History

Journal History

Friday, March 6, 2009 11:19 AM CST

I haven't written in a long time. Have been busy around here. I have had 2 back surgeries and I still have alot of pain and don't get around very easy. My daughter Kaitlin has been sick a lot this year and on Monday is having surgery to get her tonsils out. I am more of a wreck and more nervous than she is. She is not feeling well again today so we hope we can get her better before Monday morning so she'll be able to have the surgery and get it done. Say a prayer for her. Thanks. My son Eric is working a lot and going to school, so he is real busy. I don't like them growing up so fast. I seem ot worry more now that before about them. So much bad out in the world and it scares me to death. Justin is always in my heart and still miss him terrible. There isn't a day I don't wish I could bring him back and have him here with me. Prayers to you all.

Sunday, August 3, 2008 10:33 AM CDT

Yesterday was Justin's birthday. He would of been 16 years old. It was a hard day to get through. I would of been taking him to go get his permit for driving. He would of been so excited and quite a young man with that beautiful smile of his. I can't stop thinking of everything that Justin and I would of shared if he was still here with us. I miss him so much the heart ache will be with me forever.

Happy 16th Birthday Justin!!!

I love you and miss you so much every second of every day!!!

We lit candles for you and decorated your sight and let off 16 balloons to you in heaven. We have our memories and cherish them and you will always be in our thoughts and heart forever. We love you!!!!!

Wednesday, July 23, 2008 8:31 AM CDT

I haven't been on in a long time. I have back problems and don't get on the computer much anymore. Justin's birthday is coming up soon. He would be 16 years old on August 2nd. Doesn't seem like it's been 6 years since he's been gone. I still miss him as much as ever and my heart still breaks.
Kaitlin and Eric still have a hard time dealing with him being gone from us. I worry awful about them all the time. Kaitlin we still have to get blood work on and now she has cysts on her ovaries and is in pain a lot from them. She goes Monday for a ultra sound to have them checked again. Eric is doing ok but still has awful headaches and bloody noses from his cyst on his brain. We keep watch of that also. He also talks with a counselor to help him deal with things.
We still try to go on with our daily lives but Justin is always there in our hearts. We just try and keep really busy, sometimes to busy. I am unable to work know because of my back and fibromylagia. I am in pain all the time and live my life with pain killers.
On August 2nd if you think of it please light a candle in memory of my precious angel Justin. He touched so many people and their lives and it makes me happy to know when someone remembers him and lights a candle in his memory, especially on special days as Christmas and his birthday. If you do thank you so much, you don't know how much it brightens my heart.

Friday, September 14, 2007 11:01 AM CDT

Thank you to all who sent prayers for Lisa. Lisa had been released from the hospital and was put on seizure medication. She then talked with the surgeon on her options and had scheduled the surgery for Sept. 7th. She went in and had her surgery. It was a long surgery and long day for my sister-n-law and brother. Lisa came out of the surgery ok. They don't think it was a tumor but some type of blood clot. It wasn't attached to any nerves which was good and they think they got it all out. They have sent it away and are waiting to here on that. Lisa has had a few rough days since the surgery. She has had tremondous pain in her head and has felt nausea and can't eat quite yet. Mary is hoping that she will be on the road to recovery soon. They don't know yet what caused all of this but maybe they will be able to give them all more news soon. He husband and kids are holding up ok but they all could still use prayers. Thsi has been such a rough time for them all and has been very stressfull. Please pray for Lisa and her family and also Mary and Dean. Thank you all so much !! I know your prayers have helped so much!!

Saturday, August 4, 2007 7:50 PM CDT

I am asking for many prayers. My brother Dean ( who donated part of his liver to my little boy Justin ) and his wife Mary need many prayers right now. Mary has a daughter named Lisa ( her only child ) who has been diagnosed with a tumor on her brain. She is having severe seizures. She is going to see a neurosurgeon on Tuesday for consult about surgery. She was just released from the hospital Saturday. She has a husband and two young girls ages 7 and 4. My sister-n-law on Saturday collapsed from faigue, dehydration and not eating. She was taken to the ER. The stress of what is going on with her daughter has been a lot on her. Please pray for Lisa and her family and my sister-n-law Mary and Dean. Thank you and you contact me if you would like to send a prayer witha note to my e-mail for them at
marybryce2002@aol.com and I will make sure they get it. If you would like to send a quick note you can send it to my e-mail also and I will print them all out for them. Thank you!!

Wednesday, August 1, 2007 6:11 PM CDT

Happy 15th Birthday Justin!!

Justin, as our hearts hold you so close everyday
It's still very hard going on
without you here with us each day

Uncle Dean gave us more time with you
with the transplant and his gift of love
and we can never thank him enough for that special love
and cherish every second we had with you
each one of those days

We wish we could
see that bright smile of yours
and hear your laughter
and be able to hold and kiss you
just once, for one more day

We hold your memories close to our hearts
and cherish them more each and every day
We love and miss you
more and more each day

On your birthday on August 2nd
it will be especially hard
we will light 15 candles, send you balloons
and send you our love.

We love and miss you so much!!

Happy 15th Birthday Justin!!

Love, kisses, and hugs and forever love,
Mom, Dad, Eric, Kaitlin

Wednesday, August 2, 2006 3:03 AM CDT

Happy 14th Birthday Justin!!!!

Today you would be 14 years old. It breaks my heart to know I can't give you a hug, hold you and kiss you and tell you Happy Birthday in my arms. To hear your beautiful voice and laughter and all your dreams and wishes. My heart aches every day with out you hear with me and that is a heart ache that will be with me forever that I've had to learn how to live with daily. It's hard going on with out you, just getting through a day with out breaking down and just wanting you back. I try and think of what you would look like now. How big you would be. All these questions and the heart ache that will be with me forever is so hard, especially on holidays and your birthday. I just want to say Happy 14th Birthday to my special angel who is always in my heart. Justin I love and miss you so much. Happy Birthday my son!!!!!!!!!!

Love,hugs and kisses,
MOM, DAD, ERIC, KAITLIN, and RAY

oooooooooooooooooooooooooooooooooooooooooooooooooooooooo
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Tuesday, August 2, 2005 6:41 AM CDT

Justin, our hearts are still broken
and we still shed our tears
wishing this never happened
to our little boy so full of life and cheer

I wish there was a way
to make this nightmare go away
It makes it so hard to go on each day
and try and smile and say everything is O.K.

When really deep down inside
I feel like my heart has been ripped away
and I shed my tears when I'm alone
and keep my heart ache to my self
I know I will never be the same again
because I lost my little boy who I so adored

Now I just have my memories of you
And I cherish those more each day
I love you and miss you
every second of each day.

Happy 13th Birthday Justin!!!!!

We love you and miss you so much!!!!!

Saturday, December 25, 2004 5:47 PM CST

To my precious christmas angel Justin

you've been gone for two years now
and it seems like it was yesterday
our hearts still break every second
of each day.

we go on because we have to
but there isn't a moment
we don't think of you

we wish you were here
but please know we hold
you so dear in our heart

we think of happy memories of you
and light a candle daily for you

some days are very hard to get through
wishing you were here with us
but you are always with us in our heart

Merry Christmas Justin
and as we light your christmas candle
always know that you are our
PRECIOUS CHRISTMAS ANGEL!!!!

WE MISS YOU JUSTIN!!

LOVE YOU FOREVER AND ALWAYS,
MOM, DAD, ERIC, AND KAITLIN

Monday, August 2, 2004 7:48 AM CDT

HAPPY 12TH BIRTHDAY JUSTIN!!!!!!!!!!

THERE ISN'T A DAY I DON'T THINK OF YOU
YOU ARE ALWAYS IN MY HEART,
AND A SPECIAL OCCASION
LIKE YOUR BIRTHDAY TODAY
IS ESPECIALLY HARD ON MY HEART,
WITHOUT YOU HERE TO CELEBRATE THE DAY
TO SEE YOUR SMILES AND HEAR YOUR LAUGHS
ON THIS VERY SPECIAL DAY

I TRY SO HARD TO LIVE ON WITH OUT YOU HERE
AND TRY TO THINK OF ONLY HAPPY MEMORIES
BUT THE PAIN OF MISSING YOU SO
SOME DAYS I WONDER
IF I CAN GET THROUGH THE DAY

I CRY SILENT TEARS
AND MY HEARTACHE IS STILL NEW
AND WILL ALWAYS BE WITH ME
EVERY SECOND OF EACH DAY
BECAUSE I LOVE AND MISS YOU SO
AND WOULD DO ANYTHING
TO BE ABLE TO HOLD AND KISS YOU AGAIN
AND SEE YOUR BEAUTIFUL SMILE
HEAR YOUR LAUGH ONE MORE TIME

BUT TODAY I WISH TO THINK
YOUR IN HEAVEN, HAVING A WONDERFUL
AND SPECIAL DAY, PLAYING AND LAUGHING
AND CELEBRATING YOUR SPECIAL DAY

SO TODAY I WILL GET YOU 12 BALLOONS AND SEND THEM TO HEAVEN JUST FOR YOU. I AM DECORATING YOUR SIGHT WITH BIRTHDAY DECORATIONS, BALLOONS AND TOYS AND WISHING YOU A 12TH BIRTHDAY THE BEST WAY I KNOW HOW.

HAPPY 12TH BIRTHDAY JUSTIN!!!
OOO HUGS AND XXX KISSES
WE LOVE AND MISS YOU SO, SO MUCH!!!!!!

Wednesday, February 18, 2004 6:54 AM CST

It's been a while since i've updated. I haven't been on the computer very much because we have been so busy! Christmas was very hard to get through. On Christmas eve Chuck, me and the kids with my parents and my brothers went to Justin's sight and had a candle lighting for him. We had decorated his sight ( we do every holiday ) and everyone brought a candle to light for him. My parents built a special box and put many gifts in it for him and a few candles. It was nice. Then we all came back to our house and had dinner. On Christmas day we went to my brothers for dinner. It was a very hard day to get through for us all.
In January we kept quite busy. We've had dentist appointments and eye appointments. Eric had to go get another MRI and go back to the neurologist in Horseheads. He is having severe headaches again with numbing and tingling in his hands and arms and feeling dizzy quite a bit. When he went to the neurologist he said the cyst on his brain hasn't grown to where there is a noticable change, which is good. He put him on more migraine meds that he takes every night and when he has a migraine he now has to take an asprin to open up the main blood vessels to his brain to prevent him having a stroke. So now i am a wreck every time he gets a headache, scared to death he might end up having a stroke. He has go back again in April to see the neurologist.
We had more blood work done on Kaitlin because she hasn't been feeling well. Her blood work came out ok so that was good news. I constantly worry about it.
We got the kids a puppy a week before Christmas for one of their Christmas presents. They loved it and they really needed it. It has helped a lot. We named him Santa fe. That was the name of Justin's favorite train so we decided it should be that. Santa fe has really helped keeping us all busy. The kids love him and spoil him.
" Brave " is doing great!! He is getting so big now. He has quite the personality and loves attention!!!! We are going to have to make his house entrance a little bigger soon!!!
Chuck's birthday was feb. 6th. We had a few people over and had a meat platter with some other food and played some cards. He had a good time!!
Eric was in basket ball and played in a couple games and then he had a 4-wheeler fall on him and broke his hand. so now he can't play basket ball. We had to go get x-rays and all and then went to the orthopedics doc and had it splinted. He is going to make me loose all my hair soon or turn it totally white!!!!! We have to go again today to get it re-checked and make sure it's still in place. It was a nasty break and was displaced. So they had to put it back in place and then splint it. That hurt!!!!
Chuck and Kaitlin went to a father - Daughter ball with a friend and his daughter. They all had a great time!! They got their picture done and it was beautiful!! I did Kaitlin's hair up and then had ringlits hanging down. It was beautiful!! It took me an hour and a half to do it and she was so good through it. She had a great time!!!!
This week we have been running again. Monday Chuck and I went snowmobiling with my brother and sister-n-law. We had a good time. Yesterday we had to go get our taxes done and we had a new couch delivered.
Tomorrow i am taking Kaitlin and a few of her friends ice skating. Eric might bring a friend to hang out with him since right now he can't ice skate with a fear of falling on his broken hand. Kaitlin got ice skates for x-mas. She went once and loved it!!! Kaitlin's birthday is Sunday the 22nd. She is going to be 9 yrs. old. We are going to have a small party here at the house for her.
The kids have this week off from school and we have been running so much we really haven't been home. Later after we get done with Eric's orthopedic appointment we are going to go get some things for Kaitlin's party.
Wow, sorry this is such a long entry this time. I want to say "Thank you" to all of you who still sign Justin's guest book and still check in on us or e-mail me at my e-mail address! You all are so wonderful and so very supportive and caring. It truly means so much to us!!!!! I think it helps me to know people still think about Justin. That means more than anything!!
One last thing i forgot to tell you, I am going to start some schooling soon to be a nail technician. I need to do something different. Chuck is so suppportive of this and is helping me out and getting me started. We talked to our tax lady and she thought it would be great for us also.
Well i better let that be it for now. This is really long and i am sorry for that. Thank you all again!!

Justin, I love you and miss you!!!

Thursday, December 11, 2003 11:36 AM CST

TO OUR CHRISTMAS ANGEL

AS CHRISTMAS COMES UPON US
AND WE SEE ALL OF THE
CHEER AND JOY
ALL THAT WE HAVE TO REMEMBER IS THAT IT'S THE
DAY WE LOST OUR LITTLE BOY!!!

WE HAVE SADNESS
INSTEAD OF JOY
WE HAVE NEVER ENDING TEARS WE CRY
INSTEAD OF CHEER INSIDE

WE DON'T FEEL LIKE CELEBRATING
THIS DAY ANYMORE
BECAUSE OUR HEARTS BREAK
ON THIS DAY AND EVERY DAY MORE.

CHRISTMAS WILL BE HARD FOR ERIC AND KAITLIN
WITH OUT THEIR BROTHER HERE BY THEIR SIDE
THEY TRY TO BE NORMAL AND HAPPY CHILDREN
BUT BEHIND THEIR LITTLE FACES
IF YOU LOOK CLOSE INSIDE
YOU CAN SEE THEIR HURTING SO,SO MUCH INSIDE

RAY IS ALSO HURTING
BUT IS FAR AWAY
BECAUSE HE HAS BEEN CALLED AWAY
FOR HIS ARMY DUTY AT THIS TIME
HE HAS TO GO THROUGH HIS HURT ALONE
WITH NO FAMILY OR FRIENDS BY HIS SIDE
HOW WILL HE ENDURE SUCH A PAIN ALONE.

