'S MEMORIAL SCHOLARSHIP FUND. PLEASE CHECK THE HISTORY FOR THE DETAILS. If you are volunteering to help, please be there by 8am. THANK YOU!!!

Sunday, September 02, 2001 at 09:13 AM (CDT)

Hi Everyone,
Well, it's been a fast summer, hard to believe it's over. The time seems to fly by and it amazes me that 17 months have passed without my angel. I still expect to see his smiling face walk through the door. The pain and emptiness never seems to go away. One of the things that helps us get through the difficult times is our "grief work", helping to keep Justin's memory alive. As you know, we started a college scholarship that is awarded annually to a cancer survivor, and we have given out two scholarships so far. To make this possible, we have to have fund raisers. SO....Once again, I'm asking for your support.
Sunday, September 9th, the SUPERAUTOSHOW for Justin's Memorial Scholarship Fund will be held at Super K-Mart's parking lot on Holland Road. The hours are from 11:00 AM until 4:30 PM. There will be live music, refreshments, 50/50 raffle, silent auction and all kinds of cars, including VB monster fire truck and a funny car. The event will be held rain or shine. Please come out and support Justin's fund, so that we can continue to help other families and students who have had their lives torn apart by cancer. Thanks again for your support, hope to see you there!

Friday, August 17, 2001 at 05:35 PM (CDT)

To my sweet angel Jussy,
HAPPY BIRTHDAY! I can't believe you are 16 today!! Are you driving up there? We have missed you so much on our vacation, but you have always been in our thoughts and in our hearts. I will love you forever baby.

Thank you everyone for remembering Justin's special day and for the great notes. As always, your love and support help us through each day.
God bless you all.
Love,
Susi, Paul, and Courtney

Sunday, August 05, 2001 at 06:51 PM (CDT)

THERE IS A SPECIAL ANGEL IN HEAVEN
THAT IS A PART OF ME.
IT IS NOT WHERE I WANTED HIM
BUT WHERE GOD WANTED HIM TO BE.

HE WAS HERE BUT JUST A MOMENT
LIKE A NIGHT TIME SHOOTING STAR.
AND THOUGH HE IS IN HEAVEN
HE ISN'T VERY FAR.

HE TOUCHED THE HEART OF MANY
LIKE ONLY AN ANGEL CAN DO.
I WOULD HAVE HELD HIM EVERY MOMENT
IF THE END I ONLY KNEW.

SO I SEND THIS SPECIAL MESSAGE
TO THE HEAVEN UP ABOVE.
PLEASE TAKE CARE OF MY ANGEL LORD
AND SEND HIM ALL MY LOVE.
(author unknown)

Jussy, I love you so much!
Mom

Tuesday, July 17, 2001 at 03:56 PM (CDT)

Hi Everyone!
Hope you are having a fun summer. I wanted to share some info with you about an event called "KIDS FIGHTING CANCER". The event is a boat race that will be used to raise money for St. Jude Children's Research Hospital for childhood cancer research. The event will take place on August 11 and at the bottom of this page, I have added a link to a news article about the event. Please check it out. I think this will be a really neat thing. They will have several fund raisers going on and they are hoping to raise $100,000. There will be a 50/50 raffle for $5/ticket and they are also selling flags to be flown on the boats. The flags are $20 each and will be in memory of or in honor of someone, and will go to the person who ordered it after the race. If anyone is interrested in participating in the event, buying a raffle ticket, or ordering a flag, please call or email Debby at (757)-363-7381 (CaptandMate@aol.com). Any checks are made out to St. Jude Children's Hospital. I hope you are able to support this event in some small way. It would be great for them to reach their goal of $100,000. Thanks for taking time to read about this..

Friday, July 13, 2001 at 12:32 PM (CDT)

Hi Everyone,
Someone forwarded me a letter that I will share with all of you. It sort of sums up the grief feelings...

WHEN YOU WISH UPON A STAR

Everytime I am in a group of bereaved parents, I hear people say things like I wish my child hadn't died or I wish I had him/her back. Those wishes unfortunately, can never come true. Another wish I hear is, I wish my friends (or church, or neighbors, or relatives) understood what I am going through and could be more supportive, for there is no greater loss than that of one's child. What do we wish others understood about the loss of our child?
Here is a list of some 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 would not 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 is not 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 wish you would not kill my child again by removing from your home his picture or other remembrances.
I will have emotional highs and lows, ups and downs. I wish that you would not think that if I have a good day my grief is over, or if I have a bad day, I need psychiatric counceling.
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 would not compare it to the loss of a parent, spouse or pet.
Being a bereaved parent is not contagious, so I wish you would not 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 would not expect my grief to be over in six months or a year. The first few years are going to be exceedingly traumatic for us. As with recovering alcoholics, I will never be cured or be considered a former bereaved parent, but will forever be a recovering bereaved parent.
I wish you understood the physical reaction of grief. I may gain or lose weight, sleep all the time or not at all, develope a host of illnesses 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 don't try to coerce us into being cheerful.
It is normal and good that most of us re-examine our faith, values and beliefs after losing a child. We will question things we have been taught all our lives and hopefully come to some new understanding with God. I wish you would let me tangle with my religion without making me feel guilty.
I wish you would not offer me drinks or drugs. These are temporary crutches and the only way I can get through this grief is to experience it. I have to hurt before I can heal.
I wish you understood that grief changes people. I am not the same person I was before my child died, and I will never be that person again. If you keep waiting for me to get back to my old self, you will stay frustrated. I am a new creature, with new thoughts, dreams, aspirations, values, and beliefs. Please try to get to know the new me. Maybe you will like me still.

As always, thank you for your support. Hope you all have a nice weekend and God bless you!

Saturday, June 30, 2001 at 12:22 AM (CDT)

Sat 6/30 1400 *** THE GUESTBOOK HAS BEEN RESTORED, THANKS FOR CHECKING BACK AND LEAVING A NOTE!!***

Hi Everyone,
Just wanted to let you know that the website is having problems with the guestbook. I'm not sure what the problem is, but they say they are working on it. I will be devestated if the guestbook entries are lost for good. Please keep checking back, I miss reading your notes already!
Hope you are all keeping cool on these hot days. Thanks for checking on us and keeping Justin in your thoughts and prayers. It is so hard to believe that he has been gone for nearly 15 months. The time seems to fly by, on the other hand it seems like forever since I have had a chance to hold my baby. Just when I start to think that I am doing well, something kicks me in the chest to remind me (as if I need reminding) that Justin is gone from this earth, and I lose it. Justin continues to be in my thoughts every minute of the day. It amazes me that I can do all of life's chores and still carry him constantly in my thoughts. It does make me feel so good that all of you still think of Justin so often. You all help to sooth our aching hearts more than you know. Hope you all have a great weekend and a happy and safe 4th! God bless.

Saturday, June 02, 2001 at 08:22PM (CDT)

Hi Everyone,
Well, Relay for Life is behind us, and I am happy to tell you that our Relay brought in 2 million dollars, continuing to be the largest Relay in the world. Justin's awesome friends and the "Friends of Justin" team did a great job by raising $40,000! The weather certainly made things challenging for us, but spirits remained high and I think everyone had a great time. The Departmant of Defense also spent the entire event with us held a bone marrow drive in which we added another 200 names to the registry. Thank you to all of you who worked so hard! I'm sure Justin was with us in spirit. Because of weather, they were unable to have the luminary ceremony (a few of them stayed lit, but not many) and they were also unable to show the slide show. They told us today that the slide show can be viewed on their website starting Sunday afternoon at www.therelay.org. I think there are about seven pictures of Justin on the video. Last years video was one of the highlights of the event. I hope you'll check it out. The survivors walk is hard for me to watch. I see so many children that Justin went through treatment with and I want to see him walking more than anything in the world. I hope that someday I will understand God's plan in all of this. I know there has been so much good that has come from Justin's death, but that doesn't make losing him any easier for me.
I also wanted to let you know that Justin's Memorial Scholarship winner has been chosen by a great group of people who spent a lot of time reviewing all of the applications. Adam Pardue, graduating from Norfolk Acadamy, will receive the $3,000 scholarship and he will be attending UVA in the fall. Adam wrote a wonderful letter about his experience with cancer and how it has affected his life. Justin and Adam never had the chance to get to know each other, but Adam was in treatment at CHKD the same time as Justin. We wish him the very best! The other applicants were all very deserving of the scholarship, and I'm sure the decision was a very difficult one for the committee to make.
Once again I thank you all for your continued support, and for helping us get through this tremendous loss in our lives, more than you will ever know. God bless you all!

Sunday, May 06, 2001 at 09:07 PM (CDT)

Hi Everyone,
I just wanted to write and let everyone know how successful our fund raiser was for Relay for Life. Last night at our auction we raised about $9700, which is a wonderful accomplishment. I hope everyone that came had a great time. It is overwhelming that people continue to be so giving and so generous. Continuing to fight cancer in memory of Justin has become very important to our family. Thank you again for your support. We are looking forward to the big event on June 1-2.
The spring time of the year is very difficult for me. This is the time of year that I begin to hear the other boys in the neighborhood playing and yelling outside. The skateboards, the go-peds, and the laughter are all reminders of what I am missing so much. Mother's day is a week away. Another reminder, as if I need to be reminded. I am so blessed to have Courtney. She is so sweet and I know she still hurts so much. I sit here and wonder at the amazing power of the heart to regenerate itself. It must, as each time I think of our loss, and feel that pain, or learn of another bereved family, a little of my heart dies. As always, I am so thankful for the love and support of family and friends to see us through the rough days. God has blessed us with all of you.
I hope you will all have a great week. Please keep all of the special children in your thoughts and prayers. God bless you all.

Sunday, April 15, 2001 at 05:48 PM (CDT)

Hi Everyone,
Happy Easter. I hope you had a wonderful day with your families, and I hope you remember the importance of this holiday. It is a reminder to me, that one day I will get to be with Jussy again, and then it will be forever, and it will be in Paradise! I thank God for that promise.
I wanted to thank you all for the wonderful notes, emails, cards, and guestbook entries sent to our family on Justin's anniversary. It's so hard to believe that a year has passed. It is so thoughtful, so kind of you all to continue to remember us and especially Justin. I thank God for all of you. It is certainly your love and support that gets us through our days.
We have been really busy getting ready for Relay for Life. This Thursday evening (April 19th) we are having a pancake dinner, all you can eat for $5, at Sunrise Cafe on Great Neck Rd. I hope that everyone will join us there for dinner!
Saturday, April 21st, there will be a car wash all day at the Shell Station next to Pembroke Mall. Thank you in advance for your support! Saturday, May 5th will be our biggest fundraiser. We will be having a Silent Auction and BBQ dinner in our court. We hope to raise lots of money remembering Justin and all of the other people who fight this terrible disease. "Friends of Justin" are seven teams and 105 people strong! It still amazes me that so many people want to help. Thank you everyone! I know we will be successful!
Please continue to remember and pray for the children who fight so hard, and especially those children and their families who have courageously lost their battles.
God bless you all!

WE ARE CONNECTED, MY CHILD AND I,
BY AN INVISIBLE CORD, NOT SEEN BY THE EYE.
IT'S NOT LIKE THE CORD THAT CONNECTS US TILL BIRTH.
THIS CORD CAN'T BE SEEN BY ANY ON EARTH.
THIS CORD DOES IT'S WORK RIGHT FROM THE START,
THE INVISIBLE CORD, FROM MY CHILD TO MY HEART.
THE STRENGTH OF THIS CORD, IS HARD TO DESCRIBE,
IT CAN'T BE DESTROYED, IT CAN'T BE DENIED.
IT'S STRONGER THAN CORD MAN COULD CREATE,
IT WITHSTANDS THE TEST, CAN HOLD ANY WEIGHT.
AND THOUGH YOU ARE GONE, THOUGH YOU'RE NOT HERE WITH ME,
THE CORD IS STILL THERE, BUT NO ONE CAN SEE.
IT PULLS AT MY HEART, I AM BRUISED, I AM SORE.
BUT THIS CORD IS MY LIFELINE, AS NEVER BEFORE.
I AM THANKFUL THAT GOD CONNECTS US THIS WAY.
A PARENT AND CHILD, DEATH CAN'T TAKE AWAY.

I love you and miss you so much Jussy....

Tuesday, April 03, 2001 at 09:25 PM (CDT)

Hi Everyone,
April 4, 2000...a day I will never forget, and by far, the saddest day of my life. It is so hard to believe that a year has gone by and that we have survived without Justin's smile, laughter, mischief, temper, warmth, and love. There have been days when I find it hard to breath, and I have cried oceans. When I think back over the past year, I am truly humbled by the legacy that Justin has left behind. I am amazed at the hearts he has touched in life and in death. I am overwhelmed by the love that been showered on us by friends and total strangers. I have grown to know and love the most wonderful group of teens, who never forget to remember. They are all so awesome, Justin was so blessed to have them all for friends. When I think back to the time Justin was so sick, I can remember how my heart ached because of his pain and confusion. I remember praying so hard and trusting that God would make it all better. Even knowing Justin was so ill, his death was so totally unexpected for me. I have often wondered if Justin knew what was going to happen. The day before he died, he seemed so peaceful. This is one of the things that gives me strength and renews my faith.
Thank you all for allowing me to share all of my thoughts. This journal has been a wonderful place for me to vent. It is sometimes easier to write out thoughts rather than to talk about them. Thank you also for continuing to check on us, and for allowing Justin to live on in your hearts. That means more to our family than anything. No mother ever wants her child to be forgotten, and you all have given me the reasurrance I have needed that Justin will always be remembered.
Thanks for being such a wonderful support group!
God bless and love to all.

Justin, I miss you so...
Though you are not here
wherever I go or whatever I do
I see your face in my mind
and I miss you so
I miss telling you everything
I miss showing you things
I miss our eyes secretly
giving each other confidence
I miss your touch
I miss our excitement together
I miss everything we shared
I don't like missing you
It is a very cold
and lonely feeling
I wish that I could be
with you right now
where the warmth of our love
would melt the winter snows
But since I can't be
with you right now
I will have to be content
just dreaming about
when we'll be together again.

I'll love you forever Jussy!

Saturday, March 24, 2001 at 05:10 PM (CST)

Hi everyone,
Yousef is now an angel with Justin. Please pray for him and his family as they prepare to return to Kuwait. They have tremendous faith in God, but I can tell you, faith does not replace the horrible pain of losing your child. Even knowing that there is a beautiful eternity and that our children are finally healthy and painfree, does not take away the every day pain and longing to hold, hear, touch, and see your child. If you have a chance to visit Yousef's website, please check the photo album and see the beautiful, yet heart breaking picture of Yousef reaching out to his daddy the day he arrived from Kuwait. (www.caringbridge.com/page/yousef) Please let this family know that you are remembering them in your prayers. I know they will be thankful.
It is almost a year since Justin left us. It is so hard to believe. I walk into his room and still expect to see him or hear his voice. I look at his friends who are all growing so tall and wonder how tall Justin would be now. He was so proud of passing his mommy in height (of course that doesn't take much!) He loved patting me on the top of my head, rubbing in the fact that he was taller than me. Boy I sure do miss that. Of course, he always had that beautiful, yet mischievious grin on his face while he was teasing me. Memories are so nice to have. That's one thing that death can't take from me.
Hope you are enjoying this beautiful day.
God bless you all and thank you again for remembering all of the children who need your prayers, but especially Yousef and his family.

Wednesday, March 21, 2001 at 09:08 PM (CST)

Hi Everyone,
There is another little boy at Duke who needs prayers. His name is Yousef and he has been at Duke for a year now. He is from Kuwait. Yousef was out of the hospital and doing well but now he is in PICU on a ventilator fighting for his life. Please visit his website and keep him and his family in your prayers.
www.caringbridge.com/page/yousef

We had a great Relay For Life meeting the other night and we have so many neat things planned. We (Friend's of Justin) are now 7 teams (105 people) strong and have already raised thousands of dollars!

Another neat thing, we have started receiving applications for Justin's scholarship! It's exciting for me knowing, that through others, Justin won't be forgotten.

Thanks for checking on us. We still take just one day at a time....
God bless you all.

Saturday, March 03, 2001 at 08:23 PM (CST)

Dear Jussy,
I can't believe it has been 11 months since you left us, almost a year. Some days it seems like yesterday, other times it seems like forever. I miss you so much. I want to hold you and hear your sweet voice. Courtney and daddy and I still love sharing stories about you, they make us smile. Life is so differrent without you. Some days are so long and sad and I wonder if we will make it through. The pain of not having you here never goes away. Some days I sit on your bed and look around your room and remember... that's one good thing, death cannot rob me of my memories of you. They grow sweeter each day. Do you hear me talking to you? Can you still feel my love? Do you need me? Are you ok? I worry about you. Some people say we are doing good things, that we are strong. I think we are selfish. Much of what we do is so that you will never be forgotten. That is so important to me, but you have a very loyal following Jussy. Relay for Life plans are really coming along now and we already have FIVE "Friend's of Justin" teams! I think team six will be registered soon! All these wonderful people want to be on your team. You live on through many, many hearts, and you will be in mine forever. I love you Jussy....always and forever, until I am with you again.

Hi Everyone,
Well, life continues to go on, day by day. We are busy with Relay plans and really excited about the response we've had. Thanks to all of you who are helping to keep Justin a part of every day life.
I wanted to share with you all that I had the opportunity to spend some time with Jasmine and her mom, my very good friend, Patty this past week! Jasmine looks wonderful! She still has that beautiful smile and big dimples that captured Justin's heart and made him smile, along with a full head of shoulder length hair! It was so good to see her playing, eating, and feeling good! God has answered many prayers! Patty, it was so good for me to see you and spend such special time with you, thank you!! I love you both, you are such a gift. Jasmine still has a way to go, as her immune system is still not working. She still has to stay away from crowds and wear a mask, and she is at great risk for getting an infection. Please continue to keep Jasmine and the other children in your prayers.
I found a poem I want to share. I seem to find these at just the right time and they, along with faith and some special friends, seem to lift me enough to get through another day.

HE ONLY TOOK MY HAND
Last night while I was trying to sleep,
My son's voice I did hear.
I opened my eyes and looked around
But he did not appear.
He said, "Mama you've got to listen,
You've got to understand,
God didn't take me from you, Mama,
He only took my hand.
When I called out in pain that night,
The instant that I died,
He reached down and took my hand,
And pulled me to His side.
He pulled me up and saved me
From the misery and pain.
My body was hurt so badly inside,
I could never be the same.
My search is really over now,
I've found happiness within.
All the answers to my empty dreams
And all that might have been.
I love you so and miss you so,
And I'll always be nearby.
My body's gone forever,
But my spirit will never die!
And so you must go on now,
Live one day at a time.
Just understand-
God did not take me from you,
He only took my hand."
-Author Unknown

Hope you all have a great week ahead and stay dry in the coming storm! Happy early birthday CAT!!! I'm staying off the road!
Love you all, God bless you.

Tuesday, February 20, 2001 at 05:33 PM (CST)

Hi Everyone,
With a heavy heart, I ask you to please remember some special families in your thoughts and prayers. First, our friends Shelly and Dave Christenson, who lost their beautiful daughter Megan in a tragic automobile accident this past weekend at Virginia Tech. I have known Megan since she was a bubbly little third grader when she was in Brownies with Courtney. Please pray for her parents and her sister Katie.
Also, please remember the family of Hunter Jones, the little 4 year old from Virginia Beach, who lost her battle yesterday after her cord blood transplant at Duke. Life for these families will never be the same, and their heart ache will never end.
Thanks for remembering them....they will both be beautiful angels!
God bless you all for your love and concern.

Friday, February 16, 2001 at 03:42 PM (CST)

Hi Everyone,
Thank you for checking on us and for the great notes you leave for Justin and our family in the guestbook! Cat, I have decided that you will be a writer one day, you compose the most beautiful stories! Thank you for sharing it with all of us, although perhaps you should have started by saying "get the tissues ready"!!!
Wednesday's Bone Marrow drive in memory of Justin added another almost 300 people to the National Registry. It's a small number compared to the previous 10,000, but a huge number for a routine marrow drive. Every person added is another possible life saved. Thank you to all the those who were tested.
I wanted to update all of you on the amount of money that was raised at the basketball game. We made over $1,500.00 for our Relay teams. We have added a third "Friend's of Justin " team, and I think we will have to add a fourth team soon!! I will keep you posted on our next fundraisers as they come along. We are planning a silent auction to be held sometime this spring and we will be looking for donations of items to auction. Also, we are selling luminaries, which are the candles that are lit at Relay in memory of, or in honor of someone who has had cancer. If you'd like to buy one, they are $10.00 and you can send a check made out to the American Cancer Society to our address below. Just include the name of the person you want to honor or remember. The candle lighting ceremony at Relay for Life is a very emotional and beautiful thing to see. We are planning to have a big meeting for everyone who plans to be on our teams on Sunday Feb 25th at 2pm at our home. I hope everyone will be able to be there, it is a very important meeting.
On a sad note, I have just learned that there are two more angels from Duke that have joined Justin in heaven. Please remember Max and Shannon and their families. I know the pain and heartbreak that they are feeling too well. Please pray for their strength. I hope these families are as fortunate as we are to have such a wonderfully supportive and loving circle of family and friends to help them through the dark days ahead. The death of a child is so difficult to comprehend. There are no words to make it ok. Even knowing that the suffering has ended, or that they are in God's loving arms, offers little comfort when you long to hold your child in your arms and hear his sweet voice say "I love you, Mom". Also, please continue to pray for Hunter. She is from Virginia Beach and she is having a rough time at Duke right now. I am not sure if she has a webpage, but I will check on it. Please also remember Abby, Jasmine, Jenna, Stephen, Craig, Connor, Bryan, Tommy (finally out of the hospital!!), and Jack, and all of the other children fighting cancer. Their journey's are far from over.
Wishing you all a happy weekend.
God bless you all.

DON'T THINK OF HIM AS GONE AWAY
HIS JOURNEY'S JUST BEGUN
LIFE HOLDS SO MANY FACETS
THIS EARTH IS ONLY ONE.

THINK OF HIM AS LIVING IN
THE HEARTS OF THOSE HE TOUCHED
FOR NOTHING LOVED IS EVER LOST
AND HE WAS LOVED SO MUCH!

Friday, February 16, 2001 at 03:42 PM (CST)

Hi Everyone,
Thank you for checking on us and for the great notes you leave for Justin and our family in the guestbook! Cat, I have decided that you will be a writer one day, you compose the most beautiful stories! Thank you for sharing it with all of us, although perhaps you should have started by saying "get the tissues ready"!!!
Wednesday's Bone Marrow drive in memory of Justin added another almost 300 people to the National Registry. It's a small number compared to the previous 10,000, but a huge number for a routine marrow drive. Every person added is another possible life saved. Thank you to all the those who were tested.
I wanted to update all of you on the amount of money that was raised at the basketball game. We made over $1,500.00 for our Relay teams. We have added a third "Friend's of Justin " team, and I think we will have to add a fourth team soon!! I will keep you posted on our next fundraisers as they come along. We are planning a silent auction to be held sometime this spring and we will be looking for donations of items to auction. Also, we are selling luminaries, which are the candles that are lit at Relay in memory of, or in honor of someone who has had cancer. If you'd like to buy one, they are $10.00 and you can send a check made out to the American Cancer Society to our address below. Just include the name of the person you want to honor or remember. The candle lighting ceremony at Relay for Life is a very emotional and beautiful thing to see. We are planning to have a big meeting for everyone who plans to be on our teams on Sunday Feb 25th at 2pm at our home. I hope everyone will be able to be there, it is a very important meeting.
On a sad note, I have just learned that there are two more angels from Duke that have joined Justin. Please remember Max and Shannon and their families. I know the pain and heartbreak that they are feeling too well. Please pray for their strength. I hope these families are as fortunate as we are to have such a wonderfully supportive and loving circle of family and friends to help them through the dark days ahead. The death of a child is so difficult to comprehend. There are no words to make it ok. Even knowing that the suffering has ended, or that they are in God's loving arms, offers little comfort when you long to hold your child in your arms and hear his sweet voice say "I love you, Mom". Also, please continue to pray for Hunter. She is from Virginia Beach and she is having a rough time at Duke right now. I am not sure if she has a webpage, but I will check on it. Please also remember Abby, Jasmine, Jenna, Stephen, Craig, Connor, Bryan, Tommy (finally out of the hospital!!), and Jack, and all of the other children fighting cancer.

Thursday, February 08, 2001 at 09:01 PM (CST)

Hi Everyone,
Wow, we really had a successful night tonight at the faculty basketball game between Lynnhaven and Great Neck. The game was a sellout and Lynnhaven won!! Paul played for LMS and even made a big 2 points! The real winners are our Relay for Life teams. We raised over $1000.00 for the American Cancer Society. Thank you to everyone who supported this event. I know Justin was there in spirit, probably still wondering, "Mom, why do all these people care about ME?" He always wondered that.

Valentine's Day is the Bone Marrow drive at Little Creek. Please spread the word!! Surely part of God's plan for our family is to continue Justin's legacy, continue the momentum that was started with him. It is certainly a wonderful way to keep him in so many hearts.

Hope you all continue to remember and pray for all of the other children. Tonight we heard that Justin's friend Bryan is all finished with his chemotherapy and doing really well. Thank you Lord. I know it was difficult for him, losing Justin within a few days of learning his own diagnosis. Please continue to pray for the other children and their families. They are all so special to us.

Well Jussy, they haven't forgotten you, not at all! They still care! They still think of you. They still ask me for your picture pins. Next time I'll be prepared! I miss you so much Juss. I hope you continue to feel my love for you. Please ask God to continue giving us strength.

A parting thought...
MAKE YOURSELF FAMILIAR WITH THE ANGELS, AND BEHOLD THEM FREQUENTLY IN SPIRIT; FOR WITHOUT BEING SEEN, THEY ARE PRESENT WITH YOU.

Hope you all have a great weekend and enjoy this beautiful weather!! Love to all and God bless you.

Saturday, February 03, 2001 at 08:55 PM (CST)

Hi Everyone,
Well, another milestone. TEN MONTHS tomorrow that Justin earned his angel wings. One year ago was also the beginning of radiation treatments in preparation for transplant. It was such a hopeful time for our family. It's so hard to believe that so much time has passed. The ache is constant, it never goes away. We are so thankful for all the amazing people who get us through the rough times. Thanks for being there for us. Thank you for allowing us to talk about Justin. We need to know that he will never be forgotten.
Last weekend we went to the Relay for Life kickoff dinner. We will be working hard to plan some fundraisers and make some money! Thank you so much to the kids who volunteered to help out. We did raise over $100 to help the teams. I also wanted to let everyone know that Thursday February 8th, Lynnhaven Middle School is having their annual charity faculty basketball game against the faculty of Great Neck Middle School. Last year the money went to Justin. This year, they have decided to donate the money to our "Friends of Justin" Relay for Life teams. I hope everyone will get out there at 630pm next Thursday and help us raise some money!!
Another thing I wanted to share with you is that the Deparment of Defense Marrow Donor Program is having a Justin Thatcher Memorial Bone Marrow Drive on Feb 14th at Little Creek. I am really hoping for a good turnout. There are so many other children going through the same thing Justin went through, who are anxious to find that perfect match. It could be you! Please be tested if you never have been and are over 18. Someone's life depends on it.
Please continue to remember and pray for all of the children who still struggle daily with the complications of transplant and cancer. Remember all of the other angels I have shared with you. There are way too many, and I know that there have been many others since we left Duke that we never knew. As a nurse, I can't imagine working in such a unit, where death is a part of every day life. It is hard enough losing a patient that has lived a long, fullfilling life. Those nurses are some of the most compassionate and caring that I have ever known. They have a tremendously difficult job, with few rewards. But...I imagine if any child survives this difficult journey, that's the greatest reward.
Hope you are all keeping warm during these cold days. Thank you for keeping Justin in your hearts and our family in your prayers. God bless you all.

I love you Jussy.

Thursday, January 18, 2001 at 06:14 PM (CST)

Hi Everyone,
It's been awhile since I've had a chance to update. We've been keeping pretty busy. It is amazing how fast the time flies by. One year ago today we left for Duke to begin our transplant journey. I can't believe it has been a year. It was such an emotional time for us. I had so much joy being with Justin, such pain being separated from Courtney. But we were so optomistic. We had such faith and hope that things would go well and that Justin would be home in a few months. We counted those 100 days every single day.
We are thankful to you all for sticking with us, seeing us through the rough times. We go to the cemetary frequently to sit and talk with Justin. It's such a peaceful place. We are always touched by the little tokens of love that are left there by such special friends. God has blessed us and comforted us by giving Justin friends like you.
Please remember Jenna, who has been so sick in the hospital, and Tommy, who is finally out of PICU, and Abby, who is still having a difficult time also. Your prayers and notes on their behalf are greatly appreciated. God bless you all for your continued love and support.

Thursday, January 04, 2001 at 09:00 AM (CST)

Hi Everyone,
Nine months ago today, Justin began his eternal journey. He is in my thoughts every minute of every day. I hope he can continue to feel my love for him, it grows stronger and stronger as the days have turned into months. It is still so hard for me to believe that he is gone. I am hopeful that the New Year will bring some peace to our family, and that we can find some kind of understanding in the suffering of children. I know that God does not want children to suffer. It all seems so unfair. We have seen so much pain and death during the past year. I find comfort in knowing that this time apart from Justin, is but a moment, compared to eternity. So, for now, we will continue to do all that we can in this life, to be happy and helpful, and live as Justin loved living.
We continue to be thankful to all of you who remember Justin each day, as well as the other children we have asked you to pray for. Jenna is home now, what a blessing. Tommy is not doing well and needs your continued thoughts and prayers. Abby has been improving each day. Thank you again for remembering them and visiting their websites.

And to Justin....I miss you so much Jussy. I will love you forever. This song is for you.
Precious Child

In my dreams
You are alive and well
Precious child, precious child
In my mind
I see you clear as a bell
Precious child, precious child
In my sole
There is a hole
That never can be filled
In my heart there is hope
Cause you are with me still

In my heart, you live on
Always there, never gone
Precious child, you left too soon
And tho it may be true that we're apart
You will live forever...in my heart

In my plans
I was the first to leave
Precious child, precious child
But in this world
I was left to grieve
My precious child, precious child
In my sole there is a hole
That never can be filled
In my heart there is hope
And you are with me still

In my heart, you live on
Always there, never gone
Precious child, you left too soon
And tho it may be true that we're apart
You will live forever... in my heart

God knows I want to hold you, see you, touch you
And maybe there's a heaven and someday I will again
Please know you're not forgotten until then

In my heart, you live on
Always there, never gone
Precious child, you left too soon
And tho it may be true that we're apart
You will live forever... in my heart

I love you sweet angel.
God bless you everyone.

Saturday, December 30, 2000 at 09:05 PM (CST)

Hi Everyone,
Well, the year 2000 is almost behind us now. For our family, this has been the most difficult year. Last year at this time, Justin was vibrant and alive. He was so anxious to be home for New Years, having already spent Christmas in the hospital. I remember thinking that the year 2000 could only be better than the year 1999, which brought us the devastating news of Justin's illness. Little did we know that it would be the last time Justin could ring in the New Year. Reflecting back over the past year, I realize just how much I have to be thankful for. I had a wonderful opportunity to really get to know Justin. Staying with him day after day, and night after night, I learned what a wonderful person he had become. He truly loved life and he loved his friends and family. He loved Courtney tremendously, more than I could have ever hoped for. We shared so many stories. We shared a closeness that few moms get to share with their children. I thank God for the blessings that have made the year bearable. The year has also been filled with tremendous pain and grief. Our family will never be the same. Our hearts will heal with time, but there will always be an ache. We are so grateful to our wonderful friends and family, as well as to thousands of strangers for their support and encouragement, helping us through the year 2000. With your continued help, we will survive, and Justin's "legacy" will live on, and others will have hope because of him. We hope for all of you a very happy and safe 2001. We pray that God blesses you all with good health, something that we too often take for granted.
Justin was so fortunate to have some very wonderful friends. One of his friends has written a poem that I would like to share with you.

JUSSY
There is a boy who's so mighty and free.
My angel I know he will always be.
Flying high in our Heavens above.
Forever he is my hero, my love.

So happy and healthy he always seemed.
Jussy taught me something I always dreamed.
Opening my heart to an undiscovered feeling.
I knew it was time, he could begin healing.

He was always so special to me.
Touching my heart in so many ways, you see.
Free from hospitals and constant fear,
Occasionally letting go of a single tear.

But looking up and knowing he's there
Makes me smile, he knows I care.
Helping to give me strength and much more
I know that's what God needed him for.

Never forgetting what he was like,
Tying his shoelace or riding his bike.
I am not saying goodbye or farewell.
I will see him again, only time can tell.

Watching over me now,I'm so glad.
Only happiness, I am no longer sad.
He just needed to go home and I know.
I just hope he can see how I love him so.

When I look into the clouds, I know he can fly.
Spreading his wings high into the sky.
His spirit is in my heart; it no longer aches,
Because he is on the garden God creates.

This was written by Justin's friend Catherine. It makes our hearts feel good to see how much he is still missed and cared for. It is a good feeling to know that he will not be forgotten. Thanks Cat!
Please continue to pray for the children who are still suffering with cancer or the effects related to transplant. Please remember Jenna who is back at Duke. She has had some high fevers and low blood pressure and spent some time in PICU, but hopefully will get to be home for New Years. Tommy (3rd transplant at Duke) is also having a rough time in PICU on a ventilator. Abby (at Portsmouth Naval)is doing better and her mom thanks you for all the notes and prayers. Please pray for the children and their parents. It is such a difficult journey they are on and they also need strength. Please pray for them all. Here are some websites, please visit them and leave them notes as you have done so often for other children...
Jenna is www.caringbridge.com/page/jennaswebsite
Tommy is http://users.erols.com/tburnette
Abby is www.caringbridge.com/va/abbyallies

Thank you for remembering them. Thank you for remembering all of the children who are beautiful angels with Jussy. Continue to pray for their families also, that they may find peace in the new year. Wishing you God's blessings for a wonderful 2001.

Saturday, December 23, 2000 at 03:17 PM (CST)

A message from Justin....

MY FIRST CHRISTMAS IN HEAVEN

I see the countless Christmas trees around the world below
With tiny lights like Heavan's stars, reflecting on the snow.
The sight is so spectacular, please wipe away the tear,
For I am spending Christmas with Jesus Christ this year.

I hear the many Christmas songs that people hold so dear,
But the sounds of music can't compare with the Christmas choir up here.
I have no words to tell you, the joy their voices bring,
For it is beyond description, to hear the angels sing.

I know how much you miss me, I see the pain inside your heart,
But I am not so far away, we really aren't apart.
So be happy for me dear ones, You know I hold you dear,
And be glad I'm spending Christmas with Jesus Christ this year.

I sent you each a special gift, from my heavenly home above,
I sent you each a memory of my undying love.
After all, love is a gift more precious than pure gold.
It was always important in the stories Jesus told.

Please love and keep each other, as my Father said to do,
For I can't count the blessing or love He has for each of you.
So have a Merry Christmas and wipe away that tear.
Remember, I am spending Christmas with Jesus Christ this year.

Hi everyone,
Hope you are enjoying the season. Thank you for keeping us in your thoughts and prayers. Thank you for remembering all of the sick children and praying for them.
There is another little girl who needs your prayers. Her name is Abby. She has AML like Justin and is at Portsmouth Naval Hospital in PICU. Her website is www.caringbridge.com/va/abbyallies
Wishing you all a very wonderful Christmas with family and friends. Peace to all...

Wednesday, December 13, 2000 at 09:59 PM (CST)

Hi Everyone,
The month of December sure is a difficult month. I have always thought of December as such a joyful time, full of adventure, activity, shopping, singing, baking, leading up to a wonderful Christmas celebration. This year is so different. I try to shop and can only seem to find things for Justin. I just happen to find myself walking through the departments with the clothes he would love to have. I see the other kids his age at the mall and find myself listening for his voice, and looking for his smile. I miss him so much. I would never wish this pain on anyone. We are so thankful for the continued support of family and friends, and to all of you who continue to check on us here. And of course, I am especially thankful for Courtney, who still makes the sun shine. I thank God for her every single day. I don't know what I would do without her. Sometimes I long for the days when we used to snuggle together and share "special time" before bed. Just the girls...
Paul and I have just spent a few days up in the DC area at a conference. We were invited to attend this conference of the Department of Defense Marrow Donor Center as their guests. The DoD was extremely helpful to us when we were having bone marrow drives for Justin. We were honored to be there and to share Justin's story. Dr. Jennifer Ng is the Associate Director of the program. She made us laugh when she told us about thinking we had some big political connections when we had such huge turnouts at all the drives! Since that time, she has gotten to know Paul!! No further explaination should be needed! We were very excited to learn from Dr. Ng that just through the DoD and the drives held for Justin, there have been TWENTY matches to date with four completed transplants!!! We were so excited to hear this. I wish we could get some numbers from the Red Cross, but sadly, they have not been very cooperative with keeping us informed. So, Justin's legacy continues. They will continue to keep us informed of new matches. We have also set a date for a bone marrow drive in Justin's memory. We are planning it for Feb. 14th. OH! By the way... we also got to see Connor and spend some time with his parents. He looks WONDERFUL! Please keep remembering all of these children in your prayers.
Here's wishing you all a wonderful holiday season. Enjoy spending time with families and friends, precious gifts that God gives us. God bless us everyone.

Monday, December 04, 2000 at 09:35PM (CST)

Hi everyone,
Well, it is really hard to believe that it's been eight months since Justin went to live with God in heaven. The pain is still very fresh within our hearts. Not a minute of the day goes by without him in our thoughts. The holidays are going to be very difficult for us. It is still like a bad dream. I still look for reasons and wonder why I can't find answers. Someday I will get all of the answers I need, but waiting is so hard. I pray for continued strength.
One year ago today was such a beautiful day. I remember it so well, as it was the most amazing day. Thousands of people (4,116 to be exact, and over the next month, that went up to over 10,000!) waited in line for hours to be tested and to have their names added to the National Marrow Donor Registry. A record breaking drive was my goal, but never could I have imagined such an event. There is a lot to be said for the people of this community. I am eternally grateful for the efforts that were made to help my Justin, along with many others that we have yet to learn about! Also, I hope you know that it still does my heart good to come to this website and read the guestbook entries that continue on a daily basis.
Sunday, December 10th has been designated as National Children's Memorial Day. At 7PM around the globe, you are asked to light a candle in memory of all children who have died, that their light may always shine. (check out www.compassionatefriends.com) Please do this in memory of Justin, and in memory of so many other angels. They are all heros and they are all children of God. Justin, Michael R., Michael B., Steven, Jeff, Brooke G., Britton, Dalton, Irene, James, Matthew B., Brooke B., Terrance, Shaika, Logan, Mollie, Katie, Jordyn, to name a few. Sadly, there are many others, and it is important to all of these families, that their memory lives on. Please remember them all in your prayers, their grief is never ending. Remember, Sunday 7PM!
WHOEVER RECEIVES ONE OF THESE LITTLE CHILDREN IN MY NAME, RECEIVES ME... Mark 9:37
I wanted to send out a few special birthday wishes. First of all, to UE, happy belated, and to Elizabeth, wow, 20!!! Love you both so much.
God bless you all, and hope you have a great week.