AND TAMMI, WHO CALLED JUSTIN HER PRINCE
AND FOR GRANDMAS, GRANDPAS, UNCLES, AUNTS AND COUSINS TO
THEY HURT INSIDE AND ARE GREATLY MISSING YOU
THIER LOVE WILL ALWAYS BE A VERY SPECIAL LOVE FOR YOU
THE PAIN IN THEIR HEARTS IS STILL ALSO QUITE NEW.

JUSTIN CHRISTMAS OR ANY HOLIDAY
WILL NEVER BE ALIVE IN OUR HEARTS
WITH OUT YOU BY OUR SIDE
WE WILL DECORATE THE TREE WITH ANGELS
AND THINGS THAT YOU LIKED
EVEN THOUGH WE WILL CRY SO HARD INSIDE.

ALWAYS KNOW THAT YOU ARE IN OUR HEARTS
EVERY HOUR, EVERY SECOND OF EACH DAY
OUR LOVE FOR YOU WILL NEVER FADE
IN ANY WAY!!!!!

JUSTIN WE LOVE AND MISS YOU MORE THAN ANYTHING IN THIS WORLD!!!MY HEART ACHES SO MUCH JUST LIKE IT WAS AN SECOND AGO THAT YOU LEFT TO BE WITH THE LORD.I CRY SO MUCH INSIDE FROM MISSING YOU AND LIVE A SILENT TORMENT OF WANTING TO HOLD AND KISS YOU AND TRYING TO UNDERSTAND WHY GOD HAD TO TAKE MY PRECIOUS CHILD AWAY. I LOVE YOU JUSTIN!!!!!

Sunday, November 23, 2003 8:30 AM CST

AS THE HOLIDAYS GET CLOSER AND CLOSER IT GETS HARDER AND HARDER TO DEAL WITH. THANKSGIVING IS THIS WEEK AND TO SIT DOWN TO A THANKSGIVING DINNER WITH OUT MY LITTLE BOY BY MY SIDE IS GOING TO BE VERY HARD. IT'S AN EMPTY FEELING!! TO KNOW THAT WHEN WE SIT DOWN TO DINNER JUSTIN WON'T BE THERE WITH US. TO KNOW THAT I WON'T HERE HIS LAUGHTER AND HIS PRECIOUS LITTLE VOICE AND HIS HUGS AND KISSES ON THAT DAY OR ANY DAY IS SO HEART WRENCHING. THE DAILY PAIN IS HARD BUT HOLIDAYS ARE THE WORST. IT MAKES THE HEART ACHE SO MUCH MORE UNBEARABLE. I STILL CRY DAILY AND HURT SO MUCH INSIDE THAT I WONDER IF I WILL EVER BE ABLE TO GET THROUGH A DAY WITH OUT CRYING. I FEEL LIKE I AM TWO PEOPLE. ONE THAT HAS TO BE STRONG FOR EVERYONE ELSE AND BE SO CALLED "NORMAL" AND THEN "ME", THE REAL ME THAT HURTS INSIDE AND LIVES WITH THIS PAIN IN MY HEART OF LOOSING MY SON AND MISSING HIM EVERY SECOND OF EVERY DAY AND CRYING MYSELF TO SLEEP EVERY NIGHT BECAUSE I MISS HIM SO MUCH. I HAVE ONE FRIEND THAT I WORK WITH THAT ASKS ME EVERY NOW AND THEN HOW I AM DOING AND TALKS WITH ME ABOUT MY FEELINGS AND THE ON COMING OF THE HOLIDAYS. SHE HELPS ME MORE THAN SHE KNOWS SHE DOES. TO BE ABLE TO TALK ABOUT IT AND LET SOMEONE KNOW HOW I FEEL AND HURT INSIDE AND TO HAVE HER JUST BE THERE TO LISTEN TO ME AND NOT TO JUDGE ME MEANS A LOT!!! THANK YOU PAM!!!! YOU JUST BEING THERE AND LISTENING AND NOT JUDGING ME AND NOT TELLING ME WHAT I SHOULD DO, LETTING ME JUST TALK ABOUT IT AND YOU CARING MEANS MORE THAN YOU COULD EVER IMAGINE!!!!!

JUSTIN I MISS YOU MORE THAN ANYTHING
I MISS YOUR HUGS AND KISSES
YOUR BEAUTIFUL SMILE AND LAUGHTER
SITTING AND TALKING WITH YOU
THE HEART ACHE ISN'T ANY LESS
I GO ON IN A DAILY DAZE
I AM THANKFUL YOU ARE NO LONGER IN PAIN
BUT WISH SO MUCH YOU WERE HERE WITH ME
I STILL DON'T KNOW WHY GOD HAD TO TAKE YOU
AWAY FROM ME AND LEAVE ME WITH THIS DAILY PAIN
I ASK WHY OVER AND OVER
WHY DID YOU TAKE MY LITTLE BOY
I WANT HIM BACK
BUT I KNOW THAT WON'T HAPPEN
I LOOK FORWARD TO JOINING YOU SOME DAY
AND BEING ABLE TO HUG AND KISS YOU AGAIN
AND HEAR YOUR PRECIOUS VOICE AND LAUGHTER
IF I COULD WALK UP TO HEAVEN
AND BRING YOU HOME, I WOULD!!
I LOVE YOU JUSTIN AND MISS YOU
MORE THAN WORDS CAN SAY.
HAPPY THANKSGIVING DAY BUD!!

Saturday, October 25, 2003 7:03 PM CDT

WHO CAN SAY FOR CERTAIN
MAYBE YOU'RE STILL HERE
WE FEEL YOU ALL AROUND US,
YOUR MEMORY IS SO CLEAR

AS OUR HEARTS HOLD YOU
JUST ONE BEAT AWAY
WE CHERISH ALL YOU GAVE US EVERYDAY
BECAUSE YOU ARE OUR FOREVER LOVE
WATCHING US FROM UP ABOVE.
AND WE BELIEVE THAT ANGELS BREATHE
AND THAT LOVE WILL LIVE ON
AND NEVER LEAVE.

FLY US UP TO WHERE YOU ARE
BEYOND THE DISTANT STAR
THAT WE WISH UPON TONIGHT
TO SEE YOU SMILE IF ONLY FOR A WHILE
TO KNOW THAT YOU ARE THERE
A BREATH AWAY IS NOT FAR
TO WHERE YOU ARE.

WITH HEARTS THAT ARE BROKEN FOREVER
WE KNOW THAT WE WILL NEVER
BE THE SAME AS WE WERE BEFORE
WE LOST THE CHILD THAT WE ADORE.

AS THE HOLIDAYS KEEP GETTING CLOSER IT GETS HARDER AND HARDER TO GET THROUGH THE DAYS. HOLLOWEEN, THANKSGIVING, AND CHRISTMAS ARE HEART BREAKING FOR ME. SOME DAYS I THINK I'M NOT SURE IF I CAN GO ON WITH THE DAY, I JUST WANT TO ESCAPE TO ANOTHER WORLD SO I DON'T HAVE TO DEAL WITH IT. I HAVEN'T BEEN FEELING WELL LATELY AND FINALLY WENT TO THE DOCTOR THE OTHER DAY. I HAVE BEEN FEELING QIUTE DIZZY ALL THE TIME AND FEEL LIKE I MIGHT PASS OUT. THE DOCTOR PUT ME ON SOME MEDS AND I HAD SOME BLOOD WORK DONE. MAYBE MONDAY I WILL KNOW THE RESULTS OF THAT.I THINK MOST OF IT IS STRESS. MY BLOOD PRESSURE WAS LOW ALSO. I DON'T SLEEP WELL NIGHTS AND I'M UP A LOT AND I KEEP MY SELF BUSY WITH MANY THINGS TO KEEP MY MIND SO IT'S NOT THINKING ABOUT MY HEART ACHE. BUT THE PAIN AND HEART ACHE ARE ALWAYS THERE. THE WORST IS HAVING TO CELEBRATE THESE DAYS FOR THE KIDS IN THE SCHOOL WHERE I WORK AS A PRIMARY TEACHER AIDE WHEN ALLS I WANT TO DO IS FORGET THESE HOLIDAYS AND JUST TRY AND GET THEM OVER WITH. AND HEARING EVERYONE TALKING ABOUT CHRISTMAS WITH SO MUCH JOY WHEN CHRISTMAS IN OUR HOUSE IS GONNA BE FILLED WITH SO MUCH PAIN AND HEART ACHE ON THAT DAY.

JUSTIN I MISS YOU TERRIBLY!! THERE ISN'T A MOMENT I DON'T THINK OF YOU!! I TOOK YOU SOME HOLLOWEEN DECORATIONS AT YOUR SIGHT AND GOT YOU SOME LIGHT UP PUMPKINS THAT I WILL LIGHT FOR YOU ON HOLLOWEEN AND PUT THEM THERE ALSO. HAPPY HOLLOWEEN MY SWEET JUSTIN. LOVE, HUGS AND KISSES BUD!!!!!
MOMMY

Thursday, September 11, 2003 3:57 PM CDT

WELL IT'S BEEN OVER A MONTH SINCE I HAVE LAST WRITTEN. IT HAS BEEN VERY HARD LATELY AND I HAVEN'T HAD MUCH TIME TO BE ON THE COMPUTER. A LOT HAS HAPPENED SINCE I LAST WROTE. MY STEP SON RAYMOND WHO IS THE ARMY HAS BEEN SHIPPED TO AFGHANISTAN. HE LEFT ON SUNDAY AUGUST 31ST. PLEASE SAY A PRAYER FOR HIM FOR A SAFE RETURN!!! TODAY IS HIS 21ST BIRTHDAY SO I WANT TO SAY " HAPPY 21ST BIRTHDAY ". WE LOVE AND MISS YOU RAY AND BE SAFE.
I HAVE RETURNED TO WORK AT THE SCHOOL AS AN AIDE. IT HAS BEEN VERY HARD!!! I WORK IN THE SCHOOL WHERE JUSTIN FIRST HAD STARTED WITH HIS ILLNESS. I KEEP EXPECTING TO SEE HIM RUN UP TO ME AND SAY HI MOM, LOVE YOU MOM OR JUST GIVE ME A HUG OR KISS OR TO HEAR HIS SWEET LITTLE VOICE. IT JUST RIPS MY INSIDES OUT ALL DAY LONG AND THEN I COME HOME AND CRY AND HIDE FROM ERIC AND KAITLIN SO NOT TO SHOW HOW MUCH I HURT INSIDE OR FOR THEM TO SEE MY PAIN. IT IS VERY HARD BEING " NORMAL " ALL DAY AS EVERYONE WOULD CALL IT FOR EVERYONE ELSE AND THEN TO FEEL SO TERRIBLE INSIDE AND HAVE SUCH HEART ACHE AND PAIN INSIDE OF ME AND JUST WANT TO BREAK DOWN AND CRY!! I FEEL LOST LATELY AND I ADMIT THAT I AM DEPRESSED. I FEEL LIKE I HAVE NO ONE THAT TRULY KNOWS WHAT I FEEL. I HIDE MY FEELINGS. THE ONLY THING THAT REALLY KEEPS ME GOING IS HAVING ERIC AND KAITLIN TO CARE FOR.
ERIC AND KAITLIN ARE DOING WELL SO FAR IN SCHOOL. ERIC STARTED 6TH GRADE THIS YEAR. THE FIRST DAY WAS SO HARD ON HIM. HE WAS SO SCARED GOING INTO THE MIDDLE SCHOOL. BUT NOW HE IS DOING FINE WITH IT. KAITLIN STARTED 3RD GRADE THIS YEAR AND IS IN THE INTERMEDIATE SCHOOL. AND I WORK IN THE PRIMARY SCHOOL. KAITLIN WAS READY TO GO BACK TO SCHOOL AND VERY EXCITED AND IS DOING GREAT ALSO.
PLEASE SAY A PRAYER FOR RAY. THANK YOU ALL FOR STILL SIGNING JUSTIN'S GUESTBOOK AND BEING THERE FOR US STILL. YOU CAN'T RELIZE HOW MUCH THAT MEANS TO ME. I LOOK AT HIS WEB PAGE AS MUCH AS I CAN AND SEE WHO HAS SIGNED AND IT HELPS TO KEEP ME GOING TO KNOW THAT JUSTIN STILL LIVES ON IN PEOPLES HEARTS. YOU ALL ARE TRULY A BLESSING. THANK YOU SO MUCH!!!

Saturday, August 2, 2003 5:43 AM CDT

Today is Justin's 11th birthday!!!! My little angel is missed deeply. Today is especially hard.

I WAKE UP TO SEE YOU
STANDING IN THE MORNING LIGHT.
I REACH OUT TO TOUCH YOU,
BUT ALL THAT I GET IS A MEMORY.

YET I HAVE A IMAGE ALWAYS IN VIEW,
I'M FOREVER THINKING OF YOU.

I TRY TO FIND SOME PEACE OF MIND
IN KNOWING YOU'RE
WHERE YOU DON'T HAVE A CARE,
AND THAT YOU NO LONER HAVE
TO KEEP LIVING IN A WORLD FULL OF PAIN.

BUT I ACHE TO SEE YOU AGAIN,
TO HOLD YOU IN MY ARMS
TO GIVE YOU A KISS
AND HEAR YOUR SWEET VOICE.

I WALK INTO YOUR ROOM
AND HOLD YOUR THINGS
AND I CHERISH THE MEMORIES
AS I STAND THERE.

EVERYTHING I SEE MAKES
YOUR LOSS HARD TO BEAR
I SEE YOU EVERYWHERE.

I LIVE IN A STILL WORLD
I STRAIN TO HEAR YOUR VOICE ,
BUT ALL I HEAR ARE THE SOUNDS OF MY TEARS

JUSTIN YOU ARE MISSED SO DEEPLY
DAYS ARE SO HARD TO GET THROUGH
I WILL ALWAYS LOVE YOU

HAPPY 11TH BIRTHDAY JUSTIN!!!!
WE LOVE YOU AND MISS YOU AND WILL CELEBRATE THIS DAY WITH YOU!!!