Wednesday, November 29, 2000 at 06:04 PM (CST)

Hi Everyone,
Hope you all had a wonderful Thanksgiving. It was a bit rough for us, but good in that we spent the day with family and had much to be thankful for. Family, faith, and wonderful memories continue to keep us going each day. Justin is always with us, where ever we go, what ever we do.
The month of November is National Bone Marrow Awareness month. Haven't really heard anything about it from the Red Cross unfortunately. Have any of you heard about any bone marrow drives or encouragement to "enlist" with the National Registry? Well, I'm just going to put a little bug in your ear, to please, please, please, if you haven't already, get tested. It's so easy. Before our record-breaking drive last Dec. 4th, Justin was on TV being interviewed. He was asked WHY. Why should people get tested. Justin knew that it was possible that no one would be a match for him. His answer to the question was "You may not be a match for me, but you may be a match for someone in Texas or anywhere else." He wanted the drive to help other people as well. Over the past year, we learned of the Navy man in March, who was a match and donor for someone. We have had many calls from other people who were notified as potential donors. Today I had another call from a girl who was tested at Justin's drive. She has learned that she is a perfect match for a 16 year old boy, and she will be headed to Richmond for bone marrow harvesting Dec. 20th. So, Justin's legacy lives on. And hopefully, a 16 year old boy will have a new chance at life. I'll be praying that all goes well for this wonderful caring person, who so selflessly gave of herself to save a life, and for the young boy who will be blessed with the most wonderful Christmas gift he or his family could ask for! Please keep them in your thoughts and prayers! Thank you Shannon!
Also, please remember to pray for Jasmine, Connor, Craig, and Jack who all had to spend some of the holiday in the hospital. Pray for their families and for all of the other children going through so much.
Thanks for still checking on us! God bless you all!

Wednesday, November 22, 2000 at 05:17 PM (CST)

Hi Everyone,
Here's wishing you all a wonderful Thanksgiving. It will be a difficult day, another first without Justin. Please continue to keep us in your prayers. Please remember the other families that have lost loved ones also, as holidays are so hard without them.

Things I am thankful for...
It doesn't seem to get any better... But it doesn't seem to get any worse either. For that, I am thankful.
There are no more pictures to be taken... But there are memories to be cherished. For that, I am thankful.
There is a missing chair at the table... But the circle of family gathers close. For that, I am thankful.
The turkey is smaller... But there is still stuffing. For that, I am thankful.
The days are shorter... But the nights are softer. For that, I am thankful.
The pain is still there... But it lasts only moments. For that, I am thankful.
The calendar still turns, the holidays still appear, and they still cost too much... But I am still here. For that, I am thankful.
The room is still empty, the soul still aches... But the heart remembers. For that, I am thankful.
The guests still come, the dishes pile up... But the dishwasher works. For that, I am thankful.
The name is still missing, the words still unspoken... But the silence is shared. For that, I am thankful.
The stillness remains... But the sadness is smaller. For that, I am thankful.
The moment is gone... But the love is forever. For that, I am blessed. For that, I am grateful.
Love was once, and still is, a part of my being... For that, I am living.
I am living... and for that, I am thankful. May your holidays be filled with reasons to be thankful. Having loved and having been loved is perhaps the most wondrous reason of all. (D. Sims 1992)

I am thankful for God's promises, because I know I will see Justin again some day. I am thankful for all of you, for your continuous love and support for us and for Justin. May God bless you all and keep you safe and warm.

Sunday, November 19, 2000 at 01:38 PM (CST)

Hi Everyone,
I really wanted to thank everyone that gave of their time last Tuesday evening to come out and skate for Relay for Life in memory of Justin. We had a great turnout and no broken bones that I know of. I can't tell you yet how much money we made for The American Cancer Society, as the money has not yet all been turned in (hint...please turn in your money if you still have some!), but I can tell you that it was over $1200.00, which is a great start for the Friends of Justin team! Thank you to everyone who helped, you kids are awesome!! In January, we plan to start getting everyone involved. We have had many adults also volunteer to be on our team, and I think we can easily make over $10,000.
The holidays are rapidly approaching, and I find that I am not particularly eager to celebrate much of anything. Thanksgiving is the time to give thanks for all of the blessings God has given us in our lives. I know there are many. I know we were blessed to share Justin's life as long as we did. Paul and I are also blessed to have Courtney, and I pray that someday she will have some idea of the amount of love we have for her! I treasure her and love her dearly.
Please have a wonderful and safe Thanksgiving together with your families, and give thanks for all of God's blessings. God bless you all.

Jussy, I sure do miss you! I'll love you forever!

Thursday, November 09, 2000 at 08:12 AM (CST)

Hi everyone,
Just wanted to remind everyone that our first fund-raiser for Justin's Relay for Life team will be the skating party at Haygood Skating Rink on Tuesday, November 14th from 7-9pm. Tickets are $5.00 each and all procedes will go to the American Cancer Society....please join us by doing what Justin loved to do, SKATE! It's a great way to honor Justin's memory. Help us to keep his spirit alive! We're looking forward to seeing all of you. We have a wonderfully supportive team and hope to raise lots of money for this great cause.
Jussy, we're doing this for you baby. I love you!!
Please keep praying for the children! God bless you all.

Friday, November 03, 2000 at 02:46 AM (CST)

Hi Everyone,
Well, tomorrow will be 7 months since our sweet Jussy became an angel. I still can't believe he is gone, although he is always in our hearts. We miss him more than anyone can imagine unless they have also lost a child. There is no greater pain imaginable. Each day brings a new reminder that Justin is not visibly here. Each day brings more pain and grief. Each day, there is continued silence from his room. His laughter and his love fill my heart so much, that it aches for more. We continue to thank you all for your love and kindness, and your much needed support. I know other families in the same situation that aren't as fortunate as we are to be surrounded by so much love and caring. We are thankful that Justin touched your hearts, and we are happy to be able to share him with you all. I hope many of you were able to visit Buff's Garden at 47th street and see the beautiful memorial for Justin and so many others. The ceremony last sunday was so beautiful. Justin has a large stone on the left side of the walkway, past the gazebo, toward the beach. Hope you get a chance to see it...
We have had many people asking to be on our team for Relay for Life. We will be having a meeting at our home saturday afternoon at 3pm just to get organized and to let everyone know what's going on. Please try to come if you want to be on the team "Friends of Justin". Our first fundraiser is going to be the skating party on November 14th and we need to sell tickets! Hope to see you this saturday Nov 4th.
Remember...No life is so brief...that it cannot change the world. Now you all have a chance to help others fight this disease.
Please keep praying for the children. Their needs are many. God bless you all.

Wednesday, October 25, 2000 at 09:09 PM (CDT)

Hi Everyone,
I thought I would take a few minutes to let you all know that we are hanging in there, just taking one day at a time. We continue to be thankful to all of you for checking in with us and leaving notes to us or to Justin. It really does my heart good to feel the love you share with us. Justin's illness and death have taught us the meaning of real friendship. A few other things I have learned...

I've learned-
that people you care about most in life
are taken from you too soon.
I've learned-
that even when you think you have no more to give,
when a friend cries out to you,
you will find the strength to help.
I've learned-
that your life can be changed in a matter of hours
by people who don't even know you.
I've learned-
that no matter how badly your heart is broken
the world doesn't stop your grief.
I've learned-
that your family won't always be there for you.
It may seem funny, but people you aren't related to
can take care of you and love you
and teach you to trust people again.
Families aren't biological.
I've learned-
that true friendship continues to grow,
even over the longest distance.
Same goes for true love.
I've learned-
that sometimes when I'm angry I have the right to be angry,
but that doesn't give me the right to be cruel.
I've learned-
that sometimes the people you expect to kick you when you're down
will be the ones to help you get back up.
I've learned-
that you should always leave loved ones with loving words.
It may be the last time you see them.
I've learned-
that you can keep going long after you can't.

Thanks for all the continued support. This poem was sent to me today and I thought it was perfect. As usual, we continue to be concerned, relieved, saddened, (to name a few of the emotions), as we follow the journeys of the other children. Please pray for little Jack who is back in NYC undergoing painful antibody treatments for neuroblastoma. Also, Jack has some abnormal lymph nodes, please pray that it's "nothing". Also, please remember Tommy who has undergone transplant #3, and previously had all dad's donor cells, and is now showing some of his own cells growing. I pray that his graft has not been rejected. Jenna has had such a rough time. One problem leads to another. Having recently gone through painful hip surgery, they have now mentioned a possible need for a total knee replacement. Please pray for her healing. All of these children and so many others continue to need your prayers every day.
I wanted to mention that Sunday the 29th, there will be a dedication ceremony for Justin and others at "Buff's Garden" down at the Oceanfront and 47th Street. This beautiful garden and brick walkway is dedicated to the memory of and in honor of those touched by cancer. I hope you will make time some day to stop by and visit the garden, and look for Justin's bricks. The Taylor family and the Buff foundation have done a wonderful job of creating awareness for cancer.
Hope you are enjoying this beautiful fall weather. God bless you all!

Saturday, October 14, 2000 at 05:07 PM (CDT)

Hi Everyone,
I sure hope you are all enjoying this beautiful weekend. The weather is perfect. I have a couple of neat things I want to share with all of you. Today I received a package in the mail from the United States Congress. When I opened it, there was a U.S. Flag enclosed with a certificate. The certificate said... "This is to certify that the accompanying flag was flown over the United States Capitol on August 17, 2000... The flag was flown in memory of Justin Thatcher" What a tribute! That was Justin's birthday, and it was requested by a member of Congress. I didn't even know that things like that could be done. I was very touched and honored to receive such a gift.
Another thing I wanted to share, is that Justin's headstone has been placed! It is beautiful. There will be a ceramic picture of Justin attatched to the top right corner, but it is not ready yet. I hope if any of you get a chance to see it, you will share your thoughts about it. Be sure to read the back, I think it's perfect. Always keep in mind, no matter how long you live, no life is so brief that it cannot change the world. Justin changed the lives of many, and I thank God every day for letting me share so much with him.
Thank God for your blessings every day, and be happy. Please keep remembering all of the children I have shared with you. Pray for them, and don't forget the angels. There are way too many to name. God bless you all.

Monday, October 09, 2000 at 08:01 PM (CDT)

Hi Everyone,
Well, yesterday was the one year aniversary of Justin's bout with AML. October 8th is a date I will never forget. That's the day Justin woke me up on my day off to tell me he had had a bad nose bleed but it had stopped and he was off to school. Our lives were never again the same. I was hoping that I was just an over concerned mom when I called the pediatrician and requested a blood test. That same day Justin was admitted to CHKD, where he would spend the greater part of the next 3 1/2 months. On a lighter note, Justin was a bit relieved when I came to the school to pick him up to go to the doctor's office. Little did I know at the time, Justin and Bobby had "MOONED" someone behind the bus on the way to school and had been reported. I believe he was supposed to have a "date" in the office at lunchtime!! He thanked me several days later. Of course knowing first hand how well that smile could get him out of trouble, the lunch "date" probably wouldn't have been a big deal! I love thinking back and remembering all the times that made me laugh. I regret that there are no more memories to make. The days are still difficult. My heart still aches. I wish I didn't really know the meaning of forever. I thank God for helping to keep my faith strong, because knowing I will be with Justin again some day, and my family, are the only things that get me through the difficult days. I have a poem to share... I like to think that Justin sent this letter from heaven just for us.

To my dear friends and family, Some things I'd like to say
But first of all to let you know, That I arrived okay
I'm writing this from Heaven, Where I dwell with God above
Where there are no tears or sadness, there is just eternal love
Please do not be unhappy, Just because I'm out of sight
Remember that I'm with you, Every morning, noon and night
That day I had to leave you, When my life on Earth was through
God picked me up and hugged me, And He said, "I welcome you"
"It's good to have you back again, You were missed while you were gone
As for your dear family, They'll be here later on"
"I need you here so badly, As a part of My big plan
There's so much that we have to do, To help our mortal man"
Then God gave me a list of things He wished for me to do
And foremost on that list of mine, Is to watch and care for you
I will be beside you, Every day of the week and year
And when you're sad, I'm standing there, To wipe away the tear
And when you lie in bed at night, The day's chores put to flight
God and I are closest to you, In the middle of the night
When you think of my life on earth, And all those loving years
Because you're only human, There's bound to be some tears
Do not be afraid to cry, It does relieve some pain
Remember, there would be no flowers, without a little rain
I wish that I could tell you, Of all that God has planned
But if I were to tell you, You would not understand
One thing is for certain, Though my life on Earth is o'er
I am closer to you now, Than I ever was before
And to my many friends, Trust that God knows what is best
I am not far away from you, I'm just beyond the crest
There are rocky roads ahead for you, And many hills that you must climb
Together we can make it, Taking it one day at a time
It was my philosophy, And I'd like it for you too
That is, give unto the world, So the world will give to you
If you can help someone, Who's in sorrow or in pain
Then you can say to God at night, My day was not in vain
And now I am contented, That my life, it was worthwhile
Knowing, as I passed along the way, I made somebody smile
When you're walking down the street, And you've got me on your mind
I'm walking in your footsteps, Only half a step behind
And when you feel a gentle breeze, Or wind upon your face
That's me giving you a great big hug, Or just a soft embrace
When it's time for you to go, From that body, to be free
Remember, you are not going, You are coming home to me
I will always love you, From this place way up above
I'll be in touch again soon, P.S. God sends His love

Seems to fit, doesn't it?
Hope you will all continue to pray for the children who have so many needs and many tough times ahead of them. They really need your prayers. Jenna's surgery went well, hopefully they can keep the pain under control. Jasmine is doing well, Connor is doing well, Stephen is doing well, Tommy is doing well, Jack is doing well, Craig is doing well, and Bryan is doing well. Isn't it great to hear good news??? They still all have a long way to go. There is another little girl from VB at Duke now going through transplant. Her name in Hunter. Please keep her in your thoughts and prayers. Hope you all have a great week. God bless you all.

Wednesday, October 04, 2000 at 03:14 PM (CDT)

Dear Jussy,
Six months ago today you left me, you broke my heart and took a huge part of it with you to heaven. Our family will never be the same, the ache will never go away. There is a dark cloud that hangs over our lives now. Sometimes it is so hard to comprehend the reasons why you had to go, to understand God's plan. The pain we live with each day seems so pointless. I will see you again someday Jussy. I can't wait to hold you once again, feel your soft skin, and see your sweet smile. I will always love you Jussy. That love continues to grow stronger every day. Love cannot die. I hope you can still feel the power behind my love. You continue to be in our thoughts and in our hearts every single day. I am still so touched by the number of hearts you have reached and the number of lives you have changed. Yesterday we had another call from the Military branch of the National Marrow Donor Program, telling us that someone from Little Creek that donated on your behalf is a bone marrow match for someone desperately needing a transplant. Thanks to you Justin, others now have hope. Your short life had more meaning than that of many who live to be 80! I thank God for blessing our family with your life. You brought us so much joy to go along with the pain and heartache. I will always be so proud of your accomplishments. There is a beautiful song that I listen to often. It reminds me of you, and helps me to know that you are always with me...

TIME HAS A DIFFERENT MEANING NOW
SINCE YOU FOUND YOUR SCARLET WINGS
FOREVER SEEMS LIKE YESTERDAY
BUT ONLY ANGELS KNOW THESE THINGS

I CAN HEAR YOUR VOICE SOMETIMES AT NIGHT
AND IT ECHOS THROUGH THE DAY
WHEN MY SOUL CRIES OUT FROM MISSING YOU
I REMEMBER WHAT YOU SAY

As long as you love
You will see me in the stars
As you look up at the stars
I will be there

As long as you love
I will whisper in your ear
Little whispers you will hear
As long as you love
As long as you love

YOU ARE STANDING HERE BESIDE ME NOW
AS I WATCH THE CHILDREN PLAY
TO THOSE OF US YOU LEFT BEHIND
YOU ARE NEVER FAR AWAY

EVEN HEAVEN CAN'T HOLD YOUR HEART
FOR NO BOUNDRIES LOVE ALLOWS
SO LITTLE ANGEL SPREAD THOSE SCARLET WINGS
AS YOU WHISPER TO ME NOW

As long as you love
You will feel me in the sun
In the warming of the sun
I will be there

As long as you love
You will understand the rain
You must bless the falling rain
As long as you love

As long as you love
You will see me in the stars
As you look up in the stars
I will be there

As long as you love
I will whisper in your ear
Little whispers you will hear
As long as you love
As long as you love

Thank you for being such a good angel Justin. Please remember that I need you. I hope you will continue to give us the strength we need to get through each day. Help us to be loving and kind, and to take care of each other. Watch over us. I love you so much.
Love, Mommy

Sunday, October 01, 2000 at 02:34 AM (CDT)

Hi Everyone,
Hope you are enjoying this beautiful weekend. It's hard to believe that another winter is right around the corner, and it's especially hard to believe that in one week it will be a year that we found out Justin had AML. It was the beginning of the end. It was also the beginning of an experience that touched my heart in more ways than you can imagine. Those six months were bitter-sweet. While we were going through the most difficult days of our lives, we were also feeling the love, generosity and compassion of thousands of people. We will never be able thank you enough. While we may never understand God's plan for Justin, we are certainly grateful to Him for allowing Justin to touch your hearts. Wednesday will be Justin's six month angel anniversary. I often wonder if life will ever be good again, but then I look around and I see my loving family...Paul and my beautiful Courtney, and I know that life IS good, and that Justin is always with us. I pray that God continues to give us all the strength that we need carry on. Paul has an incredible amount of energy when it comes to keeping Justin's memory alive. He is very anxious to get moving with Relay for Life, and he is continuing to promote bone marrow donor registration. There is an upcoming drive in December, I'll let you all know more about that when I know all of the details. As usual, we thank you again for your unending support.
I have a prayer request. Jenna is headed back to Duke on Monday, in preparation for surgery on her hip. This will be a difficult and painful surgery for Jenna. Please pray that it goes well for her. Jenna is a special girl and she has traveled a very long and difficult journey, which is far from over. You can follow her progress and send her messages on her website. (www.caringbridge.com/page/jennaswebsite)
Also, Michael's mommy Jane is out of the hospital and the baby is ok, but daddy Mick is still hospitalized and seriously injured. Please remember them in your prayers, also. They mean a lot to us. Thanks! Have a great week ahead. God bless you all.

Monday, September 25, 2000 at 10:40PM (CDT)

Hi Everyone.
Please say a few prayers for my dear friend Jane and her husband Mick (angel Michael's parents) who were injured in an accident yesterday evening. They are both hospitalized. Jane is OK but she is pregnant and has a hairline fracture of her back with compressed discs. Mick is more seriously injured with multiple fractures of legs, knees, back, feet, pelvis and will need many surgeries. Please keep them in your prayers. Thanks.

DEAR JUSSY,

IF WE COULD HAVE A LIFETIME WISH
A DREAM THAT WOULD COME TRUE,
WE'D PRAY TO GOD WITH ALL OUR HEARTS
FOR YESTERDAY AND YOU.
A THOUSAND WORDS CAN'T BRING YOU BACK
WE KNOW BECAUSE WE'VE TRIED...
NEITHER WILL A THOUSAND TEARS
WE KNOW BECAUSE WE'VE CRIED...
YOU LEFT BEHIND OUR BROKEN HEARTS,
AND HAPPY MEMORIES TOO...
BUT WE NEVER WANTED MEMORIES
WE ONLY WANTED YOU.

I miss you so much Jussy. I love you more and more each day!

Thank you to a special friend of mine that sent me that poem. It says just what I'm feeling right now. Hope you all had a great weekend. Thanks for all the great response we've had regarding Relay for Life. Please continue to thank God for your blessings, remember the children that need your prayers, and especially remember those families that have walked in our footsteps. God bless and love to all.

Thursday, September 21, 2000

***Last night, right after I updated this journal, I learned that sweet little Brooke has ended her journey on this earth and gone to be with our Lord. Another angel in heaven, another beautiful bud in God's Garden, where she will bloom and grow. Another bright star to light the night. Please pray for Brooke's family to find the strength and courage they will need to go on without her. Her website address is www.caringbridge.com/nc/brookespage.
Please leave her family a message of sympathy.

Wednesday, September 20, 2000 at 9:15PM (CDT)
Hi Everyone,
Well, we are developing quite a team for Relay for Life and we already have had many great ideas shared with us for fund raisers. Thank God for all of you and for your willingness to work with us and to help us to keep Justin's memory alive. It is so important to us that Justin's death has a purpose. The death of a child is so painfully hard to understand, even with the help of God, but if some good comes of it, then he will not have died in vain. In addition to working with Relay for Life, we are also working on another bone marrow drive in Justin's memory, which will be in December. We are counting on your support, you have been so generously supportive to us with everything else! Thank you for that!
I guess we are doing ok these days. I don't know that we will ever be great again, but we are ok. There is a constant ache in my heart, an empty feeling in my gut, and an unanswered question in my mind. I often wonder if Justin needs me, and I'm not there for him. Afterall, don't children need their moms?? I do find some comfort in knowing that I have already experienced the worst possible thing life can offer, and I have survived. I thank God for giving me the strength.
Thank you for the prayers and messages you have sent to the other children that we care so much about. Just to update you briefly, Brooke is still in PICU fighting for her life. She is holding on, which is great. Connor is doing great! He has been "home home" for a couple of weekends and should be home to stay very soon. Bryan is doing well with chemo treatments at CHKD. I know he is missing school and his friends right now, but he is so fortunate to have many of the same great friends as Justin!!! Little Jack is back in NY for another two weeks of painful antibody treatments. Jasmine is home, good days and not so good days, Jenna has such a hard time with pain in her hip and other joints, and needs prayers for upcoming surgery in October. Tommy is doing great post transplant #3!! He is out of the hospital and growing WBCs and platelets!! So many things to be thankful for, so many prayers still needed. Please remember them all.
Well, here's a thought to leave you with... JUST FOR TODAY
Decide to be happy today, to live with what is yours... your family, your business, your job, your luck. If you can't have what you like, maybe you can like what you have. Just for today, be kind, cheerful, agreeable, responsive, caring, and understanding. Be your best, dress your best, talk softly, and look for the bright side of things. Praise people for what they do and do not criticize them for what they cannot do. If someone does something stupid, forgive and forget. After all, it's just for one day. Who knows, it may turn out to be a nice day!
Thanks again for checking in with us! God bless you all.

Sunday, September 17, 2000 at 01:16 PM (CDT)

HAPPY 17th BIRTHDAY COURTNEY!
You are my sunshine, the light of my life. Thank you for being you. I love you so much!!!

Thank you to all of you who left notes for Courtney, it is thoughtful of you to think of her, too. Hope you are all having a great weekend. It's such a beautiful day. Today I saw "the boys" outside just hanging out and I heard a go-ped racing by. I could almost picture Justin with them. He was always outside doing something. He always wanted to be busy. I guess he got that from me. I still ache for him so badly.
I must go for now and spend some time with my birthday girl, but please thank God for each day He allows you to share with your family, and please remember to pray for all of the children who continue on this difficult journey!! God bless you all!

Wednesday, September 13, 2000 at 07:35 AM (CDT)

Hi Everyone,
This sure is a busy month for birthdays in our family. I want to wish wonderful years ahead to NIKKI and to RIDGELY. They have both been the greatests cousins to Justin and he loved them both more than words can say! HAPPY BIRTHDAY!! This sunday will be another difficult "first" for us, as COURTNEY will also celebrate her birthday. I know it will be especially difficult for her not having her little brother here to help her celebrate her sweet seventeenth. I hope we can make the day special for her, as she is very special to us! I feel so fortunate to have her in my life, and I am so sorry for the pain she has to endure. I wish I could take it away from her. Together, we spend time talking and remembering the funniest stories about Justin! We are so glad we have them to look back on.
Paul has already started working on setting up a team and planning fundraisers for next years Relay For Life, which will be held June 8-9, 2001. It's early to start, but we are anxious to do our part to help find a cure in Justin's memory. If anyone is interrested in being on the "Friend's of Justin" team, please call us. Our first fundraiser will be held on Nov. 14. It will be a skating party at Haygood Skating Rink. I will post more info about it later on, but please mark your calendars! Our scholarship fundraiser held there was so successful, that we thought it would be a great place to start, and our friend Dana has been so generous to us by donating the rink. We are very grateful to him.
As I have said many times, we are still so thankful for your continued support and for still taking the time to check on us. The counter on this website continues to click away. I can still remember Justin saying "WOW mom, we're gonna hit 30,000!" Now I'm thinking "WOW Jus, we're gonna hit 85,000!" If you take the time to read, please take the time to write a note in the guestbook. Those notes continue to be strength and help us to get through each day. We thank God every day for blessing us and for blessing Justin with such wonderful and caring friends.
I hope you all will continue to pray for all of the children who have to go through so much. It is so unfair. Right now, Brooke especially needs your prayers, as she is in PICU fighting for her life. She needs a miracle. Please visit her website and let her family know that they are in your prayers. www.caringbridge.com/nc/brookespage
Thanks to all of you. God bless you!

Saturday, September 09, 2000 at 08:40 PM (CDT)

Hi everyone,
The days continue to take us on emotional roller coaster rides. Justin continues to be in my thoughts every single waking moment. I find myself thinking of him, wondering what he's doing and if he is okay. I still have moments of guilt for leaving him when I promised him I would always be there for him, but I have no doubts that he is in the very best loving hands of God. I miss him so much. There are no words to describe the feelings inside my heart. I do continue to find strength, I know I get it from Justin. But oh, how I would give anything to have him for one more day...
I can't believe how quickly the time has gone by. It was seven months ago today that Justin had his transplant. We were so hopeful then. The transplant journey is such a long and difficult one. I continue to follow and keep in touch with many of the families and children that we met at Duke. There is always heartbreaking news. Other times there is such joy. It is so emotionally draining for these families. I wanted to share a few things about some of them, good and bad. Tommy Burnette, who had transplant number 3 two weeks ago is doing well and thank God, he has all of his Daddy's donor cells growing now! Please pray that this engraftment holds and that Tommy continues to do well! Please pray for Jenna who is home now and doing well since her surgery, but is having such pain in her hip and knee and will be having surgery on her hip in October. Jenna's joints are deteriorating from the medications she has had to take for so long. Jasmine is also home, but still having problems. Her counts are dropping and they don't know what is going on with her. Please pray that they will know what to do for her. Please say extra prayers for a little girl named Brooke. Brooke had her transplant two weeks before Justin and did so well initially, but has been at Duke for the past 2 weeks with pneumonia and her prognosis is very poor. Please pray for her family's strength and for the miracle they are hoping for. For those of you who followed little Michael, who is with Justin now, his parents are going to have a baby! I am so happy for them. Michael can never be replaced, but hopefully this child will bring some needed joy into their lives.
Thanks again for checking on us for continuing to leave notes for Justin and for our family. It is so helpful to us to know that you care so much. Hope school is going well so far!
God bless you all.

Sunday, September 03, 2000 at 09:41 PM (CDT)

Dear Jussy,
Wow, five months without you. It's still like a bad dream and I just want to wake up.
Today we had our Labor Day Picnic in the court. I really missed seeing you and Bobby running around. I missed hearing your voice. I want to see you so badly, it really hurts sometimes to know you are with me, but not to be able to reach out and touch you or hear you or feel you. I keep waiting for the days to get easier, but the pain of your death is something we will always have to live with. It will never go away, but I guess that's what we get for loving you so much! Our love for you will never die Justin. I hope you know that.
Love always, Mommy and Dad

Hi Everyone,
Hope you have had a good week. I can't believe summer has come and gone so quickly and that school will start this week. I had an unexpected, difficult time this week while school shopping with Courtney. We wanted to buy so many things for Justin that we just knew he would love. I guess there isn't anyplace that I can go that there aren't memories or reminders of some kind. I am so grateful that we had a chance to make so many wonderful memories together! I hope all of Justin's friends have a great experience as you head off to high school. I'm sure my angel will be with you to guide you in the right direction!
Today, I felt Justin by my side, as he guided me to this poem.

A MESSAGE FROM HEAVEN

Perhaps you weren't ready yet
to have to say good-bye...
Perhaps you've thought of things
you wish you'd said--well, so have I.
For one thing I'd have told you
not to worry about me...
I'm with the Lord in Heaven now--
you knew that's where I'd be.
I'm sorry that you're feeling sad,
for I'm so happy now...
I've asked the Lord to ease the hurt
and comfort you somehow.
It's hard at the beginning,
but I know you'll make it through...
I hope it helps to know
That I'll be waiting here for you.

When I'm feeling down, Justin always gives me a rainbow. He is still the bright spot in my days. Please continue to pray for all of our special friends who continue to fight for their lives each and every day. Have a great week, and God bless you all.

Tuesday, August 29, 2000 at 10:33 PM (CDT)

Hi everyone,
The fact that you are still reading this continues to amaze me. I must thank you for still leaving notes for us, they are definately a part of our healing. It is so helpful for us to feel the love that is sent to Justin. Tonight I saw his beautiful face on TV again. The sparkle in his eyes and his beautiful smile brought tears to my eyes. He was so full of life. We were on the channel 10 news at 11pm when they were talking about the possible cancer vaccine that seems to working for all types of cancer. This is some of the research that has been going on at Duke. Wouldn't that be wonderful? Something to pray for. Sure would save a lot of lives. Well, I hope you all have a wonderful and safe Labor Day weekend, and enjoy these last few days before school starts! Please remember to pray for all the children going through such difficult times, there are so many. God bless you and love to all.

JUST FOR TODAY
Just for today I will try to live through the next 24 hours and not to expect to get over my child's death, but instead learn to live with it one day at a time.
Just for today I will forgive all the family and friends who didn't help or comfort me the way I needed them too. They truly did not know.
Just for today I will smile no matter how much I hurt on the inside, so that maybe my heart will soften and I will begin to heal.
Just for today I will reach out to comfort a relative or friend of my child, for they are hurting too, and perhaps we can comfort each other.
Just for today I will free myself from my self-inflicted burden of guilt, for deep in my heart I know if there was anything in this world I could have done to save my child from death, I would have done it.
Just for today I will honor my child's memory by doing something with another child because I know that would have made my own child proud.
Just for today I will offer my hand in friendship to another bereaved parent, for I DO KNOW how they feel.
Just for today when my heart feels like breaking, I will stop and remember that grief is the price we pay for loving, and the only reason I hurt is because I have had the PRIVILEGE of loving so much.
Just for today I will not compare myself with others. I am fortunate to be who I am and to have had my child for as long as I did.
Just for today I will allow myself to be happy, for I know that I am not deserting my child by living on.
Just for today I will accept that I did not die when my child did, my life did go on, and I am the only one who can make that life worthwhile once more.
And I will love my child with all my heart, forever and ever.

(V. Tushingham, who also lost a child)

Friday, August 25, 2000 at 03:05 PM (CDT)

Hi Everyone,
It's been awhile since I have had a chance to update the website, with the exception of the short birthday greeting I left for Justin from a small internet cafe on one of the beautiful Greek Islands. I have made a couple of attempts to update, but have managed to lose the entry somehow. We returned a few days ago from our wonderful family vacation. We spent our time cruising, sunning, touring, and of course shopping in the historic cities of Italy, Greece and Turkey, and the beautiful, sunny Greek Islands. It was a wonderful time with family. We are so blessed to have a large, loving and tremendously supportive family that is always there for us. God really blessed us in that area. I know Justin was with us. Every place we went, I pictured him and was able to imagine just what he would be doing. I miss that face though. I miss the mischief he was always able to find. I miss the warm feeling he always gave me. It's good to be home. There is no place on Earth like USA, American food, and the English language! Our first day home, I went to the cemetary and I was so amazed to see all the flowers, notes, cards, and balloons that were left on Justin's birthday. Thank you all so much for remembering Justin on his 15th birthday. He was so looking forward to this birthday and getting his permit, that much closer to the red toyota truck buddy Ron was going to pass down... so looking forward to starting high school this fall at FC. The start of the school year will be another difficult time for us. I can't believe how quickly the summer has passed. Just a year ago, we were getting ready for school to start. Life was so busy, so hectic, so NORMAL. I guess we never really know what our next day will bring. We are all in God's hands and our time here on earth should be treasured. I hope you will all take life a bit slower and enjoy each day that God gives us.
I hope you will all continue to remember our special friends who need your prayers. We were so upset to return home and find out that Jenna has been so ill and that she is again at Duke with sepsis, an infection in her blood. This past week she also had to have gall bladder surgery, possibly the infection there may have caused her sepsis. She is doing much better but still needs prayers. She is over a year out of transplant, and still has a tremendously difficult journey ahead of her. Jasmine has been enjoying some time at home, but continues to have many problems. Last night she was readmitted to Duke with high fevers. Please pray that they will find out what is wrong. She is such an awesome child. I miss her so much and the way she always made Justin smile. It was amazing. Please remember little Jack, as he is going through painful post transplant antibody treatments at Memorial Sloan-Kettering. He still has such a long journey ahead. Please also pray for Tommy. He had his third transplant today. I'm sure this was a very difficult decision for his parents to make. I cannot even begin to imagine going through transplant three times. Please remember all of these children and their families. Remember especially the children who are now angels with Justin and their families. They have the most difficult journies of all and there are more of them every day.
Thank you for continuing to keep us in your thoughts and prayers. The other day at work, it was brought to my attention that there is a severe shortage of platelets at the Red Cross. So many of you gave platelets for Justin when he needed them, and we were so grateful. I hope that if anyone is able, you will consider calling the Red Cross and making an appointment to donate platelets in Justin's memory. There are many others with the same needs that Justin had. Thanks again.
God bless you and love to all.

Websites...
www.caringbridge.com/page/jennaswebsite
www.caringbridge.com/nc/jasmine
www.jack-matthews.com
http://users.erols.com/tburnette

Thursday, August 17, 2000 at 06:09 AM (CDT)

MY SWEET JUSSY,

I HOPE YOU ARE HAVING THE HAPPIEST BIRTHDAY EVER. I LOVE YOU AND MISS YOU SO MUCH!!! HAPPY 15TH SWEETIE.

LOVE FOREVER,
MOMMY, DADDY AND COURTNEY

Friday, August 04, 2000 at 08:49 PM (CDT)

Dear Jussy,
Wow, it's been four months. The ache in my heart is still there. The wound is still fresh. I suppose it always will be. I just want to hold you one more time. I want to hear your voice, see your smile, feel your cheeks next to mine. I want to watch you play hockey and ride your go-ped. I want to take you to get your driving permit in two weeks when you turn 15. You were so excited about driving! I want to watch you grow up, I want to see who you become. Boy, sure sounds selfish of me, huh? I miss you so much Jussy. I think of you every minute of every day. You have been such a good angel though. You always seem to be there when we need you the most. I hope you are having a beautiful eternal life and enjoying your time with God. Please continue to watch over us and give us strength. You are so missed by so many people. Stay with us Jussy... we need you.
I love you, Mommy

Hi everyone, Hope you are staying dry with all this rain! Thanks for continuing to check on us. We can only take one day at a time, some days are better than others. We are grateful for your continued prayers for us and for the other children and families we have come to love and care about. Please take time to enjoy life, complain a little less about things, and be thankful for everything God has given us. I want to share a beautiful poem with you, that I hope you will think of when you look at your children! This is more for younger children, but I think you will get the message. Please take time to read it.

One More Day

To my child...
Just for this morning,I am going to smile when I see your face and laugh when I feel like crying.
Just for this morning, I will let you wake up softly, all rumpled in your sheets and I will hold you until you are ready for the day.
Just for this morning, I will let you choose what you want to wear, and smile and say how perfect it is.
Just for this morning, I am going to step over the laundry, and pick you up and take you to the park to play.
Just for this morning, I will leave the dishes in the sink, and let you teach me how to put that puzzle of yours together.
Just for this afternoon, I will unplug the telephone and keep the computer off, and sit with you in the backyard and blow bubbles.
Just for this afternoon, I will not yell once, not even a tiny grumble when you scream and whine for the ice cream truck, and I will buy you one if he comes by.
Just for this afternoon, I won't worry about what you are going to be when you grow up, or second guess every decision I have made where you are concerned.
Just for this afternoon, I will let you help me bake cookies, and I won't stand over you trying to fix them.
Just for this afternoon, I will take you to McDonald's and buy us both a Happy Meal so you can have both toys.
Just for this evening, I will hold you in my arms and tell you a story about how you were born, and how much I love you.
Just for this evening, I will let you splash in the tub and not get angry.
Just for this evening, I will let you stay up late while we sit on the porch and count the stars.
Just for this evening, I will snuggle beside you for hours, and miss my favorite TV show.
Just for this evening, when I run my fingers through your hair as you pray, I will simply be grateful that God has given me the greatest gift ever given.
I will think about the mothers and fathers who are searching for their missing children, the mothers and fathers who are visiting their children's grave instead of their bedrooms, and the mothers who are in hospital rooms watching their children suffer senselessly, and screaming inside that they can't handle it anymore, and when I kiss you goodnight, I will hold you a little tighter, a little longer.
It is then, that I will thank God for you, and ask Him for nothing, except one more day.

God bless you and love to all...

Friday, July 28, 2000 at 08:07 AM (CDT)

Hi Everyone,
Wow, the summer is flying by, isn't it? In just another week, it will be four months since Justin went to be with God in Heaven. I miss him more than I could ever have imagined. I love him more and more each day, and thanks to him, I have a tremendous love and appreciation for all of those around me. Our family and friends have become more dear to us, and I am so grateful for their ongoing love and support, and for allowing us to keep Justin's memory alive. Thank you Lord.
I have a special prayer for all of us that grieve for Justin.

"Hold us up, Lord"
Lord, we know you're always busy,
For you've many things to do,
But when sorrow overcomes us,
Well, we need to talk to you,
For we've lost someone precious,
And they're with You there above,
And it's someone that we needed,
And it's someone that we loved.
We're feeling lost and all alone,
And though we do believe,
We need You, Lord, to hold us up,
To help us while we grieve.
Please give us strength and courage, Lord,
To bear what we must bear,
And nudge us when our faith is weak
To remind us You are there.
Give us hope for our tomorrows,
Tell us life will still go on,
Show us, Lord, that all this darkness
Will be followed by the dawn.
You have led us through so many things,
You've pulled us through before,
Hold us up, Lord, till we're through this
And we are strong once more.

Thanks again for remembering us, and for remembering all of the other children going through such terrible times. Please keep them in your prayers. Please pray especially for Jenna. They just found out she has a serious degenerative disease of her hip, thanks to the wonderful steroids required after transplant. This will require surgery at some point. Remember Jasmine, as they aren't really sure what is causing her problems. Please also remember Tommy, as yesterday he had his spleen removed in preparation for his THIRD transplant. I can't even begin to imagine this... Send prayers of thanks for Alex who is back in remission, and for Keri, who is finally growing some WBCs now. Your prayers are so helpful to them all. There are so many children with so many needs. There are so many families torn away from each other for months and months. It is a journey to hell and back. Despite my pain and grief, there are many times I am thankful that Justin no longer travels this journey.... Hope you all have a great weekend. God bless you all.

Sunday, July 23, 2000 at 08:05 PM (CDT)

Hi Everyone,
Each day when we check the web site, we continue to be amazed at the number of people that are still checking on us. It means so much to us to know that so many people care about how we are doing, and take time to leave a note to us or to Justin. We thank God for your continued support. Life has not gotten any easier for us, but we are into a routine, I guess you could say, and life goes on. I still can't believe that Justin is gone from our daily lives. I still expect to see him come through the door or hear his voice calling for me. The quiet time I used to treasure at home alone is no longer a good feeling. In fact, it is probably the most difficult part of each day. Not a day goes by that I don't shed a few tears. It is bittersweet to smile thinking of cherished memories, crying at the same time that there won't be more memories to make. I am so thankful for all the pictures I have taken over the years, and every time I find one tucked away someplace, I am thrilled! In every picture, he has that special smile!
Friday night was very special for Paul and me. Several of Justin's friends came over and spent the evening with us. We shared stories, laughs and tears. I had Justin's school yearbook here and several of the kids signed it for us. It was so good to see those of you that were here. Thanks for sharing your time with us.
I thought I would give you a quick update on several of the children I have mentioned in the past. Bryan Boyd is home from the DC hospital and doing well. The next step for him will be more chemotherapy. Connor Ackermann is doing very well and is planning to be discharged from Duke tomorrow to go to the apartment. He will still have six weeks or more in Durham, as he has to be there at least 100 days post transplant. Jasmine is doing so much better and has been going out on passes again. Hopefully she will be able to leave the hospital again soon. Tommy's parents have decided to go for the third transplant, but he will have to have his spleen removed first. This will be very hard on Tommy, not to mention the toll it takes on parents. Jenna continues to have joint pain, especially in her hip. It is very difficult for her to walk much, which she needs to do. Stephen just had his 9 month checkup at Duke this past week and he is doing great! Keri is anxiously waiting for cells to grow again, and they are hoping that he won't need to be retransplanted. Jack is home from the hospital in NY enjoying family time, but will have a long, difficult treatment schedule ahead of him. There are so many others... please continue to keep these children in your thoughts and prayers. They need your support and God's helping hands to get them through their journeys. Also, please remember Michael's family in your prayers, I know some of the pain they are feeling, and I ache for them.
One last thing, please remember a girl named Shaika in your prayers. Shaika became an angel today. She was also at Duke when we were there, and was about the same age as Justin. She and her family are from Saudi Arabia and several family members have gone through transplant. Please remember this family in your prayers. Shaika had a very long and difficult time post transplant, overcoming many life threatening complications prior to finally being discharged. It is so frustrating to come so far, just to lose the battle. These families are all special to us. Thank you for caring about them!
Hope you all had a great weekend. Summer is really passing quickly. Have a good week ahead. God bless you all.

Monday, July 17, 2000 at 09:40 PM (CDT)

THOUGHTS FROM JUSTIN....

I'M FREE

Don't grieve for me, for now I'm free.
I'm following the path God has laid you see.
I took his hand when I heard him call.
I turned my back and left it all.

I could not stay another day,
To laugh, to love, to work, or play.
Tasks left undone must stay that way,
I found that peace at the close of the day.

If my parting has left a void,
then fill it with remembered joys.
A friendship shared, a laugh, a kiss,
Oh yes, these things I too will miss.

Be not burdened with times of sorrow.
I wish you the sunshine of tomorrow.
My life's been full, I savored much.
Good friends, good times, a loved one's touch.

Perhaps my time seemed all too brief.
Don't lengthen it now with undue grief.
Lift up your hearts and peace to thee.
God wanted me now, he set me free!

Your support has been wonderful. Your notes in the guestbook touch our hearts so deeply. Thanks for being here and for remembering us in your daily thoughts and prayers. Please keep praying for all of the children going through this nightmare. God bless you all.

Friday, July 14, 2000 at 10:18 PM (CDT)

Hi Everyone,
Another weekend is here, hope it will be a good one for all of you! Today has been "one of those days" and I am glad to have it behind me. I spent lots of time talking to Justin today, but boy, what I would give to have one of his hugs! They always made me feel better, and he especially enjoyed doing it since he passed me up in height! For some reason he liked to put my head on his chest and just rub it in that he was taller!! Oh how I miss him!
I wanted to share another update on Bryan Boyd, and this is from his family. "Bryan is improving, day by day. He sat up and read a magazine the other day, which is a milestone! His grogginess is slowly fading away, but not entirely. He still has a ways to go, but is showing improvement. Thank you for your continuous prayers and please don't let them cease!"
Please remember to keep Bryan in your thoughts and prayers.
I heard the most beautiful song today. It's called Somewhere Between Heaven and Earth, by Cindy Bullens. She lost a daughter to cancer a couple years ago.

I curse the night
I watched you slip away
Wouldn't have done no good
to beg you to stay

You were here beside me
But now you're gone
I'm just trying hard
To carry on

But there's no rhythm in the rain
There's no magic in the moon
There's no power in this pain
Till somewhere between heaven and earth
I can find you again

Hearts are broken
And dreams are lost
But I made a promise to love
At any cost

Little did I know
The price was so high
Losing forever
In the blink of an eye

There's no rhythm in the rain
There's no wishes in the stars
There's no power in this pain
Till somewhere between heaven and earth
I can hold you again

If I could one more time
Feel your hand in mine
Hear your voice call my name
And whisper sweet goodnight

Then there'd be rhythm in the rain
There'd be magic in the moon
No such thing as love in vain
And somewhere between heaven and earth
You'd be with me again
And I could see you again
And I could hold you again, my baby
Somewhere between heaven and earth
I will see you again

Please keep prayers going for little Jasmine, I need her to get well! She could bring a smile to Justin's face in an instant, which makes her extra special to me! I thank God that she is getting better, but she is still so sick. Thank you for remembering all the children who need your prayers so desperately to get well.
Thanks for your faithfulness to us. God blessed us with all of you. Thank you so much for all the notes and prayers still sent our way! They help us to get through each day. God bless you all.

Wed Jul 12 21:33:40 CST 2000

Hi Everyone,
THE GUEST BOOK HAS BEEN FIXED! I have really missed reading your notes!
This is just a quick update, especially to all of Justin's close friends, to let you all know that Bryan had his surgery and is doing fine!! He is now cancer free and will most likely be in the hospital for another week to recover, before returning to the Beach. He still has a long road ahead of him, as he will then begin his chemotherapy. The Boyd family thanks you all for your constant thoughts and prayers, they are so grateful! Please continue to remember him in prayer, and I will continue to keep you posted as I hear from them.
Please also continue to remember Michael's family in your prayers as they face a very difficult time of grief. Knowing the suffering is over, helps very little, knowing that he is with God, helps some, but in general, the pain is almost unbearable. The best way to describe the way Michael's parents may be thinking (my thoughts, too!)...

Please don't tell me you know how I feel,
Unless you have lost a child too.
Please don't tell me my broken heart will heal,
Because that is just not true.
Please don't tell me my son is in a better place,
Though it is true, I want him here with me.
Don't tell me someday I'll hear his voice, see his face,
Beyond today I can not see.
Don't tell me it is time to move on,
Because I can not.
Don't tell me to face the fact that he is gone,
Because denial is something I can not stop.
Don't tell me to be thankful for the time I had,
Because I wanted more, I'll never be as I was before.
What you can tell me is you will be here for me,
That you will listen when I talk of my child.
You can share with me my precious memories.
You can even cry with me for awhile.
And please don't hesitate to say his name,
Because it is something I long to hear everyday.
Friends, please realize that I can never be the same,
But if you stand by me,
you may like the new person I become some day.

www.caringbridge.com/fl/michael
Thanks for caring. God bless.

Tue Jul 11 15:57:04 CST 2000

Hi everyone,
My heart is so heavy, as I have learned that our little friend Michael Rice bravely earned his angel wings last night. Please pray for Michael and his family, especially his parents Mick and Jane. I know some of the terrible pain they are feeling now. I will never understand why children are taken from us after enduring so much and fighting so hard. God must have needed another special angel. Michael is only five, and a beautiful child. They are a very special family and I just know that Justin was there to welcome Michael into heaven and to show him around. I know they have been grateful for your messages and prayers, and I thank you for them. Also, please remember Justin's friend Bryan. He was having his surgery today, so please keep him in your prayers. Your support has been wonderful. I am grateful for your huge hearts! God bless you all.

Sun Jul 9 17:05:19 CST 2000

Hi Everyone, hope you are all having a great weekend. Today was another "first" for us, I guess we will be having a whole year of them. Today is Paul's birthday. Happy birthday sweetie, I do know how tough the day is, wishing Justin was here with you, as I too have had a birthday since Justin has been gone. We continue to take the days one at a time, knowing that Justin guides us and continues to give us strength. This week I picked out the headstone for Justin's grave, and I am really pleased with how I think it will look. I had a very special inscription put on the back, but I will wait until it has been completed to share that with you all. I think that whoever reads it will have to agree that it fits Justin's life perfectly. It will actually be a few months before it is completed. Every time I visit the cemetary, I still find flowers, notes, little gifts... I know Justin loves having everyone visit! He has certainly left his imprint on many hearts!
This week, Justin's friend Bryan will be having his cancer related surgery on his knee up in DC. Please remember Bryan and his family in your prayers. After this, he will be having several rounds of chemotherapy, and your prayers and support will mean so much to the Boyds. To all of Justin's friends, you are the greatest group of teens I have ever known. Your wonderful support of Justin, and now Bryan, has been super. Justin was so blessed to have you all as friends. Please also continue to pray for Michael and his family as Michael continues to show more and more leukemia cells in his blood. Jasmine is doing better but still has a lot of pain. There are so many needs for all the children that go through transplant. Please pray for Jack, Connor, Jenna, Keri, Tommy, Alex, Stephen, Craig, Jordan, Thomas and so many others, and Jussy, please watch over them all! You are such a good angel, my heart is with you always. I know God is with us and I know you are with us....
If I go up to the heavens, you are there.
If I make my bed in the depths, you are there.
If I rise on the wings of the dawn,
If I settle on the far side of the sea,
Even there, your hand will guide me,
Your right hand will hold me fast.
-Psalm 139:8-10
I love you Jussy.

Hope you all have a great week, the summer is speeding by so quickly, take time to stop and smell the flowers. God bless you and love to all.

Tue Jul 4 15:17:32 CST 2000

Hi everyone,
This will be my third attempt to update this journal today. The CaringBridge server has been down for the past several days while they are attempting to upgrade their server. It has been frustrating not to be able to check on people or to update, and consequently, the guestbook entries from July 2nd and 3rd, have been lost in the crossover from one server to the other. They say they are working on this, but it is sad for me because your notes have come to mean so much to us.
Well, it is three months ago today that Justin left us to go to his new home in heaven. I still can't believe he is gone and pain is still as strong and vivid as the day he left us. Knowing that God has His reasons and that it is all part of His plan is reassuring, but my selfishness and need still wants him here. We are still so thankful that God chose us to be Justin's family. We learned so much from Justin and can only hope that loving him and sharing his life has made us better people. Amazingly, our love for him continues to grow stronger each day, as does the ache in our hearts. We have come to learn that this ache will never go away, we will just simply learn to live with it, if that is possible. I sure hope that Courtney knows that our love for her is just as strong. We are so fortunate to have her. She is so loving and sensitive. We have been touched to see just how strong her love for Justin is. Our hearts ache for her, as children should never have to endure anything so heartbreaking. It would certainly be helpful for her to have some friends that were a little more compassionate, but she has certainly learned who her true friends are, as we all have, and we are most thankful for those friends! Thank you for continuing to keep us in your thoughts and prayers during a most difficult time.
We hope you are all having a happy and safe 4th of July. I know Justin will enjoy all the fireworks tonight, he has the best seat in the house! Thank you to all of you who checked on our special friends and left them notes and prayers. Micheal, Jasmine, Connor, Bryan and their families, and many others, all need your support now. Michael and Jasmine especially need extra prayers now, please pray for their healing. I know the pain and anxiety their parents feel knowing their children's lives are in danger and trusting in God and the prayers of others to see them through. Thank you for being there for them. God bless you all.
www.caringbridge.com/fl/michael
www.caringbridge.com/nc/jasmine

And to my Justin...

You are my special angel,
Sent by God, you see,
I am grateful for having you,
As part of my family.

You are my special angel,
Many blessings have you brought,
Into my life, you have come,
You are in my every thought.

You are my special angel,
Remember that, forever and always,
I give thanks to God for sending you,
To be with me these days.

You are my special angel,
You make me happy and keep me laughing,
Always remember, my love for you,
Is unconditional and everlasting.

May God keep you safe and happy, you will always be in my heart. I love you, Jussy...

Saturday, July 01, 2000 at 11:05 AM (CDT)

Hi everyone,
*I HAVE SPECIAL PRAYER REQUESTS*
I am coming to you with some sad news and asking for your prayers...you were always so good, and still are, at keeping Justin in your prayers. Little Michael Rice was in the hospital the same time as Justin and had a cord blood transplant. I have talked about him before and have shared his web page with you (www.caringbridge.com/fl/michael). He is 5 years old now. He has had some problems but overall had been doing well. Yesterday they found out that he relapsed. The leukemia has returned and they have given him 3 weeks to live. Please pray for him and please visit his web site again. You have no idea how much encouraging words and prayers from strangers can mean to someone fighting for the life of their child! I do! Please keep Michael in your prayers. He and his mom are very special to me.
Also please remember Jasmine, she is also in the hospital having a hard time. Justin loved her so much! (www.caringbridge.com/nc/jasmine)
Connor may be starting to grow cells! Please pray for those cells to grow. (www.caringbridge.com/va/connor)
I also wanted to share another web site with you. We have been fortunate to meet another hockey family who lost their special son to cancer two years ago. Matthew Barton was 10 at the time and hockey was his life as it was for Justin! In his memory, his parents are building an outdoor roller hockey rink. It is in the Richmond area. They have two other sons who will really enjoy skating there! Please check out this website! (www.expage.com/mattsrinkpage) (The password to check out the photos is 684ever). This is a wonderful family! What a tribute to their son and his love of hockey!
Thank you again for all of your love and support. We continue to need you and your prayers! God bless you all.
Jussy, thanks for the sunshine!! I love you angel of mine!

Thursday, June 29, 2000 at 07:46 PM (CDT)

Hi Everyone,
Today when it was raining so hard, I thought of Justin and I was reminded that there are "Holes in the Floor of Heaven"...

There are holes in the floor of heaven,
And his tears are pouring down,
That's how you know he's watching,
Wishing he could be here now.
And sometimes when you're lonely
Just remember he can see.
There's holes in the floor of heaven,
and he's watching over you and me.

And seriously, I ran to the mall today and I told Justin I really hated to walk in the rain. When I got out of the car, it had stopped raining. I really thought I was pressing my luck when I asked for just a bit of sunshine, but he did it for me!!! So, those of you that were excited to see the sun today for that brief time, thank Jussy for asking God to give us a break!!
This afternoon I was reading Chicken Soup for the Soul and I found this, and it touched me.

If I had my child to raise over again,
I'd finger-paint more, and point fingers less.
I would do less correcting and more connecting.
I'd take my eyes off my watch, and watch with my eyes.
I would care to know less, and know to care more.
I'd take more hikes and fly more kites.
I'd stop playing serious, and seriously play.
I would run through more fields, and gaze at more stars.
I'd do more hugging and less tugging.
I'd build self-esteem first, and the house later.
I would be firm less often, and affirm much more.
I'd teach less about the love of power, And more about the power of love....

Enjoy your children! Love them while you have the chance! Hope you are having a good week. Thanks to all of you who continue to check on us and leave us notes. We are so fortunate to have you in our lives! Please pray for Jasmine who is back in the hospital with fevers and sinus problems, Connor, who is still waiting for cells to grow, Bryan who is back at CHKD with an infection, and all of the other children fighting these terrible illnesses. God bless you all!

Monday, June 26, 2000 at 02:16 PM (CDT)

Dear Justin,
Everyone does such a good job of writing to you on here, so I thought I would write to you too. I have a few things I want to tell you.
From the first moment I looked into your face, I have loved you so much. When you were a baby you had that golden smile even then, and those big blue eyes, everyone loved you! As a toddler, you were never afraid of anything. You were so trusting. You had a difficult childhood with chemotherapy and hospitals, but your spirit never dampened. As a little boy you became my star athelete. You grew into a fine young man, Justin, and a great hockey player, but always into a bit of mischief! I was still so proud of you. When I look into my heart, I have the fondest memories of you. I am so fortunate that we hads such a close relationship. I thank God for that every day. You were such a fun loving person, who loved people and loved life. We shared many special talks and secrets, laughter and tears, hope and despair. You gave me such joy. You handled your illness with such dignity and a level of maturity unknown to many people. I remember one time at Duke, I dropped you off at the door for your radiation treatment because you were so sick. You stopped to help an elderly woman up the steps and held the door for her, holding her by the arm so she wouldn't slip on the ice. My heart was overwhelmed with pride.
Life is so different without you Jussy. There is a heaviness in the air that was never here before. You were so much a part of me. I think of you constantly. Sometimes parents don't make their feelings known to their children, they just assume that their children know that they love them. I never wanted you to question my love for you. I hope you never tired of hearing me tell you so often that I loved you. I know I never tired of hearing you tell me!! You and Courtney are the most wonderful gifts that God has ever given me. I am so proud of you both. Thank you for your unconditional love. Your life was a blessing to us Justin and you will always be with me. You have touched my heart and my life in a way that has forever changed me. Thank you for coming into my life and allowing me the chance to watch you grow and to learn from you and love you.
Love forever,
Mommy

Friday, June 23, 2000 at 06:19 PM (CDT)

Hi Everyone, Thanks for continuing to check on us. I love to read the notes you leave and we are so grateful for your support. We just keep taking one day at a time and somehow God gets us through the rough times. I wouldn't have thought it possible. Knowing Justin was so loved by all of you helps us so much! Hope everyone is off to a good summer. I am working a lot of hours, which helps to pass my days that were so full of Justin. Courtney is keeping busy also, so things are pretty quiet around here most of the time. I still love getting calls and visits from Justin's friends. They give me such good feelings.
I have a special reason for writing tonight. I wanted to write last night but didn't have time and now I wish I had... There is a little boy named Michael Bowden. He took over Justin's room at Duke after we left and was transplanted around mid April. His transplant failed and this morning Michael earned his angel wings. Please pray for Michael and for his family, as I know what a difficult time this is for them. Please visit his website to send your sympathies to his family. It is www.caringbridge.com/page/michaelbowden
Please also pray for Jasmine, our special friend, who is having more problems since her sinus surgery, Connor, who is at day +24 and still has no WBCs (pray for cells to grow!), Tommy who has a failed transplant for the second time and for Alex who is facing a second transplant. I know how good you all are at checking on these children and praying for them! They are all wonderful, caring families with hearts that ache for their children. Please give them strength! It is so difficult to watch your child go through such a hard time. Thanks for caring so much!
Hope you all have a great weekend. God bless you and love to all.

Monday, June 19, 2000 at 08:14 PM (CDT)

Hi...well, we have survived another of many "firsts" without Justin. Father's Day was a bit difficult for Paul, I know, but thank you so much for the many thoughtful notes, cards, visits, and calls. Nothing really takes away the ache and empty feeling, but knowing so many people really care, really helps. You all have had a tremendous impact on our lives and we are so blessed that Justin touched yours! He is really being a great angel. There are so many stories I could share with you, but I really don't want anyone to think I'm crazy! Let's just say that I KNOW Justin is with me, he has helped me so many times. I thank God for allowing him to spend so much time looking out for his family and friends! We are still amazed that so many of you still find the time to follow our progress and leave us notes of encouragement. They mean so much to us.
Saturday night the Robin Hoods of Virginia Beach had their annual Beach Blast to raise money for children's charities. It was such a success! It is always a sellout crowd. They have been so helpful to our family and we are so thankful for them! I know everyone who attended had a great time.
I hope you all are enjoying the summer. It is so hard not seeing Justin run through the house, or hear him play in the pool. I miss the sound of his go-ped zooming down the road. I miss his messy room. I miss his good humor and his smile. I miss his unending love and affection. Hug your kids today! Tell them how much you love them, and enjoy your time with them! They are such a gift from God. Thanks for being here. Please remember the other children I have shared with you, they still need your prayers. Have a great week. God bless and love to all.

Wednesday, June 14, 2000 at 10:55 PM (CDT)

Hi everyone. This is to all of Justin's friends, but especially to the eighth graders at Lynnhaven Middle School. It's hard to believe the school year has come to an end. I still remember Justin telling me how badly he wanted to get back to Lynnhaven. He loved that school, or should I say, he loved the people there. His friends, his teachers, everyone. Justin was such a people person. He got that from Paul! He was so outgoing and personable. (I hope I haven't given anyone the idea that Justin was even close to perfect. He could sure be a little trouble maker when he wanted to be, but that cute little smile of his had a way of letting him ease his way out of trouble!) I wish you all the best as you head off to high school in September. You are all such a wonderful group of kids! Justin was so blessed to be surrounded with so many good friends. They say, in times of trouble, you really find out who your friends are. Well, I am overwhelmed at the support you have given to Justin and to our family. I am so amazed at how you have all jumped into action when it came time to do something for Justin. It is such a good feeling to see teenagers today reaching out to help other people. You are all showing this community that there is still a lot of good in children today. I am so glad to see that you are supporting Bryan the same way that you did Justin. You all have been through so much, having two good friends diagnosed with cancer and losing one of them has made for a very difficult year. Thank you to all of you and to your families, thank you to the faculty and staff, Ellen, Dr. Matney, PTA, and every single one of you who helped us through this entire journey. I hope you will always remember Justin, and I hope you will remember to be tested and have your name added to the National Marrow Registry when you turn 18. That would be the greatest tribute you could ever give him! Thank you for all of the emails and notes you continue to send our way. They have helped us more than you will ever know. Oh, we were really excited to hear that Bryan is getting to join you all for the last day of school!!
I guess life will never really return to normal. We still have good and bad days. I keep waiting for the door to slam and to hear that voice call to me. I love that he still called me mommy, even though he was 4 inches taller and 30 pounds heavier. He was rather enjoying that last growth spurt of about 5 inches that made him soar above me!! He would hold that chin up high so he would look almost a head taller! What a neat kid he was. Talking about him is the best medicine for me. Thanks for listening!
As usual, please remember our friends traveling this same journey. Please pray for Stephen who is back in the hospital, but hopefully just with an infection in his IV catheter. Pray for Alex (relapse post transplant) and her family and for Tommy who may have a failed graft. Jasmine and Jenna are still not feeling well, but overall are doing ok. Connor is doing pretty well at the moment. Jack is finally starting to grow some cells after the second transplant! Michael is better and is out of the hospital. I've had several people ask me for some websites again for these children so I will add them at the end. Following them and remembering them in your prayers is so helpful to these families. Well kids, have a great summer! God bless you, we love you all!

Tommy (http://users.erols.com/tburnette)
Alex (www.glencove.com/tmartini/alex.htm)
Stephen (www.caringbridge.com/page/stephenspage)
Jack (www.jack-matthews.com)
Jasmine (www.caringbridge.com/nc/jasmine)
Michael (www.caringbridge.com/fl/michael)
Connor (www.caringbridge.com/va/connor)
Jenna (www.caringbridge.com/page/jennaswebsite)

Saturday, June 10, 2000 at 07:49 PM (CDT)

Hi Everyone,
It has been a very emotional weekend as Paul and I spent a good part of it at Relay for Life. What a humbling experience for me. I have never seen anything like this before. This 20 hour event set a world relay record of 1.6 million dollars in donations. There were about 6000 cancer survivors who walked in the survivors walk. God has sure been answering lots of prayers. The walk was a bit difficult for me to watch. I was so happy for those who were fortunate to participate, but I wanted to see Justin there so badly. I was so proud of the three teams Lynnhaven Middle School. Together they raised about $15,000 in memory of Justin and in honor of Bryan. They are to be commended on their efforts, they did a wonderful job! I hope they had as much fun as Paul did!!
Friday evening, with Paul at my side, I braved the crowd of about 10,000 (this was a major big deal for me!) and got up to present Justin's Memorial College Scholarship. We were honored to award our first annual scholarship for $2000.00 to Chuck Hall. Who knows, maybe next year it can be more! Chuck is a survivor of Hodgkins Lymphoma. He was treated at CHKD and was very inspirational to Justin. Best wishes Chuck!
I have a brief update on some of our friends. Please say some extra prayers for Tommy and the Burnette family. Tommy has had two transplants already and may have a failed graft, which would require a third transplant. This is so hard to go through ONCE. It would be so hard on Tommy and his parents. Tommy's website is http://users.erols.com/tburnette. Jasmine had her sinus surgery this week and thanks to many prayers, she did great! Craig was discharged and is at an apartment now, Connor is doing well but hasn't been feeling the greatest, Stephen is doing wonderful, Michael was discharged and is back at the apartment. Bryan has been discharged from CHKD and walked in the survivors walk last night. Jack has had his second transplant and is doing well, but needs prayers for cells to grow! (It was great to see Jack's daddy Mark walking in the survivors walk on Jack's behalf!) Please remember all of the children going through this difficult journey. I know they are all thankful for your messages and prayers.
Hope you have all had a great weekend so far. Thank you to all of you who remembered Justin in the relay. We are very grateful to you. Thank you for the continued support, notes, and prayers. God bless and love to all.

Tuesday, June 06, 2000 at 10:20 PM (CDT)

**Please check the photo album!**
Hi everyone,
The telethon for the Children's Miracle Network was a great success, with record breaking pledges! Our next big event will be Relay for Life on Friday night. Justin had planned to walk in the survivors walk this year. We will be there to support the teams that are walking in memory of him. They are doing an outstanding job raising money to help find a cure for cancer! It will be another of many difficult days, I'm sure. If you can be there, please go out and support these kids who are working so hard for Justin, and so many others fighting such a terrible disease. It is so neat to think that Justin has touched them all this way! They are so giving and unselfish. They want to do something positive, and they are making a difference. (Thank you to all of you!) Hope to see you friday!
I thought I'd leave you with a special note from JUSTIN to all of you....

When tomorrow starts without me,
and I'm not there to see;
If the sun should rise and find your eyes,
all filled with tears for me;
I wish so much you wouldn't cry,
the way you did today,
while thinking of the many things,
we didn't get to say.

I know how much you love me,
as much as I love you,
and each time that you think of me,
I know you'll miss me too;
But when tomorrow starts without me,
please try to understand,
that an Angel came and called my name,
and took me by the hand,
and said my place was ready,
in heaven far above,
and that I'd have to leave behind,
all those I dearly love.

But as I turned to walk away,
a tear fell from my eye,
for all my life, I'd always thought,
I didn't want to die.
I had so much to live for,
so much yet to do,
it seemed almost impossible,
that I was leaving you.

I thought of all the yesterdays,
the good ones and the bad,
I thought of all the love we shared,
and all the fun we had.

If I could relive yesterday,
just even for awhile,
I'd say goodbye and kiss you,
and maybe see you smile.

But then I fully realized,
that this could never be,
for emptiness and memories,
would take the place of me.

And when I thought of worldly things,
I might miss come tomorrow,
I thought of you, and when I did,
my heart was filled with sorrow.

But when I walked through Heaven's gates,
I felt so much at home.
When God looked down and smiled at me,
from His great golden throne,

He said, "This is eternity,
and all I've promised you.
Today for life on earth is past,
but here it starts anew.
I promise no tomorrow,
but today will always last,
and since each day's the same day,
there's no longing for the past.
But you have been so faithful,
so trusting and so true.
Though there were times you did some things,
you knew you shouldn't do.
But you have been forgiven,
and now at last you're free.
So won't you take my hand
and share my life with me?"

So when tomorrow starts without me,
don't think we're far apart,
for every time you think of me,
I'm right here, in your heart.

(by D. Romano)

Sunday, June 04, 2000 at 04:04 PM (CDT)

**CHECK THE PHOTO ALBUM!*

Hi Everyone,
Well, today is the two month anniversary of Justin's death. Today is two months since Justin's birth into eternal life, free of leukemia, happy, healthy, and sitting beside God. What more could I wish for my child, but my selfishness wants him back here to be with me. Not a minute of the day goes by that he isn't in my thoughts. I love him and miss him so much.
Today is a special day for the Children's Miracle Network, which includes Children's Hospital of the King's Daughters and Duke Children's Hospital. I hope you will consider making a pledge to CMN at 1-877-224-6633 today or to CHKD at 1-757-669-9000 or Duke 1-919-684-3000. All of the money goes directly to the hospitals. I can't think of a better cause, as we have learned, we never know what life has to offer. We are so fortunate to have such wonderful children's facilities so close to home, which includes a staff of wonderful professionals. We are very grateful to all of them!
Please continue to remember these special children in your prayers. Special prayers for sweet Jasmine, who will be having sinus surgery this week. This is risky because of low platelet counts. Also, pray for Alex, she had a transplant several months ago, and her family has learned this week that she has relapsed. Continue to pray for Jack, Connor, Bryan, Michael, Stephen, and all of the other children that I have come to love. Congratulations to Craig who is hopefully going home tomorrow!!
Again, I thank you all for your continued thoughts and prayers, and for taking time to check on us. We still love reading your notes! You are all great friends to us and I thank God for all of you.
God bless and love to all.

Thursday, June 01, 2000 at 08:08 AM (CDT)

Hi Everyone, I hope you had a chance to see the article in the Beacon today about the skating party and retiring Justin's hockey number. It was really nice. We are doing ok, just when I think things are going well though, something pops up or my mind starts to wonder and then it suddenly becomes a bad day. I guess that will always happen, but God keeps giving us the strength to carry on. We have loved seeing Justin's friends that have stopped at our house, thanks guys! You are the greatest, your faithfulness to Justin and our family has been wonderful.
Please remember Connor in your thoughts and prayers, he had his cord blood transplant this week and is just beginning this journey. Also, please remember our little friend Jack at Sloan Kettering in NY. He had his transplant 3 weeks ago, and has not had good results and will be retransplanted today. I am sending special prayers for a friend of my neice, who received her angel wings yesterday after an accident and a long ICU stay. Please remember Lisa and her family in your prayers. I know Justin will be with her, he has always been good at greeting newcomers!
Hope this has been a good week for everyone. It's hard to believe that my Jussy has been gone almost 2 months now. Thank you for checking on us and leaving us notes, we are so grateful to you all! God bless you, love and prayers to all.

Web sites for Connor and Jack:
www.caringbridge.com/va/connor
www.jack-matthews.com

Saturday, May 27, 2000 at 09:31 PM (CDT)

Hi everyone,
I guess we needed the rain right? What a day! Things are slowly returning to a new normal. The pain never seems to go away, the aching heart is always with me, but some tears are being replaced with more and more great stories. I really love talking about Justin, it seems like anything someone says, I can say "I remember when Justin ..." I always knew that I had a very special love for my children, and having one taken away, really, is something I never thought I could live with. It seems like that love still keeps growing for both of them. Thank you God for giving me such wonderful, loving gifts.
I thought I would just give you all a quick update on some of the children I follow, and stick in a few special prayer requests! First of all, please pray for Britton and her family. Britton has been in the hospital for so long, and last week I mentioned that she was in PICU. Yesterday she earned her angel wings. I know Justin is taking good care of her, but her parents need strength during this difficult time! Michael has been readmitted to Duke with some breathing problems. Please pray that his fungal infection has not returned. Connor has finished his radiation treatments and is now getting chemotherapy in preparation for the "big event" this coming Wednesday. Jack is doing better now, but still needs cells to grow!! Craig is doing great and got to go out today on a pass for a few hours! Jasmine has been going home-home off and on for the past few weeks and she is doing well, but she is still having some fevers for unknown reasons. PG has gone home-home to NJ!! Jenna has had good results with her 9 month immune studies, they are on the rise finally! Stephen is at home, and doing better each day. Keri, who is from Tidewater, is back at Duke with low counts, unknown reasons. Please continue to pray for all of these children and their families. There are many others I have not mentioned that all have so many needs. Thank you for taking them into your hearts like you did Justin.
I have really enjoyed all the the emails and cards I have received from "Justin's gang", you are such a wonderful group of kids!! I think it is you all who seem to give us the strength we need to get through each day. The notes you leave in the guestbook are so touching and so sincere, and they really come from your hearts. You are always in our thoughts and in our hearts! God bless you all!

Wednesday, May 24, 2000 at 02:35 PM (CDT)

Hi everyone! Wow, last night was such a great success! I had more hugs than I could count! Everyone was wonderful!! There were over 700 tickets sold for the skating party to raise money for Justin's scholarship fund! I think everyone had a great time and Haygood Skating Rink and the Sharks Hockey Club did a wonderful job. They framed one of Justin's jerseys, a couple medals, and a plaque, all of which Justin earned, as well as a picture of him. It was beautiful and much larger than I had anticipated. We are proud and honored that it will hang in the rink where Justin loved to spend his time. It was incredible to see so many people come out and support something so important to our family. Thank you for your tremendous support and for helping us to keep Justin's memory alive. He was such a special child to so many people. Hopefully, I will be able to share with you all soon the exciting news of who will be the recipient of the scholarship. It will be a special person, as most of the kids who fight cancer at such a young age, have a wonderful sense of caring and have developed a maturity far beyond their years. I will keep you all posted! We are really excited about this and we are really excited about being able to share it with you all!
We were really happy to see Bryan Boyd and his parents at the party last night. Bryan looked great! Keep up the good work Bryan, you know, our angel is pulling for you! Please remember all of these children fighting such tough fights. They are amazing. They do so much better than most of the adults I have worked with as a nurse!! It is just so upsetting to me that children especially have to go through such things. Please continue to pray for them. Sometimes it is so hard to understand God's plan for us.
Please know that we are so grateful to everyone who has done so much for us. We ask our angel Justin to be with you all. Remember, there is....

AN ANGEL WATCHING OVERHEAD
A SPECIAL GIFT ABOVE
GIVEN FROM THE FATHER
HIS PRECIOUS GIFT OF LOVE

ALWAYS GENTLY LOOKING
SMILING DOWN ON YOU
MAKING SURE EACH STEP YOU TAKE
WILL SAFELY CARRY THROUGH

A VERY SPECIAL ANGEL
WITH SO MUCH LOVE INSIDE
GIVEN TO US DAILY
WATCHING US WITH PRIDE

FEEL A GENTLE BREEZE ABOVE
KNOW HIS SPECIAL TOUCH
IT'S YOUR GUARDIAN ANGEL
LOVING YOU SO MUCH

REMEMBER AS YOU WALK IN LIFE
YOU NEVER ARE ALONE
AN ANGEL THERE BESIDE YOU
YOUR HEART IS NOW HIS HOME

God bless you and love to all...

Sunday, May 21, 2000 at 04:12 PM (CDT)

Hi Everyone, hope the weekend is going well. This cold front was not very welcomed by me, but I guess we did need the rain, so for that, I am thankful.
I've had lots of people asking me about Connor. Connor Ackermann is now at Duke and doing well. Yes, he is in remission. Tomorrow he begins his total body iradiation which will be followed by chemotherapy again prior to transplant. I think his transplant should then be the following Wednesday. Please keep Connor in your prayers and remember his family. They still have a long journey ahead of them. Connor's parents have started a website for him and Connor's dad told me you are welcomed to follow his progress. Please leave them some encouraging words. You are all so good at that and I know from experience how much it helps to know that so many people care about what happens to your child. It really helps to know you aren't going through this alone. Thanks to all of you! His website address is
www.caringbridge.com/va/connor
Our family is doing pretty good, but life is sure different. The memories are nonstop, for which I am grateful. Some of them bring smiles and many of them bring tears. It still seems so unreal to us. I keep hoping to wake up from this bad dream, although a nightmare would be more descriptive. Justin will forever be a bright spot in my life. I remember him so lovingly. I remember all the good things, almost as if he was never a problem!! But we all know the truth about that!! Paul and I get such good feelings being with and talking to Justin's friends. They are such a great group of kids! Helping them to deal with Justin's death has been very healing for us. Although we can't really understand God's plan for Justin, when we talk to them, we are able to listen ourselves. Hopefully some of it rubs off on us! We are thankful for all of them and grateful for their maturity and wisdom, as well as their love and support.
Hope to see you all at the scholarship fundraiser Tuesday evening. Thanks to everyone who has helped us by selling tickets. We are really excited to give this scholarship in Justin's memory. We thank God for all of you! Please remember all the children in need of your prayers...Bryan, Jack, Connor, Craig, Jasmine, Michael, Jenna, PG, Stephen, Jordan, Thomas, Tommy, there are so many. These are just a few of them, and going home for these kids is a long way from being well, they still have no immune system for so long. Thanks for being here. God bless you all. Love...

Friday, May 19, 2000 at 11:51 PM (CDT)

Hi everyone, hope you all had a great week. Tonight Paul and I went and spent some time with all of Justin's friends at a great party. (I don't think I ever listened to music so loud guys!!) What a wonderful group of friends, Justin was really blessed to have so much support. We are so grateful to all of them for including us in their evening of fun! And how thoughtful, they even made a video of the evening for Bryan, Justin's friend recently diagnosed with cancer. I don't think I have ever met a more caring group of teens. It is so unfortunate that they are having to deal with so much at such a young age. I'm sure someday we will know God's reasons. Many of these same children are working very hard in preparation for the American Cancer Society's Relay for Life. They have formed two teams, one in memory of Justin and one in honor of Bryan, and they are working so hard. It is so neat to see these kids wanting to help others so much. I thank God for all of them!
I wanted to share something really neat with you... Today I had a call from the Red Cross, they were looking for my brother. Turned out that he registered with the National Marrow Donor Registry when we were testing people on Justin's behalf and he has come up as a potential match for someone!! We are so excited, and he is also. I think it would be so exciting and wonderful to receive that call! He will go in next week for more testing, and who knows!!! It may turn out to be nothing, but it is still exciting for us. Justin had a goal of helping others through the drives we held. I think there is a famous quote from Justin..."You may not be able to help me, but you might help someone in Texas..." It would be so awesome to have a match for someone come from within our own family! I know Justin would be so excited.
Hope you all have a great weekend. Please remember to pray for all of our little friends, the special children going through some rough times. Please pray especially for Craig, Connor, Jack, and Bryan, who still all have a long difficult journey ahead of them. Thank God, Stephen and Michael both went home this week!! They are both miracles!!! Thank you for all of your continued prayers and support. I sound like a broken record at times, but it truely comes from my heart! God bless you and love to all...

Wednesday, May 17, 2000 at 10:49 PM (CDT)

Hi everyone, your support continues to amaze us. Justin was so fortunate to have so many wonderful friends and supporters. You have all come to mean so much to us! I have something special for you to read that I have already shared with our family and some special friends, now I share it with all of you...

MY SPECIAL ANGEL

I AM SENDING YOU MY SPECIAL ANGEL
ON THE WINGS OF PURE LOVE
ONE OF EXQUISITE BEAUTY
FROM HEAVEN ABOVE.

I AM SENDING HIM TO YOU
JUST SO YOU WILL KNOW
I CARE SO MUCH ABOUT YOU
AND WANTED TO TELL YOU SO.

I HAVE CALLED UPON MY ANGEL
AND SENDING HIM TO YOU
TO COMFORT, LOVE, AND GUIDE
IN EVERYTHING YOU DO.

HIS SOFT WINGS WILL GATHER
CLOSE AROUND YOUR SOUL
WHEN YOU FEEL THAT TOUCH FROM "NO WHERE"
THEN YOU WILL KNOW.

HE HAS PROMISED TO PROTECT YOU
TO KEEP YOU SAFE FROM HARM
TO TAKE AWAY THE DARK FEARS
TO MAKE YOUR HEART LIGHT AND WARM.

TRUST IN YOUR "ANGEL"
YOU WILL FEEL HIM ALL AROUND
IN YOUR TIME OF LONLINESS
IS WHEN HE WILL BE FOUND.

He is always with us! Can't you feel him? He is such a great angel! Hope everyone has a great week. We are doing OK with all the wonderful support. Thanks to all of you. God bless you and love to all...

Monday, May 15, 2000 at 02:50 PM (CDT)

Hope everyone's week is off to a great start. Yesterday was a bit rough at times especially during church, but I could feel that Justin was with me. Thank you all for the special gifts, calls, and emails I received. You are all so kind and we love you all so much!
Earlier today when I was reading over some of the guestbook entries, I came across an entry that I have deleted, but feel I need to respond to, as this entry was very unkind and thoughtless, not to mention that this woman feels I am unChristian and jealous of the other children whom I have asked you all to pray for. Obviously, she doesn't know me, but she is certainly entitled to her opinion. To her, I would simply like to say that I did not mention names or locations and I will not apologize for something I have written in my personal journal, something that comes from my heart, I will simply invite you to please NOT read about our personal lives if you do not like what I have to say. And perhaps your friend needs to look closely at what God has given her, and thank Him, for her child's success with transplant is truely a gift from Him. I am so relieved that everyone else saw my point in my previous entry. The child I spoke of was not treated at Duke. Every mother I met at Duke had wonderful faith, very positive attitudes, and tremendous caring and concern for each other. As a nurse, I have seen many people complain about many different things, when they should be thankful. We all do at times. Please never take the gifts that God gives us for granted. Paul and I feel so fortunate that we had Justin as long as we did. He was one of the most wonderful gifts I will ever receive. He was far from perfect, he was a very typical teen, loved to get into trouble, but he was still wonderful. He was loving, kind, and caring. And I miss him so much. Thank you Lord for allowing me the privilege of being his mom. And I thank you Lord, for the same privilege you have given me with my wonderful Courtney.
Just another reminder about the fund raiser next week...It is a skating party in Justin's memory. All procedes will go the the Justin Thatcher Memorial College Scholarship Fund, which will be awarded anually to a cancer survivor. The party is Tuesday May 23, from 7-9pm at Haygood Skating Rink. Justin's Hockey number 17 will be retired that evening by the Virginia Beach Sharks. We hope you will join us there! Tickets are $5.00, please let us know if you still need one! Thanks! Hope you all have a great day! The day is beautiful isn't it? God bless you all. We send you our love...