LOVE YOU BUD,
MOMMY, DADDY, ERIC, KAITLIN

Sunday, July 27, 2003 7:01 PM CDT

Saturday August 2nd is Justin's birthday, he would be 11 yrs. old. My heart breaks and I have such an empty feeling not having him here with us. Everyone says with time you heal, but loosing a child you never heal, the pain is with you every day, every hour, every minute, every second and even though you look like you are being strong and getting through the days ok, inside your not. The pain you carry inside of you and hide from everyone else rips you apart and you cry your private tears inside and you live with it every day of your life and it never goes away. I miss my little boy so much!!!!

"LIFE WITHOUT YOU"
LIFE WITHOUT YOU SEEMS SO DIFFERENT
THERE'S A VOID THAT'S AS BIG AS THE SKY

GOD SENT HIS ANGELS TO TAKE YOU
AND STILL WE KEEP WONDERING WHY

YOUR LIFE HERE ON EARTH HAD SUCH MEANING
FROM THE LOVE AND THE KINDNESS YOU SHARED

AND EVERYONE WHO EVER KNEW YOU
HAD NOT A DOUBT THAT YOU CARED

THOSE OF US LEFT BEHIND STILL REMEMBER
HOW YOU TOUCHED US IN YOUR SPECIAL WAY

WE MISS YOUR SWEET SMILE AND YOUR LAUGHTER
AND WE WISH YOU WERE WITH US EACH DAY

THE PAIN IN OUR HEARTS CAN'T BE MEASURED
WE SOMETIMES DON'T KNOW WHAT TO DO

THAT'S WHEN WE ASK GOD TO HELP US
MAKE IT THROUGH LIFE WITHOUT YOU

WE LOVE AND MISS YOU VERY MUCH JUSTIN!!!!!
YOU ARE ALWAYS IN OUR HEART.

Sunday, July 27, 2003 7:01 PM CDT

Friday, July 18, 2003 8:29 AM CDT

WE WANTED TO SAY A HUGE THANK YOU TO MARY LAKE FOR PAINTING THE CEMENT TORTOISE ( TO LOOK JUST LIKE BRAVE ) AND THE ANGEL. SHE DID A BEAUTIFUL JOB AND DONATED ALL OF HER HARD WORK SHE HAD PUT INTO THEM. THANK YOU SO MUCH MARY!!! WE PUT THEM DOWN AT JUSTIN'S SIGHT THIS WEEK WHEN WE GOT BACK FROM OUR VACATION.
WE GOT BACK KAITLIN'S BLOOD WORK. IT LOOKS OK BUT THERE ARE SOME THINGS THAT ARE A LITTLE OFF AND I AM GOING TO E-MAIL THE DOCS IN DELAWARE ABOUT THAT TO SEE WHAT THEY HAVE TO SAY. BUT MOSTLY ALL OF HER BLOOD WORK LOOKS GOOD.
HOPEFULLY TODAY WE WILL GET BACK THE PICTURES OF THE CHAIRS WE DONATED TO THE RONALD MCDONALD HOUSE IN MEMORY OF JUSTIN AND WE WILL BE ABLE TO PUT THEM ON THE WEB PAGE WITH ALSO A PITURE OF HIS SIGHT SOON.
HAVEN'T BEEN FEELING VERY WELL LATELY. MY BACK AND SIDE HAVE BEEN HURTING A LOT AND I AM WONDERING IF I MIGHT HAVE A KIDNEY INFECTION. MADE A DOCTORS APPOINTMENT FOR NEXT WEEK. I FEEL A LITTLE RUN DOWN.
THANK YOU ALL AGAIN FOR SHOWING SO MUCH SUPPORT AND LOVE FOR OUR FAMILY AND ALSO KEEPING JUSTIN IN YOUR HEART AND THOUGHTS. IT MEANS A LOT TO US, MORE THAN WORDS COULD SAY.

Thursday, July 17, 2003 2:46 PM CDT

Well it has been a while since i last updated. We have been so busy and haven't had much time at all. Chuck and I had to go and see a genetics counselor and in a few weeks we will be tested to see if there is a link that the other two kids might have to be watched closely for. If one of us comes back positive then the kids will have to be tested. We are already watching them closely anyways but it puts more strain on things.
Chuck and i went to black lake for the weekend with our good friends to celebrate our anniversary ( which was on July 13th ). We had a good time. When we got back we packed the kids up and went to Wilmington Delaware to the hospital and Ronald McDonald house again. It was much harder going back there than we thought. We got an adult rocking chair and a childs rocking chair ( that Chuck's brother Jason and his co-workers raised money for )and donated them to the Ronald McDonald House in memory of Justin. We had little brass plates made that said " DONATED IN LOVING MEMORY OF JUSTIN BRYCE " and put them on the back of them. After we were done in Delaware we went to Viginia to Chuck's brother Jason's house and stayed with them until sunday. Wew had a great time and it was nice spending time with them all. We brought our niece Courtney home with us and Jason, Barb and our nephew Tyler will be up after the weekend sometime. It has been nice having Courtney here with us and spending some time with her. We don't get to see them all very much.
It has been a rough time for us all here lately. Going to Delaware again was very, very hard and Justin's birthday is coming up soon. His birthday is August 2nd and he would be 11yrs. old. My heart just aches so badly. Holidays and birthdays are the hardest ever.
Eric and Kaitlin are having a very rough time lately too. Some days are ok but other days are so hard for them. Eric is having the hardest time. He doesn't know how to express his feelings and is angry and lashes out quite a bit. There are days he just doesn't want to be around any more. No one understands how he feels or what he feels inside. They just think he is a bad child and he isn't!!!!!!!!!!! He hurts and doesn't know how to handle things and it makes me mad when people treat him POORLY, when they have NO CLUE what he feels and what he goes through and they have no right to treat him that way.It also hurts badly when when they do. They just make things much worse and hurt him even more and make him feel more unloved because they have no idea what he goes through. I have talked to a few counselors about it all and they have helped a lot and I work with Eric to try and help him work through all of his anger but I wish people could have a little understanding and show a little love instead of putting him down and making him feel worse than he does. Some people are cruel and think they know it all when they don't!!!! We had him in counseling last year and he will have counseling again this year in school.
When we got home the garden was over loaded with weeds. We have been weeding the garden and catching up on things around the house.
I have to go now, but i will update again soon. Thank you all for still keeping in touch, it truly means a lot to know you still look and think of our special child Justin. thank you all.

Wednesday, June 18, 2003 7:56 AM CDT

It's been a while since i have written. I go to Justin's sight at the cemetary every day and check on it and talk to him. I have put two rose bushes there, one on each side of his headstone. One is red, which is his favorite color, and the other one is a dark pink and i bought the pink one because of the name, it's called enduring spirit. I also put a put a holder and hung two hanging baskets behind the his headstone. Then Eric and Kaitlin did a flower pot each for him which they sit on each corner of the headstone and we also did a pot for in front. We have a tortoise there and and turtle water bath, a frog, and a squirrel. It looks very nice!! The next time i update I will put a picture in for everyone to see. We have bought a cement Angel and a cement Tortoise and they are getting painted by a good friend. The angel she has made a red haired angel and the tortoise is going to look just like brave.
Even though it has been almost 6 months our pain we feel is still like it happened yesterday. It's not something you get over. I still cry daily and miss Justin so much!!!! My heart aches so much, I just want to hold my little boy one more time and kiss him and talk with him, hear his voice and tell him how much i love him. It's heart wrenching!!! The kids are fine one minute and then not the next, missing him terribly also. They have very rough days.
I have started to collect turtles and tortoises now. Anything that has a turtle or tortoise on it i buy. I have them in my one flower garden that we call Justin's garden. It's has turtles and angels and other animals we know Justin liked.
The kids, my parents and I went to Florida last week to spend a week with Jill. This is a very hard month for her, it was one year on June 3rd that Zack went to be an angel.
We had never been to Florida and the kids had a great time. They really needed this. We took them to Sea world and Walt Disney world and to flea markets one day and one day we just hung out at the motel room and let them swim and rest for our long trip home. On our way down and back we stopped at my moms sisters house ( my aunt's ) in Virginia. My mom and aunt had a great visit together. Also in florida they had this western store that had this big red cowboy boot out front with Justin on it. It was so odd because Justin's favorite color was red and he had these cowboy boots that he loved to wear and it had his name on it. I never knew there was Justin boot company. Anyways we went in after getting a picture of it and I got Justin hats and a wallet with Justin on it. I collect anything that has his name on it.
The kids will be out of school soon. Monday is their last day. I think this summer will be hard on them. So I am going to try and keep them quite busy and maybe that will help a little bit. I seem to do better when I am busy.
Well I have a lot more I would like to say but I guess this is long enough for today.I will update again in a few days or so.
Thank you all for still signing Justin's guestbook. It truly means a lot to us to know that he still lives on in many peoples hearts.

Wednesday, May 14, 2003 8:12 AM CDT

Today is Zack's 11th birthday!! Please go to his web page and wish him a Happy Birthday and send Jill, Frank, and John some prayers, love and support since they will truly need it today. This will truly be a very hard day for them all. Eric, Kaitlin and I are sending Zack 11 balloons today in heaven. We are calling Jill this afternoon and doing it all together at the same time. I wish I could be there with her on this day. Zacks's web page is www.caringbridge.com/fl/zackerykull

Justin's burial service was very nice. We had a few special poems read and our pastor did a very beautiful job. A few of the Binghamton service men were there from the National guard and had folded the beautiful flag that a Sgt. sent from California. It was a very hard thing to have to go through all over again. Family and close friends attended and many of them brought roses for Justin after the service was over. We miss our little boy so much!!!! The pain in my heart that lives on daily is truly the most heart wrenching.
Mother's day was nice but very hard also to go through!!! I had to put on a happy face for Eric and Kaitlin but my heart ached so badly inside not having Justin here with me. I cried on and off all day and at night cried my self to sleep.
A very special Happy Birthday to Justin's friend Zack!! We love and miss you Zack!!! Happy Birthday !! You will always be our heart. Jill I wish I could be there with you today and give you a hug!! Please know I'm thinking of you all today and send my love, prayers and hugs to you. Love ya all!!

Monday, April 28, 2003 7:28 AM CDT

Hello,
I wanted to let you all know when Justin's burial would be ( May 3rd at 11:00am ), but we would also like it to be a private affair. Family, a few close friends and a few other people that had asked if they could attend from the Military. There are a few people that had asked if they could attend quite a while back and we are trying to contact them. We would like to keep it as private as we can since this will be a very hard thing to go through again. I do want to thank everyone that has sent their blessings and prayers, it truly means a lot to us. I hope everyone can understand how difficult this is for me and family to go through and why we would like to keep it private. Chuck and I have to say good bye again to our little boy and it's very heart wrenching. It is also extemely hard on Kaitlin and Eric and we feel this would be best for them also. Again I hope everyone understands.
I would like to thank SGT. William M. Heintz, his family and the California Army National Guard for sending an American Flag for the burial service in honor of Justin. This has truly touched my heart and we will surely treasure it always.
I would like to thank everyone that has been so supportive to us through this and still sending their love and prayers. It truly means a lot. I will never be able to thank you all enough.

Wednesday, April 23, 2003 6:52 PM CDT

Justin's burial will be on saturday May 3rd at 11:00am. I know there were some military personal that wanted to attend and i hope that you see this.
This has been very hard to arrange this all. To have to go throught his all again is so heart wrenching. I miss him so much. Birthday's and holidays are so hard. When the kids and I colored easter eggs it was such an empty feeling not having Justin there with us. I cried all day on Eric's birthday and Kaitlin's also because it was so hard to celebrate with out Justin. Eric got home from school on his birthday in tears, missing Justin. It's a pain we live with every day every minute. We act fine for everyone but inside we hurt so badly. I even act ok for chuck and don't let him see how much I really hurt inside. Sometimes I can't hide it from him but most of the time I do.
I think I pour my feelings out on this web page because I can't seem to express them any other way. There are days I think I'm totally falling apart.
It's snowing here again today, maybe that is another depressing note. I guess the weather isn't making me feel much better either. I guess I need some sunshine.
Thank you all for you cards to eric for his birhtday. He loved them all!! He had a good birhtday, he went bowling and we had ice cream cake and he got some nice gifts from family and friends. He didn't excellent bowling!! We also took him to TGI Fridays for dinner. Thank you all again and hope you all had a nice Easter.

Thursday, April 17, 2003 11:01 AM CDT

Happy Birthday to Eric today!!

If tears could build a stairway
And memories were a lane
We'd walk right up to Heaven
And bring you home again

No farewell words were spoken
No time to say goodbye
You were gone before we knew
And only God knows why

Our hearts still ache in sadness
And secret tears still flow
What it meant to lose you
No one will ever know

But know we know you want us
To mourn for you no more
To remember all the happy times
Life still has much in store

Since you'll never be forgotten
We pledge to you today
A hallowed place within our hearts
Is where you'll always stay

I love you Justin and miss you terribly!!! I wish I could hold you, hug you, kiss you, hear you voice and hear you laugh!!!! I miss everything so much and my heart aches so much with out you here in my arms. I love you sweetie!!

Thursday, April 10, 2003 5:00 PM CDT

Kaitlin's blood work came out ok, it's about the same as last time. So we will wait about another month or so and get it done again and keep and eye on her. She was sick about a week ago with another fever and not feeling well in her stomach, she didn't fel well for about3 to 5 days. Now she is starting with some bloody noses also. She's had quite a few lately. If it continues we will have to make a doctors appointment for that too. Next week on the 15th she has an appointment to have some warts on her feet looked at. Justin had these also and now she has several of them and they seem to be spreading.
Eric is doing well. He gets a headache every now and then. Some days are really hard for both of them, missing Justin. There are quite a few days that they come home from school and cry and let out their feelings. It's really hard on them. They talk about Justin a lot and some days its harder than others. Holidays and birthdays are the worst for all of us.
Eric's birthday is next week. He will be turning 12 years old. He wants to go bowling and out to dinner at TGI Fridays. He's getting so big!!
The kids and I are getting excited for June to arrive. In June we are going to Florida to visit Jill. My mom is going to go with us and on the way down we will stop in Virginia to see her sister ( my aunt Dot). It will be a nice trip for us.
Ray is doing well also. He is still in Ft. Drum and hasn't been sent over seas. We pray every day for all the soldiers. I have 3 cousins over in Iraq right now and pray for their safe return. Please say a prayer for them also, their names are Todd, Clinton, and Donald.
We are still waiting to hear on the grave sites. They had their meeting on April 1st and it will be another week or two before we know anything for sure. Hopefully it will be soon so we can make all the arrangements. I would really like to have the burial soon. This is hard waiting and going through this all again.
I'm still going through Justin's things. It's taking me quite some time. I have to take my time and do it slowly. Some days I can't do it at all. Lately I've been feeling really sad and depressed. Maybe some nice weather soon will help. I'm still writing out thank you's also. I have so many to write and it is hard to do them some days. It's going to take a long time to get them all done and sent out. I hope everyone forgives me for being so late with all of them.
I volunteered at the school one day and helped them with a few things. It felt nice to be back in my old work place and being a part of the team again, but it also was harder than I thought it would be. I was ok until I left and then on my way home I broke down crying. I had to pull off the road and get myself under control. Then I just sat there for quite a few minutes until I felt better and then went and got my hair cut. After I got home I had to go pick up Kaitlin because she was running a fever and sick. It was out of the blue that everything hit me that way. I'm not sure if it's because Justin's last year in school was in 2nd grade, when he started getting sick and it was in the building I worked in or what. But it all hit me at once. I could picture his little face walking down the hallway, not feeling well. How thin he started getting and all. It was like he was there and we were just starting it all again. I don't know. I haven't been back in the school since.
Thank you all again for your support. You all have been wonderful!!! Prayers to all of our troops!!!