Sunday, May 14, 2000 at 01:19 PM (CDT)

HAPPY MOTHER'S DAY TO ALL YOU WONDERFUL MOMS!!
**New picture in the photo album...2 great kids!**

Yesterday I updated the journal, so if you missed it, you can just click on history. I just wanted to leave a special message to my angel on Mother's Day. I am including a web site for our special friend Jack. Please remember him in your prayers. His web site is a little different, lots of great pics to look at, but if you scroll down the page, you will come to "My Parents Diary." Please leave them a message! (www.jack-matthews.com) Thanks to all of you for wonderful good wishes and for your support. We still love reading your notes!

Dear Sweet Jussy,
God, how I love you! In the forty days since you've been gone (who's counting!) my love for you has grown stronger than I ever imagined possible. Your beautiful smile has touched so many hearts. You have left behind an amazing legacy. You showed us all your strength, your courage, and your determination. It all came so naturally to you! Being your mom is such an honor for me, Justin! I have been so blessed. I thank God for you every day. I will always be here for you, and you will always be my child. I know God is taking good care of you, although sometimes I feel like I've let you down. I remember one day when we were talking about your leukemia. I told you that I wished God had given it to me instead of you. You said, "Oh no mommy, that would be worse because I wouldn't want anything to happen to you." Just one of the many times that you touched my heart...They say you have a golden smile, well, you also have a heart made of gold. Thank you for being such a wonderful son Justin, and thank you for making me so proud. Please continue to give me the strength I need to get through each day. Help me to be the best mom I can be to Courtney! Jussy, my love for you is eternal, just as your life with God is now. No one will ever take your place in my heart, you will remain there forever.
<3 Always,
Mommy

Saturday, May 13, 2000 at 07:30 AM (CDT)

Hi Everyone,
Thank you for all the special notes and emails I got this week. I'm really glad to know that some of the things I have said are able to touch your hearts, as they really come from mine. I think all of us are probably guilty of taking things for granted. Sometimes we don't know how much we have until we lose part of it. I follow many other journals from transplant children, and I am always so upset to read one,(it is for a child whom I have never mentioned), but he is at home now, not the apartment, but home-home! His mom complains every day about the work involved with outpatient life, medications to give, (can be very time consuming) blood work to draw, IV catheter dressing changes, clinic apointments.... I have wanted to tell her so many times to BE GRATEFUL! HER SON IS ALIVE! THANK GOD FOR THAT! I would LOVE to fill her shoes right now, with my Jussy of course! I loved caring for him and I was especially looking forward to all that time together. Every minute we spent together was enjoyable for me. I am so thankful that God gave us a special closeness that many teens don't share with their parents. I am so fortunate that I still have my beautiful, special Courtney to keep my heart full.
We continue to have good times and bad, though I imagine this is how life will stay for quite awhile. I find that during the day, I talk to Justin a lot, laugh about things, remember fun times. At night, the house is too quiet and we are all thinking WHY? But the question is never answered, I just have to trust God, and know He is doing my job now, and that Justin is OK.
Tomorrow is Mother's Day, it will be a rough day for me, just one of the many "firsts" that we have to get through during the next year. I want to wish all of you Moms a special day tomorrow, and to all of you children, love your moms and please give them an extra hug! Being a mom is such a big job, but a wonderful one, too! I really want to say something to all those mom's who have traveled the same journey we have, who give so unconditionally to their children. You are all the greatest and I am such a better person for having met you all... Patty, Jane, Kay, Ronnie, Lisa, Beth, Kelley, Page, to name a few. Thank you for your love and your faith, you are all amazing women.
Please remember those moms who have lost children, this journey is even more difficult than the last one. And as always, please remember to pray for the special children from Duke who mean so much to us Jasmine, Michael, PG, Stephen, Jenna, Jordan, Thomas, Tommy, Craig, Keri, Connor, there are so many others, and our other special friends from CHKD Jack, Bobby, Adam and Bryan. We love them all. Please say extra prayers for Jack, Britton and Dalton who are all in PICU right now. God bless you all for caring about others so much. Thank you for loving Justin, and thank you for being our friends. Love to all...

Tuesday, May 09, 2000 at 08:05 AM (CDT)

Hi everyone,
I hope you are having a good week. I guess just having Monday gone makes it easier for many of you! We are all doing "OK". Some days are more difficult than others, some days bring tears, others bring many smiles. We have so many fond memories that keep us going. How ironic, the things I disliked the most, yelling, fighting, doors slamming, stereo blaring, etc., are the things I miss the most. We all want our children to be perfect little angels. Well, now I have one of those and I would give anything to have my "not-so-perfect" child back again. Please love your children for who they are. Enjoy the noise they make, because it is a sure sign that they are happy, healthy, fun-loving children! Hug them every day and tell them how much you love them. Allow them to make mistakes so they can learn from them. And thank God for them. I would give anything for one more hug, or to see that smile again, hear that voice, touch those cheeks. I know someday I will again, but I never have liked waiting!!!
I hope you all will please remember our little friend Conner Ackerman in your prayers, as he and his parents are traveling to Duke today to begin their transplant journey. Conner is finally in remission after a tough fight and will be having a cord blood transplant very soon. They have a long road ahead of them. Please also continue to remember the other children, thank God most of them are doing so much better, but still have such a long way to go.
Thanks for remembering us and checking on us each day. We still need your love and support! You are all gifts to us from God. God bless you and love to all...

Saturday, May 06, 2000 at 08:19 AM (CDT)

Hi everyone,
Thanks for all the wonderful guestbook entries and emails I have received. You are all so thoughtful to continue checking on us. It does my heart good to write down some of my thoughts and feelings, and I love the honest, open, notes that some of you leave to Justin. Be assured that he knows how you hurt, he feels your love. He is with us every step of the way during this painful time and he will continue to give us strength. God will give us strength.
Just a little reminder about the benefit for the scholarship fund. It will be held at Haygood Skating Rink on Tuesday, May 23 from 7-9pm. Call us if you need tickets. They will also be available at Lynnhaven Middle School. The Sharks are planning something special I think to retire Justin's hockey number. Thanks for supporting something so important to us. I know Justin was a great kid (but gee, I'm his mom, I'm supposed to think that!) but I am still so overwhelmed with the way he touched so many hearts.
I wanted to share with you all that Stephen has made remarkable progress this week, thanks to the many prayers! A week ago they thought he would soon be one of God's angels. Yesterday, he was moved out of PICU and is doing great. Thank you for giving their family so much support. Most of the children that I follow are doing well now, but always remember that they can change so fast, Stephen is a perfect example. They are at such risk until the immune system is built up again, which can take 1-2 years. They always need our prayers so please continue to pray for them.
Looks like a beautiful weekend ahead, so please enjoy it, and know that you are all in our hearts and we that God for you all each day. We could not get through this difficult time without your continued support. God bless you. Love to all...

Wednesday, May 03, 2000 at 08:46 PM (CDT)

Hi everyone,

I thought I would write a quick update, but I sit here and have no idea what I want to say. I have many thoughts going through my head that I want to share, but I'm not sure how I want the words to come out. I know, that usually isn't a problem for me. I can just ramble on and on! Well, Justin has been on my mind constantly, no matter where I am or what I'm doing. He is always with me. He has been so helpful to me, I am always so proud of him! I think I have gone through all of the normal stages of the grief process, although I am far from understanding exactly why God took my sweet, loving child from me and why God failed me by not answering my prayers, but I am working on that. I have reached the conclusion that I am being selfish, but what parent wouldn't be when it comes to their child. You see, God did answer prayers, but not mine, not yours. He answered Justin's prayers. I know that now. The day before Justin died he said to me, "Mom, my life sucks." (This is honestly the only time I ever heard him complain about anything). I reminded him it was only a very small part of his life, and that it would be better soon. Shortly after that I heard Justin mumbling and when I asked him what he said, he told me he was just praying. At the time, I did not have the courage to ask him what he prayed for. Now I know. Justin knew he was very ill. We were very honest with him about each new problem he faced. Justin prayed to be free and God answered his prayer by giving him wings so he could fly. Justin put his trust in God, and he was not forsaken. Tomorrow will be a difficult day for all of us who loved Justin so much. But remember, he will forever be in our hearts. I thank all of you for loving him so much.

So many of you took time to visit Stephen's website and send notes and prayes. Lisa thanks you and so do I. He is making progress today!! Please keep praying for him, he has a long way to go. The other children all seem to be doing better also! Michael is better, breathing easier. Jenna is getting stronger and coming off some medications (great step!), Jasmine is much better and spending her time out of the hospital (yeah Jasmine!). Please continue to remember Craig who is at day +7 post transplant, Justin's friend Bryan, who has really just started his journey with chemotherapy, and our CHKD buddy Jack who is going through some rough pretransplant chemo right now. They all continue to need your prayers.

Here's hoping you all have a great thursday, and think of Justin with a smile on your face, and a warm feeling in your heart!! Love to all of you...

Monday, May 01, 2000 at 06:16 PM (CDT)

**I changed a couple of pictures, please check the photo album!**

Hi...wow, it was such a beautiful day today. I'm sure my angel had a hand in that! I know he gives God all of my special requests. I am just writing a quick entry today. First of all, I wanted to let you all know that we are hanging in there. God gives us the strength we need to get through each day, and Justin gives us an extra boost every now and then. It is definately not easy, but you all help us so much. Thank you for all of the continued love and support, the phone calls, cards, letters, and donations to the memorial scholarship fund. We are so grateful!
I am also writing to request some special prayers. Some of you are so good at that. There is a young boy named Stephen, I have mentioned him before, and he is really in need of your prayers. Stephen and his mother Lisa were the first ones we met at Duke. Justin just loved Stephen, he is 8 years old and such a sweetie. Lisa was such a help to me. Stephen had a cord blood transplant back in October, had a few problems, but has been home for awhile doing great until recently. He is now in ICU with some serious life threatening complications of transplant (thanks to no immunity, anything dormant in the body is a risk). Please check his web site and remember the Dennison family in your thoughts and prayers, as well as all of the other children I have mentioned. They have such long hard journeys. www.caringbridge.com/page/stephenspage
Hope you have all enjoyed this beautiful day. I am certainly more grateful and appreciative of everything God gives us, knowing that He gives, and He takes away...
Love to all.

Saturday, April 29, 2000 at 10:30 PM (CDT)

Hi to all of you. We are still anxiously reading your notes each day, they are still so important to us, and help us more than you'll ever know. It is so heartwarming to read your thoughts and to feel your love for Justin. I am still amazed at his magnetism. Well, we are still having some rough days. I have loved having Justin's friends stop by. Please know you are all welcome any time. It helps to talk and share stories. So often, I can feel him with me... other times I am searching for him. I just want to be sure he knows how much I loved him; how much I will always love him.
Thought I would let you know that the memorial scholarship fund is growing nicely. We are hoping that we may even be able to give a scholarship this year, but we will have to work quickly! I will keep you posted on this!
Tonight Paul and I attended a hockey tournament that was played for Justin. The MVP of the tournament was given a beautiful plaque in memory of Justin, and they also presented one to us. It was so thoughtful of them to think of us. Thank you to the Rattlers and a special thank you to the Barton family from Richmond. They also lost a son (another roller hockey star!) to cancer 2 years ago.
Pleas continue to pray for the children at Duke. Prayers are working! So many of them are improving. Also, please remember Bryan here in VA Beach, and another little friend of Justin's from CHKD, Jack Matthews. Jack is only 3 years old and currently undergoing chemo and bone marrow transplant Sloan Kettering in NY. They all need your prayers! I am sending special prayers to my dear friend Ellen Rostov and her family, as they mourn the loss her dear mother. Thanks for still remembering us in your prayers, too! God bless you and love to all.

Wednesday, April 26, 2000 at 04:06 PM (CDT)

Hi Everyone. Thanks for being here, it means so much to us, even after 3 weeks. The ache in my heart is lightened somewhat when I read the wonderful notes to us and to Justin. I know he continues to read them all!! God is so fortunate to have such a wonderful angel up there, of course, all of His angels are special. I've been hearing some wonderful stories about Justin at work in the angel department! Thank you for sharing them with us!
I just want to let all of you know about an upcoming event. Tuesday May 23rd, there will be a fundraiser at Haygood Skating Rink to raise money for the college scholarship memorial fund in Justin's name. The scholarship will be awarded to a cancer survivor, and this is something that Justin and I had talked about before he died. He really wanted to help other children with cancer and we thought it would be a great idea to put any left over money after medical expenses into this fund. I never dreamed it would be a memorial to Justin, but I know he would want this to be a success. This night will be an important tribute to Justin. During that same evening, Justin's hockey number 17 will be retired by the Virginia Beach Sharks. What an honor to him! We are hoping for a wonderful turnout! (I will remind everyone about it again later, hope you will all consider sharing the evening with us.)
We have loved hearing from so many of Justin's buddies and look forward to seeing you again. I am asking for you all to please remember another child, Bryan Boyd, a friend of Justin's, who was recently diagnosed with bone cancer, in your thoughts and prayers. He and his family have a difficult journey ahead of them. Please pray for their strength, also. The children at Duke also still need prayers, the road is so long and difficult for them, but God has blessed them with amazing courage. Jasmine has been in and out of the hospital but continues to have problems with fevers. Stephen is having problems with his lungs and is back in the hospital in Delaware. Michael has had some breathing problems. Jenna is doing much better but it has been a very long journey for her. Craig received his new cells today from his brother. Please continue to pray for these children, they are all very special to us.
Hope you are all making it through this nasty cold weather, next week looks much brighter! Love to you all and God bless you.

Monday, April 24, 2000 at 02:36 PM (CDT)

Hi all... wow, we are so touched that you have all continued to check on us and remember us in your thoughts and prayers. Thank you Lord for blessing us with so many wonderful friends. Tomorrow it will be three weeks since Justin got his angel wings. (Over 15,000 people have checked the website in the past 3 weeks! That is amazing!) It has been a very difficult time for all of us, but you all continue to carry us with your prayers. We can never thank you enough for the wonderful support you have given us. We still especially love to read the guestbook entries. Some of them I read and talk to Justin, and I know he is so touched by all of your sweet words to him.
Our family just arrived home this morning. We had a very relaxing, healing, sunny and very special week together, but it was definately obvious that someone very important to us was missing. Oh yes, he was with us in spirit, always in our hearts, but we especially missed hearing the laughter, seeing the smile. We shared many memories and talked about "if Justin was here..." God, we miss him so much. I pray for understanding and strength, and at times I can feel Justin by my side, giving me the strength that he always gave me during the past 6 months. We are so grateful to our nephew TOD for making us feel so special and so loved during the past week! He and his wonderful friends Cindy, Lauren, Leslie, and Captain Harris were all so good to us, and especially to Courtney. But of course, there is no place like home... God bless and love to you all.

Saturday, April 15, 2000 at 05:35 PM (CDT)

It was such a dreary day today, so I won't be able to look for my star tonight. Justin always has been a shining star to me.... I guess the days will get easier over the months and years to come, but right now that is so hard to imagine. He was such a part of me. I am thankful that God allowed me to have a very special 6 months with him. We talked about everything imaginable. Some of Justin's friends would be surprised to know what I know, but I am a good secret keeper!! You are all more dear to me because of the things he shared with me, so when I told you how much he loved you all, I really meant that. It came from HIS heart!
Paul, Courtney, and I would like to take this opportunity to thank all of you again for your constant support and prayers. We feel so fortunate to have been blessed by so many wonderful friends, and we are so proud that you have been touched by Justin. I sincerely hope that you will always remember what Justin's Uncle Ed said at the funeral. To those of you who are already on the National Registry, just think, you could be responsible for saving the life of someone who means as much to their family as Justin does to all of us! I am leaving you with an excerpt from Edwards eulogy... I probably won't be writing for a few days, but please keep leaving notes! They help us get through each day. Thank you all again. God bless you all, and we love you!

Excerpt from Eulogy for Justin April 8, 2000

In this time of anguish, one very kind and considerate question that has continuously been asked of the family is "Is there anything we can do to help?". At first blush, the tendency is to answer "Thank you, outside of your prayers, we really cant think of anything more that you can do". But looking at this crowd, and knowing the way this community has come together in support of Justin and the Thatcher family, perhaps Justin has provided us with another answer to that question: "There is more we can all do"!

Among those of us here at St. Gregorys, at least among the adult population, Im sure that there is a very high proportion of the audience that has been tested for the National Marrow Donor Program, far disproportionate in relation to nationwide statistics. That is a wonderful tribute to Justin in itself, yet the fact islets say for those of us over "30"our time on the National Registry will run its course as we each turn 60 years of age. To you adults here, not in the Program or on the Registry, we urge you to do so.

But what I really would like to do today is convey my message to the young people in attendance: Justins many wonderful friendshis neighbors, his classmates, teammates, and friends who have come to know him through so many different ways, including his webpage and guestbook. Those of you in your mid-teens already know quite well of certain "Rights of Passage" so to speak that will come your way as you attain different age levelsDrivers License at 16 for example, and those of you who are clever already know of some other privileges that will accrue to you when you turn 18 or 21 years of age.

I ask that you seriously consider adding a new "Right of Passage" to your own list for the years ahead, one that can honor Justin Thatcher. Just as you saw Justins extended family bring our "Gifts" up to the altar as a part of this funeral mass, so too can you bring a "gift" forward in Justins namethe "Gift of Life". When you turn 18 years of age, each of you will be eligible individually to be tested for the National Marrow Donor Program. It will cost you a few dollars, but you will find that process itself far less painful than it was for you to come to church today to mourn the loss of a friend.

A positive aspect of your "Gift of Life", being tested soon after youve turned 18, is that you will then be a part of the National Registry for over 40 years into the future. What a wonderful legacy for Justin, and it is something you easily "can do to help". As you grow in the years to come, as you head off to college, enter the working world, and eventually have a family of your ownremember to encourage your friends and family to also consider the "Gift of Life" by simply being tested themselves.

Today we are here because a "match" could not be found for Justin, yet weve also heard that a local Navy man, tested in one of the many drives for Justin, has recently learned he is the "perfect match" for someone out there in need. We know there are other recipients out there as well, desperately seeking their potential donor match! By being tested once you are eligible at 18, your "Gift of Life" just might save the life of someone elses loved one out thereor perhaps another donor might at sometime in the future be there for someone as close to you as Justin is to all of us, someone you love!

To help you remember this plea, I would like to give you a "visual aid". Think back to last weekend, April 2nd, as we all advanced our clocks forward to "Daylight Savings Time". On April 4th, God advanced Justins clock forward a lifetime! In memory of Justin, and to his legacy in your future "Gift of Life", each year in the Spring as you advance your clocks forward in the countdown to your 18th birthdayI ask that you discard the term "daylight savings time" in favor of a new one: "Justin Time". Perhaps your Gift will be the very one that is "Just In Time" to save a life?

That is our answer to the question of "what you can do"; we can think of no greater tribute in Justins honor than that. Each of you can be the legacy that keeps Justins flame, and Justins smile, alive for the years to come.

Thank you all for being here with us today, and the comfort you have given our family.

Friday, April 14, 2000 at 09:53 PM (CDT)

Hi everyone. It is still so good to read all the notes in the guestbook, thank you for thinking of us so often. We love you all! We especially love reading the notes you leave for Justin, I know he is still reading every one of them! The days are going ok, but there are times that are so hard. I keep waiting for the door to open... It still seems like a dream. I think of him and smile, but I ache, I want him so bad.
I have something really neat to share with you all. Courtney's dance team at school gave us a presentation today. It is the greatest gift! They have had a STAR named after Justin! Now, when you look up the night sky and see the stars, one of them is Justin! The star has been offically named Justin Thatcher, and it is registered in the International Star Registry in Switzerland. We have received a map with the location, it is between the constellations of Pisces and Aries. Someday I will find it, but I will be looking up there every night! Thank you to FC's dance team! You are all great!
I also thought I was going to share some good news...Jasmine (Justin's special friend at Duke) went home this week, but unfortunately she has been readmitted today with fevers. Please continue to pray for her. Also, please pray for little Michael, who is also having a rough time right now. These are both special families to us!
Hope all of you kids have a great spring break! We are spending some family healing time together and hoping to rest and relax, of course all the time doing some star gazing and cloud watching!! Our love to you all, God Bless you...

Wednesday, April 12, 2000 at 09:07 PM (CDT)

And life goes on....though it is difficult at times. We have really enjoyed reading all of the wonderful notes to Justin (and to the rest of us of course)! All of you are so open and talk to him so easily. Doesn't he make a great angel? I love feeling him next to me. When I see his face I ALWAYS smile, and I'm glad that you do, too. I have already asked him for help so many times. It is kind of nice having "connections" with God. I know Justin is watching over everyone he loved and cared for so much, while God is watching over him.
Today was a difficult day, because we traveled down to Durham (my mom went with me) to pack up the apartment and clean everything. It is amazing what can be accumulated in less than 3 months! We will be eternally grateful to the Simon family, they were so generous with us..... That apartment was home to Justin and I and we really looked forward to spending "special time" there together.
We have so enjoyed hearing all of the wonderful stories about Justin, thank you to those who have shared them with us. Courtney and I are searching for all of our favorite pictures of Justin. Every one of them also has a story! The memories will get us through this as well as the strength that God gives us each day.
Please continue to remember all of the other children at Duke who are going through transplants. It is such a difficult journey for all of them, and they really need your prayers. Hope you are all having a good week, and I hope that when you think of Justin, you will smile, and remember what a special person he was! I will love him, with all of my being, forever and ever! And Courtney, I really hope you know and feel that my feelings for you, are just the same. I am so proud of you!! Thanks to all... and God Bless you all.
Love, Susi

Monday, April 10, 2000 at 09:03 PM (CDT)

Hi to everyone that continues to check on us. I have decided that I will continue to keep up the journal every now and then. It is still so comforting to read the notes left in the guestbook. I feel like Justin would want me to continue with it. He thought the website was so neat.
We have been blessed by so many wonderful friends and family members. Everyone has been so helpful to us. The past week has been the most difficult of my life, but God continues to give us strength, as does Justin. He is with me every where I go, I talk to him, tell him my deepest secrets, but boy do I miss touching him. Those baby soft cheeks...he was always so affectionate with me. I just want to hold him and kiss all over his cute little face! Someday I will do that again, and it will be so sweet! Thank you again to all the people who came out to support Justin and our family in some way or another, we will be forever grateful. Now, the crowd has gone and the difficult days really begin. Please continue to keep us in your thoughts and prayers. We thank God for you all!

Saturday, April 08, 2000 at 09:48 PM (CDT)

Words can not describe today. It was so beautiful and I am so proud of what Justin has accomplished in his short life. The TV stations have all had the most beautiful tributes to him. The front page news articles were wonderful. He has touched more hearts, more lives, than I ever will. The funeral was beautiful...and wow, so LARGE! We were told it was the largest ever in Va Beach, but I'm not sure about that, but I was certainly amazed that he made CNN headline news! My pride overwhelms me. I was also so proud of Courtney for getting up in front of nearly 1000 people to share their special prayer. I'm sure Justin gave her the strength to do that! Thank you so much to all of you for the thousands of prayers and good wishes offered to us.
Today, after hearing several beautiful and very touching words from several of Justin's close friends, my hero was laid to rest. The day was perfect, thank you Lord, and thank you my angel for helping us out! We had a wonderful celebration of Justin's life after the funeral, and the severe storms that were coming in this afternoon, drifted away after I prayed to Justin to help us celebrate, and then the sun was stronger and brighter than ever.
We will be ok, because we have a guardian angel now, where ever we may go, and as always, he will be my rock. Thank you to those who shared our day.
Tomorrow you may read about Justin's day at www.pilotonline.com. Please remember to keep praying for the children at Duke! Love to all and God bless you...

Wednesday, April 05, 2000 at 08:56 PM (CDT)

Thank you all so much for the wonderful words of encouragement sent to us and to Jussy. He was such a wonderful person and he has truely left behind a wonderful legacy. He will never be forgotten. God is with him.
We will be spending this week celebrating Justin's life. He touched so many hearts in such a short time. We will welcome visitors at H. D. Oliver Funeral Apartments at 2002 Laskin Rd. Virginia Beach on Thursday from 4-7pm, and Friday from 6-9pm. A mass will be celebrated on Saturday, April 8, at 11am, at St. Gregory's Catholic Church, Virginia Beach Blvd, Virginia Beach. In lieu of flowers, we are asking that donations to be sent to the Robin Hoods of Virginia Beach, P.O. Box 418, Virginia Beach, VA 23458. These donations will be used for the Justin Thatcher Memorial College Scholarship Fund. The scholarship will be awarded to a cancer survivor.
We heard from Justin today, he had a great day playing angel roller hockey, and he says that God is AWESOME! God bless all of you.

Tuesday, April 04, 2000 at 10:22 PM (CDT)

Day +55, Our final day...
IN LOVING MEMORY OF MY DEAR JUSSY...JUSTIN PAUL JOSEPH THATCHER
8/17/1985-4/4/2000

At 2pm this afternoon Justin lost a very long and very courageous battle. He earned his angel wings with dignity, and along the way, he touched the hearts of thousands. I can only guess that God knew that Justin was so special, that he wanted him by His side. I know without a doubt that that is where my Jussy is. We have been so honored and truely blessed to have shared Justin's life for 14 1/2 wonderful years. He will always be remembered for his wonderful, heartwarming, loving smile, his warm personality, his sense of humor, and especially his amazing courage. He was my rock. He was my inspiration.
We can't explain what happened today. His death was sudden and unexpected, and I can only thank God that his suffering was minimal. I know he is in a better place, watching over us from above....my own angel. God truely gave us a gift when He gave us Justin. He will forever be my hero.
Our family will be eternally grateful to the thousands of people who have been here for us; the tremendous outpouring of your love, encouragement, and especially your prayers. Thank you from the bottom of our hearts. We love you all.
Paul, Susi, Courtney, and our special angel, Justin

GOD LOOKED AROUND HIS GARDEN AND FOUND AN EMPTY PLACE. HE THEN LOOKED DOWN UPON THE EARTH AND SAW YOUR TIRED FACE. HE PUT HIS ARMS AROUND YOU AND LIFTED YOU TO REST. GOD'S GARDEN MUST BE BEAUTIFUL, HE ALWAYS TAKES THE BEST. HE KNEW YOU WERE SUFFERING, HE KNEW YOU WERE IN PAIN. HE KNEW YOU WOULD NEVER GET BETTER ON EARTH AGAIN. HE SAW THE ROAD WAS GETTING ROUGH, AND THE HILLS WERE HARD TO CLIMB. SO HE CLOSED YOUR WEARY EYELIDS AND WHISPERED "PEACE BE THINE". IT BROKE OUR HEARTS TO LOSE YOU, BUT YOU DIDN'T GO ALONE, FOR PART OF US WENT WITH YOU THE DAY GOD CALLED YOU HOME.
WE WILL ALWAYS LOVE YOU, JUSTIN.

(Thank you Patrick)

Monday, April 03, 2000 at 11:27 AM (CDT)

CBT day +54

They say...The Good Lord only gives us what we can handle, and last night I was feeling like I had reached my saturation point. We got the final CT report from the scan of his chest. In addition to the large cyst in his lung it showed a small pericardial effusion (fluid around the heart), so they consulted a cardiologist. They did an echocardiogram (ultrasound of the heart) and the good news is that it is very small and they, thank God, feel it will resolve spontaneously. Justin has been restless during the night and his respirations have been very rapid. He does have some congestion in there and he is able to cough up the secretions after his breathing treatments. Today, Dr. Driscoll said that he was surprised to see how good Justin's lungs actually looked except for this cyst, which is more on the back side of his lung. We were warned that as his cells grow, his respiratory status will get worse before it gets better, goes along with that feeling bad to get well. Justin is in the process of getting dialysis right now. This afternoon, he will go to radiology for aspiration of the cyst in his lung. If the fluid is too thick to aspirate with a needle, they will have to insert a chest tube to drain it. He may require a short PICU stay. It all depends on how Justin does. Please pray that the procedure goes well. They have asked Paul to stay in town. If Justin proves to have a bacterial or fungal infection in the lung, they will take white blood cells from Paul and give them to Justin to fight the infection. Paul will have to go to surgery to have a central IV catheter like Justin's inserted in his chest, and they draw off WBC's every other day. He will even get GCSF shots like Justin to increase the amount of WBCs in his body. If there IS an infection, it would explain where Justin's WBCs are going, since they aren't in the blood! Any white cells produced would go right to the site of the infection.
On a positive note, we do have reason to CELLibrate today. Last night Justin's repeat count showed his WBCs to be at .2. TODAY THEY ARE AT .4!!! Praise God, thank you!! Dr. Driscoll thinks Justin is starting to ENGRAFT! He needs these cells more than anything! His ANC today is 52, hemoglobin is 9.2, platelets are 34. They have been giving him lots of extra platelets in preparation for the thoracentesis (chest aspiration) to prevent bleeding problems.
Justin's neurological status is about the same, sometimes better than others. They still tell us that although Justin is very ill, everything he has he can fully recover from, so they must treat him very aggressively. We continue to ask for your prayers that Justin will be healed. Things are looking a bit better today, I guess God knew I had reached my max! Thank you Lord!!! Hope you all have a great Monday, it's half over already!! Bye for now...

Sunday, April 02, 2000 at 09:42 AM (CDT)

CBT day +53

Justin proudly wore his UNC tshirt during the game last night, and despite the loss, he is still a Tarheel fan!
We got the results of the CT scan of the chest last night. Looks like pneumonia is NOT the concern right now, thank God, however Justin has a fluid filled sac in his right lung. They do not know what it is, so today or tomorrow they will have to do a needle aspiration of the fluid so they can identify it. I think normally this is something they would have to do in xray so they could see where they were going, but it didn't show up on the xray, so I'm not sure how they will do it. Please pray that this goes smoothly and that they are able to find out what is wrong. This is in the area where he has complained of pain off and on, but nothing has ever shown up. Justin is also getting an extra dialysis treatment today because his potassium level in his blood is too high, which frequently happens with dialysis patients. Confusion was better last night then gets worse again because he isn't sleeping at all. I am praying so hard for this confusion to all clear. Tomorrow we hope to get results of the LP and bone marrow viral studies. They are looking for anything, but specifically for the HHV6. He is still fighting hard! He is still walking the halls with MUCH encouragement, but he is doing it.
Counts today are not different...WBCs .1. I think they will make a decision this week about what the plan of action is to be for Justin, whether it be more time or plan to retransplant. As I have said before, God knows what is best for Justin and I pray that He gives us the answer we need. Justin is in His hands. Hemoglobin is 8.3. That level is still above transfusion level, but Justin had some hypOtension (low BP) last night (72/44) so they are planning to give him more blood if his pressure drops again. Platelets today are 16 and he continues on the platelet drip. His BUN and creatinine (kidney) are responding well to the dialysis (79 and 2.6 today). Please keep praying for cells to grow!
We hope you are having a great weekend. I am headed back to Duke to be with Justin for the week, I always hate leaving Courtney behind and I am anxiously awaiting family life again!! Sometimes we have to learn the hard way what not to take for granted! God bless you all, thanks for being here to pray for us and cheer us on.

Saturday, April 01, 2000 at 05:10 PM (CST)

CBT day +52

April...hard to believe! Sounds like a good month for HEALING!
Life is never easy in transplant land. Thank you for hanging in there with us through the difficult times. Your prayers and words of encouragement help us to get through each day. Justin is trying so hard, but at times his confusion makes it difficult for him to understand what he needs to do. He still gets more confused at night when it is dark and he SHOULD be sleeping. He was awake most of the night again last night. We still aren't sure why the confusion isn't clearing. Test results on the bone marrow and spinal fluid that were sent to check for the HHV6 virus are still not back. They are now treating him daily with the phoscarnet for that virus, now that he is on dialysis. He had another 3 hours of that today and tolerated it well. Thank you Lord! Dr. Driscoll was in today, and although his xray the other day looked better, they are still concerned about pneumonia. He went to xray today for a CT scan of his chest to get a better picture of his lungs. We haven't gotten results of that yet, but yesterday they added another antibiotic for pneumonia just in case. Hopefully, the agressive walking and sitting in the chair will help. They had a pulmonary doctor come see him today and started some breathing treatments to loosen his secretions in his lungs. Please pray that this doesn't get bad. Justin is pretty weak. He sure doesn't need any more problems.
Counts today are WBCs .1 (SO frustrating!), hemoglobin 8.6, platelets 31. His BUN and creatinine were back up somewhat today but the dialysis will bring them back down. Please continue to pray for the donor cells to grow. The longer Justin is without them, the higher the risk of getting more infections.
Yesterday I took some pictures of Justin and added a new one to the web site. Please check out the photo album. Since the last photo, you can see he has lost all hair again from the radiation, but up close I can see some fine blond eyelashes and eyebrows... otherwise he is shiney and smooth up top!! Convincing him to smile for pictures when he was feeling so wiped out was a challenge, but well worth it! I really hope you are all enjoying your weekend with family. I can't tell you how much I love coming home to see Courtney, but sure do miss the boys when I am home! Love to all and God Bless you.

Friday, March 31, 2000 at 04:45 PM (CST)

CBT day +51

Still fighting, still going strong, NEVER giving up!!! Thank you Lord for another day of very slow improvement. Justin still has so far to go. We still don't know if his donor cells will continue to grow, but Justin is truly an inspiration to watch. Today I really saw some FIGHT in him and I loved it! Last night was another all nighter. Well, awake more than asleep shall we say. His confusion continues to be a problem but yesterday it was definately better after the dialysis. Today he is able to answer questions that he couldn't answer yesterday. First thing this morning he walked a lap in the hall, then he sat in the chair for hours. I was so proud of him. This afternoon he said he would walk again, but when it was time, he tried to litterally sit in the hall by bending his knees and leaning back. Finally by pushing, he proved that he really does have the strength to do it. When he sees his room aproaching, he walks very quickly down the hall! We let him rest for a few minutes this afternoon because he walked to the far end of the hall. Then when he wanted to go back to the room, he was upset to find out he had to walk again to get there! He tried to kick me!! I was thrilled!!! Dr. Szabolcs said his lungs are much better. He will not get dialysis today, tomorrow they will start an every other day routine.
Counts today...WBCs back to .1, not unusual to fluctuate, but hopefully they are still doing their thing. Hemoglobin is 8.8, platelets are 12, BUN and creat are way down! Thank you Lord. Please don't stop praying for those cells to grow!!
Well, TGIF, and I hope you all have a wonderful weekend. I am on my way to the Beach. Pray for Paul to have the strength he needs to get through the weekend!!! Love to you all, and God bless you for thinking of us!

Thursday, March 30, 2000 at 12:09 PM (CST)

CBT day +50

Day 50...wow. I am still praying that we are half way through our stay here, but as far as Justin is concerned, I am here as long as he needs me. He is a great teammate, a real fighter. And of course, Justin has never done things the easy way, I think he must enjoy the challenge! God is answering our prayers, one at a time. I am still convinced that Justin's altered mental status is God's way of allowing Justin to go through the rough times without remembering them. He is not as patient as I am! He wants results right away. And he wants to go home! But as long as he wants to go home, I know he is fighting! His confusion is still no better. At times I think it is worse, and it is very hard to see him like this, but I pray that time will improve things. Please pray for the confusion to clear. I have really been pushing him today. The mention of the words "possible pneumonia" are frightening. We are awaiting the results of a chest xray done a while ago today. This morning we walked Justin already. A short while later I dragged him out of bed and forced him to sit in the chair for about 90 minutes. He is still sleeping a lot now (what a change!) but I am trying to keep him awake in the day time whenever I can. He will be getting dialysis again today and that will make him tired, so the more I can keep him active now, the better it is for him! Sometimes I feel bad for him only because I have not been a sympathetic mom, I am making him do all the things he doesn't want to do, because he needs to do them to get well. Someday he will thank me I hope! I am planning another walk this afternoon and again tonight. He doesn't go too far, but he goes! Thank you Lord for giving him the strength to keep going! I know he is tired.
Counts today...WBCs .2!!! (even before he started the extra GCSF, thank you Lord). His total cell count the other day was 20, today it is 25, very slow, but better! ANC 24, Hemoglobin is 9.6, platelets are 20k. His BUN and creatinine (kidney function) have come down from the dialysis (166 and 3.3 to 136 and 3.1). They have to go slowly on those, today they should come down even more. His dialysis will be for 3 hours today. Please don't stop praying for CELLS!!!!!
Uncle Ed has left to return to Denver. We are more than grateful for his visit and helping hands. Paul will be her tonight so we can spend some time together. Tomorrow I will head for the Beach again to be with Courtney. Hope you are having a super day. Please leave us a note letting us know you were here! Thanks... God bless and love to all!

Wednesday, March 29, 2000 at 08:11 PM (CST)

CBT day +49

Hi everyone, sorry for the delay today. I logged on earlier to update and then suddenly had to tend to my baby, which is my first priority. It's been a busy day for Justin. He had his first dialysis treatment today. It will take awhile to know how it worked, but the important thing is, he tolerated it so well. Some people have a rough time with it. Some patients have problems maintaining their blood pressure during dialysis, but he did super, thank you Lord! His swelling was already so much better this morning, even prior to the dialysis. He finally has knees again and his feet look like feet. He still has some swelling in his ankles but they are much better. He still has quite a bit of confusion, and he has been very drowsy today. I was hoping the dialysis would improve that, but Dr. Szabolcs said that after the first dialysis, the confusion sometimes gets worse first because of the sudden change in his body's chemistries. This afternoon, he did become more alert and said he'd walk for me. Uncle Ed really had his doubts about walking but Justin didn't let me down. Once we convinced him to straighten his knees, he did great. He even smiled when one of the moms told him how handsome he looked (and he did of course!!) Tomorrow they will dialize him again. They are also going to stop some of the drugs Justin is on that could in any way possibly supress his bone marrow. They are going to double the amount of GCSF (granulocyte colony stimulating factor...stimulates the good white cells to grow) that they are giving him to see if that will help his cells to grow also. He is still having the fevers. They decided to hold off on the CT scan for now, since his white cell count is so low, there wouldn't be enough to accumulate to form an abscess right now. I do have some concerns about his right lung, it has been the one to accumulate some fluid and it is a bit congested right now, so walking is more important than ever to prevent pneumonia. We sure don't need any other complications right now, we have more than enough to deal with! As I have said before, Justin is ultimately in God's hands, so please continue to pray for Justin's healing and for cells to grow.
His counts today are WBCs .1, hemoglobin 10.2, platelets 17. His BUN and creatinine are up even higher, but those should be much better tomorrow if the dialysis is doing it's thing.
Please say an extra prayer for Jasmine tonight, she is having some tests tomorrow that will not be easy for her to go through.(www.caringbridge.com/nc/jasmine) Also, remember little Michael, who is 4 and pretransplant going through radiation and just relapsed. On a happier note, Heaven went home yesterday after 2 1/2 weeks! She did wonderful!
Justin and I have greatly enjoyed our visit with my special brother-in-law Edward. He has been great with Justin and has given me some much needed relief during the day. Families are wonderful! Hope you all had a great day. Thank you for checking on us and remembering us so regularly. It means so much to us to know that you all care so much. God bless. Love to all...

Tuesday, March 28, 2000 at 01:38 PM (CST)

CBT day +48

Well, Justin is definately making up for lost time. He has slept...and slept...and slept, thank you Lord! Yesterday he slept from 9am until I woke him at 345pm to take a bath (daily requirement!) and WALK! After finishing both, he promptly fell asleep again and slept all night. This morning we woke him to get ready for surgery. He just returned a short while ago. He had a dialysis catheter inserted in his right chest and now they will wait until tomorrow to actually start dialysis. They also performed a spinal tap while he was under anesthesia. Hopefully, we will have results of that tonight. They are looking for any reason for the fevers which he had again last night. He has not yet had the CT scan, not sure when it will be either. The confusion is still no better, but reguardless, Justin is such a joy to be with. It is so good to see him catching up on his sleep and at the same time, allowing me to sleep at night for the most part.
Found out a short while ago that we are getting a surprise visitor today! Uncle Ed is coming from Denver to help us for a while. Perhaps I will celebrate with a good shower at the apartment and a good meal! Thanks Aunt Joe-Ann for sharing!
Counts today are WBCs .1, hemoglobin 10.3, and platelets were at 16 so he had an additional platelet bolus for surgery, bringing him up to 31. I am thankful that he came through surgery without difficulty, no breathing or bleeding problems, thank God.
Please continue to pray for Justin's healing and for the donor cells to grow. Also, dialysis can be rough to go through, please pray that he is stable and tolerates it well. Remember the other children and their families, and thank you all for your ongoing love and support. God Bless you all. Courtney and Paul, we love you and miss you!

Monday, March 27, 2000 at 11:29 AM (CST)

CBT day +47
Finally, Justin had a good night's sleep last night. When he first drifted off, he sounded terrible! He was restless and moaning and his sleep was anything but restful but today, he is sleeping so peacefully, hopefully catching up on some long lost and much needed zzz's. He was more alert this morning and much more appropriate. Thank God. His swelling is not really better, but no worse. He is still walking in the hall every day. He is such a fighter, so cooperative. He did spike a high fever during the night again last night. Dr. Szabolcs is here this week, and he is concerned about the fever, so, since the cultures are all negative, Justin will be having a CT scan to check for any infection, abcess, etc in his chest or belly. This could explain where WBCs are going, and also explain the fevers, but please pray there is no infection found. Justin's kidneys are having a hard enough time with the antibiotics he is already on. Last night I mentioned the possibility of dialysis. They have decided to go ahead and do this. As I said yesterday, it would allow his kidneys to rest and prevent further damage, hopefully help clear some of the confusion also. They will stop the lasix drip once they start the dialysis. He will have to be on it for a couple of weeks. The actual length of time depends on how Justin responds and how long it takes his cells to grow. The important thing is that it is a temporary measure, he still has function in his kidneys and they feel it will return to normal after he is off the drugs that are so toxic. For dialysis, he will have to go to surgery to have a special catheter placed in his chest. When he is under anesthesia, they will also perform another spinal tap (LP) to see if it shows anything. Still, the most important thing Justin needs right now are CELLS to grow. He has been without them for so long, that he is at a very high risk for any infection. Please continue to pray for those donor cells to grow.
His WBCs today are still .1. They did do a cell count (differential) today, which was 20 (last time it was 5, so they are growing, just very slowly!) His ANC is 25, hemoglobin 10.9 (had 2 units of blood last night), platelets down to 9 (still on the drip and had to get an extra bolus today).
I am praying that the doctors know what is right for Justin. He still has so far to go, but with God's help, we will be at home this summer! Please continue to remember the other children here, also. I think one of the hardest things for these children is being so far away from those they love so much! Coming home will be the very best medicine.
Thank you Lord for another beautiful day. Hope you all get through this monday ok! Until tomorrow, love to all...
Oh, Uncle Bill, this is the closest we could get to Carolina Blue! Go Heels! (Justin's #1 team UNC is in the final 4!)

Sunday, March 26, 2000 at 06:19 PM (CST)

CBT day +46

We are so grateful for another day! Thank you Lord! I am back at Durham and the "boys" have returned to the Beach. It was a great weekend.
I just spent some time talking with "Dr. Mary" (she is one of the Fellows here and she is so wonderful!). I had some concerns when I saw Justin today. His neurological status seems a bit worse and the swelling in his legs and feet is worse. The HHV6 has definately improved acording to the MRI, but the phoscarnet he is getting made his kidney function take a dive today. His BUN jumped way up, which alone, will cause Justin's confusion to increase. The lasix drip has aparently helped the swelling some, but it is still worse than when I saw him last. They are once again seriously thinking about doing some dialysis tomorrow to give his kidneys a break and allow them to rest and be protected from more damage. This would help the swelling, help the confusion, and bring down his BUN and creatinine. Also, Mary explained that sometimes the side effects of the virus last longer than the virus itself. We are still waiting for the bone marrow studies to come back that show if there is HHV6 in the marrow. They will give the donor cells about 2 weeks to recover and see if they start to grow. The HHV6 is known to supress the bone marrow and cell production, but hopefully they will start to grow soon. There is still the possibility, even though he has donor cells, that he may need another transplant. Please, please pray for those cells to grow and for strength so that Justin's body can fight this virus. He is still quite ill, but anything is possible in God's care! We have seen that just by finding donor cells!
Counts today are WBCs .1, hemoglobin 8.2, and platelets 14. His BUN is up to 141 from 108 yesterday. GROW CELLS!!!
I am so thankful to Uncle Joe for coming to help Paul this weekend, you were a Godsend Joe. I know Justin loved having you here, so did Paul. Hope you all had a wonderful weekend. Be thankful for families! God Bless you all...

Saturday, March 25, 2000 at 09:13 AM (CST)

CBT day +45

**NEWS FLASH** **CELLibrate**
Just in case anyone has any question about the power of prayer....
JUSTIN HAS ALL DONOR CELLS IN HIS BONE MARROW!!!
There are very few cells, they did HLA typing on the bone marrow to see what was there because there were so few cells. It came back all donor! I think Dr. Martin was even shocked. We were all prepared to start all over, but now, we just have to wait. As Dr. Martin said, we wait, we nurture, we water, we feed, and wait for them to grow! Thank you Lord. He is a long way from engraftment, but they survived the virus which is so much better. Hoping the confusion continues to get better, but there is still some involvement showing on the MRI. Swelling is still a problem, the lasix doses have helped but today they are starting him on a continuous lasix drip. He has already been up in the hall this morning and had a nice walk, longer than he has done in days. How did you do that Uncle Joe and Dad?? More good news, Justin slept last night!! Thank you thank you Lord! It has been his most restful night in a long time! We are so thankful for Justin's progress! Thank you for praying for us!
Counts are WBCs .1 (but now we know we have something worth waiting for), hemoglobin 9.4, platelets 12, BUN and creat still stable.
I feel like the weight of the world has been lifted off of my shoulders! Please continue to pray for those cells to grow, they are being answered slowly but surely! Hope you all are having a wonderful weekend and God Bless you! Love to all....

Friday, March 24, 2000 at 05:05 PM (CST)

CBT day +44
Just a quick update today, not much has changed at Duke. Justin pulled another one of his "all-nighters"... those of you who know Paul well, know he doesn't do well without his sleep. That's all I'll say about that!
I do want to clarify something. There is NOT a bone marrow match for Justin. The marrow match was for someone else in need of a transplant, the donor was typed at one of the drives we had on Justin's behalf. Thank you God! We are really excited about that. We have also heard of another little boy in Tidewater who needs a bone marrow transplant and has no match. Please check the article in todays Pilot. There are some drives being held for him. Please be tested for him of you are not already on the National Registry. If you were tested for Justin, you ARE already on the National Registry. I know the family would be very greatful.
Justin is about the same today, except that he seems to be retaining more and more fluid. His legs and feet are the worst, but last night he also developed some fluid in his lung again so they had to give him more diuretics for that. Dr. Martin thinks the neuropathy is responsible for the fluid retention. It makes it so hard for Justin to walk, but he still got out there last night and did his best...not far, but he tried, and that's what counts! He is such a fighter!
Counts today are about the same, WBCs .1, hemoglobin 9.8, and platelets 21. BUN and creatinine (kidney) are still stable!
Well, Uncle Joe is on his way down, so the party should begin soon!! Hope everyone has a great weekend. Be thankful for the love of family and friends. Please keep praying! God Bless...

Thursday, March 23, 2000 at 03:12 PM (CST)

A second update for today.... please check the history for the first one.

First of all, I wanted to say that we are thrilled to hear that there was a match found for someone in need of a transplant as a result of one of our drives! Thank you Lord! I hope there are many more to come.
Secondly, we have gotten the results of the MRI. It is showing considerable improvement, thank God. The first MRI showed a great area of involvement around the brain stem which was extremely worrisome to the neurologist. He is quite pleased with the improvement he sees. The hippocampel area still shows some seizure activity which can be treated with more medication. Overall, this is great news. Dr. Martin also looked at the bone marrow and really only saw "clean up cells". He will have to wait for the HLA typing to come back to see it there are really any other cells (Justin's or donor) present at all. If not, they will imediately start treating with the gangcyclovir. They have instituted a new search for a cord blood match for Justin just in case. I had some concerns about retransplanting... I had heard before, that retransplanting is always even less likely to be successful, Dr. Martin assured me that that is only if the body rejected the cord blood, not if it is killed off by disease. That was very reassuring. We should know within the next 4 days... we shall keep you posted, thank you so much for your continued prayers.
I am off to Virginia Beach to help my beautiful daughter get ready for FCs Ring dance on Saturday! It's an all boy weekend here! Love to all...

Thursday, March 23, 2000 at 11:57 AM (CST)

CBT day +43
We have just returned from radiology where Justin had his MRI under general anesthesia and then his bone marrow aspiration was performed right there in the MRI room. He woke up great and was able to be extubated and returned to his room on the PBMTU... thank you Lord! He is now awake and alert, still confused at times, but better than he has been so far. He had another dose of phoscarnet last night, makes me wonder if that's the reason. I'm hoping to get the results of the MRI today sometime. Dr. Martin will look at the bone marrow today in the lab, but he doesn't think he will be able to tell much just from looking, except if there are cells or not. He talked with us last night about the possible results. If the BM shows donor cells, we will have to wait for them to continue growing and continue with the phoscarnet every 3 days or so, as we are doing now, and hope the virus clears. If there are no donor cells, which he now feels is a good possibility, they will begin treating Justin with a drug called gangcyclovir. This is a very strong anti viral drug that can not be used if there are young donor cells, as it will kill them off. Without donor cells, they will treat Justin with this for about 2 weeks and then retransplant. I'm not sure what is the best thing to pray for right now. I don't know if it is better to treat the virus head-on and start all over or continue the way we are, but it is out of my hands and I'm sure God knows what is best for Justin, and that's the way it will be. Whatever the outcome, we will be here for him. It is very hard thinking about starting over again, especially when our first 4 insurance claims from Duke have been returned as rejected for payment!!! So comforting... but Justin is certainly worth whatever the cost may be.
Yesterday afternoon, they did some counts on Justin and his WBCs were at .2. I hate the teasing! His counts today are WBCs .1, hemoglobin 8.5, platelets 19. His BUN and creatinine are staying pretty stable, thank God.
Please pray for Justin's healing, remembering that God knows what is best for Justin. Continue to remember the other children. Jasmine is doing better each day but still having some pain. Jordan had her surgery and is doing well, but has a long way to go. A couple other children had transplants this week and are doing great so far. Jenna is at home but still having trouble with nausea and vomiting. Please keep these children and all of the other children on the unit and recovering at home in your prayers. It is such a difficult journey for these children and their families, even those who have smooth sailing.
God bless all of you, hug your kids for me!

Wednesday, March 22, 2000 at 06:05 PM (CST)

Just to let you all know, the MRI never happened today, anesthesia and MRI couldn't seem to work out a schedule together... my only complaints about this great hospital so far has been with anesthesia. Hopefully tomorrow will go a bit easier. They are now trying to see if they can work out for the MRI and bone marrow aspiration to be done back to back so Justin only has to have the anesthesia one time. That will be a miracle in itself if it works out. Pray for a successful day tomorrow and for CELLS!!!
Check history for the original update today. Hope you all had a good day.

Wednesday, March 22, 2000 at 11:25 AM (CST)

CBT day +42
Hi everyone, thought I would update quickly before we head off to have the MRI done. They have decided that Justin will in fact need general anesthesia to have the MRI done, which because of his mental status, they will intubate him and place him on a ventilator for the procedure. This could mean another quick tour of PICU, but I pray that they will be able to wake him easily and extubate him right after the MRI. Please pray that this goes well and that Justin will be able to return to his room. Justin's confusion is really no better, so I am anxious to get the results of this test. Justin can tell us the most wonderful stories during the day of things he thinks have happened. Sometimes he really seems lucid, other times he is totally goofy. They have not yet given him another dose of the phoscarnate, which he really needs, but there is too much concern over his renal status. Today he is still gaining fluid weight and his feet are pretty puffy. He also has a little bit of congestion in his lungs, so he is getting some lasix (diuretic) today to help get rid of that. He was awake most of the night again last night so right now he is enjoying a snooze in his "hot tub"!!
Counts today are WBCs .1 again, hemoglobin is 8.9 (he is holding this much better now, thank you Lord), and platelets are down a bit to 15 despite the drip. Sometimes they can build up sort of like a tolerance to the platelets, pray this doesn't happen. Please don't stop praying for those donor cells to grow... hopefully they are just all going to fight this virus for the time being.
I will try to find time to update again later if I am able to get any MRI results, and let you know how Justin did. Hope this is a good day for you ... God bless you all.

Tuesday, March 21, 2000 at 01:35 PM (CST)

CBT day +41
Hi Everyone. Justin and I are sitting here watching a movie and he is also playing with his Gameboy. That is what keeps him busy these days. He isn't feeling well today, sort of achy all over. We had another long night last night. Despite my efforts to keep him awake all day yesterday (except for a short hour long nap) he was still awake most of the night. This morning he slept for about an hour :( but at least that is better than none. I just feel that his confusion will never clear if he isn't able to get the rest he needs.
Yesterday Dr. Martin talked to me again about the possibility of doing dialysis to protect his kidneys to give him the phoscarnate for the HHV6. Today they decided against that because his kidney function is looking a little better each day. They are hoping to give him another dose of that medication today. He also got his IVIG (immune globulin) to help his immune system. They are planning to repeat the MRI of his head (pray that he can lay still so he doesn't have to be intubated again!) today or tomorrow to see if the swelling and inflammation in his brain are any better. The bone marrow aspiration will be done thursday instead of tomorrow. They will have to send the specimen away to the cord blood bank in NYC where Justin's cord blood came from for testing to see if he has Justin cells or donor cells. We will be praying so hard for donor cells. They will also be looking to see if the HHV6 has invaded his bone marrow which could be inhibiting cell growth. It will take at least a week to get the results they need.
Counts today are WBCs .1, hemoglobin 9.1 (he has maintained that and he is no longer losing blood through his GI tract, thank you God) and his platelets are 24. He is also still on the platelet drip.
Please pray for a restful night tonight and for donor cells to grow. It is so frustrating. I am just so proud of Justin's will power and strength. He is looking forward to seeing dad again, it will be another boy's weekend with Uncle Joe tagging along! Hopefully it will go well! Hope you all have a great tuesday. Until tomorrow...

Monday, March 20, 2000 at 02:18 PM (CST)

CBT day +40
Forty days post transplant...wow. We were hoping to be about ready for discharge by this point, but I guess the Good Lord has different plans for us. Yesterday when I returned from the Beach, I really thought Justin had "slipped" a bit, neurologically. I guess 2 steps forward, 1 step back is OK, but not really what I want to see! Yesterday they gave Justin another dose of the phoscarnate for the HHV6 and I really think it made a difference. Justin was awake again all night, and I'm sure that doesn't help the confusion, but I think today he is better than yesterday and back to the way he was when I left. I have tried to keep him awake all day in hopes of him getting a good nights sleep, but I have failed and as I write this, he is sleeping peacefully! I guess the exercise exhausted him. We walked to the end of the hall where there is a stationary bike and he actually got on it and peddled for a short time. He has some swelling in his feet right now, which is not unusual, but the skin is so tight that it is hard for him to walk. I think the pins and needles feeling is better in his arms and back, but legs are still pretty touchy. He had a fever today of 104... can't seem to find the cause of that but, thank God, it came down to 101 without even getting tylenol. I keep reminding myself that fevers and bone pain, which I think he has also, are good things to have if cells are growing. Still, it is so hard to see him having such a hard time.
Counts today are WBCs .1 AGAIN (patience, patience), hemoglobin is 9.2, platelets are 25. His BUN and creatinine (kidney function) came down more even with him getting that toxic phoscarnate, and his bilirubin (liver) is almost down to normal! Thank you God! Dr. Martin is here again this week and I have been waiting for him to come see Justin but he had an emergency with another one of the children. Things can change so fast with these kids. Some of them do wonderfully well and it is great to see that, but every child's experience is so different. As I have said before some children have such hard times, but ALL of them need prayers, so thank you for remembering them. Jasmine is feeling much better today. I love hearing good things like that!! She has so much faith for such a young child! Please pray for the Hayes family who lost their 11 year old son this past weekend after a long, brave, and difficult fight. All of the children are in God's hands, although it is sometimes hard to understand His plan for each of them.
Well, I know Mondays can be rough, but it is almost over now. I think getting out of bed is the hardest part, once that's accomplished, it isn't always so bad! Love to you all...

Sunday, March 19, 2000 at 05:37 PM (CST)

CBT day +39
The weekend has gone by so quickly...although Paul may argue that point. I slept well, while he has been awake most of the weekend with Justin. Justin's sleep pattern is still not right. He is awake most of the night, which gets him more confused, and then he cat naps off and on all day long. Not very restful, I'm sure. Courtney came to spend some time with him, and he elected to sleep most of the time she was here! I know tomorrow he will be asking for her again. She was a bit disappointed and it was very hard for her to see him like he is. I was very proud of how well she dealt with it though. Justin is still so weak and his speech is sometimes not very clear. I am so glad Courtney waited until this week and didn't see him last weekend at his worst. He is still in pain, but I think maybe it is slightly better, thank you Lord. I was able to touch him and he didn't yell, didn't even pull away. He says it still hurts pretty bad. His skin looks great. It is really so much better than before. Paul and Courtney have headed back to the Beach and soon I will try to get some rest...you know, sleep when he sleeps! Take advantage of every minute! Justin has also been running some high fevers for the past few days. Fortunately all of his cultures have come back negative, thank you God! Sometimes they get fevers when cells are growing so JUST MAYBE WE WILL HAVE CELLS SOON!!! I am praying so hard for that...
Counts today aren't anything to get excited about. His WBCs are still .1 and everything else is stable. Hemoglobin is 10.6 and platelets are 35. His kidney labs (BUN and Creatinine) are so much improved today. They were even able to restart the Phoscarnate, which is the drug he needs for the virus in his brain. It is extremely toxic to the kidneys so he may only be able to get a couple of doses before they have to stop it again, but that's better than not getting it at all. Still waiting for the cob webs to clear upstairs and hopefully this medication will help.
We have had people asking again about visiting. Justin is only supposed to have family visit him while he is on the BMT unit. He wants to have some of his buddies come see him, but they strongly discourage school age kids from visiting except for family. They are so many bugs going around the schools. Please understand that it could be dangerous for the patients here. Justin asks me every day about going home. He wants out of here so bad...we just need CELLS TO GROW!!! Please don't stop praying, anything is possible and God is on our side!
Hope you all had a wonderful weekend with your families, and I hope you treasured every minute of your time together! I did! God Bless....

Saturday, March 18, 2000 at 04:55 PM (CST)

CBT day +38
Hope everyone is having a good weekend. I have come home to the Beach to bring Courtney to Duke, Justin wants to see her so bad, it will be good for all of us to be together. Justin is still trying so hard. Yesterday he spent more time in his "hot tub" and was really able to relax in there. He would stay in the tub all day if he could! He walked the halls again last night and this morning, and dad is planning another trip this afternoon. He is still so weak because of the pain. He has also been complaining of abdominal pain today, hopefully it is just from the infection in his bowel and should be better soon. His confusion is slightly better than yesterday, I think the sleep must have helped some.
His counts today are WBCs .1, no ANC, hemoglobin 7.6 (2 more units of blood given, but it did not fall as much today as it has been during the week!), platelets are at 35. Kidney function continues to improve, BUN and creatinine are both down a little more. I am getting anxious for these cells to start growing. My prayer for today is for patience....I know the cells will grow when it is the right time, but it is so hard to wait. I feel like I am praying for so many different things, sure hope the Lord doesn't think I ask for too much, but I'm sure He realizes just how much I love Justin!! Please continue to pray for cells to grow, and remember all of the other children with their special needs. Although this has been a very difficult and challenging experience for our family, we have also been blessed with some wonderful new friendships with folks that have a very common bond. I guess there is some good in all things. God Bless you all...

Friday, March 17, 2000 at 01:09 PM (CST)

CBT day +37
HAPPY ST. PATRICK'S DAY! We seem to be spending all the holidays in the hospital, but that will just make them that much more exciting next year! Hoping that we get a little luck of the Irish coming this way soon.
There isn't really anything new to report on Justin today. The doctors are relatively pleased with how he is progressing. Today he was more confused and completely disoriented, but it was another "all-nighter" here at Duke for Justin and I, so hopefully, that explains that. He took a nap this morning (3 hours in the tub!) and was much better, but still confused when he woke up. It is so hard to be patient, and I am constantly praying for God to give me the strength I need. Thanks for the extra prayers in that department, we (Paul and I both) need all we can get! Justin is anxiously awaiting for Daddy to arrive here, he has really missed him this week. I am anxious for Paul to see the progress Justin has made in his strength. Don't know yet if I will go to the Beach tonight, some family time here would be nice, too. Justin walked again yesterday, and we will again today, but boy is that a fight! His legs hurt so bad (the pins and needles feeling), that walking is quite a chore for him. I am thankful that he probably won't remember the pain, thanks to the confusion. I guess that is how God works, and in His time, He will make Justin well. I have complete confidence in the doctors and nursing staff here, they have been wonderful, and so reassuring. They spend all the time with us that we need and answer all of our questions.
We are still praying for cells. WBCs today are still .1, no ANC, hemoglobin is 8.7, and platelets are 36k. His BUN and creatinine (kidney) are down today. We are hoping that they come down enough to put him back on the antivirus drug he needs for the HHV6 in his brain. They had to stop it when those levels jumped up too high. His bilirubin (liver) is way down now, thank God. All of these drugs are so hard on Justin's body and these organs have already been through so much with chemo and radiation. Please continue to pray for healthy donor cells to grow!
Thank you to those of you who checked out the other web pages I included a couple days ago, and thank you for writing to them and including them in your prayers. Every child up here has many needs, thank you for remembering that.
Hope you are all blessed with a great weekend. Try to stay away from green beer tonight! Be careful if you go out to celebrate the day. And please don't forget to tell your children how special they are and how much you love them. Oh, by the way, the new background is Justin's pick! He loves hot pink, anyone at school remember his lunch box? How many GUYS get away with carrying a hot pink lunch box!!?
Bye for now...

Thursday, March 16, 2000 at 12:32 PM (CST)

CBT day +36
I really enjoyed watching Justin yesterday. He can be the most entertaining person at times. He really tried hard to convince me that we went out for dinner, so I really didn't need to fix him anything else to eat...just an example of his confusion. Dr. Howrey told me it may take several weeks for the confusion to clear. Justin spent some time on the computer yesterday. I would love to read some of what he wrote...may have been very interresting reading material. I hope he didn't say anything wrong. He really misses talking to his friends, he talks about them all the time.
I asked Dr. Howrey about the possibility of a failed transplant due to the virus. He is more optomistic than the infectious disease doctor was. He is hopeful that his cell count was still too low to be affected by the virus. Time will tell, and in the mean time we will keep praying for engraftment! God can do anything!!!
Justin spent hours~~literally hours~~in the tub yesterday. Soaking in the hot water seems to be the only thing that helps the pins and needles feeling in his arms and legs. Also, the water has removed a lot of the dead skin from the rash he had. His skin looks SO much better today. Last night, Justin was wiped out, but he is such a fighter. He put on his mask and we ventured out into the hallway for the first time in about 2 weeks. He didn't go very far but we set a goal and he reached it! He was exhausted, but I was so proud of him. He is awesome! I thank God for giving him the strength to walk again.
Counts today are WBCs .1 again, no ANC, hemoglobin dropped way down to 6.2 (2 units of blood given today), and platelets are 39. His BUN and creat (kidney) are still up but stabilized again, thank God. Please continue to pray for healthy donor cells to grow and for engraftment to take place. He is scheduled tenatively for a bone marrow aspiration on day 42, next wednesday. I pray we will see donor cells!!!
Hope you have a great thursday. Just think, tomorrow is friday already! Oh, a special thanks to all of you who have sent cards, packages, and good wishes to Justin. He has loved getting them!
Courtney and Paul, we miss you and love you!!
Until tomorrow....

Wednesday, March 15, 2000 at 02:27 PM (CST)

CBT day +35
Justin seems to be getting a little stronger each day. It is easier for him to get in and out of the bed, although sometimes that can be scary when he tries to get out of bed when I turn my head for a minute. He is still pretty weak and really needs some help. The confusion has not really improved. He doesn't remember something he was just told a few minutes previously. Well, today the infectious disease doctor came in to see Justin, pleased with his progress, but left me with an "oh, by the way...did you know" and proceded to tell me that this particular virus that Justin has in his brain (HHV6) can cause his graft to fail. Of course, there is always a possibility that the graft can fail, meaning the transplant doesn't take, but it is something we will just have to wait to find out. Even if the few cells that are growing now are donor cells, their further growth could be effected by the virus. I am really asking for some prayers here. Please pray the God allows Justin to engraft. He has come so far and done so well. I am not sure my heart could take a failed transplant. As this is only a possibility, we are keeping optomistic. Justin is in God's hands and hopefully our prayers will be answered soon. Justin is still so amazing. Every single day, the love that I have for my children grows stronger and stronger.
Justin's WBCs are .1 again today, no cell count done to calc an ANC, hemoglobin is 8.2 and platelets are 16. He is still on the platelet drip and will probably need blood tomorrow. His BUN and creatinine (kidney) are up again, so once againthey have been forced to change medications that are so hard on the kidneys. His pancreas enzymes are back to normal again, thank God, and he is eating with no problems. Justin has also had some bleeding in his GI tract but this could just be from the infection in his bowel. The infection itself is caused from antibiotics killing the normal bacteria that lives there...a catch 22. His skin is looking much better, too, but it is still very painful and very sensitive to touch. We are so thankful for the progress Justin has made. Please, please continue praying for healthy donor cells to GROW.
It's a beautiful day here in Durham (at least from our window). I hope you all are able to enjoy it! Love to all...

Tuesday, March 14, 2000 at 03:17 PM (CST)

CBT day +34
Thank you Lord for another good day. Thank you all for your prayers. We continue to see some progress in Justin, but it is slow. He is having so much pain from the neuropathy... he says it feels like needles in his legs. His skin is so dry and cracked. It is hard to see him hurting like this. The neurologist seems to think that starting him on some B vitamins and thiamine will help the sensitivity. It is hard for Justin to move, but he tries, and he is determined to be independent. His strength and determination are amazing. Thank you God! He walked a little in the room today. He ate some pizza for lunch. He has played with his gameboy. But he is still confused. He can't remember what happened 5 minutes ago. Sometimes he can't remember where he is. He can't remember that he needs help. It will take some time for the virus to clear from his brain. He makes some "off the wall" comments! But he has that beautiful smile and he is here with us!! Overall, he is SO MUCH BETTER compared to last week, thank God!! Justin's blood pressure has been better. He has been on a continuous IV medication now for about a week to keep it under controll. Tomorrow they are planning to try to wean it off and start him on oral medication again. He is also on a continuous IV insulin drip to keep his blood sugars down. The high dose steroids make his sugars high, so he will stay on the insulin for now. He has also been started on 2 new antibiotics. One was for a fever he had during the night and the other is for an infection in his bowel. Both of these are faily common problems and not completely unexpected.
Now, time to CELLibrate!!! Justin's WBCs are .2 again today!! Thank you God, more prayers answered! They did not run a cell count so there is no calculated ANC but I'm sure he has one! His hemoglobin was 9.8 and his platelet count was 39k. Please pray that healthy DONOR cells will be growing like crazy this week!
We have been so fortunate to meet so many wonderful families here at Duke. The children are all terrific and they are all so strong to endur so much. I am including some more web pages below for some of the other children. You can see that each child's journey is so different. Justin's experience has been easy compared to what some of these children have gone through. Please remember all of these children in your prayers, they are all special.
Hope you are all having a great week. Thank you for being so optomistic and encouraging to us during the hard times, and thank you for always remembering us in your prayers. Please leave a note for Justin in the guestbook!

www.caringbridge.com/nc/jasmine doing better, thank God!
www.caringbridge.com/page/jordanthomas brother & sister, jordan is supposed to have surgery tomorrow and needs extra prayers!
www.caringbridge.com/page/stephenspage home and doing great!
www.caringbridge.com/page/jennaswebsite she has had a rough time, but she's home again! Thank God!
www.caringbridge.com/nj/pgspage doing great, home next week!

God Bless...

Monday, March 13, 2000 at 04:57 PM (CST)

CBT day +33
Today was not too bad for a monday! I have been so relieved by Justin's progress. I know he has a long way to go just to get back to where he was a week ago, but he is awake and talking to me and I have even seen that smile once or twice. (That alone has made me smile all day long!) Justin continues to be confused at times. He is sure that people are here visiting him or that he is one place or another but this too shall pass! We still can't leave him alone. He wants to do things for himself not realizing that he can't do it! He was up in the chair for awhile today and managed to walk into the bathroom to get into the tub for awhile, but that really drained him. He is still having a lot of pain. Every nerve ending in his body is super sensitive to touch and he about jumps off the bed when someone touches the bed, the covers, or him. His skin is raw on his wrists, elbows, and ankles. He is still extremely weak. I was thrilled today when he told me he was hungry! I fixed him some food and he ate most of it, the first he's had to eat for 2-3 weeks.
Everyone that comes into the room is amazed at Justin's progress. Of course, I must have looked pretty bad last week, too, based on the comments I have gotten on how much better I look!! I am just so thankful that we have been blessed and our prayers have been answered. Please don't stop praying for Justin's continued healing!
His counts today are WBCs .1, ANC 50 (not much, but a start...he will be officially engrafted when his ANC is 500 for 3 days in a row) , hemoglobin is 12.0, and platelets are 31. I am so hopeful that cells will be growing this week, that is what I am praying for! His BUN and creatinine (kidney) are coming down slowly. They have made so many changes in Justin's medications. They have stopped the cyclosporin (antirejection) thinking that it probably caused the seizures. They are now using a similar drug FK506, that is much easier on his body. He is on 4 different antibiotics, 2 antivirals, and an antifungal...to name a FEW of his medications!! No wonder he is so goofy!!
Well, hope you all had a good monday. Thanks for checking on us and thank you for your prayers... what more could we ask for! Until tomorrow... God Bless you all!

Sunday, March 12, 2000 at 06:40 PM (CST)

CBT day +32
For years I have affectionately referred to Justin as my problem child...ear infections with 5 sets of tubes, ALL with 3 years of chemotherapy, asthma with multiple hospitalizations, and now all of this. Years ago, when Paul and I were contemplating having another child, we lovingly said, "oh no, what if we have another Justin!!" I would gladly take a dozen Justins, he is worth every second of worry he has given me, and he is turning into such a wonderful young man. I am so proud of him. When he is in so much pain, he still remembers to say thank you when his nurse helps him move around in the bed. He is really doing SO MUCH better tonight. I thank all of you for the prayers, they are working!! Thank you God!
Today I returned from the Beach and I was so pleased to see how Justin has progressed. He is still very ill and has a long way to go. He can't be left alone and he is extremely weak. He needs help with everything now. He is really wiped out. Some of the DNA test results have come back from the spinal fluid. They show that Justin has a virus in his brain. It is called HHV6 or parvovirus (yes, like the one you get your dog immunized against!). He does NOT have menningitis, thank you God, but they do think he is also having hippocampal seizures. These are the seizures I explained earlier. These are treated with medication for about 6 months, or while he is on the anti GVH (graft vs. host) medication. He is currently on the correct medication to treat the virus and he is much more alert and more appropriate. He is still confused at times. His skin is looking better, the bleeding in his mouth and from the blistered areas has stopped. Please continue to pray for him to keep improving and pray for strength! Hopefully soon he will be strong enough that we can start exercising his legs so he can be up walking again soon.
His counts today are ok. His WBCs are .1, hemoglobin was 8.1, then 7.8 at noon, so he had 2 units of blood. His platelet count is 36 today and he is still getting a continuous platelet drip. I pray that we will see more cells this week!! His BUN and creat (kidney function) are improving. Yesterday they did another ultrasound of his abdomen and his pancreas and liver look good. We are so grateful for this news. I know we have had tremendous help from the powerful helping hands "upstairs"!!
Paul did great with Justin after a rough friday night. I had a great weekend with Courtney, though much too short. I hope you all had a great weekend, and once again, thank you for your unending support and prayers. Bye for now...

Saturday, March 11, 2000 at 04:10 PM (CST)

CBT day +31
Sometimes it is so hard to know the right words to say to all of you who care so much. How can we ever begin to thank the thousands of you who have prayed with us, cried with us, and rejoiced with us. Knowing that so many people care about what happens to Justin is a great source of strength for us. Please continue to remember Justin in your prayers always, but especially through this difficult time. God has certainly blessed our family with wonderful support.
Justin is "hanging tough". He is such a fighter and I am so tremendously proud of both of my children for how well they are dealing with this situation. I returned to the Beach late last night. It was a very difficult decision to make, but I know Justin is in the best hands possible. I have been praying for Paul's strength to be with Justin. It is never easy for a parent to see their child feeling so badly, but I constantly remind myself that Justin will never remember this difficult time thanks to his memory loss and confusion, thank God, so it is actually a blessing. He is about the same today. I talked to him on the phone and he was able to answer my questions and ask about Courtney. He has been very restless and sometimes aggitated so they finally gave him something to relax him a bit and hopefully he will be more comfortable. Sometimes he is better than other times, but I think it is just because he gets so tired. We still don't know any results from the tests that tell us if this is actually meningitis of some type or just a CNS reaction to drugs. The spinal fluid had to be sent out for DNA testing to identify whatever may be growing and it could take a week or longer to get results back. I am praying that he will be much better by then! His skin has become so dry and broken down despite all of the lotions and ointments. He has developed several blisters as well. We were warned that this could happen also.
His labs are WBCs .1 again. We expect it to bounce up and down several days before it goes up to stay. His hemoglobin took a tremendous fall today which was frightening at first. It dropped from 12.2 down to 6.4. This could be a sign of bleeding, but they have reached the conclusion that yesterday's was not accurate, because it had increased without getting blood. If he was "dry" meaning a bit dehydrated, it would give a higher reading like that. Anyway, he received a few units of blood today so hopefully we will see an improvement in that tomorrow. His platelet count is at 42k and he continues to be on the platelet drip. He really needs to keep getting the platelets because he bleeds so easily. His mouth is always bleeding from cracked lips and today he was bleeding from a blistered area on his knee that popped. His BUN and creatinine seem to have stablized somewhat. The medications are all so hard on the kidneys or liver, but they are so necessary. Please continue to pray for healthy DONOR cells to grow and for his liver and kidney labs to come back down to normal.
Hope you all are having a wonderful weekend. Take advantage of every minute you can spend with your children!!! God Bless you all!

Friday, March 10, 2000 at 03:07 PM (CST)

CBT day +30
"IF YOU LOOK TO THE SUNSHINE, YOU CANNOT SEE THE SHADOW", so...we are keeping optomistic knowing that Justin is in God's hands. It has been such a hard time for our family. The news we had last night was very difficult for us. Paul is here and he is having a rough time seeing Justin so ill. I pray that God gives him the strength he needs to take care of Justin tonight so I can leave and go to Courtney. The doctors have advised me to get away and feel that Justin is stable enough for me to leave. We did have some very good news today. Our prayers are being answered. The spinal fluid from the LP showed no WBCs which means that Justin does NOT have leukemia in his CNS. Thank you God. Dr. Lewis (neurology) was pleasantly surprised to see Justin's improved state today. He is more alert and has been able to talk some, although he is still pretty confused. Dr. Martin is very hopeful that this still could be a CNS reaction to drugs. He is very reassuring. Dr. Fischer (infectious disease) came in a few minutes ago. This is the first he has seen Justin. He said that after reviewing his labs and MRI, he felt this was a viral or bacterial menengitis, but upon examining him, he says he LOOKS more like someone having a CNS reaction to a drug!! This would be a gift from God!!! Please keep praying that Justin can overcome this setback.
On top of everything, we do have reason to CELLibrate! Justin's WBCs today are .2!!! They did not do a cell count today so there is no ANC calculated. His hemoglobin is 12.1 and his platelet count is 22. Lots of healthy WBCs would sure help any infectious process going on. Please don't stop praying for healthy white donor cells to grow, and please keep remembering the other children and there families. I have added a website for Jasmine below.
Please remember that each day is a gift, as are our children, and be grateful for them. Hope you all have a wonderful weekend. I will keep you posted on Justin's progress. Thank you again for your generous love and support. I thank God for all of you.

www.caringbridge.com/nc/jasmine

Thursday, March 09, 2000 at 07:39 PM (CST)

CBT day +29
I'm sorry that I am so late in updating, but we have had a very busy day here. I know the Lord is really testing my faith now and I am praying that He keeps Justin in His hands and carries him through this difficult time. The night for Justin was about the same. He did rest a bit and his neurological status has not changed. He continues to be confused. Sometimes he seems to be aggitated, other times he is quiet. Today we went to radiology for the 3rd attempt at the MRI. This time they had the anesthesiologist there and he put him to sleep for the procedure so they could get a good scan. Because he is not very alert, they had to put a breathing tube in him and he was on the ventilator for awhile, which sent us on a tour of the PICU. Justin woke up well from the anesthesia and therefor they were able to get the breathing tube out right away and we were able to return to his room on the transplant unit. Thank God for that. Dr. Martin and the neurologist were here a bit ago to discuss the results of the MRI. It appears the Justin has an inflammation of the lining of the brain. This could mean a couple of things. First of all, it rules out the seizure theory. It could mean that he has an infection, or it could mean a return of the leukemia in the CNS (central nervous system). They do NOT think it is the leukemia back. They feel that he has an infection, but they aren't sure what it is. It could be a viral, bacterial, or fungal infection. They just finished performing another LP (spinal tap) to find out exactly what is there. The LP done the other day didn't show the infection but hopefully he now has more white cells so they can find out the problem. I am asking for you all to PLEASE pray. Please pray that the doctors are able to find out exactly what's wrong and they will know how to treat it. Please pray that Justin has the strength to keep fighting this. This is very serious, but he can definately recover from this if they can find out what's there and treat it. I know that God will answer our prayers and Justin is in His hands now. We are taking things one day at a time.
His WBCs today are still .1 and his other labs are about the same.
Please remember all of the other children here when you pray for Justin. We need your support more than ever, and we are very grateful for all of you.

Wednesday, March 08, 2000 at 02:44 PM (CST)

CBT day +28
I did say it would be a rough road, but boy those first couple of weeks were sure misleading!!
Well, we have good news and bad news. The good news is that Justin finally slept last night, however it was a drug induced sleep and was very restless. He tossed and turned all night to go along with the moaning and talking in his sleep. The EEG electrodes lasted until 3AM when he ripped them off in about 2 seconds, or quicker than the nurse could grab his hands. The EEG that the neurologist had seen up to that point was normal. Unfortunately, I just found out that they want to repeat the 24 hour EEG which is very upsetting to me because it was so hard on Justin. The LP (spinal tap) was normal. The bad news is that due to Justin's activity level, they have been unable to complete the MRI repeat and the PET scan, therefore, we still don't know what is going on. He has to hold perfectly still for both of these tests. They are now planning to do them under anesthesia. He is still so confused and thanks to the meds they used to get him to sleep last night, he is even a bit more difficult today. They have mentioned the possibility of using a different type of drug (versed drip) to keep him out until these spasms are under controll. His sleep would be much more restfull. If they use this particular drug, he will have to be moved to the PICU (pediatric ICU), as they are not allowed to use this drug on this unit. The patient has to watched more closely. Fortunately, Dr. Martin said he will never remember any of this later on. Please pray that Justin's great personality shines through again soon.
His labs today are WBCs .1, ANC 0, hemoglobin 8.0 (he earned another 2 units of blood for that, which is going now), and his platelets are up to 47 (great! thanks to the platelet drip!!). His BUN and creatinine (kidney function) have started to climb back up again so they will be asking a renal (kidney) specialist to see Justin. It is not unheard of for these children to require a few dialysis treatments to clear the chemotherapy and other drugs from the kidneys, so they can start to function normally again. It was mentioned, but they said Justin is not at that point presently. Hopefully those levels will go back down on their own. His liver function tests are up again also, as well as his pancreatic enzymes. Please pray that these levels all return to normal soon. I need Justin to be much better so I will feel comfortable leaving for the weekend to see Courtney. Paul will be here Thursday, and I know it will be hard on him to see Justin like this, as it is for me. I have never had to endure anything so difficult in my life. Just imagine what it must be like for these children. On the other hand, I am thankful to God for another beautiful day, and Justin is here with us!! We are so grateful. Please keep praying for Justin.