Tuesday, March 18, 2003 10:32 AM CST

On friday March 14th I took Kaitlin for her blood work to be done for an afp level. It's going to take about a week for it to come back. This is a very hard week to go through waiting for it and what the results are going to be. I just pray that it's all normal. Living with this fear that something might happen to my other children is agonizing.

I'm still sorting all of Justin's things out and packing things up. This is so hard and emotionally draining. There are some days that I wonder if I'm going to ever get through this.

Eric is doing ok. He's struggling a little with school work but is doing better. He's getting headaches again more than he should, I'm hoping it's just stress but if they continue I will have to have him checked.

I'm calling this week to make plans to buy the grave sights. Also I need to check on Justin's head stone and make sure everything is going well with that. Then when things are set, we have to plan his burial date. Now that the ground is thawing and it's getting warmer. To have to make all these plans and go through this a second time is turmoil. I feel like my emotions are on a rocky road, all these ups and downs. Half of the time I don't know what I'm feeling anymore and then I feel like I'm on an emotional roller coaster.

We are still opening cards that were sent and I'm trying to get some of the thank you cards out. Then I'm trying to go on with daily life. I feel drained emotionally. Too much of everything going on and trying to be ok for my family and friends.

Thank you all for your wonderful support. I don't update every day but I do check Justin's guest book daily and read the entries that were made. It seems to help me get through the day. Thank you!!!!!!

Friday, March 7, 2003 6:58 AM CST

Well it's been a long time since I've updated.A lot has been happening since the last time I wrote. First I would like to say a huge thank you to the make-a-child smile organization. They sent a beautiful trinket angel box with Justin's name on it and a beautiful angel charm for a necklace. When I opened it I just cried!!! It was so beautiful and to send something so precious really meant a lot to me. It has taken us a while before we could open things that have been sent and just recently have started opening them and also all the sympathy cards. I also want to thank all the stitchers at make-a-child smile for the love quilts for the beautiful memorial quilt they sent that was made from squares from Zacks quilt and the beautiful wall hanging!! This is again a very treasured item and loved deeply. There is a beautiful story behind the quilt.........
The make-a-child smile organization love quilters were in the process of making Zacks ( Justin's friend ) quilt for him when he passed away, so they made it into a memorial quilt. They got such a huge response for Zacks quilt that they decided to make it into two quilts and give the other one to another little boy. They picked another boy and started making the quilt for him when he passed away and decided to make that into another memorial quilt. They waited to send it, out of respect for the family. They just recently sent the quilt and the little boy who they had picked was Justin. Out of thousands of little boys they picked Justin, not knowing Justin and Zack were in the same hospital, on the same unit and good friends and that Jill and I were good friends. They were just as shocked as we were. There have been many things that have always brought Justin and Zack close together and Jill and myself. When the quilt was sent Jill was here with me visiting and staying with me for a week. We got to open it together. I cried with so many feelings when we opened it. It is so beautiful and made with so much love. One of the squares was made on Justin's birthday.I think this is more than just a coincidence.... it is so much more. Thank you love quilters for this special gift!!!
Kaitlin turned 8 yrs old on Feb. 22. We would like to thank everyone that sent cards and gifts from the make-a-child organization and from the hugs-and-hope oganization. You made her feel very special and loved. It really meant a lot since naturally it was hard celebrating with out Justin here with us. She had her birthday at skate estate and had a good time with all her friends and family.
Kaitlin had been sick with bronchitis and a sinus infection just before her birthday, but is much better now. We are taking her for more blood work in about a week to get that re-checked again. The last blood work was off just a bit. Her afp level ( a liver tumor marker )was 6.8 and it shouldn't be over 6, so I called the doctors in Delaware to talk with them about it. They thought we should get it checked again in a month or so which is about now since we can't get it checked while she was and on medicine. I'm a wreck thinking about the next blood work and pray every day that it will be fine and not show an increase of any sort. We are going to continue to get her checked every 3 months or so to keep an eye on it.
Eric is doing ok. He had his MRI done and saw the neurologist last month. The cyst on his brain hasn't grown any since the last MRI. They are going to do another one in about a year to re-check him. They don't feel they need to check it sooner than that because it looked the same as it did. But if he should start with headaches or any other symptoms then we have to take him right back and get things checked.
I live in great fear every day for my children. To think that something could happen and have to go through another awful experience scares me so much. I'm going to live in fear like that always, every time they don't feel well or anything I'm going to analize every little thing. It's like having an anxiety attack 24 hours a day. It's a terrible feeling to live in fear every second.
It's hard sleeping any more. I hurt inside so much and now I feel like I'm two different people. One that is so hurt and trying to get through the day with the pain in my heart of loosing Justin and missing him more than anything and then trying to act ok around everyone and act like my self and say I'm fine and doing ok.
I've been trying to go through his things and pack things up. It's the hardest thing I've ever had to do.
Thank you all for so much support!! It really does help.

Tuesday, January 28, 2003 at 02:58 PM (CST)

Well this past month has been very hard to go through. I feel like I walk around in a daze and always try and act normal and ok for everyone else!! Well the truth is I'm not. The pain is still the same. I found a few poems that say what I feel and each time I update I'm going to put one on here so maybe you all can understand a little waht I'm feeling inside. Everyone says in time it will get better, but it hasn't it feels worse. Here is the poem I wanted to put in, I found this on another site and it really says what I feel:;

DON'T TELL ME
PLEASE DON'T TELL ME YOU KNOW HOW I FEEL,
UNLESS YOU HAVE LOST YOUR 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 CANNOT SEE,
DON'T TELL ME IT IS TIME TO MOVE ON,
BECAUSE I CANNOT,
DON'T TELL ME TO FACE THE FACT HE IS GONE,
BECAUSE DENIAL IS SOMETHING I CAN'T STOP,
DON'T TELL ME TO BE THANKFUL FOR THE TIME I HAD,
BECAUSE I WANTED MORE,
DON'T TELL ME WHEN I AM MY OLD SELF YOU WILL BE GLAD,
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 A WHILE,
AND PLEASE DON'T HESITATE TO SAY HIS NAME,
BECAUSE IT IS SOMETHING I LONG TO HEAR EVERYDAY,
FRIEND PLEASE REALIZE THAT I CAN NEVER BE THE SAME,
BUT IF YOU STAND BY ME, YOU MAY LIKE THE NEW PERSON I BECOME SOMEDAY

THANK YOU ALL FOR GIVING ME SUCH WONDERFUL SUPPORT. I JUST WANTED PEOPLE TO UNDERSTAND WHAT I FEEL. I WILL NEVER TRULY HEAL.

LOVE TO YOU ALL,
MARY

Friday, January 17, 2003 at 12:21 PM (CST)

Well I have tried several times to update but just couldn't at that time. I have read some of the journal entries but not all of them quite yet. I first want to Thank all of the military personal that have signed it, it truly means a lot to us. Also to everyone else that has signed Justin's guest book, just knowing so many people care and that Justin has warmed so many peoples hearts really makes a difference. He has touched many peoples lives and that makes us feel good about that.

Justin was truly an angel!! He was a very loving person and fought so hard through his battle. I miss my little boy more than anyone could imagine. Everyone says it will take time to heal, but I feel I will never heal totally. The heart ache and emptiness will be with me forever. I wish I could hold him again and kiss him again, hear his sweet voice again and just tell him how much I love him. I miss hearing his laugh and seeing him smile at me. No matter how badly he felt he always had a smile. I look at his picture constantly and talk to him often. I think sometimes I'm in a dream and when I wake up this never would of happend and that Justin will be here with us smiling, laughing, and giving me a hug and kiss. I feel so lost.

Eric and Kaitlin are doing ok or as best as they can too. They have rough days. It's very hard on them. Eric seems lost and Kaitlin seems to being secluding herself. It's hard helping them when you don't even feel like you can help yourself. My children are my world and always have been, but now one is gone, so tell me how do we resume our lives to be normal again. None of us will be the same again. Chuck and I seem like we are two worlds apart. He can go on and I feel like I can't. We are on one big string and he is at one end and I'm on the other and the kids are in the middle. It doesn't feel like it's fair at all.

I took Kaitlin to the doctors and Had a ct scan done on her and some blood work. Her afp is a 6.8 which is a tiny high. Nothing showed on the ct scan but it probably wouldn't either at that. I called the docs in deleware and they suggested getting it done again in a month to see if it had changed at all. She has had stomach pains on and off for a while now, same symptoms as with Justin. I'm scared of everything now. I will be so protective of the kids with every little thing. I have such great fear something is going to happen to them, I couldn't go through it again!!!!

My brother Dean, who gave part of his liver to Justin never really got enough recognition for what he did. He gave us more time with Justin!! With out the transplant we would of lost Justin long before now. He gave us more time to be with him , hold him and he gave him a chance at life. Justin appreciated this more than anything. He was our hero!! Thanks Dean for that!! You gave part of you for Justin and that meant more than words can ever say.

I really don't know how to end this, except to say thank you to everyone for your support and love for Justin. I hope he lives on in many of your hearts, he will never leave mine!!!!

I LOVE YOU JUSTIN!!!!!!!! LOVE, MOM

Saturday, December 31, 2002 at 09:11 AM (CST)

On Dec. 29th Justin was laid to rest with Family members close by his side.Much of the day was spent with thoughts and memories of this precious little boy. He always had a smile even when it hurt him so bad. How he loved to make deals that he always come out ahead on. The smile that told you he was planing and plotting trouble for someone. How it took so little to make him so happy.
How much it "HURTS" us to say "GOOD BYE". When we know that his pain is finally over. We know he will be in our thoughts and hearts forever along with all of the people he touched around the world.
Justin"s family can not Thank You enough for all your prayers and kind words. We read his web pages and know all the more what a special little boy he was. He has earned his "Angel Wings" and is in a better place waiting to show us the way.
Mary will update this page again in the future. Thank You All for your thoughts,kindness and prayers.
Justins Family

Justin's Family request that memorial donations be made to one of the following:
Berean Bible Church
109 County Rd. 2
Greene,NY 13778

The Greene Fire Dept./ Emergency Squad
8 N. Canal St.
Greene,NY 13778

Brisben Fire Dept.
Rte. 12
Brisben,NY 13830

Make-a-Wish Foundation of Central NY
Suite 900.Money Tower #2
120 Madison St.
Syracuse,NY 13202

Ronald McDonald House of Delaware
1901 Rockland Rd.
Wilmington,Del. 19803

To send a card to The Bryce Family mail to:
The Bryce Family
P.O. Box 104
Oxford,NY 13830

Saturday, December 07, 2002 at 05:40 PM (CST)

WELL IT'S BEEN A WHILE SINCE I'VE UPDATED AND I'M SORRY. ON MONDAY NOVEMBER 25TH JUSTIN DIDN'T GET ANY BETTER. MONDAY NIGHT WE HEADED TO WILMINGTON, DELAWARE TO THE HOSPITAL. WHEN WE ARRIVED JUSTIN WAS ADMITTED. THEY STARTED AN IV OF FLUIDS AND SOME PAIN MEDS AND ALSO RAN A CT SCAN ON HIS HEAD TO SEE WHY HE IS HAVING THESE REALLY BAD HEADACHES. THE NEXT MORNING WE SAT DOWN WITH THE DOCTORS AND DISCUSSED THE RESULTS. THE NEWS WASN'T GOOD AT ALL!!! THEY SAID HE HAD ANOTHER TUMOR ON THE BACK OF HIS BRAIN THAT WAS BLOCKING THE FLUID FROM GOING DOWN THE SPINE SO IT WAS BUILDING UP IN HIS BRAIN AND CAUSING SEVERE PRESSURE.THEY SAID WE CAN'T DO RADIATION BECAUSE THAT WOULD CAUSE SWELLING AND THAT WOULD BE WORSE AND THEY SAID IT WAS IMPOSSIBLE TO GO IN AND REMOVE THE TUMOR. THERE WASN'T ANY MORE TO DO THE DOCTORS SAID. WE BROUGHT JUSTIN HOME TUESDAY ON PAIN MEDS AND MEDICINE TO KEEP THE FLUID DOWN ON THE BRAIN. JUSTIN IS NOW ON HOSPICE. MY HEART ACHES SO BADLY.

THIS PAST WEEK THE PAIN GOT MUCH WORSE FOR JUSTIN AND HE IS NOW ON A CONSTANT IV PAIN MED. HE IS UNABLE TO GET OUT OF BED AND IS GETTING WEAKER EVERYDAY. HE CAN'T SIT UP BY HIMSELF AND ISN'T EATING BUT DOES DRINK FLUIDS STILL. THERE ARE TIMES HE JUST STARES OUT IN SPACE. THESE PAST TWO DAYS HE'S GOTTEN EVEN WORSE. TO SEE MY LITTLE BOY LIKE THIS JUST WRENCHES MY HEART!!! I SIT AND CRY AND BREAK DOWN WHEN NO ONE ELSE IS AROUND OR LATE AT NIGHT. I'VE NEVER FELT SUCH HEART ACHE. WE HAVE TRIED MANY OTHER RESOURCES AND HOSPITALS TO SEE IF THERE WAS ANYTHING THEY COULD DO BUT EVERY ONE SAYS EVERYTHING HAS BEEN DONE THAT COULD BE DONE. I'VE TRIED SEVERAL TIMES TO UPDATE BUT JUST COULDN'T DO IT AT THAT TIME UNTIL NOW AND THIS IS EVEN VERY VERY HARD TO DO.

THE PRIMARY SCHOOL STAFF WHERE I WORK HAD A SILENT AUCTION AND RAISED MONEY TO GO X-MAS SHOPPING FOR JUSTIN. HE TOLD THEM WHAT TO GET AND THEY WERE THE LITTLE ELVES AND DID. THE GIFTS ARE SO BEAUTIFUL AND WILL BE CHERISHED FOR EVER!!! JUSTIN GAVE HIS DAD A POCKET WATCH WITH A HUNTER ON IT, ME A BRACELET WITH AN ANGEL AND A NECKLACE WITH THE KIDS PICTURES ENGRAVED IN THE FRONT, KAITLIN AN ANGEL NECKLACE, ERIC AND RAY A WATCH WITH ACCESORIES, UNCLE MARK AND DEAN WATCHES, AUNTS ANGELS, GRANDMAS A NECKLACE WITH THEIR INTIALS ON THE FRONT, AND GRANDPAS WATCHES. ALL OF THEM WERE ENGRAVED ON THE BACK " LOVE JUSTIN". THEY WILL TREASURED ALWAYS. THANK YOU ALL SO MUCH, THAT MEANT MORE THAN YOU'LL EVER KNOW!!!

RAY'S GIRLFRIEND TAMMI HAS BEEN HERE EVERYDAY AFTER SCHOOL AND ON WEEKENDS TO BE WITH JUSTIN. HE REALLY LOVES HER AND REALLY CONNECTS WITH HER. SHE HAS BEEN SO WONDERFUL AND A TRUE ANGEL TO HIM. THANK YOU TAMMI FOR BEING SUCH A SWEETIE. WE LOVE YA FOR IT!!Justin got Tammi a heart necklace with her name on it and on the back it says love Justin because she's close to his heart.

MY MOM HAS BEEN DOWN EVERYDAY HELPING ME WITH LAUNDRY, DISHES, AND BRINGING GROCERIES WHEN WE NEED THEM AND HELPING ME WITH JUSTIN. THANKS MOM YOUR GREAT!!! I COULD NEVER DO IT WITH OUT YOU!! I NEVER HAVE TO CALL AND ASK FOR YOUR HELP, YOUR JUST ALWAYS THERE FOR US WHEN WE NEED YA AND I WILL NEVER BE ABLE TO THANK YA ENOUGH FOR ALL THAT YOU HAVE DONE. ESPECIALLY NOW.

I ALSO WANT TO THANK EVERYONE WHO IS BRINGING DINNERS. YOU ALL ARE SO WONDERFUL!! IT HELPS SO MUCH!! JUSTIN HAS HAD MANY, MANY VISITORS. I THINK IT HELPS HIM A LOT TO SEE PEOPLE FOR A SHORT VISIT AND MEANS A LOT TO HIM. THANK YOU.

I ALSO WANT TO THANK MY CLOSE, CLOSE FRIENDS FOR ALL THAT YOU HAVE DONE FOR ME. MARION YOU HAVE BEEN THERE FOR ME THROUGH THICK AND THIN AND ALWAYS BY MY SIDE AND MY ANGEL. THANK YOU FOR BEING SUCH A TRUE FRIEND. ALSO JILL, NANCY, DONNA, JODY, CAROLE AND MANY, MANY OTHERS. YOU ALL ARE THE BEST!!!

WELL THIS HAS BEEN VERY HARD AND I REALLY DON'T HAVE MANY WORDS EXCEPT THAT THE HEART ACHE IS AWFUL. I WILL TRY AND KEEP UPDATED MORE DAILY.

Sunday, November 24, 2002 at 11:55 AM (CST)

Just doing a quick update, Justi isn't doing very well at all!! Yesterday moening he was doing fine and he had company from Aunt Betty and Robin. He started having some abdominal pain in the late morning so I gave him some tylenol to help it. Later in the afternoon he started with a headache. The headache worsened and turned quite bad and severe. He layed down but that didn't seem to help, the pain was to much and then he started getting sick to his stomach towards the evening. We had company ( Bob and Carrie Tompkins ). They helped us out quite a bit with Justin. We called A.I. DuPont hospital and we gave him some tylenol with codine, that helped for a while and let him rest for a while. I stayed up with Justin through the night. He wasn't running a temp. his blood pressure was fine but his heart rate and oxygen level were very low. He has been oxygen and his monitor since late yesterday afternoon. He had a very hard night and got sick to his stomach quite a few times. His temp. this morning was almost 99.0 and his blood pressure was a little low. He still has a very bad headache and has been sleeping all day today. I gave him some tylenol with codine and some zofran to help with his stomach upset. He has only been a ble to take only a few important meds that he really, really needs but not the rest. He has been very weak and not doing well at all. I wake him up quite a few times to get him to take a few sips of water to keep him from dehydrating. My little boy is very, very sick. I'm very worried and not doing well with this. Chuck is home today. We are going to call DuPont hospital first thing in the morning to talk with Dr. Dunn. They said if he got any worse to take him to the hospital. Please say a prayer for Justin, he truly needs one right now. I'm very scared for my little boy and my heart is aching awful for him going through this.

Friday, November 22, 2002 at 05:03 PM (CST)

Monday night we went to my mom's for dinner again. Justin didn't eat a lot but enjoyed himself. The hunters on the first day didn't have any luck at all. They were all quite disappointed. After dinner we helped with dishes and then headed home to give Justin his meds. His temp. was 98.7, his blood pressure was running a little low but his heart rate was ok. He fell asleep early and was very tired. We recieved some of his blood work results today. His white count, hemaglobin, and platelets all dropped. They didn't drop enough for a transfusion but still dropped. His liver enzymes still look ok. His one liver number was up a little bit but not a great deal. We didn't recieve his afp level or his rapammune level ( which is his anti-rejection drug level for the liver transplant ).
Tuesday morning Justin's temp. was normal, his blood pressure and his pulse rate were a little low. He ate a little better today but not by much. Again we went to my moms for dinner. We had to leave right after because Justin wasn't feeling well and wanted to go home. His temp. that night was 99.8. we gave him some tylenol and he went to sleep early. His alarm he is hooked up to during the night went off a few times from low oxygen and also low heart rate. It was a long night. This morning Grandpa Bryce took the kids to school.
Wednesday morning Justin's temp. down to 98.4. His blood prssure and his heart rate were low. He didn't hardly eat anything today. We had to go to Grandma Cummings house during the day. Justin stayed with her while i went to go get some groceries. Then I picked him up and we headed home in time to get Eric and Kaitlin off the bus. It was a very busy day. When i got home we had to get the groceries unloaded and take the dog out, do laundry, dishes and dinner. I was so exhausted by the evening. I recieved a call from A.I.DuPont today, they got his afp level. It almost doubled, it's now over 340 thousand. My heart sank. It hadn't been doubling and that was not what i wanted to hear. I cried for quite some time after the phone call, chuck wasn't home at that time and it was hard to handle all on my own. It was hard telling him when he did get home. That drained me totally. After i was finished with all of Justin's meds at 10pm i went right to bed. His temp. in the night was normal. His blood pressure is still low but his heart rate was a little better. Aunt Nickie took the kids to school for me again today. The hunters still haven't gotten anything. I think the deer are hiding on them. My car has been making a really bad cluncking noise in the front end these past few days and sounds like something is broken. Made an appointment to get it looked at tomorrow morning.
Thursday morning Justin's temp. was 99.2, his blood pressure was even lower, and so was his heart rate. Chuck took the kids to school this morning. He went with us to take the car looked at and also get the recall done on it for the shifter. We went to the pet depot while the car was getting fixed. We got Brave some new bedding, and some other items for him. We saw a lot of really cute things and cute animals. After that we went back and picked up the car. They fixed the shifter and said the noise in the front end was the rocking bars i guess they are called, were broke. So chuck went and got some new ones and fixed that when he got home. After we picked up the car we went to lunch. Justin ate a corn on the cob, vanilla pudding, and a little jello and then he was full. afterwards we went home. It just started to rain and i had to rush around and carry Justin in ( who fell alseep in the car ) and run out take down all my laundry that got wet, take the dog out, unpack the car and then make a phone call to sloan kettering on a clinical trial i found on the computer that Justin might be able have. Then i had to all of my dishes i had left the night before because i was exhausted and went to bed early. Again it was another exhausting day. Justin didn't really eat a lot today and had some pain in his abdomen area through out the day. Chuck and I are hoping that if Justin can do this clinical trial that maybe this is our cure all. Justin's temp. tonight was 98.7. Justin was very tired out from today. His blood pressure came back up and was a little more normal tonight along with his heart rate.
Today Aunt Nickie took the kids to school and ran some errands for me and took his blood down to the clinic for me that I drew first thing this morning. Justin's temp. this morning was 98.7. He ate quite well all day. He seemed to feel a little better today than yesterday. He had pain a few times in his abdomen but not quite as much as yesterday. His blood pressure this morning was lower but his heart rate was fine. I weighed Justin today and he only weighs about 50 pounds. he has lost 13 pounds since we were last in Delaware on October 22. That is quite a bit of weight. He looks even more skinny and all bone. When i gave him a bath today i had to leave the room for a second because i started crying. All of his bones just stick right out, there is nothing to him. My heart just ached.
I would like to say a huge thank you to everyone at Hugs and Hope club. They had 5 wonderful volunteers donate 7 quilts and blankets, then they held a 2 week auction for Justin and our family. I recieved the money order the other day and just broke down and cried. This club has been by our side and have helped us in so many ways. I can never thank you all enough for all that you've done. God bless you all and thank you from the bottom of my heart. Also I would like to say a huge thank you to my good friend Jill and Mora for my web cam they sent to us so we can see each other and talk with each other everyday. I haven't gotten it hooked up yet but when i do you can bet Jill and I will still miss each other but at least we will be able to see one another. Jill and Mora you guys are great, thank you. I can't wait to see you!!
Lately I have been so tired and worn down. I think everything is finally catching up to me and it is so hard just doing daily life. Laundry, dishes, house work, the kids and just trying to keep up with everyhting and everything with Justin. Plus the worry of Justin wears me the most, I think of it day in and dream of it at night. I just wish there was something I could do tho help my little boy more. Just breaks me all up inside. Plus I have a ton of things I'm trying to go through that are still in boxes. I don't think I've ever been this drained or felt this way. Now with x-mas coming and the thought of shopping and all is so dredful. The kids Aunt Nickie is going to try and help me out with that in the next few weeks. There are days I wish I could Just feel like i could get a break. But if I slack it seems everything falls apart. My house seems like it has boxes and clutter all over the place. Hopefully it will get better soon and i can get more organized and maybe feel better about things and not so exhausted. Well I'll try and not be so long in between th updating this next time. Makes for long reading and I'm sorry. Take care everyone and keep praying.

Monday, November 18, 2002 at 11:00 AM (CST)

FRIDAY MORNING JUSTIN'S TEMP. WAS 98.9. I CHECKED HIS TEMP. THROUGH OUT THE DAY TO WATCH AND MAKE SURE IT DIDN'T GO ANY HIGHER. FIRST THING IN THE MORNING I TOOK HIM TO SCHOOL TO GET HIS SCHOOL PICTURES DONE. HE WAS SO HAPPY TO HAVE THEM TAKEN. THEN WE RAN A FEW ERRANDS AROUND TOWN. I ALSO DREW HIS BLOOD WORK AND WE DROPPED THAT OFF AT THE CLINIC TO BE TAKEN TO THE LAB. WE MIGHT FIND OUT ABOUT THAT TODAY OR TOMORROW HOPEFULLY. TODAY JUSTIN SLEPT FROM 11:30 TO 2:30PM. HE HAD ME QUITE WORRIED FOR A WHILE BUT I GUESS THE MORNING JUST EXHAUSTED HIM. I HAD TO WAKE HIM TO GET READY TO TAKE HIS 3PM MEDS. IN THE EVENING MY PARENTS CAME TO WATCH THE KIDS WHILE WE WENT TO DINNER. CHUCK TOOK ME OVER TO THE OLD JERICHO, WE HAD THE BUFFET, IT WAS GOOD. MY PARENTS BROUGHT ME A FEW GROCERIES AND OTHER ITEMS I NEEDED. MY MOM CALLS ME EVERY DAY TO SEE IF I NEED ANYTHING OR IF I NEED HER TO RUN TO THE STORE FOR ANYTHING. SHE KNOWS I DON'T GET MUCH TIME AND I NEVER GET THE TIME TO CALL SO SHE GIVES ME A QUICK CALL EVERY DAY TO SEE HOW THINGS ARE GOING AND TO SEE IF I NEED ANYTHING OR ANY HELP. I CALLED ONCE WHILE WE WERE AT DINNER TO SEE HOW THE KIDS WERE. EVERYHTING WAS GOING WELL. THEN JUSTIN CALLED ME AROUND HIS MEDICINE TIME AND WANTED US TO COME HOME. HE ISN'T USED TO DOING HIS MEDS WITH OUT ME AROUND AND IT'S HARD FOR HIM BECAUSE HE TAKES QUITE A FEW. SO CHUCK AND I FINISHED UP AND CAME RIGHT HOME. JUSTIN AROUND 9PM STARTED WITH A TEMP. AGAIN OF AROUND 99.9. WE GAVE HIM SOME TYLENOL AND HE FELL ASLEEP. HE WAS VERY TIRED.