Tuesday, March 07, 2000 at 05:28 PM (CST)

CBT day +27

TWICE I have just written a journal entry and lost it prior to entering it! I'll try one more time!
It's been another long day here. AGAIN, Justin was awake all night long. He never even dozed for a few minutes! I am exhausted just watching him. Last night at midnight, we ended up in radiology having an MRI of the head done. He has now also had a CT of the head and a spinal tap. The CT was NEGATIVE, thank you God!! The results of the MRI were inconclusive due to movement. Justin couldn't lay still long enough, despite the drugs they used to try to sedate him. The area that had a question about it on the MRI, will show up on the PET scan, which hasn't been done yet. He had a lab value that was too high and would effect the results of the test. It will be rescheduled for tomorrow. Justin is currently having a 24 hour EEG done to monitor his brain waves during these "spasms". The night should be interresting as we try to keep these mini-electrodes all over his head. He has already tried many times to pull them off! I haven't gotten results from the spinal tap either, but hopefully by tomorrow, we will know definately what is going on. Dr. Martin still feels like we are dealing with this seizure thing that I mentioned yesterday, which would be good, since it is treatable with medication and is only temporary. He has several of the symptoms including insomnia and confusion. Tonight they are going to try again to knock him out in hopes of allowing him to get some much needed rest (for both of us!). Please pray that they will find the problem and be able to take care of it.
His counts are WBCs .1, ANC 0, hemoglobin is 9.7, and platelets are 35. Justin is still on the continuous platelet drip. His hemoglobin was probably lower that usual after a transfusion because he lost some blood from a sore (self inflicted bite wound of the lip!!) which bled all day and all night! What a mess life is with low platelets!! His other labs are about the same.
Overall, I am feeling somewhat better about Justin. He looks good, but it is really strange to see your child so confused and not know what's going on. I am relieved by the negative CT scan. He is having some discomfort in his legs, which is "good". There is never a dull moment on this journey...very exciting, but it is a trip I wish for nobody.
I've got to run, but hope you all have a great day. It was a beautiful, sunny 82 degree day here today! We watched it from the window!! Thanks as ever for the continued love and support. Until tomorrow, and hopefully some geat news. Please pray hard tonight!

Monday, March 06, 2000 at 05:43 PM (CST)

CBT day +26
Hi everyone... This has been another rough and difficult day for both of us. Last night Justin slept for about 3 hours MAYBE off and on. He is very confused. It is mostly just his short term memory that is affected, but it is so hard telling him something and 2 minutes later he can't remember it. Dr. Martin came to see Justin today and they have ordered some tests for Justin tomorrow, a PET scan (positron emission testing, new to me), to check for a certain type of increased activity in a certain part of the brain, which would indicate some seizure activity, a CT scan of the head, and a spinal tap. The increased activity in the brain I guess, is not uncommon in transplant patients and can be treated easily. It is also a temporary condition, but they have to see if that's maybe what's going on with Justin. The headaches he had awhile ago could also be an indication of this. They other tests are basically to check every possibility so as not to miss anything. The neurologist still suggests medications are making him so confused, but I guess we will find out tomorrow. I hope and pray it is only medication and not something serious. We also found out that his urine culture was negative for bacteria but positive for a faily common virus in the bladder, that does not have to be treated, but can cause these UTI symptoms he is having. Dr. Martin is pleased about the fact that his fevers have been very minimal and low grade, never lasting more than 8 hours. He is noticably weaker from being so sick, but although we haven't been in the hall due to these "spasms" he has, he has walked around the room many times during the day. The doctors are very reassuring and are so good about taking time to answer all of my questions. I asked specifically if I needed to be concerned and Dr. Martin said no. Of course, I am. But they said that are not things they haven't seen many many times. That made me feel much better, but until we know what is going on in Jus' little head, please pray hard that he will be ok.
His labs today are WBCs less than 0.1 (I found out that when I use the less than sign, the numbers don't show up on some people's computers...Sandy, you aren't alone!), his ANC is 0, hemoglobin is down to 7.5,(he received 2 units of blood today), and his platelets are 35 (he continues to be on the continuous platelet infusion). We continue to pray for healthy donor cells to grow. On day +30, or around there, he is supposed to have a bone marrow aspiration that will tell us what's growing. His other labs, BUN and creat (kidney function) are up a bit again and his bilirubin (liver function) is down considerably!! I am really grateful for that, thank you God.
Please continue to keep Justin in your thoughts and prayers. I am so concerned about all that he is going through. To look at him, he still has that wonderful smile now, but he just isn't my Justin. When praying for Justin, please remember all of the other children here going through the same difficult times. But it's all worth it... I can't think of anyplace I'd rather be right now, except home, as a family.
Have a great night.

Sunday, March 05, 2000 at 05:09 PM (CST)

CBT day +25
Hi everyone. I had to check the calendar to see what day it is, they seem to run together lately! Another night awake last night. Today Justin took a nap for an hour and a half, the first sleep he has had in 4 days. To look at him, you can tell he is exhausted. He is holding his eyes wide open. He is a little better mentally being off the morphine, but he is still quite forgetful and having a hard time with his short term memory. He is much more alert but he can't remember what I say to him sometimes three minutes later. I know he has tried to talk to a few friends "online" today... hope he didn't say anything wrong, and if so, please forgive him!! He has been saying some really crazy things. He seems to feeling pretty good today. No pain, no nausea, no vomiting, no fever, and no itching. Overall, pretty good! But, he is still having these "spasms", which they thought might be coming from the UTI, but actually they may also be related to the morphine reaction. I have noticed that when he has one of these things, his arms are also involved. The neurologist also seems to think he is better and it is related to the morphine reaction. They are just really strange to watch. Please pray for these to stop. His heart rate and blood pressure are still on the high side, but these are also coming down now, and at least the BP is now responding to the medication. We did venture out of the room today for a bit and he has gotten some exercise, but he is a bit weaker now, so we haven't gotten as far. As soon as this reaction is all cleared up, hopefully we can resume where we left off! Had a great visit today with his cousin Ridgely, Aunt Tina and Uncle Mike. Such a long drive to visit and I know Justin loved it. Hopefully tomorrow he will remember you were here!! Thanks so much, I was glad to have someone here with him so I could go to the apartment to shower.
Justin's counts today are WBCs .1, ANC 0, hemoglobin down to 8.6 (quite a drop from yesterday) and platelets up to 38 (thanks to the continuous platelet drip). They aren't sure where the blood went to but that is a bigger drop than usual for his hemoglobin. He will need a transfusion tomorrow if it drops to 8.0. His other lab work, particularly BUN and creat (kidney) are down today (yipee) but his bilirubin (liver) is elevated to 4.7 (way higher than I'd like it to be, but they tell me it isn't unusual). His other liver tests are all normal so he still doesn't seem to be concerned at this time.
Well, I am going to sign off for now and see if I can get Justin more tired somehow! Hopefully we will sleep well tonight! Hope you all had a great weekend! Love and thanks to all...

Saturday, March 04, 2000 at 12:31 PM (CST)

CBT day +24
Hi everyone....well, Justin and I have just spent our third consecutive night...oh, correction...day and night...AWAKE. I think both of us are totally exhausted, and hopefully tonight will be a catch-up night, but Justin isn't making any promises! Let's see, where should I start? Well, first of all, the itching is gone, what a relief. Yesterday I wished I had had a video camera. His nurse and I had to keep leaving the room because we didn't want him to see us laughing. Let's just say that the worst of the rash and itching was on his cheeks...not his face!! But of course, get one problem fixed, and another one pops up out of nowhere. Yesterday he required several different medications to take care of the apparent allergic reaction. Next thing we knew, he was so hyper he couldn't sit down. They also think that the morphine he has been on continuously, mixed with the other drugs made him react like that. His blood pressure, which does not want to respond to the drugs, was as high as 170/104, and his heart rate was up to 160! Then, due to this UTI he has, he constantly wanted to get up to use the bathroom but couldn't go! (That's a horrible feeling!) He started having spasms of some type which caused him to shake so bad and become almost rigid. It was a very frightening night for me. (I have probably prayed more in the past 12 hours than I have in the past 12 months!) There was a doctor in to see him twice during the night because I didn't feel comfortable with the way he looked. He has also become intermittently confused and really makes some off the wall comments at times. They have now stopped the morphine and some other drugs and will use something else for pain (dilaudid), but a very low dose. Thank God, the pain in his abdomen and the nausea and vomiting are almost gone now! However, Justin continues to need your prayers more than ever, as none of these new problems are resolved yet as we head into another long night.
Justin's counts are about the same. WBCs are .1 (do I hear a .2...please?)ANC is 0, hemoglobin is 10.5, and platelets are 14. He had a platelet transfusion today, but isn't holding them at all, and he noticably has many more bruises today, so they are going to start him on a platelet drip continuously to see if that helps. His other labs that are of concern to me are the BUN and creatinine, which have started climbing again. I pray that they will start to come back to normal.
Hope you are all having a great weekend. Justin and I are doing our best to hang in there. We couldn't do it without your tremendous amount of prayer and support. We are eternally grateful.

Friday, March 03, 2000 at 02:31 PM (CST)

CBT day +23
TGIF...
Every day at Duke is an adventure~ never a dull moment!! In some ways, Justin is doing so much better...in other ways, he is feeling totally lousy.
I have some great news about his abdominal ultrasound that was done yesterday (John, your son did a great job!). First of all, his liver is completely normal despite the elevated bilirubin. Second, his pancreas doesn't look bad at all, but his elevated enzymes were definately enough to cause the severe pain he had, as well as the nausea and vomiting (still a problem, but much better). His kidneys look good. His only problem (but not bad) was with his gall bladder. You might remember that he had some problems with it back in December and they even talked about removing it pre-transplant, but the snow storm cancelled the CT scan, so that was never done. Dr. Szabolcs feels that the gall bladder problem is also causing the elevated bilirubin and it isn't anything to really worry about now. This morning his pancreas enzymes have returned to normal, thank God, and his BUN and creatinin (kidney) are decreasing also. His pain is about gone. Last night he was able to get out of bed and walk a little in the hallway. We watched a movie until he fell asleep and then I thought everything was fine until about 530 this morning when he started having trouble with itching...severe itching!! Nothing has helped it today and he is feeling so bad, but at least it isn't pain. We have tried everything. Since he was started on some new medications yesterday, they stopped the one they thought might be causing the problem, hopefully he will feel better soon. On top of the allergic reaction, we found out that he has a UTI (urinary tract infection) and is miserable with that, too! He has also had high blood pressure and elevated blood sugars today. He is now on BP medications and they have mentioned starting some insulin as a temporary measure to keep his blood sugars under control. These two problems are fairly common, treatable, and temporary. I will admit, that although he is still miserable, I am so relieved that our prayers have been answered once again. I told Justin that if he didn't feel so bad, it would almost be funny watching him dancing around the room (great exercise for today!!). He told me he'd laugh about it in a couple of weeks, but not today!! He is still in good spirits, it is truely amazing with all he has been through. The doctors are still very pleased with how he is doing, this is just part of it, and I'm sure the worst is not over yet.
Still very patiently waiting for cells to grow. Last night the doctor said that Justin's rash does look like some cells might be starting... hopefully soon! His WBCs today are still <0.1, ANC is 0, hemoglobin came up a tad to 10.8, and platelets today were only 8, even though he had some last night, so obviously, he had platelets again today.
Thank you for praying for Justin's pain to be gone, now please just keep praying for healthy donor cells to grow!!!! I am so proud of Justin, other parents up here have even commented on how well he does and his positive attitude. He is so amazing. I plan to stay here this weekend with Justin. I will sure miss seeing Courtney, and I know the mall will miss us, too!!! Hope you all had a good week and have a great weekend! Stop and take time to listen to your kids tell you something good about their day today!
See ya...

Thursday, March 02, 2000 at 01:56 PM (CST)

CBT day +22
Well, it's been a long and difficult 24 hours, but I think (I hope!) that the worst of the pain is behind us, thank God. I anxiously sat at Justin's bedside all night, rather helplessly watching him in terrible pain. What a nightmare for him. Today his amylase and lipase were slightly decreased, which is very good. He is still in pain, but with the morphine dose he is on now, it is much more tolerable for him (he is sleeping peacefully right now!). His nausea is much better today. We are still awaiting results of an abdominal ultrasound. Along with the pancreatitis, he developed a few other problems. He had his first fever since transplant, (he is on new antibiotics now), fortunately it is back to normal also. His blood pressure and his heart rate really jumped up, (sort of goes along with the pain and fever) but they are also returning to normal. I am still really concerned about his increased bilirubin (liver function). It has jumped from 2.0 yesterday to 3.7 today. Hopefully, the medication he is taking to bring that level down will start to work soon. He really hasn't been able to keep the medication down, but today he did. Please pray for it to work. His BUN and creatinin (kidney function) have seemed to stablize, which will do for now!
His blood counts are WBCs still <0.1, ANC 0, hemoglobin 10.7, and platelet count is 26. They have just repeated his platelet count and most likely they will have dropped enough for him to require a transfusion later today.
Hopefully Justin will be back in the halls tonight, although it depends on how steady he is on his feet with the morphine on board! Would you believe he worried about that last night when he was so miserable??
Thank you so much to all of you that left such encouraging notes in the guestbook or sent us emails rooting Justin on. Your very kind words give us so much strength and encouragement, and help us to keep our faith that God will help us through this difficult time. I know there must be a reason for Justin to have to go through all this, but as his mom, it is very hard to understand. Please continue to pray for Justin to get well, and to start to grow some good cells!!
By the way, Justin picked the color for St. Patrick's Day! Until tomorrow...

Wednesday, March 01, 2000 at 06:04 PM (CST)

CBT day +21
March...amazing. Today I noticed the dafodils have bloomed and I saw an azalea bush in full bloom, too. Hard to believe that a little over a month ago, there was 20+ inches of snow on the ground!
Well, I wanted to wait for the doctor to come in today before I updated my journal, sorry for the delay. I have been pretty worried about Justin today. He was in so much pain (abdomen) and still so nauseated. Everything that hits his tummy comes back up. At least the headaches are minimal now, but it is so hard to see your child doubled over in pain. They increased his morphine drip today and gave him an extra bolus dose to get him more comfortable. His bilirubin was elevated today to 2.0 (that number was told to me earlier as a number to start getting concerned) so I was worried about VOD (veno occlusive disease of the liver, a risk we were warned about and is not good). They did some extra lab work and ordered some xrays and we just found out that he has a pretty good case of pancreatitis (inflamed pancreas and very painful). His amylase is very elevated. It is probably from chemotherapy. He had the same thing when he was 5 (first time around) and got out of the hospital just in time to be the ring bearer in Uncle Joe's wedding. It lasted a good week at least. Anyway, although he feels like crap and hurts really bad, it is something he can recover from, so please pray for that. I am so relieved it isn't something more serious, although don't get me wrong, pancreatitis is pretty nasty. I have cared for some extremely ill patients with it. They have kept Justin knocked out most of the day, just to keep him comfortable. He asks a lot of questions, he wants to know exactly what is going on with him. I know he was very scared earlier today, but Dr. Szabolcs was very reassuring to him when he was here. Justin is being very brave. These children have to go through so much...
His counts today are about the same as yesterday. WBCs are <0.1, ANC is 0, hemoglobin is 10.8, and platelets were 16. He had a platelet transfusion this morning again.
Please, please pray for Justin to get well. Thank you again for all the love and support sent our way. I'll keep you posted. Love to all...

Tuesday, February 29, 2000 at 02:54 PM (CST)

CBT day +20
Wow, it's hard to believe that tomorrow is the 1st of March and we have been here since January. Either I am having fun or I am getting old, because time is flying. I don't like the sounds of either of those given the situation here!
Today Dr. Szabolcs came to see Justin FIRST which worried me until he said "I always see you after the moon comes up, so I thought I'd see the STAR PATIENT first today!" Actually, he was wondering if he needed to order a CT scan on Justin for the headaches he's been having, but they are much better today. They are going to do another viral battery (they have to suction out his nose for that) to see if he has a virus in his sinuses rather than a bacterial infection, as a virus would require different drugs. Justin has been feeling badly for the past 24 hours. Wow, if he is the star patient, I really feel for the other children and their parents. Justin is extremely tired lately and very nauseated. He has complained of pains in his tummy, also. He hasn't eaten anything since sunday, and that wasn't much. He is still on the TPN, so it isn't really anything to worry about, but it makes me feel better when he eats. He is still being very cooperative with his exercising, but it sure takes a lot of effort for him now. Last night we walked laps in the hall with him leaning on my shoulder the whole way (nice of me to be shorter than him so he can lean on me, huh?!). His lab work is still of concern to me, but not yet to the docs. I guess knowing too much is sometimes not a good thing! Actually, he hasn't been able to keep down the medication to lower his bilirubin, so I don't know if it will work or not. And as far as the kidneys go, they stopped all the diuretics today and feel that his kidneys are working good enough. His weight tells them that he is not retaining fluid now, which is wonderful, thank God for that.
His counts today are WBCs back to .1, ANC 0, hemoglobin 11.2, and platelets 15. He had platelets first thing this morning. I keep reminding Justin that feeling so bad is "such a good sign!"...hard to convince him of that, but he is hanging in there. We are so thankful that he has been able to avoid high fevers and infections so far, as that is the biggest risk to him. Please continue to pray for healthy donor cells to keep growing and that Justin feels better soon! I really miss his beautiful smile!
Hope it was a good day for all of you. HAPPY BIRTHDAY EILEEN!!!
Until tomorrow... God Bless...

Monday, February 28, 2000 at 05:31 PM (CST)

CBT day +19
Another day gone...I must admit, time is moving quickly. I thank God for another GOOD day for Justin. He is feeling much better than yesterday. The nausea comes and goes. The headache comes and goes, they are planning to have a neurologist see him just to watch him, they are very cautious. Last night Justin finally had a great night's sleep (thanks to some ativan!) and I think that made all the difference in the world. Last night he did manage to drag himself out of bed, sit in the tub for awhile, and then walk. He put in about 10-12 laps even though he felt so bad. I am so grateful for his strength, endurance, and determination.
I have a few concerns about some of his lab results, but they tell me that these problems are "normal" and that I don't need to worry yet. (They'll let me know when he hits the worry level!) His BUN and creatinine are still elevated (measure kidney function) and his bilirubin (liver) is also climbing. They changed all his drug dosages today to protect his kidneys, and also started a new drug to hopefully lower his bilirubin. They say that the ^bili is probably from all the chemo he had. Hopefully, he won't have any permanent damage to these organs. We have started the roller coaster ride with the cell count. All weekend his WBCs were .1, and today the are back down to <0.1. It's normal for them to go up and down before they go up to stay. His hemoglobin today was down to 11.3 and his platelet count was up to 38. No transfusions today!
Please continue to pray for healing. I know some of you are very good at prayer and so far God has been answering! Little Jasmine went home from the unit today. What a good feeling to see someone get to leave here! She had her CBT way back in Nov., so she really deserves to get out of this place!!
Thanks for checking on us! We are to thankful for so many wonderful friends. Also, special thanks to those that have sent cards and other get well wishes. You are all so thoughtful! Hope your monday wasn't too bad! Soon another week will be behind us and Justin will be a month post transplant!!! Bye for now. Love to all....

Sunday, February 27, 2000 at 07:25 PM (CST)

CBT day +18
Well, today was a long day for Justin and Paul. I arrived in Durham along with a wild electrical storm and Paul is on his way back to the Beach. Justin has been sleeping most of the day (he sort of has his days and nights mixed up)and when he was awake, he was either complaining of a bad headache, or throwing up. They aren't sure what's causing the headache. They thought it was from one of the drugs he is on, and they stopped it but the headache hasn't gone away. Now they are thinking that the sinus infection he had pretransplant is causing the pain and they are now increasing his antibiotics. I was hoping that the sinuses were clear by now, but I guess without white cells I can't expect too many miracles. Overall, the doctors are still very pleased that he is doing so well. Please keep praying for Justin to be positive and to have the strength he needs to keep exercising. That is still so important.
His counts today are WBCs STILL 0.1, ANC 0, hemoglobin 12.6, and platelet count 25. Repeat platelet count this afternoon was 15 so of course he had platelets again. These children go through so many platelets. Please keep in mind that the Red Cross is always in need of them. So many people have donated platelets and blood in Justin's name and we thank you for that.
Well, time to get Justin motivated... hope you all had a wonderful weekend. I sure did, it just went by too fast and I didn't get to see a lot of people I had hoped to see. Maybe next time. Sweet dreams... Oh, and PLEASE sign the guestbook for Justin!!!!

Saturday, February 26, 2000 at 12:54 PM (CST)

CBT day +17
CELLibrate!!! Ready for this? WBCs are... 0.1, not <0.1 just 0.1!! That's progress! Yesterday his actual count was 0.04 so I am thrilled! This is the first it has reached .1! I know God is answering all of our prayers. I am so anxious to find out if he has his own cells or donor cells growing. I think it will be another couple weeks at least before they do another bone marrow aspiration to see what's there. His other counts... hemoglobin is 12.2 and platelet count is 15. He received platelets first thing this morning.
Justin is feeling about the same. He has good and bad times. Sometimes he feels so bad but he just can't pinpoint the problem. He's been having a lot of headaches lately. I think he is becoming more comfortable using the morphine pump as he has been hitting the button when he needs it. He gets a very small dose, but it really helps him. His blood pressure has been a bit on the high side for the past day or so, which is most likely from the dopamine they are using for his kidney function. He is still doing great with his walking, last night Paul said he walked 16 hall lengths. I am always glad when he walks so much, it's the only exercise I get when I'm with him!!
The boys are enjoying their time together (I bet they're napping! He never naps for me!) and Courtney and I are having a great day, too. Thank you for your continued love and support, as well as your thoughts and prayers. We are so fortunate. Hope you all enjoy your weekend...

Friday, February 25, 2000 at 05:53 PM (CST)

CBT day +16
Hey everyone. Well, I am at the Beach. What a great day for a drive. My parents spent the day with Justin until Paul got there and I headed home... there's no place like home! I can't wait until I can bring Justin with me!
Justin hasn't been feeling very well the past day. He's had to use the morphine pump more and more. His complaints aren't really specific, but he is moving slower and he is kind of grumpy! Last night they became concerned about his kidney function because he wasn't putting out as much fluid as he was taking in, so they started him on another medication (dopamine drip) to help increase the perfusion to his kidneys and increase his output. They seem to be working well today, and this is not unusual to have happen... just another addition to all the bags and bottles he carries around on his IV pole!! His rash was bright red last night, but better today. I guess the only other exciting thing today was the A he got on his math test!
Counts today are WBCs <0.1, (they didn't do a cell count today, so who knows how many WBCs they found), ANC 0, hemoglobin 11.6, and platelets 26. This afternoon they repeated his platelet count and it was up to 31! Please keep praying for those cells to grow. I saw Dr. Martin today and he was really pleased but said to remember that the white cell count will go up and down before it goes up to stay. We are so grateful for each day that passes in our favor. So many prayers have been answered already.
Hope you all have a wonderful weekend. Do something special with your kids!! You'll never regret it! They are truly gifts from God. :)

Thursday, February 24, 2000 at 06:31 PM (CST)

CBT day +15
Another late day...sorry to keep you all in suspense!! First of all, sorry about the picture thing. I had a great picture I wanted to add to the web site, took it to the camera "place" (won't mention any names, but they didn't make me very happy...) and asked them to develope the film; I wanted pictures and a disk. I went to pick them up the next day, and no disk! They proceded to tell me that the film would need to be sent away for a disk and it would take at least 10 DAYS!!! Then they agreed to scan a pic for me, of course at the same price I could get the whole roll of film placed on a disk, downloaded it onto the web site, and....POSTER SIZE PIC!!! (you could see an eye...scroll a bit...another eye...) Anyway, this weekend I will go to the Beach and get it done the correct way!!
Next...CELLibrate!!!! Justin had 5.. FIVE white cells today!!!!! PLEASE keep praying, they are starting, but they need to be DONOR cells, not Justin's cells!! We won't know that for several weeks, but 5 cells are better than none!! Even had a SEG! Does anyone need to go back and review what a seg is??? We are so excited. Justin still feels pretty good, the rash has returned, he is splotchy all over!
His counts today were WBCs <0.1, ANC 0, hemoglobin 8.0 (he received 2 units of blood today), and platelets were 19 (got platelets today, too).
The doctor is still very pleased, rather impressed actually, and we are so hopeful. Thank you so much for the many many prayers and good wishes sent our way. We couldn't ask for any more than that! I am leaving tomorrow for another weekend with Courtney and leaving the boys behind. Please check on them and cheer them on. You all have become a big part of our daily lives. Thanks so much for the notes you leave to us. Hope you all have a great friday, and a super family weekend. Bye for now...

Wednesday, February 23, 2000 at 04:04 PM (CST)

CBT day +14
Hi everyone! We've had a pretty good day so far. Still having some pain now and then, but the morphine seems to do the trick. Waiting is the hardest thing. It's hard to believe that some of the children here have been on the unit for MONTHS and MONTHS. Hopefully, that won't be the case with Justin. Finding things to do to occupy his time can be a real challenge at times. We had some surprise visitors today. My parents showed up out of the blue from PA, and I know it did Justin good to see grandma and pappap at the door. We were so surprised!! Justin has even ok'd them taking me out for dinner tonight! What a treat, just wish we could take him along! Not much has changed with the treatment plan here. Justin is still on all the same antibiotics, antifungal, and antiviral drugs. He continues on the cyclosporin, IVIG, GcSF, TPN, to mention a few things. These drugs are so hard on his body, but very necessary. He's had some elevated labs, his BUN and creatinin, which tell us how his kidneys are working... they say those are caused by the cyclosporin which he needs for antirejection. He'll be getting more lasix (diuretic) today to help pull off the fluid.
His other counts are as expected. His WBCs are still <0.1, his ANC is 0, hemoglobin is down to 8.4 (probably need blood by tomorrow or friday), and his platelets are 28 (had some of those yesterday and will probably get more tomorrow too).
He continues to do great with his exercising thanks to a little deal he worked out with Uncle Joe, something to do with an ATV??????? I am so proud of him for his stamina and his very positive attitude. He refuses to think any negative thoughts, pretty good for a 14 year old, I think. I'm adding a new picture to the photo album today, so please check it out! Courtney, I want you to know just how proud daddy and I are of you too! Hang in there sweetie, and soon we will be together again!
I hope you all have a great day, just think, another week is half over! Please drop a note to Justin, as reading the guestbook is still very much a daily ritual, and does so much for his moral. Thank you all...
God bless!

Tuesday, February 22, 2000 at 04:53 PM (CST)

CBT day +13
We are anxiously awaiting our CELLibration... the doctor just reminded us it could be weeks yet before donor cells start to grow, but he has beat the odds so far.... remember the average is 24 days, up to 40 days before they engraft.
Justin has had a much better day today. Last night's pain got pretty bad and it took several doses of morphine before he could rest. He was more frightened than anything, but the good news is that the chest xray was normal and there is no sign of any infection or lung problem. They think he may have pulled one of the small intercostal muscles in his chest. I am relieved, and I know he is too. Also, we were again warned (not to put a damper on his great progress, but...) that things could change when cells do start to grow. They definately expect fever and more rash at that time. More of those good bad things!! They are still so impressed with how quickly his mucusitis has healed, as that is the biggest risk of getting bacteria into his blood stream, and of course, that would be very bad for Justin. I'm sure his amazing positive attitude helps tremendously. Please keep praying for healthy donor cells to start growing!!
Justin's counts today are WBCs <0.1, ANC is 0, hemoglobin is again 9.1, and platelets are down to 20. I am anticipating that Justin will get platelets before the day is over.
I just had a great talk with Courtney, she misses her "family". Nothing will be the same until we are all together again. I am sorry for all the things I have taken for granted in the past. I'm sure this whole life-changing incident will have quite an effect on us, hopefully we will grow from it. Hope you are all enjoying each and every day. Each one is a blessing we should be grateful for. Until tomorrow...

Monday, February 21, 2000 at 07:22 PM (CST)

CBT day +12
Hi everyone... sorry for the delay in updating my journal today. Didn't mean to alarm any of you. Justin has not had the best day today. Overall, he is still doing very well and the doctors are very pleased, but it is to be expected that some days will be better than others. A few days ago, he started having a rather minor pain in his right chest. Usually he pushes the button and gets a small dose from the morphine pump and it goes away. This evening they had to start him on a continuous low dose morphine infusion to keep him comfy. The pain in his right chest keeps getting worse, sometimes when he takes a deep breath, sometimes just out of the blue. Tonight it is pretty continuous and very uncomfortable and he feels he is having a hard time breathing. His lungs sound clear, but they are going to get a chest xray to see if there is something going on that they should be worried about. Please pray that this pain goes away and that Justin is OK. Everything else is going so well. Today when the doctor looked into Justin's mouth he said it's hard to believe that Justin had TBI (total body irradiation) because there are no sores. We are so thankful for that, it can be so miserable. It is so hard to see him hurt. It makes me hurt, too.
His counts are WBCs <0.1, ANC is 0, hemoglobin is 9.1 and platelets are 35, so no transfusions today.
I am so proud of Justin for how well he is handling all of this. He continues to have such a positive attitude. He is doing everything he is supposed to do. I pray that God will heal him and continue to give him the strength he needs to fight this!
Coach Kay from Duke basketball called Justin today...we didn't dare tell him Justin is a true Blue fan (GO UNC!!) but I guess it would be OK to favor 2 teams, except when they play each other!!
Well, I am headed home this weekend to see Courtney again, I can't wait to see her! The boys will have another weekend together! Hope you all had a great monday, I know they can be rough days! Thanks for your continued love and support. Please leave a note for Justin!
Until tomorrow....

Sunday, February 20, 2000 at 02:15 PM (CST)

CBT day +11
Not too much to add today. We are just feeling so fortunate. Last week Dr. Kurtzberg told Justin that about 5% of the patients don't really have any problems, and Justin told her that he was going to be one of those 5%! Boy, I hope he's right. He is feeling a little wiped out today, and he aches all over, but that is certainly to be expected. Just having low cell counts will do that. Last night he walked 12 hall lengths before he went to bed. He's having a little trouble sleeping at night, so he has been sleeping pretty late into the morning. Still no fevers, rash is still off and on, and his mouth feels good but his throat has been bothering him today. Hopefully, it is just residual mucusitis.
His WBCs today are still <0.1, his ANC is still 0, his hemoglobin is 9.5, and his platelet count went from 35 down to 23. They just repeated that and it is now down to 12 so they are going to give him a platelet transfusion this afternoon.
We hope you have had a great weekend with your families. We sure do miss our family time. Thank you Tina and Michael for taking such good care of Courtney! We love you all.

Saturday, February 19, 2000 at 05:21 PM (CST)

CBT day +10
Hi everyone! Another day down, and things are still going great, better than we could have hoped for. Every day I still pray that Justin will continue to do so well and that healthy donor cells will be growing soon! Thank you so much for your endless prayers for Justin and our family. It is obvious they are being answered and we are so grateful. No nausea and vomiting today, and the rash is better, although it seems to come and go. Justin is getting quite an appetite, presently eating his second dinner!! I'm wondering if they will soon cut back on the TPN (IV feeding) if he keeps eating so well. The taste isn't there yet, but it's coming back slowly.
Well, Dr. Howrey just left...he said he is very pleased with Justin's progress. He warned us that when the donor cells start to grow, he may still get fevers, pain, more rash etc. The average length of time for the cells to engraft (start growing) is at about day 28. Smaller kids are sooner, bigger kids like Justin may be later. He may wean him off the TPN and Morphine this week if Justin keeps doing so well, but they will be available if he ever still needs them. He will continue with all the antibiotics, heparin, and other medications to prevent possible complications.
Justin's counts today are WBCs <0.1, ANC 0, hemoglobin 9.5, and platelets are 35. How about that, no platelet transfusion today!!
Well, it is time to go walking in the hall. By the way, to all of Justin's buddies, thanks for always making him smile and keeping him in your thoughts. He loves your notes to him!! To everyone that takes the time to check on us and leave guest book entries, thank you! Hope you are having a great weekend. Untill tomorrow...

Friday, February 18, 2000 at 04:18 PM (CST)

CBT day +9
Another day to celebrate... Justin is doing so well. There is another child that had a transplant the day after Justin, and he is having such a hard time. I am so very grateful that Justin is doing so well. I keep praying that it continues. Waiting is the hardest part. Last night Dr. Kurtzberg said that Justin may be one of the lucky ones and not have severe side efffects. I am just so anxious for those cells to start to grow! Justin has had a little bit of trouble with nausea and vomiting the past 24 hours, but it hasn't really affected his appetite. He is eating some chicken and potatoes right now! Still no fevers, his vital signs are great. He has required a couple of doses of lasix (diuretic) to keep his kidneys working well (normal to require this) and he responded to it just like he was supposed to. He is still on all the antibiotics, antifungal, antiviral, and antirejection drugs, as well as the GCSF (to make cells grow!), morphine pump, and TPN. All of that makes for a pretty heavy load to haul around in the halls, but he keeps doing his exercises like he should. The rash is better today also, though it seems to come and go.
Justins counts continue to be about the same. His WBCs are <0.1, ANC is 0, hemoglobin is 9.2, and his platelet count was 22 this morning but down to 16 this afternoon, so he is getting a platelet transfusion now. He is getting platelets just about every day, which is not unusual.
It's been really neat to read guestbook entries from all over the world! Once again, thank you all for taking the time to drop a line to Justin. Boredom is a very real thing right now, and Justin has weeks to go before he is discharged from the hospital, so every little thing helps pass the time for him. We continue to ask for your prayers, we can never get enough of those!!
Hope you all have a super weekend. God Bless...

Thursday, February 17, 2000 at 03:25 PM (CST)

CBT day +8
Hi! So far, so good. Justin is still feeling great. Today when I returned to Duke, the first thing I noticed was the red rash on Justin. I got excited! It seems to come and go, itches a bit, but not too bad, overall. Still no fevers, despite the runny nose. We are grateful for each day that passes and he continues to do so well, just need those cells to grow!! Jus is doing so well with his exercising. Fortunately, getting out of bed,walking down the hall, sitting in a chair and playing a couple games counts!! His appetite continues to increase and his mouth is feeling back to normal.
His counts are the same. WBCs are still <0.1, ANC is still 0, hemoglobin is 10.1, and platelets are up to 21. I will be so relieved when he starts to make cells, donor cells that is! Waiting is the hardest part for Justin.
Justin had a good evening and night with Dad, and I had a good time watching Courtney dance, although a little more sleep would be great! Tonight will be another movie night after homework! Please keep praying that Justin continues to do so well. He is usually the last patient seen by the doctor, they see the sickest patients first!! I am so proud of him! Thanks again for all the good wishes, you are all truely a blessing to us! Have a great thursday, and tomorrow is friday, so smile!! See ya....

Wednesday, February 16, 2000 at 10:12 AM (CST)

CBT day +7
Hi everyone. Well, we have reached that big day and Justin is determined that he is going to keep on feeling good (he has such a positive attitude). Actually though, the "bad things" are really good signs, meaning that cells are starting to grow. They are expecting the fevers to start soon, as well as a rash that starts on the palms of the hands and soles of the feet, and spreads all over. Pain is also common, but so far he still feels good. Last night when he was walking in the halls, we did notice that his hands and feet were red, and I guess that's something to get excited about. The quicker the cells grow, the quicker we can go out-patient! Please pray for those healthy DONOR cells to start growing!
His counts today are about the same. WBCs are <0.1, ANC is 0, hemoglobin is 10.2 (dropping slowly) and platelets are only 11 despite the platelets he got yesterday. He had more platelets this morning. It isn't unusual for these kids to sometimes require platelets daily. It will continue to be important that he not hurt himself in any way, because it could cause bleeding. He bruises pretty easily.
So many people have emailed me asking about visiting Justin. We aren't strongly encouraging visitors at this time, although he would love to see anyone that isn't a doc or a nurse! Please remember, anyone that does visit must be very healthy... no colds and no exposures to anything. The room is quite small and there is no place to sit. The nurses have asked us to have visits limited to 10 minutes and only 2 people at a time. Please understand...this entire unit is an isolation unit and the children are very compromised. Thanks.
Once again, we are so grateful to all of you who take the time to check on Justin's progress and remember him in your thoughts and prayers. I am leaving shortly for my quick trip home to see Courtney dance, so Justin will get another night with Dad. I'm sure he's looking forward to it, I know Paul is. Hope you all have a great wednesday! Until tomorrow.....

Tuesday, February 15, 2000 at 01:54 PM (CST)

CBT day +6
We have another day behind us and we are so grateful that things are going so well. Justin is starting to feel pretty weak, but that is to be expected. His mouth is feeling so much better now. He is actually eating a few bites of food now and then, so it is good to know that he still has some appetite even with the TPN going. He slept in today untill 11am, woke up just in time for his teacher! Last night we had a nice quiet evening together. He's been very cooperative with his exercising!
His counts today are WBCs <0.1 again with an ANC of 0. His hemoglobin is 10.9 and his platelet count is 10. He had some platelets this morning and has been tolerating them really well. I keep praying that we will get some cells soon, but it could be weeks yet before he engrafts (the new cells start to take and grow).
It's a beautiful day here in Durham today. I hope it's this nice at the Beach. Paul is coming tomorrow so I can come home and watch Courtney dance at school. It will be a rather short 10 hour stay, but it is always so nice to see her. Justin and I both miss her so much!!
There are so many kids here that have gone through so much and have had such a hard time. It does my heart good to see Justin and all the other children that do so well. I pray that they will continue to do so good. I try to remember all of these kids in my prayers, and thank God for each day.
Hope you are all having a good week. If things go as planned, we will all be home in 94 days!!!! (tell me time will fly by!!) Thanks for remembering us and checking on us! Leave us a note, Justin still reads them all and enjoys hearing from you! Bye for now...

Monday, February 14, 2000 at 12:04 PM (CST)

HAPPY VALENTINE'S DAY! Hope you are all sharing a special day with someone you love. Justin has agreed to be my valentine today! What more could I ask for...