SATURDAY MORNING JUSTIN WAS UP EARLY BEFORE 7AM WATCHING T.V.. HIS TEMP. IN THE MRONING WAS 98.1 AND HE WAS FEELING GOOD. HE HAS BEEN EATING A LITTLE BETTER THESE PAST FEW DAYS. UNCLE MARK AND AUNT NICKIE CALLED AND OFFERED TO TAKE ERIC AND KAITLIN TO SCHOOL IN THE MORNINGS FOR US. I WAS RELIEVED. NOW THE KIDS WON'T HAVE TO WORRY ABOUT HAVING PAJAMA MAMA TAKE THEM TO SCHOOL. LATE SATURDAY AFTERNOON WE WENT UP TO MY PARENTS HOUSE FOR DINNER. JUSTIN WAS VERY GOOD EATING ONLY WHAT HE WAS SUPPOSED TO AND WE LET HIM HAVE A TREAT AFTER. MY MOM HAS A FEW HUNTERS EVERY YEAR THAT STAY AND SHE DOES BIG DINNERS FOR THEM. I FELT BAD I WASN'T ABLE TO HELP HER MUCH THIS YEAR. AFTER DINNER AND I HELPED WITH DISHES WE HEADED HOME TO GIVE JUSTIN HIS MEDICATIONS AND GET THE KIDS READY FOR BED. BEFORE DINNER KAITLIN AND I WENT SHOPPING AND THE KIDS BOUGHT ME A RING THAT SAYS MOM AND A PAIR OFHEART EARRINGS FOR MY BIRTHDAY. KAITLIN DID GREAT PICKING THEM OUT. WE HAD A GOOD TIME. AFTER WE WERE HOME FOR A BIT THE KIDS GRANDFATHER BRYCE CAME OVER. HE BROUGHT OVER A CHECK OF A DONATION FROM HIS AUCTIONEERS ASSOCIATION THAT WAS COLLECTED FOR JUSTIN. THAT WAS SO NICE OF THEM!!! THANK YOU TO ALL OF THE NY AUCTIONEERS. THENHE STAYED AND PLAYED UNO WITH THE KIDS FOR A WHILE. KAITLIN LOVES TO GET NEW PLAYERS WHO DON'T KNOW HOW TO PLAY SO SHE CAN BEAT THEM. JUSTIN HAD TO HELP HIS GRANDPA OUT FOR A WHILE. BEFROE HE LEFT HE ALSO OFFERED TO HELP TAKE THE KIDS TO SCHOOL IN THE MORNINGS. SO I GUESS AUNT NICKIE AND GRANDPA BRYCE WILL BE TAKING TURNS . THANK YOU TO BOTH OF YOU FOR THE HELP. IT HELPS A LOT NOT HAVING TO TAKE JUSTIN OUT FIRST THING IN THE MORNING IN THE COLD AND TRY AND JUGGLE ALL OF HIS MEDS. LATE AROUND 10PM JUSTIN'S TEMP. WENT UP TO 99.5. WE GAVE JUSTIN SOME MORE TYLENOL TO KEEP IT DOWN FOR THE NIGHT. WE AREN'T SURE WHY HE IS STARTING TO RUN TEMPS. AT NIGHT BUT IT IS STARTING TO WORRY US.
SUNDAY JUSTIN'S TEMP. WAS DOWN TO 97.9. WHICH WAS GOOD. WE ARE A LITTLE WORRIED ABOUT HIS HEART RATE DURING THE NIGHTS NOW THOUGH. IT DROPS DOWN REALLY LOW TO AROUN 75. WE AREN'T TOO SURE ABOUT THAT. WE HAVEN'T HAD TO UP HIS OXYGEN AT ALL TO KEEP HIM HIGH ENOUGH FOR THE NIGHT THOUGH SO THAT IS A GOOD SIGN. SUNDAY KAITLIN TARTED WITH ANOTHER TUMMY ACHE AND NOT FEELING HERSELF. I THINK I'M GOING TO GET HE A DOCTORS APPOINTMENT TO JUST GET SOME BLOOD WORK AND GET HER CHECKED OUT. THIS IS HAPPENING TO MUCH FOR COMFORT AND I'M STARTING TO WORRY. YOU CAN TELL SHE REALLY ISN'T FEELING WELL AT ALL. ERIC WENT TO A FRIENDS HOUSE AND I HAD TO RUN OVER AND PICK HIM UP. THE KIDS GRANDMA BRYCE CAME OVER TO WATCH JUSTIN AND KAITLIN WHILE I WENT AND DID THAT. I WAS MAKING CARROT JUICE AND HAD TO PUT THAT ON HOLD TILL I GOT BACK, THEN ERIC FINISHED IT UP FOR ME. HE IS A GREAT HELPER. JUSTIN FELL ALSEEP FOR A LITTLE BIT ON HIS GRANDMA BRYCE AND THEN I HAD TO WAKE HIM FOR HIS MEDS. HE WAS VERY TIRED AGAIN TODAY. SHE STAYED AND PLAYED A FEW GAMES OF UNO WITH KAITLIN FOR A BIT. AS YOU CAN SEE KAITLIN LOVES TO PLAY UNO. SHE GETS EVERYONE WHO WALKS THROUGH THE DOOR. IN THE LATE AFTERNOON WE AGIN WENT TO MY PARENTS HOUSE FOR DINNER. THE KIDS GOT THEIR CARDS OUT AND EVERYONE PLAYED CARDS WITH THEM. THEY ALL HAD A GOOD TIME. AGAIN WE LEFT AFTER DISHES AND HAD TO GET HOME FOR JUSTIN'S MEDS. HIS TEMP. TONIGHT WAS 99.7 AROUND 10PM AGAIN. AGAIN WE GAVE HIM TYLENOL.

LAST NIGHT IS SNOWED!!! THE GROUND IS WHITE!! IT WAS SO PRETTY LOOKING OUT THE WINDOW THIS MORNING. JUSTIN REALLY ENJOYED IT. OF COURSE THE KIDS WERE HOPING FOR NO SCHOOL BUT NO SUCH LUCK. CHUCK GOT UP AND LEFT FOR HIS FIRST MORNING OF HUNTING AT 4:30AM TO GO TRAPES THROUGH THE COLD SNOWY WOODS FOR THE BIG DEER. AUNT NICKIE CALLED THIS MORNING AND HEADED DOWN TO GET THE KIDS FOR SCHOOL. THEY HAD NO ELECTRICITY AND HAD A LOT OF BRANCHES DOWN AROUND THEIR HOUSE FROM THE WET HEAVY SNOW. WE GOT MAYBE A FEW INCHES BUT IT WAS A HEAVY SNOW AND WET. I THINK THIS WEEKEND I MIGHT GET OUR X-MAS DECORATIONS OUT FOR THE KIDS TO PUT UP. THEY LOVE TO DECORATE EARLY AND ENJOY THEM. JUSTIN IS DOING WELL THIS MORNING. HIS TEMP. IS 98.6 AND HE IS EATING PRETTY WELL THIS MORNING. MAYBE TODAY OR TOMORROW WE WILL GET HIS LAB RESULTS FROM FRIDAY. I'M MAKING SOME PHONE CALLS TODAY ON SOME TREATMENTS I FOUND AND SEE IF THEY MIGHT BE ABLE TO HELP IN SOME WAY. IT NEVER HURTS TO FIND OUT.

Thursday, November 14, 2002 at 09:50 PM (CST)

WELL TUESDAY NIGHT JUSTIN'S GRANDMA AND GRANDPA CUMMINGS CAME DOWN TO VISIT FOR A BIT AND BROUGHT ME SOME GROCERIES. LATER IN THE NIGHT AROUND THE TIME HE TAKES HIS 8:00PM MEDS HE WAS RUNNING ANOTHER FEVER OF 99.2. HE WAS REALLY TIRED AND FELL ALSEEP EARLY. IT WAS HARD FOR HIM TO GET HIS 10:00 PM MEDS DOWN.

WEDNESDAY MORNING HIS TEMP. WAS 99.1. HE WAS VERY SLUGGISH ALL DAY. THIS DAY WAS MY BIRTHDAY AND ALL THE KIDS WISHED ME A HAPPY BIRTHDAY AND GAVE ME A VERY CUTE CARD. CHUCK GAVE ME A REALLY NICE CARD ALSO AND IS TAKING ME OUT TO DINNER TOMORROW NIGHT (FRIDAY). MY PARENTS SENT ME A DOZEN RED AND YELLOW ROSES. THANK YOU MOM AND DAD, I LOVED THEM!!! MY BROTHER DEAN AND SISTER-N-LAW MARY GAVE ME A BEAUTIFUL ANGEL. THEN IN THE AFTERNOON MY FOUR GOOD FRIENDS CAME OVER WITH ANOTHER GIFT OF AN ANGEL ( A SISTER ANGEL ) AND MANY CARDS FROM EVERYONE AT WORK. THANK YOU ALL FOR EVERYTHING AND FOR WHO SENT E- CARDS!!!! IT WAS A HARD DAY!! I TRIED VERY HARD TO ENJOY THE DAY BUT IN THE AFTERNOON I RECIEVED MORE NEWS THAT HIS AFP HAS GONE UP TO OVER 200 THOUSAND. HIS OTHER COUNTS LIKE HIS WHITE COUNT AND PLATELETS WERE A LITTLE BETTER THAN LAST WEEK. JUSTIN IS SO, SO SKINNY!! HIS LITTLE BONES JUST STICK RIGHT OUT AND HE HAS DARK CIRCLES UNDER HIS EYES. THESE DAYS IT IS HARD TO BE JOYFUL. IT IS GETTING HARDER TO JUST GET THROUGH THE DAY FOR ME. CHUCK SAID HIS AFP ISN'T DOUBLING SO THAT IS A GOOD SIGN. HE HELPS KEEP ME UP AND SPIRITED.

THIS MORNING JUSTIN'S TEMP. WAS 99.0. HE ATE WELL TODAY. BETTER THAN HE HAS BEEN LATELY. WE TOOK HIM OUT A COUPLE TIMES TODAY. IT WAS A VERY NICE DAY. IN THE LATE MORNING HE FELL ASLEEP FOR ABOUT AND HOUR AND HALF. LATER IN THE AFTERNOON HE HEARD HIS DAD MOWING WITH THE LAWN TRACTOR SO HE WENT BACK OUTSIDE AND DROVE THE LAWN TRACTOR AROUND THE YARD FOR QUITE A WHILE. HE HAD A GOOD TIME AND ENJOYED THE FRESH AIR. HIS TEMP. TONIGHT AT 8:00PM MEDS WASN'T VERY GOOD. IT WAS 99.9. HE TOOK HIS MEDS FOR ME AND THEN I TOOK IT AGAIN AND IT WAS 100.2. WE GAVE HIM SOME TYLENOL TO KEEP IT FROM GOING ANY HIGHER. THEN HE WENT TO BED AFTER HIS 10:00PM MEDS. IF HIS TEMP. GOES UP DURING THE NIGHT HIS HEART WILL GO UP AND THAT WILL MAKE HIS MONITOR GO OFF, SO I WILL BE ABLE TO KEEP TRACK OF DURING THE NIGHT. EVERY NIGHT HE IS HOOKED UP TO A MONITOR THAT TELLS ME HIS HEART RATE AND OXYGEN LEVEL. IF IT GOES UP OR DROPS IT WILL ALARM. HE IS ALSO HOOKED UP TO OXYGEN EVERY NIGHT. HOPEFULLY EVERY THING WILL GO WELL FOR THE NIGHT.

TOMORROW JUSTIN IS GOING IN TO SCHOOL TO GET HIS SCHOOL PICTURES DONE. HE MISSED THE DAY THEY WERE DONE AND MAKE-UP DAY IS TOMORROW. HE WAS VERY SAD HE HAD MISSED PICTURE DAY AND REALLY WANTED HIS DONE, SO THAT'S WHAT WE ARE DOING FIRST THING IN THE MORNING. HE IS VERY EXCITED ABOUT IT. TONIGHT WE PICKED OUT HIS CLOTHES HE WANTED TO WEAR FOR HIS PICTURES AND GOT THEM ALL READY FOR THE MORNING. GETTING UP EARLY AND TRYING TO GET AROUND IN THE MORNING IS GOING TO BE HARD THOUGH. HE TAKES A LOT OF PILLS IN THE MORNING AND HAS A LOT OF TREATMENTS. I WILL MISS CHUCK NEXT WEEK WHEN HE GOES TO GO DEER HUNTING. HE HAS BEEN TAKING ERIC AND KAITLIN TO SCHOOL FOR ME EVERY MORNING AND NOW I WILL HAVE TO TRY AND GET THEM THERE AND ALSO DO ALL THAT JUSTIN NEEDS IN THE MORNING. I BET I WILL BE DRIVING THEM AND DROPPING THEM OFF STILL IN MY WARM FUZZY PAJAMAS. HOPE I DON'T EMBARASS THEM TOO MUCH.

Tuesday, November 12, 2002 at 10:57 AM (CST)

OVER THE WEEKEND JUSTIN DOING OK. SATURDAY HIS UNCLE MARK AND AUNT NICKIE CAME TO VISIT WITH HIM FOR A BIT. THEN HE WENT FOR A RIDE WITH THEM IN UNCLE MARKS NEW TRUCK. THEY WENT TO THE VILLAGE VARIETY AND BOUGHT A CHESS GAME AND MARBLES. KAITLIN WENT ALSO. WHEN THEY RETURNED THEY PLAYED CHESS AND THEN JUSTIN PLAYED ON THE COMPUTER FOR A WHILE. UNCLE MARK AND KAITLIN ALSO PLAYED CHESS AND YAHTZEE. THEY ALL HAD A GOOD TIME. JUSTIN DIDN'T EAT VERY WELL THAT DAY.

ON SUNDAY JUSTIN WAS REALLY TIRED OUT. HE RELAXED ALL DAY. EAT DIDN'T EAT VERY WELL THIS DAY EITHER. HIS GRANDMOTHER AND GRANDFATHER CUMMINGS CAME DOWN AND BROUGHT HIM SOME YOGURT AND HIS MAIL FROM THE LEGO COMPANY THAT THEY HAD ORDERED FOR HIM. THEY STAYED AND VISITED QUITE A WHILE. STEVE AND FRAN STRNATKA ALSO CAME TO VISIT. MY COUSIN SUE CAME UP AND TOOK A NICE PICTURE OF MY MOM AND DAD WITH THE KIDS AND ALSO HOOKED A PRINTER FOR MY COMPUTER. SHE IS A COMPUTER WIZ. JUSTIN IN THE EVENING HAD A HEADACHE AND LAYED DOWN AND WENT TO SLEEP EARLY.

ON MONDAY JUSTIN WAS FEELING A LITTLE BETTER IN THE MORNING BUT WAS STILL TIRED. HE WENT OVER TO HIS GRANDMOTHER AND GRANDFATHER BRYCE'S FOR ABOUT AN HOUR AND THEN CAME BACK AND FELL ALSEEP FOR A FEW HOURS. THEN HE WENT OUT WITH HIS DAD IN THE WORK SHOP UNTIL DINNER WAS READY. HE GOT SOME FRESH AIR WHICH WAS GOOD FOR HIM. WE HAD A FEW REALLY NICE DAYS. TODAY IS CHILLY AND RAINY.

JUSTIN IS DOING A LITTLE BETTER TODAY ENERGY WISE. HE HAS BEEN RUNNING A LOW GRADE FEVER AROUND 99.2 SINCE YESTERDAY. I'M A LITTLE WORRIED ABOUT THAT. HE SEEMS HAPPIER TODAY THOUGH.

I HAVE TO SAY SORRY, I PUT DOWN THE WRONG SITE FOR ZACK'S WEB PAGE AND I'VE ALREADY APOLOGIZED TO JILL FOR IT. I FELT REALLY BAD. HIS WEB PAGE IS www.caringbridge.com/fl/zackerykull . ALSO I WANT TO SAY A HUGE THANK YOU TO HER FOR MY SWEET PACKAGE FOR MY BIRTHDAY. JILL YOU ARE THE BEST!!

BRAVE IS DOING VERY WELL, I HAVE BEEN LOOKING UP INFORMATION ON LEOPARD TORTOISES. ANYONE FROM TURTLE HOMES THAT HAS ANY INPUT I'M WELCOME FOR ANY INFORMATION. WE WEIGHED HIM THIS MORNING AND HE WEIGHS A LITTLE OVER 3 OZ. WE LOVE TO WATCH HIM AND TALK TO HIM. HE LOVES HIS MORNING BATHS. SOON AS I CAN I WILL BE PUTTING A PICTURE OF HIM ON THE WEB PAGE WITH JUSTIN.

Friday, November 08, 2002 at 10:45 PM (CST)

HI, WELL TODAY JUSTIN WAS OK. HE IS MORE TIRED OUT AND SLUGGISH THAN THE PAST. LIKE I SAID HE IS LOOKING THIN AND MORE SICK TO ME LATELY. HE ISN'T EATING QUITE AS MUCH AND SEEMS TO HAVE PAIN EVERYDAY IN A DIFFERENT PLACE.

THIS MORNING I DREW HIS BLOOD WORK. WE PROBABLY WON'T GET THAT BACK UNTIL LATE MONDAY AFTERNOON. WE ARE STILL ON OUR DIET AND TRYING NEW THINGS EVERY DAY WITH FOODS AND THINGS TO TRY AND HELP. I'M STILL LOOKING FOR NEW TREATMENTS EVERY DAY AND SEARCHING FOR ANYTHING THAT MIGHT HELP.

ERIC AND KAITLIN ARE DOING OK. THEY KNOW IT IS BAD RIGHT NOW AND ARE DOING OK FOR THE TIME BEING. KAITLIN HAS STAYED HOME FOR TWO DAYS FROM SCHOOL WITH A COLD AND NOT FEELING WELL AND HAVING STOMACH PAIN. IF SHE IS STILL HAVING THIS BY MONDAY WE WILL TAKE HER TO THE DOCTORS AND GET SOME BLOOD WORK DONE AND I WILL MAKE SURE I GET AN AFP LEVEL ON HER. IT MIGHT JUST BE NERVES WITH EVERYTHING THAT IS GOING ON BUT I DON'T WANT TO TAKE ANY CHANCES. ERIC GOES IN DECEMBER FOR ANOTHER MRI ON HIS BRAIN TO SEE IF THE CYST HAS GROWN OR ANYTHING. HOPEFULLY WITH THIS NEW DIET IT HAS GONE AWAY.

I'VE BEEN FEELING REALLY WORRIED LATELY AND DEPRESSED. JUSTIN IS SUCH A TROOPER AND DOES ALL THAT I ASK OUT OF HIM WITH THIS DIET AND ALL. MY HEART JUST ACHES FOR HIM AND I'M SCARED OF LOOSING MY LITTLE BOY. I WAS HOPING THIS WOULD TURN THINGS AROUND. THERE HAVE BEEN SO MANY PEOPLE I'VE HEARD ABOUT THAT IT HAS. MAYBE IT HASN'T BEEN LONG ENOUGH YET, I DON'T KNOW. BUT MY WORRY IS STILL WITH ME AND IT IS SO HARD. TO WATCH YOUR CHILD GO THROUGH SO MUCH IS HEART BREAKING AND TEARS YOU UP INSIDE. I WISH I COULD MAKE IT ALL OK AND HIM WELL AGAIN AND A PAIN FREE LITTLE BOY. WHO CAN RUN AND PLAY AND ENJOY EVERYTHING.

I HAVE TO THANK ALL OF YOU THAT HAVE COMMENTED ON THE "ME" PERSON. IT IS NICE TO KNOW THAT YOU ARE OUT THERE SUPPORTING ME AND MY FAMILY. "ME" I HAVE DELETED ALL OF YOUR ENTRIES ( THANK YOU GOOCH ), LIKE EVERYONE SAID YOU AREN'T WORTH THE STRESS. THANK YOU ALSO MARK FOR TRYING AND BE SO NICE AND BE SUPPORTIVE AND TRY AND TAKE MAKE IT ALL RIGHT. BUT I THINK THIS "ME" PERSON HAS NOTHING BETTER TO DO WITH THEIR LIVES BUT TO CAUSE GRIEF IN OTHER PEOPLES LIVES. IT'S VERY SAD TO THINK THERE ARE SUCH SHALLOW PEOPLE OUT THERE. "ME" I REALLY HOPE GOD CAN HELP YOU IN SOME WAY AND MAKE YOU A BETTER PERSON, BECAUSE IF I WAS YOU I WOULD FEEL ASHAMED. I'M SORRY BUT THOSE ARE MY FEELINGS. AGAIN TO ALL OF YOU WHO HAVE SUPPORTED US WITH THIS "ME" PERSON THANK YOU!!!! I TOOK GOOCH'S ADVICE AND DELETED THEM, BECAUSE AFTER I THOUGHT ABOUT IT I REALLY DON'T WANT THAT IN MY MEMORY BOOK OF JUSTIN. THANKS AGAIN!!

GOD BLESS AND THANK YOU TO ALL THE PEOPLE WHO ARE SO SUPPORTIVE, YOU TRULY MEAN A LOT TO US. IT HELPS MORE THAN YOU KNOW AND ALL THE PRAYERS.

I TALKED WITH JILL TODAY ONLINE. I MISS YOU JILL!!!!! COULD YOU ALL GIVE JILL A PRAYER AND SOME SUPPORT TOO, SHE MISSES ZACK SO MUCH. (SO DO JUSTIN AND I ALSO) SHE HAS MANY HARD DAYS STILL AND MY HEART ACHES FOR HER. I CAN'T WAIT FOR HER TO MOVE TO NY. I MISS HER TERRIBLY!! PLEASE GO TO www.caringbridge.com/ny/zacharykull

Thursday, November 07, 2002 at 05:54 PM (CST)

Well again we have been very busy. I had Justin's blood work done and his afp went up again the week of the holloween. His afp went up way over 100 thousand. Not good at all. Then on Friday evening we had to go to calling hours for a good friend who lost her father-n-law. Also on Friday Justin went into school to visit with his class. He had a very good time and the kids put on a nice play for him. They did a nice job. The weekend was very busy with everyday things. Which now is very very hectic.

On Tuesday we went to Fort Drumm where Raymond ( Our oldest son who is 20 ) is stationed. We arrived around noon there and were taken to the mansion guest house to unpack and eat lunch. The guest house was wonderful. It had three bed rooms, kitchen, livingroom, diningroom, and two baths. After lunch we went to an army show. It was great!! They did a great job. Justin was asked to give one of the officers a bouquet of flowers at the end of the show. He did a great job. Then after the show we went back to the guest house and where Raymond also met us. He was also at the show. We went to see Ray's barrocks where he stays and then went to the store on base. After we went back to the guest house and had dinner. After a while after dinner Ray went back to his barracks and we went to bed after all of Justins meds were done.

The next day ( wednesday ) we got up and they picked us up at 8:30am. We went out in the fields where Ray's unit was. Ray was supposed to be there but something got miscommunicated and they had to send someone for him. There we saw the big guns fire off. Boy are they loud!! We also had an army breakfast with the soldiers. I really like my home breakfast a lot better. Ha Ha. The one seargent presented Justin with a special coin. Then we went back to the guest house for lunch. Ray got to the field just before we left, so we got to say good bye to him.

After lunch we went to a building that had engagement skills trainer, which is like big boy video games. It teaches you how to fire the guns and bazooka's and all. Justin, Eric, and Kaitlin had a blast in there. Justin didn't want to leave. From there we got to go see a military medfivac helicopter. The kids all got to sit in a helicopter and see what it was like. By this time Justin was getting tired. They also presented Justin with a special coin.

Then we went to the military police station. The kids got see the jail sells and all. Then they rode in a military police car to the kennel. Here they put on a great demostration. They showed how a military dog attacks and bites a bad guy. Justin really enjoyed this. The best part was when they put the big protecting jacket on Chuck and the dog attacked and bit Chuck. Justin really loved this. He kept asking them to release the dog off the leash so the dog could really get his dad. Chuck was a little nervous. But boy was it funny.

Then for the end of our day we went to the officers building. Here Justin met every one in charge of Fort Drumm. The commanders. Then they held a special flag ceremony. They hung a brand new flag that day in Justins honor and then presented it to him. He also recieved a plaque and more coins and many other items. His brother and sister also recieved coins and items to remember their day. It was great. Then we headed home around 6:00pm or so. We arrived home a little after 8:00pm. We were all exhausted.

I mkept Kiatlin home today with a low grade temp. and not feeling to well. She was exhausted. She slept until 11:00am this morning. Eric got right up and his dad took him to school. Justin just lounged around all day today. We also brought his tortoise over today. BRAVE is now home with Justin. Thank you to Charlie and Gladys for taking care of him for us while we weren't home. Justin is very happy to have his tortoise home with him!!

Tomorrow I have to draw more blood work from Justin. We are still on our special diet and pray that something kicks in soon to show signs that it is working. Justin is thinning down and looking not well. He is tiring a lot faster and seems weaker. Please keep praying.

To who ever is "ME", this took me forever to type, time i don't have that takes away from Justin. I type in caps because it's quicker and easier for me and like I said doesn't take precious time away from Justin. My time is very limited and I'm very, very busy. My days start very early in the morning and don't end till very late at night and I'm exhausted and very stressed and this adds more stress getting messages like the ones you've left. Also I feel if you can't sign your name and who you are then you shouldn't be signing the guest book. I'm sorry but those are my feelings and I showed my husband and he feels the same. So who ever is me please be upfront and not hide yourself and sign it with your name. Also don't leave me messages that have been like the ones you've left. We don't need more stress in our lives right now. Thank you.

Now I would like to thank all of you who have been praying and our supposrt group, it truly means so much to us. It is so nice to know there are such caring and understanding people out there. Please keep the prayers coming we truly need them. God Bless you all!!

Tuesday, October 29, 2002 at 01:42 PM (CST)