CBT day +5
Well, Justin is having a really good day again, it is almost scarey how well he is feeling after some of the stories I have heard about. I just keep praying that he keeps feeling this good! His mouth is feeling a little better. He had to use the morphine pump twice yesterday, both times before taking oral medications. Unfortunately, he got sick to his stomach both times, actually puked a little with the second dose, so that's something we will have to watch. He was on a morphine pump in December, too, but he was already so sick with nausea and vomiting then, that we couldn't have known if the morphine was making it worse. I am so grateful that he is doing so well so far. He has been doing such a great job with all the things he has to do that we had to fight with him to do before. I am really proud of Justin... he says thank you when they do things to him he doesn't like!
His counts are still ZERO...WBCs <0.1 but with a notation that there were no WBCs to count, therefore his ANC is 0. His hemoglobin is down to 11.6, and his platelets are up to 26. They have just drawn another platelet count to see if he needs to get platelets today. His other lab work is all good except his BUN (kidney function) is elevated to 33, normal is 7-21, but hopefully the TPN (IV feeding) is making that elevated. So many of the drugs he is on are hard on the kidneys, so that is something they watch closely.
Justin is getting into his school work again. His teacher came in today for the first time. She was sick last week, so she stayed away. She will continue to work with him after he is discharged from the hospital as long as we are staying in Durham. Justin is hoping to get out of those dreaded Virginia SOL exams by being enrolled in Durham schools!!
Well, it is movie time...time to snuggle up with Jus to watch whatever he has picked out for us to watch today! Our love to you all.. We continue to ask for your daily prayers as those rough days are still ahead of us. God Bless...
Courtney and Paul..Happy Valentine's Day! xoxoxo

Sunday, February 13, 2000 at 03:35 PM (CST)

CBT day +4
We've had a great weekend. The time at home went way too fast and was way too short, but I'm not sure how fast it went for Paul with Justin! Courtney broke me at the mall but the time together was worth it. We are back in Durham now, and Courtney and Justin are enjoying a visit together.
Justin has had a good day again. His mouth is bothering him more than anything and today they finally started him on a morphine pump, but he has not had to use it yet. It's just nice to know that relief is the push of a button away. He has mucusitis (inflamed tissue, or mucus membranes) from his mouth the whole way through his GI tract, and it can be very painful. He's had a minimal amount of GI bleeding, but it is normal with all the sores in there, and Dr. Driscol is not concerned about it. He still has his cold symptoms but they haven't gotten any worse. I pray that it stays minor and doesn't turn into pneumonia or anything more serious.
His counts are as expected. His WBCs remain at <0.1, his hemoglobin is stable at 12.2 and his platelets were down to 13. He had a platelet transfusion first thing this morning and tolerated it well.
Courtney and Paul will be leaving soon to return to the Beach and it will be 2 weeks before Paul is able to return (unless he is able come down this wednesday for awhile so I can run up to the Beach to watch Courtney dance!). Life as we knew it has sure changed... but I'm sure God has His reasons. Please continue to pray this week, as rough times may lie ahead. Hope you all had a great weekend!!

Saturday, February 12, 2000 at 02:16 PM (CST)

CBT day +3
Hi all...well, the boys are doing pretty good on their weekend together. Justin is taking good care of Paul!! I'm having a great time with Courtney, she talked me into a day at the mall...danger danger...and we are looking forward to being all together tomorrow.
Justin is still feeling great so far. He is getting a few cold symptoms again, so they are planning to do another viral study to see if it is just a common cold or something they should worry about. His counts today are about the same, WBCs are <0.1, hemoglobin is 12.2 and his platelets are 29. They aren't calculating an ANC, because it is probably zero! They have started Justin on his GCSF (Granulocyte stimulating factor,makes those healthy WBCs grow faster!!) again but at least they give it through his IV this time, so no more injections! They never stick these kids with needles at all, everything is done through the IV catheters. They say there is more risk of infection by piercing the skin. Justin is glad!!
Well, time to run... hope you all are enjoying a great weekend with your families! Please continue to pray that Justin does well and doesn't get an infection!!! Thanks for caring....

Friday, February 11, 2000 at 11:44 AM (CST)

CBT day+2...
Hi everyone. Wow, we were overwhelmed by all the wonderful notes and emails we got yesterday! I wish we could answer every one of them, but it isn't physically possible! Please know how grateful we are and how much it means to us to know that you all care. I wish you could watch Justin with the computer when he is checking the notes you write!
Yesterday Justin had a good day. He got his transfusion with no trouble. He has been doing pretty good with his exercising, takes some coaxing, but Uncle Joe, you would be proud of him! They have a huge adult trike here that he has been riding up and down the halls. Today Paul brought his remote control car in, and hopefully that will help to get him out in the hall, too. Exercise is so important to help prevent him from getting pneumonia. His mouth sores are starting to develop, although he has also been doing very well with the mouth care he has to do 4X a day. He has not gotten any pain yet, they say that when the new cells start to engraft, these kids have a lot of pain. Eventually, he will be on a morphine pump for pain controll. He started on amphotericin last night. That's that nasty drug they give for fungal infections that he was on at CHKD, and it is so hard on the body. He has to be premedicated before each dose with benedryl, tylenol, steroids , and demerol(he gets rigors, which are the shakes, so bad that the whole bed jumps around!). Fortunately, he is on a low dose for now to prevent rather than to treat an infection.
His counts today were ok, WBCs are <0.1, hemoglobin is way up to 12.0 after the transfusion, and his platelets were down to 18, so he did get some platelets today.
Paul just got here to spend the weekend with Jus and I am headed to Virginia Beach for the weekend to be with Courtney. Sunday, we will come back and Courtney and Justin will finally get to spend some time together! I am looking forward to a great weekend. I hope you all have one too!!! Please pray that Justin has a good weekend. I am a bit anxious about leaving him, though I know he is good hands. God Bless you all...

Thursday, February 10, 2000 at 12:23 PM (CST)

CBT day +1....Thank you so much for all the wonderful words of support and encouragement sent to Justin and our family! You give Justin such strength and determination. He has been amazing for me to watch. He is the one that gives me my strength. God has certainly blessed us with wonderful children.
Yesterday was a really good day. Justin felt pretty good most of the day and I think he enjoyed having both mom and dad around most of the day. The next few days may be pretty boring. They will checking his counts daily and just waiting to see how his body reacts to the new cells. It will take weeks before we know. In the mean time, Justin is at tremendous risk for infection. He is on several antibiotics hoping to avoid that risk if at all possible. He was also started on an antifungal drug as well as TPN (remember, that's the steak dinner in a bag!). He is eating very little on his own, but that is to be expected.
His counts today are as they should be, WBCs are <0.1, his platelets are up to 35 post infusion, and his hemoglobin is down to 8.0. That's the cut off for transfusing, so he is now in the process of getting 2 units of blood.
The nursing staff has been great. Justin has also had several visitors who are student volunteers from Duke. Not the same as having your best buddies around, but it does help the boredom.
Keep praying for those cells to grow! Bye...

Wednesday, February 09, 2000 at 11:58 AM (CST)

JUSTIN HAS BEEN TRANSPLANTED!!! PLEASE PRAY FOR THE NEW CELLS TO GROW! This morning at about 1030 he was premedicated with benedryl, tylenol, and steroids to prevent a possible reaction. The small bag of cells had about 50cc of fluid in it and it infused over about 20 minutes. Justin tolerated it well... with the exception of some high blood pressure. They have given him some blood pressure medicine (niphedipine) to bring it down, and this is a fairly normal reaction. This was a big event for us today! The odor was rather unpleasant, it was more like rotton eggs than garlic! Now we wait... It may take a few weeks before Justin starts to grow cells, then they will need to do a test to see if he is growing his old cells or donor cells. The donor was blood type B+, Justin was O+, so that will change now, too. He will have some very difficult days ahead. I have heard that days 7-14 are the worst, time will tell. Our biggest concern will be the infection risk, as he will have no immune system for quite some time.
Dr. Martin stopped in today and said he is very pleased with how well Justin is doing. His counts today have continued to drop. His WBCs are <0.1 (I think this is as low as they calculate here), his hemoglobin was 8.2 and his platelets were down to 18. They wanted to give him some platelets prior to the transplant, so they tried that first thing this morning, but he developed a rather significant reaction. He started having trouble breathing about 5 minutes into the transfusion, so they stopped it immediately and they will try again later today. I stayed at the apartment last night so I could do some laundry for Justin and catch up with the stack of mail Paul brought...I called this morning to see how Justin was doing. Paul spent the night with him, (Justin has really missed having Paul and Courtney around)and when I called he told me that Justin couldn't breath and hung up and I tried to call back for the next 30 minutes while I was frantically getting ready to come to the hospital, and the line was BUSY! Obviously, it didn't last. They were ONLINE and oblivious to what my nerves were going through!! Anyway, he is fine now, snoozing quietly from the large dose of benedryl.
Thank you so much for the countless prayers and messages that have been sent our way. We can't tell you enough how grateful we are. I sound like a broken record, but it comes from my heart! Hope you all have a great day... and we ask that you continue to pray now more than ever that Justin will soon be growing new healthy donor cells!!
Courtney, I can't wait to see you! I love you so much!!
Oh, please check back later, I hope to have some "big event" pics in the photo album! God Bless...

Tuesday, February 08, 2000 at 01:10 PM (CST)

Last night was so much better than the night before. The ATG caused some rather severe shoulder pain again and he had a dose of morphine twice, but for the most part it was uneventful and no fever spikes or vomiting this time. Hopefully, Justin has had the last chemotherapy that he will ever need to have. Those drugs are so wicked and it is so hard watching kids go through all these side effects, although they seem to do so much better than adults. We think he is starting to get some mouth sores again. It hurts him to take pills now. He is drinking water but not really eating or drinking anything else. When he throws up now there are streaks of blood visable. He does his mouth care so well...I used to fight with him to do at CHKD...You guys on 8B would be so proud of him!! He is getting ready to receive his last dose of ATG. They have premedicated him again, hoping to prevent reactions. Hopefully the shoulder pain will stay away this time.
His counts have dropped again today. His WBCs are <0.1 from 0.2, his hemoglobin is 8.4 from 9.8, and his platelets are 35 down from 60. Tomorrow is the big day...we don't know when it will happen, they say it's usually between 10 and 11am. The nurse said it depends when the cord blood is ready. It has to be thawed, etc. They say that the preservative they use will make the room smell strongly of garlic during the transplant. He will be premedicated pretty heavily like he is when he gets platelets. Dr. Kurtzberg is the physician here this week. She is the director of the Carolina Cord Blood Bank program, and she is a pioneer in this field and has actually done most of the cord blood transplants that have been performed worldwide. We are very fortunate to be under the care of her team (Dr. Martin works with her).
We are expecting Paul here in a short while. Justin said he wishes Courtney could be here for transplant day, he really misses her. Please pray for a successful transplant for Justin. He may soon be able to celebrate 2 birthdays...August 17 AND FEBRUARY 9th!! (We try to look for all the PROs in this journey, what kid wouldn't want two birthdays!) We are very nervous about this big event... it is an excited kind of nervous, I'm sure you all can imagine. We can't thank you enough for all your prayers. We are blessed to have to have so many people so concerned about Justin.
Oh, check out the blond hair in the photo album!! Bye for now...

Monday, February 07, 2000 at 07:20 PM (CST)

Hey everyone... I'm not sure where the day went today. Seems I haven't been able to find the time to get online long enough to update. I tried a couple times, but something always came up. Justin had a couple of unexpected visitors today. Jeff Foxworthy for TV came by and said hi and gave Justin an autographed picture. I was in the shower at the time, and since I rarely watch TV, I had no idea who he was! The nurses said he comes around every so often. A couple of Duke students also came by to visit. One was a premed student who does volunteer work here at the hospital, the other was a friend of Courtney's from dance. Thanks Mandy, I told Courtney about your offer and she is very excited!!
Well, today was the last day of chemotherapy. Justin has done really well with it. The ATG (horse serum!)...well, that was a bit rough, but from what I understand, his reaction was faily minor. He started having pain in his shoulder a few hours into the 10 hour infusion. The pain got so bad that they had to give him a dose of morphine to get it under control. They are great about trying to keep him comfortable. Around midnight he started to spike a fever. It went as high as 103 so they had to do blood cultures to make sure he doesn't have any bugs growing, but they feel confident that the fever was from the ATG. His preliminary reports are negative. They now have him on 3 different antibiotics, and he will stay on them until post transplant when his blood counts have recovered. This afternoon when they started the second dose of ATG, he started getting the pain in his shoulder again and it finally got so severe that he required another dose of morphine. No fever yet tonight. They have never seen this reaction of shoulder pain, but it did go away very shortly after the infusion stopped. He also developed a rash that covered his body, and made the soles of his feet and palms of his hands bright red! That is still with him, but thanks to some benadryl, the itching is gone. They also started Justin on cyclosporin today, which is an antirejection drug. It helps to prevent the dredded "graft vs. host" disease. That's when his body recognizes something foreign and tries to fight it. He will stay on the cyclosporin for a long time. Tomorrow he gets his last dose of ATG, and then he is ready for transplant! God, I pray it goes well... The transplant will be done right here in Justin's room. It is given to him just like a unit of blood and is dripped into the IV catheter in his chest. Hopefully we will be able to share a picture of the big event on here. Oh, that reminds me, we had a pic taken today of the blond hair! I'll try to get it on here tomorrow!
His counts today are about the same. His WBCs are still 0.2, his hemoglobin is 9.8 and his platelets are falling now, down to 60. I expect everything will continue to fall and it takes awhile post transplant before they will start to rise, then we pray that the cells that grow are all donor cells, and not Justin's cells.
One of the hospital teachers came to visit Justin today and hopefully tomorrow they will get started again with school work. He worries about getting behind. He is anxious to start at FC next year with his buddies, although he may be homebound for quite awhile until his immune system is built back up.
Well, I need to get going now, hope you all had a good monday and a better tuesday!! Thanks for taking the time to check on us! Please keep praying!!

Sunday, February 06, 2000 at 05:26 PM (CST)

Greetings from Durham... so far, it's been a good day. Justin had his second day of chemo today and seems to be tolerating it very well. Last night he got sick, but the medication for nausea helped and then he had no more problems. Right now he is getting some pretty yucky drug. Actually, it is called ATG and it is literally a horse serum. They give a horse human white blood cells and the horse builds up antibodies against them. Then they give these antibodies to Justin and they fight to kill off the remaining WBCs in his body to prepare him for transplant. Many of the kids have severe reactions to this which consist of very high fevers (up to 106) and flu symptoms, as well as hypotension (low blood pressure). They can be very very ill. He will get this for 3 days. They first day is supposed to be the worst, but the drug infuses over 10 hours, so he is really just getting started. Praying that his reaction isn't too severe. If he gets the high fevers, he will be started on more antibiotics after having a ton of blood cultures and other labs drawn again. He is already on so many drugs, but nothing compared to what he will be on later!
Justin doesn't have much appetite these days. He still has a very dry mouth from the radiation. He's drinking more water than he ever has, but he has to drink sterile water!
His counts today are as expected. His WBCs are down to 0.2 from 0.3, his hemoglobin is up to 9.3 from 7.2 thanks to the transfusion, and his platelet count is down to 90.
Forgot to mention, Justin is growing a beautiful head full of BLOND hair, not red! He will lose it again from the radiation and chemo though... oh well. He looks pretty cute as a blond!! Had a great visit with Aunt Cherie today. She stayed with Justin so I could go to the apartment and do some laundry. It was so nice to see a familiar face! Paul will be here Tuesday and be here most of the week and through the weekend. I am planning to go home to spend some special time with Courtney if Justin is OK. Hope you all had a great weekend. Thank you so much for the many prayers. Oh, and Justin says...mom, if over 10,000 people have checked out the website, how come they aren't writing notes??? Please write! It means a lot to Justin!!! Bye for now....

Saturday, February 05, 2000 at 03:15 PM (CST)

Hi...Hope you all are having a good weekend. It's been a bit warmer here and the snow is about gone. Tomorrow we are expecting a visit from Aunt Cherie! It will be neat for Justin to see her.
Things are going fairly well so far. Justin started chemo again today. He is getting a drug called Malphalan and he will get it once a day for 3 days. It may or may not make him sick. He got it this morning at about 11am along with a premed antinausea drug. They will give him the med for nausea every 8 hours around the clock, so hopefully he won't feel too bad. The radiation has done it's thing. His counts have dropped very significantly today. His WBCs are down to 0.3 from 1.1. They didn't do a differential (breakdown of the WBCs) so there is no ANC to calculate. His platelets are still at 105 and his hemoglobin has dropped from 8.4 down to 7.2. He received 2 units of red blood cells today, so that should help him feel a little stronger! Because of low counts, he now has to wear a mask whenever he leaves the room. He has to get up and walk for exercise a couple times a day, so he's not thrilled about the mask, but I guess that is a minor inconvenience. We are glad to get out of the very small room now and then! Those of you that worked with me in our OLD ICU at VBGH, his room is that size!
Justin is now on a neutropenic (low white cell count) diet. He isn't allowed to have any fresh fruits or vegetables, and anything he eats has to be prepared fresh and eaten within the hour. He won't eat anything on the hospital trays, so this will be a challenge! On transplant day (wed) he will be started on TPN (IV feeding) again and stay on it until he is eating well again. Well, Justin wants to get online, so I'll sign off for now... please continue to keep us in your thoughts and prayers.

Friday, February 04, 2000 at 04:52 PM (CST)

Justin is officially inpatient. He is in room 5212 and wow, the rooms at CHKD were huge in comparison!! Today he had his last 2 radiation treatments and very glad to have that behind him. The very dry mouth, dry skin, itching, and vomiting haven't been fun, and the mouth sores are yet to come. We spent some time in the clinic getting medication for nausea and antibiotics between treatments and then hurried home for 2 hours of freedom! Counts were ok today. Justin didn't need to get the transfusion afterall. His hemoglobin was 8.4 and they don't transfuse until he gets below 8.0. WBCs are 1.1, falling a bit more, and platelets are 110. They don't really have any plans for Justin tonight except to begin hydrating (IV fluids) him for chemotherapy, which will begin again tomorrow. Please pray that the chemo goes well, and that Justin tolerates it ok.
Everyone has been very nice to us. The room has a TV, VCR, and SEGA to help pass the time. Justin and I will spend a lot of time reading email and guestbook entries, so please write!! Hope you all have a great weekend. By the way, the color change of the web site was Justin's idea!
Bye for now...

Thursday, February 03, 2000 at 12:50 PM (CST)

These aerobic exercises (stairs, hallways, stairs, more stairs) are getting to me! I am a bit out of shape after sitting in Justin's room at CHKD for a couple months!
Well, we are enjoying the last big day of freedom before we begin captivity tomorrow! I'm not sure we will ever take things for granted again!
Radiation went well this morning. Justin did get sick, but we think more from the antibiotics than from the radiation. He feels better now. Justin had more labs drawn today and his counts are starting to come down a bit. His WBCs are down to 1.2 and his hemoglobin is down to 8.5. Platelet count is still good at >100. Tomorrow, after radiation in the morning, he will most likely get a blood transfusion prior to being admitted. It's probably a good thing he is being admitted because he hates to wear a mask everywhere, and in a day or two, that's what he would have to do to protect himself from everyone's germs. After discharge, he won't have a choice. His mask will be part of him.
Tonight is the big Duke/UNC basketball game. Justin would love to give the nurses a hard time tomorrow if UNC should win (not very likely!) We plan to have a nice quiet evening together and enjoy being at "home" together. Hope you all have a great day.

Wednesday, February 02, 2000 at 03:45 PM (CST)

I missed it today, did the goundhog see his shadow?? I am really ready for spring to be here!
Justin had a really rough afternoon yesterday. He was so sick when I woke him to go to the sfternoon radiation treatment. After the treatment he felt even worse so we ended up in the pediatric clinic for the next 5 hours getting some IV medication and fluids. We didn't get home till 8PM! They tried a new drug for nausea and it has really worked well. He's like a different kid today. I know all those prayers helped also. Today we left for the hospital at 730 and after his morning treatment we were back in the clinic for fluid and medication, this time to prevent the nausea, and he feels fine now. The afternoon treatment went really well. His counts today are still good. His WBCs are 1.5, which is actually up from yesterdays 1.4. His ANC, platelets, and hemoglobin are all still fine. Yesterday I told you the his CT of his abdomen was fine, but we hadn't gotten the results of his sinus CT. We got that today. It showed that he has some chronic sinus disease on both sides, so they had to start him on some IV antibiotics today. He will be treated with those for 5 days and hopefully they will be able to clear up the infection prior to transplant. We are still looking at friday as admission day, something Justin is not looking forward to, but we both know that the quicker we get this done, the quicker he can come home! I can't wait for that day!
The snow is finally melting here now. We actually passed a snow plow on the way home. It is taking forever to get some roads cleared, and the kids here have been out of school for 2 weeks!! Well, hope you all have a great day, and thank you so much for all your continued support and prayers. We need them!

Tuesday, February 01, 2000 at 12:01 PM (CST)

Today Justin is definately feeling the effects of the radiation. When he finishes a treatment he says his body feels weak and tingly all over. Then the nausea starts. Yesterday I spoke too soon when I said no nausea! He has had a rough time today. But, as usual, he doesn't complain. Last night after being sick, he still wanted desperately to join his aunt and uncle and cousin for a late dinner. He has been amazing. By the way, we had a great visit with family and it was so good for Justin to have someone here with him beside me! (I think he gets tired of me!) Thanks Tod for the hours you spent playing nintendo with Justin!
We got the results of the CT scan today and it was all normal. A while back I mentioned that they had some concern about his gall bladder and briefly mentioned the possibility of having to remove it before transplant, but it was fine on the CT, thank God. His counts are beginning to fall as we expected because of stopping the GCSF. Yesterday his WBCs were 2.8 and today they are down to 1.4. Now with the radiation they will still fall even more. His hemoglobin is great, 9.3 up from 8.8 and his platelet count is 119 up from 97. All of his other lab results were perfectly normal. Dr. Martin said he is in great shape going into transplant. Today the nurse practitioner said that as long as he feels fairly well, he will be able to continue his radiation as an outpatient and friday he will actually be admitted to begin chemotherapy.
I just read JoAnn Clegg's article in the Pilot. She and the rest of the media have been doing a great job keeping everyone up to date on Justin's progress and we are very grateful to them all. Many people continue to ask us still about being tested to see if they could be a match for Justin. We strongly encourage any of you to call the Red Cross in Norfolk if you want to be placed on the National Registry, but it would not be for Justin at this point, but who knows...it would be awesome to save anyone's life. Justin is having an umbilical cord blood transplant. It works the same as a bone marrow transplant, and although it wasn't their first treatment choice for Justin, hopefully it will have the same great results! We are praying very hard for that!
We are overwhelmed at the response to the web page! Thank you so much for all the encouraging words, good wishes and prayers. We have all of you to thank for getting us where we are! Please continue to pray for Justin.
Have a great day...

Monday, January 31, 2000 at 04:50 PM (CST)

Wow, what a way to put miles on a car... drive to Durham, drive to the hospital, drive home, drive to the hospital, drive home, drive to the hospital, drive home. That's been about all we have done today!! We had to be at the pediatric clinic this morning for lab work and to see the nurse practitioner. I won't get the results of his blood counts until tomorrow because we didn't want to wait around. I guess they must be ok though, because they said they would call if there was a problem. I expect his WBCs to be down from last week because we have stopped the GCSF injections. GCSF is a drug that stimulates the production of WBCs. This afternoon Justin had his first TBI treatment (radiation) and it actually went very well. This will now wipe out any cells we have worked so hard to build up!!! Justin had been so nervous about it, but with the help of a little ativan, he really didn't care what they did to him!! No problems with nausea so far either. He came home and wanted to eat. We are leaving shortly to go back to the hospital for his CT scan. They are checking everything, just so they have a baseline. They will scan his head, chest and abdomen. Hopefully, we will finish just in time to meet Uncle Bill, Aunt Mimi, and Justin's cousin Tod, who are stopping for a visit on there way back to Northern VA. Justin hasn't seen Tod for quite awhile, as he has been busy traveling the world and playing in the Carribean (poor guy). Keep praying that the radiation goes well for Justin. Courtney and Paul, we miss you and love you! Thanks everyone!

Sunday, January 30, 2000 at 05:49 PM (CST)

Justin and I have arrived safely in Durham. The weather was just very wet, but no ice or snow. Durham still has tons of snow on the ground, and the roads are not yet clear, but hopefully this week things will clear up. We really enjoyed seeing the few people we got to see over the weekend... wish we could have seen more of you. Most of our time at home was spent with family, and of course packing!
We have to be at the BMT clinic tomorrow morning at 0830 for some lab work and a few other tests. The CT scan that we missed last week will be done tomorrow sometime after the first radiation treatment. Thanks for the prayers for the safe trip! Keep us in your thoughts and pray that Justin does well this week with radiation. We miss everyone already! Don't forget that Justin loves to read the guestbook entries each night, so please say hello! Hope you all had a great weekend!!

Saturday, January 29, 2000 at 04:14 PM (CST)

Not much to add today. It's been a pretty quiet day here. Today has been a bit stressful for Justin, knowing this is his last day at home until at least the end of May. Please continue to keep Justin in your prayers as he begins this next phase of his treatment. Dr. Martin has given us every reason to be hopeful for Justin's recovery. Thank you again (I can't say that enough) to everyone for everything that has been done for us.
Justin and I will leave tomorrow for Duke; Paul and Courtney will stay at home for now. We will really miss them! I pray this weather holds out a bit longer. I'll let you know when we get to Durham safely! Hope you are all having a great weekend!

Friday, January 28, 2000 at 02:53 PM (CST)

Thankfully, we made it home with no problems. This is Justin's last weekend at home for several months so I am so glad we made it. We have to be back on Sunday. Today I have already had a phonecall from Duke telling me there is another bad snow storm coming in, so I guess it may be another adventure driving back. Justin is feeling great and having a blast today riding an ATV in the snow out at the "Thatcher farm". Pray that this new storm isn't too bad and we make it back ok. Monday Justin starts TBI (total body irradiation) and he is not looking forward to it. He gets it for 5 days, twice a day, and then 3 days of chemotherapy. This is our final countdown to transplant!! Have a great weekend with your families!

Thursday, January 27, 2000 at 02:19 PM (CST)

We are headed home!! Hopefully this weather will not get any worse. We made it into the hospital today without any trouble and they just did counts and some other lab work. Justin's platelets are up to 69! His WBCs and ANC are great (I don't have the numbers with me right now). His hemoglobin was up slightly but since we were heading home, he received a transfusion so he will feel better and have more energy. We have to be back sunday, hopefully before the next big storm hits! Hope you all have a great weekend...we are OUTA HERE!! By the way, I forgot to mention that there is a new picture in the photo album. Check it out! Thanks for your prayers.

Wednesday, January 26, 2000 at 05:56 PM (CST)

Yesterday was a total waste of a day for us, except that we got to spend time together (not necessarily a good thing when you spend as much time together as we have lately!!) It snowed all day until about 2PM and the final total accumulation at the airport was 20.3 inches, of course there was more than that many places. There are 18 wheelers jack-knifed all over the interstate. Fortunately we had a SMALL amount of food here, cause nothing was open anyway! Today the roads were even worse, because the few they did get plowed, turned to sheets of ice. Last night Dr. Martin called us and asked us to try to get to the hospital if we could and if not, to page him. Well, we got out of the parking place but couldn't get out of the lot due to all the ice. We couldn't get up the hill. So...talk about personal service, Dr. Martin borrowed a 4WD and came right to our door and picked us up!!! Today Justin had surgery. He had another long-term IV catheter placed in his chest (now he has 2). They also did another bone marrow biopsy to see if he is still in remission (YES, HE IS!!!) and a spinal tap to check his spinal fluid and to give him a dose of chemotherapy into his central nervous system. Leukemia is known to spread to the nervous system, but his spinal fluid has been clear so far. They did some blood work. His WBCs are coming up very nicely. Last week they were 1.1 and today they were 2.3! His ANC is over 3000 and his platelet count was 49 up from 18!! His hemoglobin was down a bit to 7.0, so will have to go into the pediatric clinic tomorrow to get more lab work drawn and to get a transfusion. Then if all is well, and the roads are clearing, we are going to try to head home for the weekend. This will be the last weekend Justin will be able to leave Durham until he is discharged, which will be in May at the very earliest. Please pray that we can get home. Justin really needs this weekend to prepare for this. He is a bit sore right now from the surgery, but he did very well. And when Dr. Martin brought us home at 530PM he actually got out and shoveled my car out so I could get out easier! We have certainly been made to feel quite comfortable here. Again, we are so grateful to all of you. Please remember to leave a note for Justin, he loves to read them! Thanks! Keep warm...

Tuesday, January 25, 2000 at 07:47 AM (CST)

Well, after a 7 hour trip, Justin and I pulled into the parking lot of the apartment, having found the roads by following guard rails and telephone poles. There were no tracks to follow and definately no snow plows out. We were one of very few vehicles on the road, except for the many that were stranded. Having learned to drive in snowy Pennsylvania has paid off! There was no electricity when we arrived so we snuggled together and kept warm. This morning there is tons of snow, (look out Va Beach, it's comin at ya!) I think the last official report I heard was that there was 17 inches at the airport, which I think was several inches ago! I heard an unofficial report of 23 inches!! They are asking that noone go out without a 4WD vehicle, and they have just said that the National Guard has been called in to help. ...Just like the blizzard of '80 in Va Beach. We are on standby at Duke. I am waiting to hear from Dr. Martin. When I called the hospital this morning, they said that there were no patients OR staff able to get in so far! We had such a busy day planned. I'm not sure what will happen but at least we are here and we are safe. The power is back on, so we are warm also! Hope everyone stays safe and warm. I will keep you posted on things here! By the way, Justin is feeling good. He had a great time yesterday visiting his friends at Lynnhaven Middle School! Love to all...

Monday, January 24, 2000 at 04:52 PM (CST)

The weekend went by much too fast! Justin and I are getting ready to head back to Duke, while Courtney and Paul stay home to take care of Bear! Hopefully, the bad weather will hold off for a while longer so we can get a good head start. Tomorrow will be a very busy day for Justin. I will do my best to keep you all posted on everything. He is dreading going again, but I'm sure leaving tonight will be nothing compared to next sunday when we leave for our 4 month (at least) stay. Keep warm, and keep praying. And write to us! It makes it easier to pass the time! Thanks...

Sunday, January 23, 2000 at 01:06 PM (CST)

I really should proofread some of these entries!
The snow this morning sure looked pretty, but was a bit disappointing to Justin, who was hoping to spend another day riding the ATV. Hopefully, he'll be able to get in some time later today.
Whoever is praying so hard to keep that cold under controll, thanks! Those prayers are working! Justin hasn't gotten any worse, or as bad as me, so that is great. We are still planning to leave again for Duke Monday evening. Hope you are having a great weekend!

Saturday, January 22, 2000 at 05:30 PM (CST)

It would make things so much easier if we could only come home every weekend! Justin is really having fun today. The go-ped has kept him busy, and he has also had a great time riding around on an ATV (all-terraine vehicle, which he wants soooo badly!!) and that has been the highlight of his day! Thanks, Dana! Since the days have been so hard on Justin, we are very thankful to everyone who has maked things easier for us! I bet Justin and Paul will both sleep well tonight! Maybe Courtney and I will get to spend some "special time" together! I am still praying that Justin feels better soon and gets over this cold quickly. I know this weekend will go very fast... hope you all are having a fun time.

Friday, January 21, 2000 at 06:33 PM (CST)

We are HOME!! What a good feeling. It was a very hectic, but informative week at Duke, and Justin says he is already feeling more comfortable about going there for transplant. Today we spent nearly 3 hours with Dr. Martin. He went over the entire transplant procedure, possible risks, side effects, drugs, what to expect, things that could happen but hopefully won't, when to be alarmed and when to be ok about things. He is so nice and Justin is very comfortable with him. Everyone we met was so kind and very personable. I think Paul and I both feel better about things, also. Justin had an appointment with the opthamologist today and that also went very well. We will return on monday, probably late evening. We have to be there bright and early tuesday for more lab work. He will also have the CT scan (they couldn't fit it in today) and an ultrasound, and then meet with the anesthesiologist in preparation for his surgury (catheter (IV) placement in his chest, bone marrow biopsy, and spinal tap) on wednesday. If that goes ok, he will be able to come home again wednesday night or thursday morning for a long weekend. This has all been outpatient for Justin and they do not plan to admit him until the 5th day of his radiation.
This tuesday they will also do a virus study to see if there are any bugs in Justin's system. If there is, everything will be delayed. He does have a few of these cold symptoms that Courtney and I have had, please pray that he clears up by tuesday.
There are so many of you that we need to thank for so many things. Please know how very grateful we are for everything that you all have done for us. Hope you all have a great weekend. Thanks for all the support you continue to show us!!

Thursday, January 20, 2000 at 06:05 PM (CST)

This place is so huge!! I couldn't imagine working in a hospital so large! It's been a really long day today for Justin, well, for all of us actually, but especially Justin. We were at the pediatric clinic at 8:30 this morning. He had some lab work drawn which was great again today. His counts are really coming up! His WBCs today were 1.1 up from 1.0. Yesterday his ANC was 920 so they didn't repeat the part of the counts that they calculate the ANC with. His hemoglobin was 8.1 and his platelet count actually came up from 12 to 18, so he did not get transfused. After the lab work, Justin had pulmonary function tests to see how well his lungs are working. He has a history of asthma, but he did great. He also had an echocardiogram done which was also normal. He had a very thourough exam done, and then Dr. Martin went over a lot of things and answered many questions. After lunch (by the way, Justin ordered 3 sandwiches!) we had to go meet the radiation oncologist. They took some measurements so they will be ready for Justin on the 31st to begin total body radiation. The only thing Justin likes about radiation is the ativan he will get to prevent the nausea! He will receive a total of 9 treatments over 5 days. This will all be done as on outpatient,and then he will be admitted the 5th day to start chemotherapy again. He will get 3 days of chemo with cytoxan... it will make him sick, but hopefully not near as bad as the drugs he received before. All of this will prepare his body for transplant. After the chemo he has one day of rest before the transplant. Then we wait...and pray. We are so thankful that Justin hasn't gotten this cold. Please keep praying he doesn't, cause once they start this treatment, they can't stop it for him to feel better. He has been very strong, very brave through all of this. He is really an inspiration to me. I am so proud of him.
Tomorrow Justin has his CT scan and he also has an appointment with an opthamologist to get his eyes examined. Then we meet with Dr. Martin for another Q&A session and a tour of the transplant unit. Hopefully, we will finish early so we can head home for the weekend. We don't have to back until Tuesday morning, so we plan to enjoy the time with family and friends.
Please keep us in your prayers, and please don't forget to sign the guestbook. We love to read your notes. Thank you for all the support you have given us. We are very grateful to you. God bless...

Wednesday, January 19, 2000 at 03:22 PM (CST)

We have arrived safely in Durham, right along with all the snow here. I brought with me a cold, Courtney generously shared with me instead of Justin; I hope I can keep it away from him! The city was about paralized late yesterday afternoon... Finding a place to eat was quite a challenge, too. Everything was closed, even the mall!! We are pretty well settled into our new "home", a great little apartment about 7 minutes from Duke. Today we had a very early and full day. Lots of labs drawn. Counts are doing well. Justin's WBCs are up to 1.0 from 0.7. I'm not sure of his ANC, but I will get it tomorrow. The only other thing that was back when we left the clinic was his platelet count, which was down to 12, so we know he will be getting platelets tomorrow. He also has several other tests to go through, including a total body CT scan, an ultrasound of his upper chest to check out his blood flow, pulmonary (lung) function tests, and an echocardiogram to check his heart. There was a brief mention of some gall bladder studies, because he had some sediment in his gall bladder on a previous test, and they may need to remove the gall bladder prior to transplant if there is any risk that it could get infected. So...another very busy day tomorrow for Justin, but at least there is nothing painful planned! Today we met so many people and received so much info. Everyone we met, including Justin's doctor, Dr. Martin, was great. They took so much time with us to answer all of our questions. Dr. Martin gave us every reason to be optomistic. He said they have a 4/6 cord blood match so far (remember, cord blood does not need to be a perfect match), but will continue to look for something closer. Transplant day will be February 9th if all goes as planned. We continue to ask that you pray for things go well in preparation for transplant. We will keep you posted!
We are still overwhelmed that so many of you care so much!! Thanks!!

Tuesday, January 18, 2000 at 10:43 AM (CST)

Justin feels great after his blood transfusion. Well, Duke here we come. We are on our way! I will update as soon as we have a phone connected at the apartment. Love to all and God bless... we are so grateful for your continued support and prayers. Thanks!!

Monday, January 17, 2000 at 10:31 PM (CST)

Boy, today was definately a monday... Just one of those days! We thought we would be finished at KD by noon and have the afternoon OFF...hahaha. Justin had a dentist appointment first thing this morning. That went great. Then we hurried over to the hospital, hoping to be out in an hour and do something fun. WE ARRIVED HOME 9 HOURS LATER!! We waited patiently for his counts, visited the nurses on 8B again (Justin loves to bug them!), and returned in time to be greated by Dr. Bevan's "have you been feeling ok?"....bad sign! His WBCs continue to climb, slow but sure. He went from 0.4 to 0.7. His ANC was 399 (400 would have sounded so much better). His hemoglobin had dropped though to 7.0, so Justin needed to get some blood before we left. They have been transfusing him when he gets into the 7 range. They didn't think the folks at Duke would appreciate getting him with a hemoglobin of 5! So, 2 units of blood and several hours later, we got to come home, and I still haven't packed for Duke. We leave tomorrow afternoon with the exciting weather report for Durham...5 inches of snow????? Wish us the best of luck and we will keep you posted! Keep praying! We are grateful...

Sunday, January 16, 2000 at 01:57 PM (CST)

Not really much to add today. Justin is thriving at home, and enjoying every second with a few buddies and his go-ped!! Tomorrow we have a busy day at CHKD and we have to squeeze in a dental appointment to be checked out before going to Duke. It has been a challenge keeping Justin and Courtney at opposite ends of the house. She has a terrible cold. I'm hoping she forgets everything I have taught her about sharing things with her brother! Picture me running through the house every few hours with clorox disinfectant spray... This will be a true test for that air purifier we had to get! Hope you all are having a great day. Thanks for your continued prayers.

Saturday, January 15, 2000 at 08:17 AM (CST)

Hopefully, it's going to be a great day, a bit warmer and sunny today, so Justin can be a normal kid for a change. Yesterday was a great day... I think surely his digestive system is cured, he ate a 7-11 hotdog with chili and cheese! Just the thought of it makes me feel sick! I am finding the hardest thing about being home is that I am worrying about him so much. With his platelet count so low, he could bleed so easily if he should get hit or fall. That, along with all the medications he takes and the fact that he has a catheter hanging out of his chest, make the "normal" part difficult, but I have to admit, he is having a great time. Hope you all have a great day today and enjoy some family time like we will! God Bless...

Friday, January 14, 2000 at 01:17 PM (CST)

Justin is really enjoying his time at home. I wish we could be here longer, as we are losing a couple of these home days to appointments at CHKD for lab work. Jus is feeling so much better. Yesterday he ate fairly well and no nausea or vomiting at all. This morning he woke up sick, but it passed quickly and he has eaten breakfast and lunch with no further problems. We are going to finish the TPN that we have here and then stop it. His antibiotics can be stopped today! At the hospital, Justin even wanted to go up to the 8th floor and visit with the nurses...I think he actually misses them!
Counts today were great. His WBCs were up to 0.4 and his ANC is 336!! His hemoglobin is stable and his platelets are 15, still quite low, but up from 12 so they said to forget about the transfusion for now. We have to go back again on monday for more lab work. Things are looking good!
We have gotten a tentative schedule for Duke. We will leave here tuesday afternoon to go to Durham. Justin has several appointments wednesday, thursday, and friday, and then we can come home friday night for the weekend. We have the same schedule the following week, including a surgery day on thursday for another IV catherter insertion, bone marrow biopsy, and spinal tap. (Pray that he is still in remission!) Then he has to be there sunday the 30th for an early check-in and admission on monday morning. At that time, Justin will begin radiation and chemotherapy in preparation for the transplant which will probably be around the second week of February.
All of you that have children, please give them an extra hug today! They are all so special! Hope you are all keeping warm. Have a great weekend!

Thursday, January 13, 2000 at 09:24 AM (CST)

What a great feeling to be HOME! Personally, I really enjoyed sleeping in my own bed... Justin, crashed on the couch! He says he was quite comfy there, and I might add, he sleeps there often, so I guess it was like being in his own bed! It was a hectic evening, trying to play catch-up with laundry and unpack 6 weeks of accumulated "stuff". The home health nurse came by and helped us get started with home TPN and make sure I knew how to take care of his IV catheter. Gee, should I tell them I am a nurse?? Being home has been great for Justin. He hasn't been nauseated at all since we got here. He ate fairly well for dinner and this morning he had a little breakfast with no problems. Hopefully tomorrow when we go to CHKD they will tell us he can stop the TPN.
We found out this morning that we have to be at Duke next Wednesday. He will have 3 days of testing and then hopefully, we can come home for the weekend and he will be admitted monday morning. There is a possibility he may be admitted that friday. It looks like he will be set up for radiation treatments and then he will get another round of chemotherapy prior to the transplant. I must say, this is all so overwhelming for us, and definately the hardest thing any of us, especially Justin, has ever had to go through. I can't ask often enough to please continue to keep Justin in your prayers. We are so fortunate that he has done so well so far. Thank you all for caring!

Wednesday, January 12, 2000 at 09:41 AM (CST)

I have great news! Thank God, WE ARE GOING HOME!!! Justin is so excited. As soon as he gets his 3pm dose of antibiotics, we are outa here!!! This has been a very long and difficult 6 weeks, and I'm sure the hardest journey is yet to come, but we will make it! Dr. Byrd really surprised us today when she said we could go home. His counts are basically unchanged from yesteday. His WBCs are still 0.2 (27 segs, 10 bands) and his ANC is down slightly to 152, but since he has stayed pretty stable, she decided to let us go. His platelet count only dropped from 13 to 12, which is great, so she decided to hold the platelet transfusion and see what his body can do on it's own. We will come back here friday for lab work, check-up, and possible transfusion, depending on his counts. Because his counts are still so low, he will still be restricted on the number of people he can be around, and he definately can not be around anyone that is sick or who has been around anyone sick, even if it is just a cold. That could be so dangerous for him.
Yesterday was a really good day for Justin. Last night he ate part of a chicken sandwich and kept it down. He will be going home on the TPN (IV feeding)as well as antibiotics, hopefully for only a few days. Today he has not been nauseated at all.
Thank you all so very much for your continued prayers and good wishes. They have been so helpful to us, and we are very grateful. I will continue to keep you up to date on Justin's progress this week and next week, as we venture to Durham to begin the next round of this fight. We will be gone at least 100 days post-transplant. We have not been successful in finding a bone marrow match, but the doctors at Duke feel confident that a cord blood match will not be difficult to find, as they do not be matched as closely as bone marrow. This was not our first treatment of choice, but definately an option. We do want to thank the thousands and thousands (close to 10,000!) who volunteered to be tested. Hopefully, many of you will be matches for others who also desprately need a transplant. Please continue to keep Justin in your prayers. Please pray for Courtney, too, as this will be a very difficult time for her also, being apart from us for so long. Hope you all have a great day!

Tuesday, January 11, 2000 at 03:44 PM (CST)

I know, I already updated this journal today, but I just wanted to share something with you. (You can click on history to see the other entry for today if you missed it.) Dr. Byrd was in to see Justin and said he could go home as soon as his ANC reaches 250! START PRAYING!!!!

Tuesday, January 11, 2000 at 09:47 AM (CST)

Tuesday...we are almost at the 6 week mark. I think that should mean automatic discharge!! Can anyone argue that point??
Yesterday was a rough day for Justin. He was still paying the price for eating too much on Sunday. He was nauseated all day; got sick a few times. He was afraid to try to eat anything at all. This morning he was still nauseated, but hopefully later, he will feel like trying to eat something. Right now he is with his teacher trying to catch up on his school work. Then, I hope he will feel up to some time in the playroom. I need to brush up on my pool skills. He beat me yesterday.
It's a great day for counts!! Justin's WBCs are up to 0.2!! He has, get this, 29 segs and 10 bands!!! His ANC is 160! His hemoglobin continues to come up on it's own. It is 8.6 today up from 8.4. His platelet count is down to 13, but they are going to wait until tomorrow to give him platelets, if they haven't gone up some on their own. Justin actually smiled today when I told him his ANC...great way to start the day! He wants to go home soooo bad!!
Thanks for all of your continued prayers and good wishes. It makes us feel so good to know that so many people care! You are all wonderful friends! Hope you all have a great Tuesday!

Monday, January 10, 2000 at 09:10 AM (CST)

Happy Monday! We had the best weekend! Justin did really well yesterday at home. Going home is his best medicine. He did eat yesterday. Initially, that went so well that he sort of... over did it. By the time he returned to the hospital, he was very nauseated and ended up sick the rest of the evening. This morning he is still very nauseated, which makes him so upset. They are continuing his TPN (IV feedings) so he is getting all the nutrition he needs. We just keep praying that his tummy will start to feel better and he will be able to eat normally again soon.
Justin's counts are still holding. It is a good sign that they aren't bouncing around any more. His WBCs are again 0.1 today. He has 9 segs and 4 bands... these are both good white cells that we have been waiting for. His ANC is 66 today, up a bit from yesterday. His hemoglobin came up slightly from 8.2 to 8.4 and his platelet count is 21.
Justin was feeling too sick for school this morning, so they will try again this afternoon. Days are kind of boring lately, but Justin can probably tell you word for word what most of the good movies are about! We are going to try to venture out to the playroom later, hopefully he will be feeling better by then. Please keep Justin in your prayers. He is getting very nervous about going to Duke.
Hope you all have a great day and a great week! We are so grateful for all of you and for everything you all have done for us... thanks!!

Sunday, January 09, 2000 at 08:52 AM (CST)

We are having a great weekend, hope you all are too! Justin was at home yesterday and really enjoyed being outside. He doesn't have to wear a mask when he is out in the fresh air, so he spent his whole time home outside! Check out the new pictures from his "adventure"!! Dr. Bevan just came in and said he could go out again today for a couple hours. He is doing so well. His energy really increases at home! Yesterday evening Justin's cousins, Elizabeth and Ridgely, came to stay with him at the hospital so mom and dad could have the evening off. Next to Courney, I think they are his favorite visitors! He loves spending time with them. They always make him laugh. When I returned to the hospital, the 3 of them were laying in Justin's bed together watching a movie...they looked so cute surrounding Justin in their yellow isolation gowns! Justin is still having problems with nausea, but it hasn't been as bad the past 24 hours. Pray that he will be able to start eating soon!! He hasn't had anything to eat now for a couple of days... that is if you want to call a few bites eating. He hasn't really had anything to eat for a month! Definately not like Justin!!!
His counts are still doing well! The best news is that his WBCs stayed at 0.1. They didn't drop, so hopefully he is on his way! He still has 11 segs today and his ANC is 55, down from 75, but that just goes to show what difference 1 little cell can make! His hemoglobin is ok at 8.2 and his platelet count is up to 37. Dr. Bevan thinks he must have started making his own platelets! It will be interresting to see how they are tomorrow. It is so unpredictable.
It's been so great reading all of your notes. That is still one of the highlights of Justin's day. Thanks for thinking of us! Hope you all have had a great weekend!

Saturday, January 08, 2000 at 08:25 AM (CST)

WE ARE GROWING CELLS!!!!! Hopefully this is the start of our growth spurt! Justin's WBCs today are just 0.1 (from 0.06) but he has 3 Bands and 12 SEGS!!! He actually has an ANC of 75 today! Finally he has some healthy white blood cells growing. Usually once the ANC starts to go up, things come up pretty quickly... not to say that they won't fall again, but hopefully they will keep climbing. Thanks for all those prayers! Also, his hemoglobin actually came up slightly and his platelet count only fell from 23 to 20, which is great.
Justin had a good day yesterday. He left his room (fully masked of course!) and actually went down to the classroom with his teacher. I know he loved that because he enjoys his school work sooo much! He spent some time in the playroom, some of you may have seen him on TV last night demonstating his pool skills! He managed to convince all of those involved in his care that the "gym" was not therapeutic for him, but that an extra session in the playroom would do wonders. Better yet, he convinced them that another trip home would give him lots of exercise, so... that's where we're going this afternoon!!! He has earned another pass. I'm not sure that it's for good behavior though; they are probably glad to get rid of him for awhile!
Last night was a bit rough. Justin just can't seem to shake this nausea problem. He wasn't able to eat anything at all yesterday, and last night he was so sick that they finally had to call the doctor to get something for him. The typical antinausea drugs don't help him at all, so they usually end up giving him something to relax him and knock him out! This morning he is getting platelets so he can go home. If we weren't going home, they would hold off on that transfusion, but, better to be safe when we are not here.
We are planning to have a great day. The hardest part is coming back to the hospital! Hope you all have a great day too... God Bless...

Friday, January 07, 2000 at 09:59 AM (CST)

TGIF!!! Saturday may be another "pass day"! Justin was really being difficult yesterday, so I know he is feeling a lot better! After he woke up from the benedryl at about 11am, he didn't want to do anything. He was afraid to try to eat anything at lunchtime, although the nausea had finally passed. The afternoon was pretty busy. He had school for awhile, then they came and took him to physical therapy. They called it an afternoon in the gym...Justin wasn't impressed by the Fisher Price equipment and was upset about having to wear a mask, so he proceded to lay on a mat and not move for the next 30 minutes. Great exercise!! We spent some time in the playroom after that and I finally beat him in a game of pool! Some out-of-town family members came to see him after that, which was really good for Justin. I think he really enjoyed playing pool with Travis! For dinner he decided to try eating a little bit. He kept down some rice, so I think he has finally learned that small amounts of food stay down pretty well. No nausea during the night and this morning he is feeling pretty good.
Counts today are ok. His WBCs are 0.06 down from 0.1 but we do have 3 segs! His ANC is still not worth calculating. His hemoglobin is holding at 9.1 and his platelet count is 23. Normally he would get platelets, but since his count didn't rise much from the platelets yesterday, (15 to 23) they are afraid he may be building up some antibodies against them, so they are going to hold off on transfusing again unless he starts having bleeding problems. They are stopping his amphotericin today which is a very strong antifungal drug. This weekend they will be changing his other antibiotics. He is on the most powerful ones available, and they will keep him on some antibiotics until his counts come up, but he doesn't need to be on these strong ones any longer. Keep praying that he keeps doing so well.
Thanks again, hope you all enjoy the day and have a great weekend! Oh, for Bonnie...Justin's go-ped is pictured in the photo album. It's a motorized scooter and he loves it! Your boys would love it, too! I'm hoping to make some changes in the photo album this weekend, so look for some new pictures soon! Please keep those prayers and notes to Justin coming. They are so good for him. Love you all...

Thursday, January 06, 2000 at 08:54 AM (CST)

Well, today is 5 weeks for this hospital stay. When Justin was admitted, we were told 3-6 weeks, so hopefully we will be home soon!! Last time we were told the same thing and he was in for 4 1/2 weeks. This time it is taking longer, because the chemotherapy he received was much more intense. This is so different than the first time around. For those of you who aren't familiar with Justin's history, he had a different (completely unrelated) kind of leukemia (ALL) when he was 4, and went through 3 1/2 years of chemotherapy, but that was so easy compared to this. His treatments were all outpatient and I worked night shift so I could be with Justin in the daytime. We thought this stuff was all behind us, and we were (still are) so proud of Justin, and Courtney too, for how well that went. This time, Justin has AML, and a very rare subtype, which is much harder to treat. He has done so well. The chemotherapy is really tough on him though. This time around he has about every side effect you can think of... fever, vision loss, nausea and vomiting, pain, not to mention a major virus on top of it all...
That brings us to today. It has been a long night here. Yesterday was pretty good. If we could just get past this problem with the nausea. I keep praying that this will pass. He is getting hungry now, which is great, but food hasn't been his best friend. Since he did so well with his pasta the night before last, he thought he'd have some for lunch. Well, that came back up shortly after he ate. Then last night he was hungry again, so he and dad decided to eat BIG! He had some chicken and rice, way too much, and thought it was great! I returned to the hospital at 11pm and got to stay up most of the night with Justin feeling miserable and being sick!
Counts are up again today! Thanks for those prayers! They are working! His WBCs are back up to 0.1 from 0.05 and his ANC is less than 1. His hemoglobin is up to 9.8 from 7.4 thanks to the blood yesterday. His platelet count was way down to 15 from 30, so he has already received platelets (and benedryl of course) this morning. Hopefully he will wake up by noon so he can have fun doing some work for school!
Last night Justin and I read all the entries from the guestbook again, and he enjoys those so much! Please sign in!!!
Have a great day, and thanks for taking the time to think of Justin and pray for his recovery!

Wednesday, January 05, 2000 at 11:19 AM (CST)

Wow, I just spent 30 minutes updating this journal, only to get bumped offline right as I was about to press enter! Anyway...Happy Wednesday! It is really hard to believe that it's the 5th of January already. They were hoping that we would be at Duke by the second week of January, but since we are still here, and not moving very quickly, I guess that won't happen. I have requested that Justin has at least a week at home before we head south to Duke. I think the end of January is more reasonable. We still haven't heard anything yet about the potential donors that are being worked up. Hopefully, we will know something soon. Justin is getting very anxious about going away. I pray we have a very positive experience there. Everyone here at CHKD has been so wonderful to all of us.
Justin slept most of the day away yesterday thanks to the benedryl he received prior to his platelets. When he woke up, he did feel much better. The nausea was gone and he was complaining of feeling hungry! His request for pasta with alfredo sauce was granted by mom and he ate quite well, and actually kept it down!!! He even wanted seconds, but we thought we shouldn't push it. He was a little queasy this morning, but really is feeling pretty good.
Justin's counts are down again today. His WBCs are 0.05, down from 0.1, (no segs) and his ANC is 0. His hemoglobin is down to 20 today so they are finally going to give a couple units of blood today. His platelet count is up a little from the platelets he got yesterday, but they only went up to 30 from 20, so he will probably get more tomorrow. Isolation is still in effect, and we are still limiting visitors...sorry!
School has resumed here, too. Justin is behind since he was so sick in December, so they are doing double time now to get him caught up, against his wishes. It's so hard for him to work on his assignments when he is getting all this medication that makes him so tired.
Thanks again for so much support. It is such a great feeling knowing that so many people really care. Hope you all have a great day....

Tuesday, January 04, 2000 at 09:16 AM (CST)

Yesterday was another great day for Justin. He was smiling, laughing, giving the nurses a hard time, and basically just being obnoxious! I was happy to see that for a change! Dr. Bevan is here this week, and he lets Justin do a little bit more than the other docs. He gave the ok for Justin to go to the playroom as long as it was closed to other kids, so Justin was able to beat Uncle Bill in a game of pool! Hopefully today he will be able to go again, or who knows...maybe another trip home???? Are we asking for too much??
Justin woke up today very nauseated which seems to be the morning routine. He's had a rough time with that this morning, more than he has been having for the past few days. Last night he tried to eat a little bit of chicken and rice, but that didn't last either. I'm anxious to see if this improves without all the antibiotics, but I have a feeling he may have to go home on the TPN (IV feeding) until he is able to eat. He sure doesn't need to lose any more weight.
Thank you for all the prayers for WBCs!! Please don't stop, they are working! Today Justins counts are up a bit... His WBCs are 0.1 (up from 0.03). He still has 1 seg, that number isn't really important right now, as long as there are segs. I guess it depends on how much time the tech is willing to take in counting. The other numbers are done by machine, so they are more accurate. His hemoglobin is the same as yesterday and they never did give him a transfusion, so that is holding pretty well. Platelets are 20, down from 40, so he is getting platelets again right now.
Justin especially enjoyed all your notes yesterday, even the ones from those of you we don't know! We are all amazed that so many people care! Thank you for so much love and support!
Hope you all have a great Tuesday! And to my coworkers...you are the greatest! I miss you all and can't wait to get back to work! (Gee, I never thought I'd say that!) Love to all of you!

Monday, January 03, 2000 at 08:15 AM (CST)

We had such a great weekend! Hope you all did, too! The few hours we had away from here were wonderful. Yesterday, we went home for an hour and Justin didn't do anything but take a nap in his own bed! It was the best medicine he could have had!! Emotionally, he is doing so much better. He is feeling so good now, which makes it even harder to stay in this room, where he continues to be on restrictive isolation. It is a little easier during the week. There is a child life specialist here who's great. She usually gets Justin involved in some fun activity which almost always involves making some kind of huge mess. She has learned to TELL him what she has planned for the day, rather than asking if he wants to do something and hearing him say no. Justin is still having problems with nausea...i can't wait for that huge appetite to return!!
We had the best news this morning! Justin's WBCs are actually down from 0.04 to 0.03, but WE HAVE 2 SEGS!!! Those are the healthy white cells we have been waiting and praying for!!! His ANC is, well, it isn't 0...but it is less than 1. But, that's a start!! His hemoglobin is down a little more and will probably get some blood today. His platelets are up to 40. Maybe this will be the week that those cells start multiplying. Once they start, they usually jump pretty fast.
Hope you all have a great day... Thank you again for all your thoughts and prayers. They mean so much to us.
Courtney, we love you sweetie!!!

Sunday, January 02, 2000 at 12:01 PM (CST)

Happy Sunday... hopefully all those who over celebrated the New Year are feeling better today! Justin is feeling really good. First thing this morning he complained of being bored and said he wanted to go home again. (This could be habit forming!) Yesterday was really great for him being able to get out of here for awhile. We actually drove home because he wanted to see Courtney and to make sure his Go-Ped mechanic was properly doing his job!!! It was so good to see him smiling! He did really well at home and the time flew by much too quickly. When Dr. Owen came in today, he asked Justin how he felt and he said better than yesterday and Dr. Owen knew right away what he was hinting at!! So....he said we could go!! He has to get platelets before we can leave and we have to be back in time to get his next dose of antibiotics, so our time off for good behavior will be even shorter than yesterday, but Justin is so excited. We have been blessed with beautiful weather this weekend, which really helps. It's doubtful that we will have the same opportunity during the week, but maybe his counts will start to come back and we can go home soon! He is still having some trouble with nausea and vomiting, but usually just in the morning when he has gone all night without the medication to prevent it.
His counts are lower than yesterday. It is still really important for Justin to stay away from a lot of people and from anyone who may have a cold or may have been exposed to someone with a cold. His WBCs today are down to 0.04 and his ANC is 0. His hemoglobin is down and he will probably need a transfusion tomorrow or tuesday. His platelets are 25, which will go up with the platelets he gets today.
Enjoy this beautiful day!! Keep praying for healthy WBCs!!!

Saturday, January 01, 2000 at 10:23 AM (CST)

HAPPY NEW YEAR!!! Hopefully 2000 will be our year! Looks like Y2K came in without too much of a big deal...
Justin is feeling great today. Yesterday was a good day too. Justin's party in the room lasted about 15 minutes, had to wake him up for the celebration!! I guess he isn't much of a party animal! Dr. Owen just came in and told us since Justin is feeling so good today, he is going to give us a "pass" to leave the hospital for a couple hours!!! Justin is thrilled! It won't be much, but to get out from behind these 4 walls will do him so much good! He won't be able to go anyplace or see anyone because of his counts being so low, but he doesn't mind. He is allowed to be outside in the fresh air and it is supposed to be a beautiful day. Wish us a great day and pray that he doesn't get sick while we are gone!
Counts today are still pretty low, but his WBCs are 0.08 up from 0.04 and his hemoglobin stayed the same. ANC is still 0. He got platelets this morning so his platelet count is now up to 48. Keep praying for healthy WBCs!!
Here's wishing you all a wonderful New Year!!

Friday, December 31, 1999 at 12:02 PM (CST)

Happy New Year!! Looks like we will be having a little party in our room... Justin wants to celebrate. I know this isn't what he had in mind for New Year's Eve, but... one day at a time....
Yesterday was a really good day for Justin. He is feeling so much better. No nausea now. He has been taking his medication without too much trouble. He is drinking like a fish and kept down his soup and crackers. He was so hungry last night! Yesterday, Courtney stayed with Justin all afternoon and he really enjoyed his time with her. She even got him to take his medication! When I returned, they were even laughing. Laughing is very rare these days!
Well, we haven't made much progress with counts. That's about the only thing that's keeping us here now. His WBCs today are 0.04 up from 0.03, hemoglobin is down a little, but not low enough to require a blood transfusion yet, his ANC is still 0, and his platelet count is 31, down from 49. We still have to maintain the strict isolation and he is still confined to his room. That is rough on him. We are so sorry when we have to turn away visitors, but if we do, please understand that it is what is best for Justin.
Well, I will keep this short today. Thank you again for all the continued prayers and good wishes. I hope that you all have a wonderful New Years. Stay safe...and have a happy and healthy 2000!!

Thursday, December 30, 1999 at 12:00 PM (CST)

Justin is definately feeling much better. Hopefully, our prayers are being answered! He slept a good part of the day yesterday. When he woke up, the nausea was much better. He had a great visit with his cousins, he really enjoyed seeing them. We have been keeping visitors to a minimum because of the strict isolation he is on. The fewer people that come into his room, the better it is for him while his white cell count is so low. Today has been good so far. He actually woke up feeling pretty good. He has eaten some soup and a cracker with no nausea! (amazing the little things we get excited about!) Dr. Owen came in and examined the rash, which he had planned to biopsy today, but thought it looked better so canned the biopsy, much to Justin's relief. No fever now for about 4 days. They may be able to stop a couple of the antibiotics in a few days, which may also help to improve the nausea. Courtney is here today to spend some time with Justin. He really loves when she is able to come. She is so good for him! We are so fortunate to have such great kids! I can't begin to tell them how much I love them!
Well, no improvement today in his counts... his WBCs are 0.03 down from 0.04 and his ANC is still 0. Still no segs and lost the monocyte :( but Dr.Owen is convinced that he is rock stable right now and he should have some cells in the next couple days. His platelet count is up from 26 to 49 after receiving platelets during the night. His hemoglobin is down a bit, but still pretty stable.
All Justin wants to hear is "TIME TO GO HOME!!!" Keep praying!! Thank you for all the kind words to Justin and our family in the guestbook. We are grateful for your prayers!
Hope you have a great day!

Wednesday, December 29, 1999 at 08:31 AM (CST)

Yesterday was by far the best day so far. Justin felt pretty good, he is just pretty down right now realizing that New Years Eve is 2 days away and he is not even close to being able to go home. He has been having some breakthrough nausea and vomiting, but not nearly as bad as before. Today I plan to ask the GI doctor why he is still having this problem. The medication has helped a great deal, but things are still not moving through. He has been taking liquids now for several days, not much, but tolerating them fairly well. Last night he tried some white rice (he is allowed to eat anything bland) and we thought it was going to stay down, but several hours later, he lost it. He feels sick this morning. He woke up nauseated and the medication has not worked yet today. I keep praying that this will get better, he is so frustrated that he can't eat. It is getting harder and harder to be here day after day and try to keep him entertained... Oh, by the way Danny, thanks for the N64 games, they have helped!!
His WBCs are up today to 0.04 (from 0.03) and his ANC is still 0, but today he has a monocyte!! There are several types of WBCs and the few he has had are lymphocytes.... only lymphocytes. We are anxiously awaiting SEGS... those are the good fighter cells!! His hemoglobin is still holding strong which is great. His platelet count today is 26 down from 46, so he will need platelets today or tomorrow. He has not had any fever now for a couple days. Repeat blood cultures have been negative, so they think the positive culture he had was probably a contaminant, but they treat it anyway just to be sure.
Yesterday they had physical therapy come in and they brought an exercise bike into the room, hoping Justin will use it. (help, Uncle Joe!) He says he will try it today, but it would be really nice if they would bring in a go-ped instead. Then i KNOW he would exercise!! There have been some studies done that show exercise helps to increase the WBC count quicker, but Justin has his doubts about that!
Well, here's hoping you all have another great day. Dr. Owen is here, so I'll sign off for today. Thank you again for your continued prayers...don't stop!! And thanks again for all the notes and words of encouragement for Justin in the guestbook.

Tuesday, December 28, 1999 at 12:04 PM (CST)

We are definately having a better day! Yesterday was good, I'm sure Justin would argue that fact, but I know he is feeling so much better. He slept a good part of the day because of the medications they give him so he doesn't have reactions to things, but when he was awake, he really felt pretty well. He is a bit depressed, but who wouldn't be when they've spent Christmas in the hospital. New Years is even a long shot and he knows it. He was a bit nauseated this morning, but it has passed with the medication... Right now, since he couldn't go to the play room, the play room came to him. Jo is helping him paint, and he has been laughing the whole time. More paint is on the floor than the paper, but, who cares!
We still need those prayers for WBCs!! His white count this morning is 0.03 up from 0.02 and his ANC is still 0. His platelet count is 46 and is hemoglobin is unchanged, holding strong! We still have no news about a marrow match for Justin and they are talking more about the possibility of doing a cord blood transplant. We are still hoping to encourage people to be tested for bone marrow, which can be done here at the Red Cross, and funds are available for that here by mentioning Justin's name. Please ask everyone you know to be tested!!! Locally here, anyone can call 1-800-MARROW-7 for info. Anyplace else can call 1-800-MARROW-2 for info. We have been excited to hear that there have been people from out drive contacted by the Red Cross for further testing, as they may be a match for someone. We don't know if it is for Justin or someone else, they don't tell that info. Please continue to remember Justin in your thoughts and prayers each day. Just being in the hospital is so hard on him.
Hope you all have a great day!

Monday, December 27, 1999 at 11:33 AM (CST)

Things never seem to get boring around here, that's for sure! Justin had a good day for the most part yesterday. He was being a little stubborn about taking some of his medications but no problems with nausea or vomiting and no pains. He got 2 units of blood yesterday and did well with that also. Then last night he got a nose bleed. He had this problem last time also when his platelet count was low. They were able to get that stopped pretty quick, but then he had another one again later. After the blood, they started one of his antibiotics. They always medicate him with benadryl for this so he doesn't react to it, but he did anyway. He had a horrible looking purple rash covering his body and he was shivering so bad that the whole bed was shaking. Some demerol stopped that and he was able to go to sleep and get the rest of the medication. This morning, one of the blood cultures that they drew when he had that very high fever, came back from the lab. It was positive, meaning he may have some bacteria in his blood. Now they are changing the antibiotics AGAIN. He also has developed some small red bumps on his face and arms. The doctor said it could be a skin infection, they will watch it for a few days, and if they don't go away, they will biopsy one of them to see what they are. This morning, he got nauseated and vomited one time, so he quickly learned that he couldn't play games with his medications! He is feeling pretty good now.
Justin is going to get some platelets today because of the nose bleeds he's had. His platelet count of 65 yesterday was only 31 today. His WBCs are 0.02 and his ANC is 0. It isn't unusual that it is taking so long for WBCs to grow, but keep praying for that! A few WBCs would help prevent all the other problems!!
My mom and dad left today to return home to PA. It was a great help having them here. We are so grateful for everyones help. Everybody has been so good to us in so many ways. Thanks....
Hope everyone has a good day! Keep warm!

Sunday, December 26, 1999 at 09:18 AM (CST)

Hope everyone had a great holiday! I'm sure that the Christmas of 1999 won't be remembered as one of our best, but we are thankful that we got to be together. Yesterday morning was so bad for Justin, he was so sick. I think today will be much better! The new medication that the GI doctor put him on seems to be working very well and he is no longer nauseated. He hasn't vomited since 11am yesterday!! They gave him some medication to help him sleep for awhile also, and by the time he woke up, he was feeling so much better. Last night he was awake and in good spirits, watched a movie until he fell asleep, and then he slept all night! He has been drinking also and tolerating that well. I can't wait for him to ask dad to stop at Subway on his way in to visit!! But I guess we won't push that. He is allowed to eat something though if it is very bland. He is still pretty tired, and I think he is trying to play catch-up today with his sleep! In case anyone has been trying to call into the room here, we have been keeping the phone off of the hook so he can rest, otherwise it rings nonstop, and he hasn't felt like talking to anyone for several days. We do appreciate everyone's concern though.
No more fever today. I think it was up once yesterday but it is back down this morning. Maybe if it stays down, they'll let him venture over to the playroom again for awhile if he feels up to it. Justin's platelet count is up to 65 today after getting them yesterday. His WBCs are down to 0.02 and his ANC is still zero. All we need now are healthy white cells so Justin can come home!!! Please keep praying for that! We are trying to be patient but it is hard!
Thank you again for keeping us in your thoughts and prayers. We are so grateful for everything you all have done for us. Please keep your notes coming to Justin. They usually provide about 30 minutes of entertainment for him which is a big deal! We hope you all have a great day!

Saturday, December 25, 1999 at 12:38 PM (CST)

MERRY CHRISTMAS EVERYONE!!!! We hope you are all having a wonderful day with your families. This morning, Paul, Courtney, Mom, and Dad came to the hospital and brought Christmas to Justin and me. Courtney helped him open all of his gifts. Santa was very generous! I think the full body wet suit was a hit...I believe I even saw a smile! And SNOW in Virginia Beach on Christmas!! That was pretty amazing!
Justin had another rough night. They started him on a new medication yesterday that is given at night, and they have to monitor his blood pressure and temperature very closely, so he was awakened every 30 minutes. Overall, I think he is doing better, but the nausea and vomiting has been so hard on him. They think he has developed a severe gastritis (inflamation of the stomach)which is causing this problem. He is even bringing up some blood because of a low platelet count, so they are going to give him platelets today also. His count went from 41 down to 22. There was a little talk of sending him to ICU, not because he is doing poorly, but rather because there are some medications they can give him there where they can monitor him closely, which they can't give here. We are not at that point yet. They now have a GI doctor seeing him and hopefully he can get this problem under control. The nausea is the only real problem now...oh, and white blood cells!
By the way, his WBC's went up today from 0.02 up to 0.1!! Quite a jump! They could fall again by tomorrow, but they could be on the way back up!! Keep praying for healthy white blood cells!!!
Thank you all again for everything. We have been so amazed at the outpouring of love and support we continue to get every day. We hope this is a very happy holiday for everyone.
We wish you much love and good wishes for a very Merry Christmas,
Paul, Susi, Courtney, and Justin

Friday, December 24, 1999 at 09:11 AM (CST)

Hard to believe it is Christmas Eve day... seems like it should still be early fall, these days just seem to run together. Not much has changed here since yesterday. Justin wants to go home so badly. Now he is hoping to be home for New Years Eve. Hopefully we will make it by then, but unfortunately, we can't make him any promises. His day yesterday was ok... the morning fever went away with some tylenol and stayed away most of the day. He was able to go to the playroom again and this time I won the pool game!! (luck, not skill!) The fever returned last night and by this morning you could probably fry an egg on his cute little head. His fever was up to 105 at 8am. Unfortunately, with a fever this high, he will be restricted to his room again because of the danger to the other kids here. They are starting him on some new antibiotics to make sure they are covering any bugs that could be growing. So far the cultures are all still negative. He is still having trouble with nausea. He can't keep anything down at all which is so frustrating for him. He still tries to drink. His mouth is completely healed now. They are going to stop his TPN (his steak dinner in liquid form via the IV) today to see if the nausea gets better. Sometimes, though rarely, the TPN can cause nausea. None of the medications they have given him for it have helped.
His WBCs today are still 0.02, his ANC is 0 and his platelet count is 41. If his body is trying to fight off an infection, it will be even longer for his counts to start going up. Normally when someone is fighting an infection, their WBCs will go up, but since he doesn't have any to start with, that won't happen. His hemogloblin is way up today but that is probably just because of the fever. He was probably a little bit dehydrated.
They have promised me that they will be giving him a great Christmas here. The hospital has had thousands of gifts donated from toy stores, etc. They have a "sack full" of gifts for each child. I know he would rather be home, even if that was his only Christmas gift, but it is more important to get him well!
I hope everyone has a wonderful Christmas. Enjoy your time with family and friends. Thank you for your continued thoughts and prayers and keep those messages coming for Justin! He really enjoys knowing that so many people care for him. Keep praying...

Thursday, December 23, 1999 at 07:26 AM (CST)

Yesterday was a fair day. They finally let Justin out of the room with a mask on and we ventured to the play room where he beat me in a game of pool. He got really tired, but it was great for him to get out of the room! They even disconnected all of his IVs so he was unattatched for awhile! We stayed for about 40 minutes and he did great. He's hungry. He wants to eat so bad and actually tried to last night, but he still gets nauseated so easily and ended up losing everything he tried to get into his tummy. His mouth sores are so much better. Thay don't seem to bother him at all anymore. The fever returned at 4am today. He is still on 3 different antibiotics but they have recultured everything to make sure he doesn't have an infection... but the fever has probably eliminated the possibility of getting a "pass" to leave here for a few hours on Christmas. It was a long shot anyway.
Justin got platelets yesterday so his platelet count jumped up from 20 to 64. He reacts so badly when he gets platelets that they have to knock him out with benedryl, so he took a little nap that lasted for hours yesterday...he slept from late afternoon until about 8pm, so then he was awake until about 2am!! We got special permission for Bobby to spend the night last night, so emotionally, that was really helpful to Justin. It was so good to see Justin smiling and having some fun even though he was feeling bad!
Well, his WBCs are down to 0.02 and his ANC is still zero. It could be several days before they start to go up again, but we are hoping for sooner rather than later. Keep praying for healthy white blood cells!
Is everyone ready for Christmas?? I FINISHED my shopping yesterday! That was record time for me! My dad arrives in town today. PapPap will be great medicine for Justin! We love you all....

Wednesday, December 22, 1999 at 09:03 AM (CST)

A few steps forward, a few steps back, but I think we are making some progress overall. Yesterday Justin really had a pretty good day. He did get 2 units of blood and napped for about 3 hours, but his mouth sores are so much better and he was able to eat some soup. He watched a movie and played on the computer for awhile, which he hasn't done for a few days. The nausea and tummy pain returned last night, but not near as bad as before. In fact they are stopping his morphine pump today. He hasn't had to use it lately.
The cardiologist came in and said his heart was completely normal, with no damage from the drugs. His fever has stayed away too. We are hoping today they will change the isolation he is on, and allow him some more time in the playroom.
He will probably have to get platelets today. His count went from 31 down to 20. His WBCs went from 0.1 down to 0.04 and his ANC is still 0.... Looks like it will be awhile before we get to go home :( Please pray for those healthy white blood cells!!!!
The staff here has been really great and they are doing everything they can to try to lift his spirits. It does my heart good to see him smile. Smiles are rare these days!! Courtney, Jussy misses and loves you like crazy!!! So does daddy and mom... Hang in there sweetie.
Hope you all have a great day. Thank you for taking the time to check on us leave us notes! And thank you for your continued prayers.

Tuesday, December 21, 1999 at 08:14 AM (CST)

One of the highlights of each evening with Justin is sitting down with him and reading all the guestbook entries that you all have written. He really looks forward to it. Thank you again for all your prayers and words of encouragement to him. It helps him a lot.
Yesterday was actually a pretty good day in general. He is still pretty down about probably being here for Christmas. He spent most of the afternoon and evening with grandma while I tried to finish some things at home and do some shopping. He is still very uncomfortable with mouth sores, which makes it very hard to eat or drink anything. He's hungry but the pain is much worse when he tries to put anything in his mouth. No more problems with the nausea, thank God!
Yesterday they also put him on a monitor to watch his heart rate. The other day when his fever was up, he had a few brief times that his heart rate was apparently over 200, so, since some of the drugs can be toxic to the heart, they just want to check it out to be sure it is ok. He is getting an echocardiogram done right now, which is an ultrasound of the heart. They have already taken the monitor off and they will just check it periodically now.
He will be getting some blood today. His hemoglobin dropped from 11.3 down to 7.8. Usually he feels pretty good after he gets blood so hopefully today he will too. His WBCs were 0.1, up from 0.02!!! His ANC is 0, and platelets are 31 today. His total cell count has doubled from 5 to 10...that's a great start!!
Hope you all have a good day. Please keep those prayers coming....

Monday, December 20, 1999 at 10:49 AM (CST)

Yesterday was probably one of our most difficult days. They think that Justin had a reaction to one of the drugs he gets for nausea. He became so restless and angry and we couldn't seem to do anything for him to make him feel good. He was very emotional and upset all day. The good thing is that even with holding the nausea medication, his tummy seemed to be feeling better. His fever has stayed away and his cultures continue to be negative. By last evening he was actually complaining of being hungry. He had some broth and a popsicle which both stayed down, so today he is allowed to start eating some bland food if he feels like it. He still has some pretty painful mouth sores. Bobby came and stayed with him for awhile last night and he was actually pleasant and some fun for awhile! Thanks Bobby!
His White blood cell count today is 0.02 and his ANC is 0. His platelet count jumped way up to 45 after getting the platelets yesterday and his hemoglobin jumped up on it's own, so that is good. Hopefully he will start making WBCs soon! He even slept almost all night last night which means I got to sleep too!! Keep praying! I think those prayers are being answered one problem at a time...
Justin loves reading all your notes. Thank you!

Sunday, December 19, 1999 at 11:53 AM (CST)

Wow, the past 24 hours have been kind of tough. Justin is still feeling so sick, and they are still hoping it is just residual effects from the chemo. He has had a high fever for the past day, which really makes him feel wiped out, but today at noon he finally has no fever. Hopefully now he will start to feel better. So far all of his cultures have been negative so they don't think he has an infection. His white cell count today is 0.01 and his ANC is 0. He is kind of depressed about that. His platelet count was 12 today so he has already gotten platelets and did pretty well with those, just a few hives. The nausea seems to be a bit better but he still can't eat or drink because of all the sores in his mouth. Getting there very slowly but hopefully he will start to progress more...it is so hard to see him feeling so bad. Thank you for all your prayers.

Saturday, December 18, 1999 at 09:44 AM (CST)

Justin had a pretty good day yesterday. He went to the play room for about an hour and played some pool and a few games. His tummy is feeling some better, but he is still on the morphine pump to control the pain and still having trouble with nausea and vomiting. Seems like every time he moves, he gets sick. Same thing happens if he tries to drink something. He is very frustrated about that. They aren't sure why he is still so sick, the chemo should be well out of his system by now. They are talking about maybe having to do an endoscopic exam so they can look into his tummy and see what's going on in there. Every time they give him something for the nausea, it knocks him out for a few hours. Hopefully it will get a little better each day. Christmas is a week away and it is looking doubtful that he'll be home by then. His white cell count today is 0.02 (wow)and his ANC is still 0. His platelet count is 22 which is very low, but they will wait until tomorrow to give those because he reacts to them so severely. He enjoys reading the notes you all send, thank you for all the encouraging words and your prayers... Please keep him in your thoughts and prayers each day!

Friday, December 17, 1999 at 09:38 AM (CST)

Justin had a good night. He kept me awake until 3am but he was feeling good and playing on the computer. His pain is much better and they are going to start weaning off the morphine today to see how he does. He is still having the nausea and vomiting and they don't know why that is lasting so long, but it is getting a little better. His white cell count is still zero. His ANC (a number that also has to do with his white cell count) is still zero. Both of those numbers have to be on the rise before they will even begin to talk of going home. He wants to be home for Christmas so bad! And they are hoping to have him ready to go to transplant in early January. He is getting a unit of blood today and they are also talking about letting him leave the room later for a session in the play room. They close it off to other kids since he is on isolation. He has gotton into air hockey, but he likes to cheat!!
I think today I am going to get a chance to START my Christmas shopping! Hope you all have a great day!

Thursday, December 16, 1999 at 05:47 PM (CST)

After a couple days of really bad abdominal pain, Dr. Bevan was concerned about the possibility of typhlitis which can be a severe ulcerative bacterial infection of the colon. That would be dangerous for Justin. They started him on a morphine infusion for the pain and a CT scan showed no typhlitis, which was the best news we could get. This afternoon, he feels so much better and the fever is gone. He is with grandma right now and more like Justin! They aren't sure what all the pain was from, but as long as he feels better, I don't really care!! Thanks everyone that helped with the military drive today. I think a couple more thousand folks have been added to the National registry!

Thursday, December 16, 1999 at 10:50 AM (CST)

I hope this will make it easier to keep you all up to date on how Justin is doing. The second round of chemo has been pretty tough on him. He has had so many side effects from the drugs. He has a lot of mouth sores now and can't eat or drink, to go along with the nausea, vomiting, and abdominal pain. We are now trying to keep him sedated and comfortable until he gets through this. His white cell count is still zero, so infection is still the riskiest thing for him right now. Hopefully he will feel better soon. Thanks for all your prayers and good wishes.

Thursday, December 16, 1999 at 10:15 AM (CST)

Thursday, December 16, 1999 at 09:57 AM (CST)

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