HI EVERYONE
AGAIN IT HAS BEEN A WHILE SINCE I'VE UPDATED, WE ARE SO BUSY. I FORGOT TO MENTION ON THE LAST ENTRY THAT ON FRIDAY THE 11TH WE ALSO WENT TO THE SYRACUSE AIRPORT AND JUSTIN WAS ABLE TO SEE AN F16 AIR FORCE PLANE COME IN. A GENTLEMAN FROM GREENE SON IS IN THE AIR FORCE AND HE GAVE JUSTIN AN AIRFORCE JACKET WITH HIS NAME ON IT AND JUSTIN GOT TO LOOK INTO THE PLANE AND EVERYTHING. WE ALL WENT AND IT WAS GREAT!! HE ALSO DID A FLY BYE AND TIPPED HIS WING FOR JUSTIN. BOY WAS IT GREAT!! EVERYONE REALLY ENJOYED IT. BUT BOY ARE THEY LOUD!!
A LOT HAS HAPPENED SINCE OCT. 17TH AND I'LL TRY AND FIT IT ALL IN AND HOPEFULLY NOT FORGET ANYTHING. OUR LIVES HAVE BEEN VERY BUSY. I'M STILL TRYING TO ORGANIZE THE HOUSE AND KEEP UP WITH ALL OF JUSTIN'S TREATMENTS, MEDS, AND DAILY LIFE WITH THE OTHER KIDS. BUT SOMETHING EXCEPTIONAL HAPPENED ON FRIDAY OCT. 18TH. THE STUDENT COUNCIL INVITED JUSTIN TO THE RALLY AT THE HIGH SCHOOL. THEY HAD JUSTIN ESCORT TAMMY STINARD ( ONE OF THE NOMINEES FOR QUEEN) OUT ON THE GYM FLOOR, THEY ALL DID A STANDING OVATION FOR HIM. MY HEART JUST RACED AND THE TEARS FLOWED. THEY ALSO HAD A SPECIAL CHAIR WITH HIS NAME ON IT FOR HIM. THEN SHANNON REID FROM THE STUDENT COUNCIL PRESENTED A CHECK TO HIM FROM THE STUDENT COUNCIL THAT THEY ALL RAISED. THEY GAVE UP THEIR AWARD SO THEY COULD PRESENT JUSTIN WITH THIS MONEY THEY RAISED. THEY WOULD OF RECIEVED AN AWARD FOR ALL OF THEIR HARD WORK BUT DECIDED TO GIVE THAT UP AND GIVE IT TO JUSTIN. IF THESE AREN'T SPECIAL YOUNG ADULTS THAN I DON'T WHO IS. I COULDN'T BELIEVE IT AND AGAIN THE TEARS FLOWED. THEN ANOTHER VERY SPECIAL THING HAPPENED, JOSH BRAMAN WAS ONE OF THE NOMINEES FOR KING, THEY ALL RECIEVED A KEY CHAIN WITH A KING CROWN ON IT AND JOSH GAVE HIS TO JUSTIN BECAUSE HE THOUGHT HE WAS A KING. HOW SPECIAL. I CRIED ALL THE WAY HOME THAT DAY. I'M STILL IN AWE FROM THIS, THEY ARE WONDERFUL AND ALL OF THEM HAVE ONE OUR HEARTS COMPLETELY.
THAT WEEKEND WAS ANOTHER BUSY WEEKEND WITH NORMAL DAILY LIFE. THEN ON THE 22ND OF OCT. WE HAD TO GO BACK TO WILMINGTON DELEWARE TO HAVE A CT SCAN AND BLOOD WORK DONE ON JUSTIN. WE LEFT AROUND 6AM TO BE THERE BY 10AM. JUSTIN'S BLOOD WORK CAME BACK LOOKING GREAT!! THE BEST IT HAS LOOKED IN A LONG TIME. WE DIDN'T GET HIS AFP LEVEL BACK ON THAT DAY THOUGH. THE CT SCAN WAS NOT GOOD AT ALL. WHEN I HEARD THE RESULTS TO IT MY HEART SUNK. IT SHOWED JUSTIN HAS A LOT OF TUMOR ACTIVITY. THE TUMORS ON HIS BRAIN ARE THE SAME, HE HAS 5-6 TUMORS ON HIS RIGHT LUNG, ONE BY OR ON HIS DIAPHRAM, ONE BEHIND HIS KIDNEY, 2 DEFINITE ONES ON HIS LIVER AND POSSIBLY A THIRD ONE. THIS WAS A VERY HARD THING TO HEAR AND STILL IS. BUT JUSTIN STILL LOOKS AND IS FEELING GOOD RIGHT NOW AND WE AREN'T GOING TO GIVE UP HOPE. WE ARE STICKING TO OUR NEW DIET AND SOME OTHER HERBAL TREATMENTS AND PRAYING SOMETHING WORKS. WE NFOUND OUT HIS AFP LEVEL THURSDAY, IT WAS OVER 100 THOUSAND, NOT GOOD AT ALL. AGAIN MY HEART SUNK. BUT LIKE I SAID WE AREN'T GOING TO GIVE UP HOPE.
THURSDAY WE WENT TO BREWSTER TO NY WHERE MY BROTHER MARK WORKS. HE KNOWS SOME PEOPLE FROM THE TRAIN STATION THERE AND THEY SET UP A RIDE IN A DIESEL ENGINE FOR HIM. IT WAS GREAT. JUSTIN WAS ABLE TO RIDE IN THE DIESEL ENGINE AND HE HAD A BLAST. HE LOVED IT!!! JUSTIN LOVES TRAINS. THEY GAVE HIM A BAGFUL OF THINGS THAT INCLUDED A BACK PACK, COAT, HATS LIGHTS AND OTHER THINGS. IT WAS AWESOME. HIS BROTHER, SISTER AND HIM AND CHUCK AND I HAD A GREAT TIME!! UNCLE MARK AND SCOTT ENJOYED IT ALSO. THEN WE ALL WENT TO GET A BITE TO EAT AND THEN WE HEADED HOME. IT WAS AROUND MIDNIGHT WHEN WE GOT HOME.
FRIDAY WE HAD ANOTHER SPECIAL THING HAPPENING. MY COUSINS, AUNT AND FAMILY HAD A SPEGHETTI DINNER FOR JUSTIN HERE AT OUR CHURCH. THEY DID A LOT OF HARD WOIRK AND ALL THE VOLUNTEERS WHO HELPED OUT WERE GREAT!! WOW. IT WAS A GREAT TURN OUT. THEY HAD A SPECIAL SLIDE SHOW AND MUSIC AND EVERY THING. THEY ALL DID A LOT OF HARD TIRING OWRK AND WE THANK EVERYONE FOR ALL OF IT. YOU ALL ARE AWESOME PEOPLE AND WE LOVE YA ALL. THANKS A MILLION!!!! SATURDAY WE HAD TO GET GROCERIES AND SUNDAY WE WENT TO A GOOD FRIENDS ( RICK AND MOLLY HINCHCLIFFS) FOR FISHING AND DINNER. ALL THE FISH SEEMED TO KNOW TO BITE ON JUSTIN'S LINE. THE ONLY PEOPLE WHO CAUGHT FISH WERE JUSTIN, CHUCK AND RICK. JUSTIN OF COURSE CAUGHT THE MOST. HE HAD A BLAST. WE GOT SOME GREAT PICTURES ON THAT DAY.
TODAY JUSTIN IS STILL DOING VERY WELL, PLAYING WITH HIS LEGOS AND ENJOYING BEING HOME WITH FRIENDS AND FAMILY. THIS WEEK WE ARE GOING TO BRING HIS TORTOISE " BRAVE " OVER AND PUT HIM IN JUSTIN'S ROOM SO HE CAN FINALLY ENJOY HIM AND BE WITH HIM. JUSTIN CAN'T WAIT.
ERIC WAS ELECTED INTO STUDENT COUNCIL. YEH, ERIC!! WE HAVE TEACHER CONFERENCES COMNING UP SOON, THIS WEEK. HAVE TO RUN JUSTIN'S BLOOD WORK DOWN TOMORROW. ANOTHER BUSY WEEK. TLAKED WITH MY GOOD FRIEND JILL AND TRYING TO TALK HER INTO MOVING TO NY. WE MISS EACH OTHER.
I JUST WANT TO END THIS BY SAYING A HUGE THANK YOU TO EVERYONE FOR ALL THAT YOU'VE ALL DONE FOR US, ALL THE PRAYERS, DONATIONS AND HARD WORK YOU'VE ALL DONE. THANKS A MILLION!!!!!!!! THERE WILL NEVER BE ENOUGH WORDS TO SAY THANK YOU FOR ALL THAT HAS BEEN DONE. WE GREATLY APPRECIATE IT ALL. TRULY!!! LOVE AND BLESSINGS TO EVERYONE.

Thursday, October 17, 2002 at 12:56 PM (CDT)

HI EVERYONE, IT'S BEEN A WHILE AND I'M SORRY FOR THAT BUT BOY IS IT GOOD TO BE HOME BUT ALSO VERY, VERY HECTIC. WE HAVE BEEN IN A WIRL WIND SINCE WE'VE BEEN HOME. I GUESS I'LL START FROM THE BEGINNING. JUSTIN AND I LEFT DELAWARE AND HEADED HOME AROUND 10:00 AM ON MONDAY SEPT. 30TH. WE ARRIVE INTO BINGHAMTON A LITTLE AFTER 1PM AND STOPPED IN TO SEE HIS DAD AT HIS WORK. AFTER THAT WE ARRIVED HOME TO OUR HOUSE AROUND 2:30-2:45PM. THE KIDS WERE SO EXCITED TO HAVE US HOME!! WE BROUGHT EVERYTHING IN THE HOUSE AND THEN THE NEXT FEW DAYS WE TRIED TO UNPACK. WE HAD VISITORS AND THE PHONE RANG AND RANG. WE WERE ALSO IN THE PROCESS OF GETTING JUSTIN'S MAKE-A-WISH READY TO GO AND READY FOR THAT. WOW!!!

ON SATURDAY OCTOBER 5TH JUSTIN HAD PART OF HIS MAKE-A-WISH. HE WENT TO THE ARMORY AND SPENT THE DAY WITH SOLDIERS. HE WAS MADE A SODIER AND PUT INTO A UNIFORM. HE GOT TO GO ON SOME MACHINERY AND THEY ALSO HAD A SPECIAL CEREMONY THERE FOR HIM. THEN HE RODE IN A HUMVEE WITH THE SOLDIERS TO THE CHURCH FOR HIS SPECIAL DINNER SEND OFF. THERE HE HAD FRIENDS AND FAMILY SEE HIM GET SWORN INTO THE ARMY AND THEN A NICE DINNER. IT WAS GREAT. HE MADE THE FRONT PAGE OF THE PAPER AND WAS ON T.V. ALSO. HE WAS VERY EXHAUSTED ON SUNDAY.

SUNDAY AFTERNOON WE LEFT FOR THE OTHER PART OF HIS MAKE-A-WISH. WE HAD TO ARRIVE IN NEWARK, DELEWARE ON THIS DAY. WE STAYED AT THE EMBASSY SUITES HOTEL. WOW WAS THAT NICE. EARLY MONDAY MORNING WE LEFT AND HEADED FOR ARBEDEEN PROVING GROUNDS. WE WERE GREETED BY MANY ARMY PERSONALE THERE AND ALSO ANOTHER MAKE-A-WISH ADVOCATE. HERE JUSTIN RECIEVED A RIDE IN A STRIKER AND ALSO RODE IN A TANK AND ANOTHER HUMVEE. HE RECIEVED A SOME OF THE ARMY FOOD. AFTER WE LEFT THERE WE HAD TO GO TO THE MARRIOT MOTEL IN MARYLAND, RIGHT OUTSIDE OF WASHINTON,D.C.. THIS WAS FANTASTIC. SO HUGE AND BEAUTIFUL. WOW!!!!!! THAT EVENING AROUND 4:00-4:30PM WE WERE PICKED UP BY A LIMOUSINE AND ESCORTED BY THE PRESIDENTS POLICE OFFICERS TO THE PENTAGON. IT WAS AWESOME!!! AT THE PENTAGON THEY PUT JUSTIN IN ANOTHER ARMY SUIT AND HE HAD A BIG SURPRISE, THEY FLEW IN HIS BROTHER RAY, WHO IS ALSO IN THE ARMY AT FORT DRUM, N.Y.. THEN THEY HAD HIM SWORN IN. HE SIGNED PAPERS AND EVERYTHING. HE MET SGT. MAJOR TILLY, SECRETARY OF DEFENSE RUMSFIELD AND A 3 STAR GENERAL CRADDOCK. THEY GAVE HIM PLAQUES, COINS, AND MANY, MANY ARMY ITEMS. THEY HAD A CAKE AND PUNCH ALSO FOR HIM. IT WAS GREAT!!! JUSTIN COULD OF NEVER ASKED FOR A BETTER WISH. THEY WERE AWESOME. THEN HE GOT RIDE IN A CART THROUGH THE PENTAGON. JUSTIN HAD THE TIME OF HIS LIFE. HE WAS SUCH A HAPPY LITTLE BOY!! AFTER WE LEFT THE PENTAGON HE GOT TO GO TO THE WHITE HOUSE AND GET A TOUR OF THAT. THERE HE WAS ABLE TO BOWL IN THE WHITE HOUSE BOWLING ALLEY, WHICH WAS ONE OF HIS DREAMS. HE LOVED IT. WHEN WE GOT BACK TO THE HOTEL HE WAS EXHAUSTED. THEN HE WAS SO EXCITED HE COULDN'T FALL ALSEEP. HE HAD SUCH A WONDERFUL DAY AND THE EXCITEMENT OF IT TOOK OVER. HE WAS ONE SPECIAL BOY AND BOY DID HE FEEL THAT WAY. WE ARE STILL IN AWE FROM ALL THEY DID. I CAN NEVER THANK THEM ALL ENOUGH. THEY ARE VERY AWESOME PEOPLE AND VERY SPECIAL!!!!

ON TUESDAY THEY PICKED US UP IN THE LIMO AROUND 8:00AM. JUSTIN WENT BACK TO THE PENTAGON FOR HIS MISSION AND ALSO BE MP FOR THE MORNING. HE RODE IN ANOTHER HUMVEE ACROSS THE PENTAGON LAWN. SO EXCITING!! FROM THE PENTAGON HE WENT TO FORT BELVOIR. HERE HE HAD HIS SECRET MISSION AND AGAIN RECIEVED MANY PLAQUES AND COINS WITH A SPECIAL CEREMONY. HE WAS ABLE TO DRIVE IN SOME MACHINERY AND MET THE RESCUE TEAM OF THE ARMY. THEY PUT HIM IN A BASKET AND LOWERED HIM TO THE GROUND. AGAIN HE HAD THE TIME OF HIS LIFE. HE RECIEVED A HELICOPTER RIDE ALSO. IN THE HELICOPTER HE FELL ALSEEP, HE SAID IT WAS SUCH A SMOOTH RIDE. HE ATE LUNCH AT THE BASE WITH ALL OF THE ARMY PERSONAL THERE. WOW ANOTHER AWESOMNE DAY. THEN FROM THERE WE WENT TO THE COAST GUARD WHERE HE RODE ON A COAST GUARD BOAT. THAT WAS GREAT ALSO. KAITLIN AND ERIC LOVED AND JOINED IN ON EVERYTHING ALSO WITH THEIR BROTHER. BY THAT NIGHT HE WAS AGAIN EXHAUSTED BUT WOUND RIGHT UP FROM ALL THE EXCITEMENT. AT THE ARMY BASE HE ALSO RECIEVED ARMY MONOPOLY. HE LOVES IT. OF COURSE WE HAD TO PLAY IT.

WEDNESDAY WAS OUR DAY TO DO THINGS. WE DIDN'T GET UP AND AROUND QUITE AS EARLY THOUGH. BUT WE WENT TO THE ARLINGTON CEMETARY AND WATCHED THE CHANGING OF THE GUARDS. WE WERE SO HAPPY TO GET TO SEE THAT. THEN WE WENT TO THE AQUARIUM. THE KIDS LOVED THAT ALSO. WE RODE THE METRO TO THESE SIGHTS. THAT WAS AN EXPERIENCE. NERVE WRECKING. I GUESS I'M NOT A METRO CITY PERSON. THE DOORS ON THOSE TRAINS CLOSE QUICK, YOU HAVE TO JUMP ON AND JUMP OFF. IWAS PERTIFIED OF LOOSING ONE OF THE KIDS. CHUCK WAS ON HIS OWN IF HE GOT LOST. HAHA. I JUST GRABBED THE KIDS AND OFF AND THEN ON. MY NERVES WERE SHOT BY THE END OF THE DAY.

THURSDAY JUSTIN HAD TO BE IN WILMINTON DELEWARE FOR A CT SCAN AND BLOOD WORK. THE CT SCAN LOOKED LIKE MAYBE THE ONE SPOT ON HIS HEAD MIGHT OF SHRUNK. HIS BLOOD WORK THOUGH SHOWED DIFFERENT SIGNS. HIS AFP DOUBLED, WHICH MEANS TUMOR IS GROWING RAPIDLY. HIS WHITE COUNT DROPPED AND HIS SOME OF HIS OTHER COUNTS DID ALSO. THEN WE RECIEVED SOME OTHER BAD NEWS. JUSTIN'S LITTLE FRIEND HEATHER-LYNN PASSED AWAY SUNDAY OCT. 6TH. JUSTIN AND HEATHER-LYNN HAD BECOME VERY CLOSE. OUR HEARTS WERE BROKEN. AROUND 3:30-4:00PM WE HEADED HOME TO N.Y.. WE ARRIVED HOME AROUND 8:00PM OR SO. VERY EXHAUSTED. WE UNPACKED EVERYTHING THAT NIGHT FROM THE CAR AND THE NEXT FEW DAYS I TRIED TO GET EVERYTHING PUT AWAY AND ORGANIZED. ( WHICH STILL ISN'T DONE YET, WE ARE STILL YET UNPACKING FROM DELEWARE) THE DOWN STAIRS IS CLEAN NOW BUT OUR UPSTAIRS IS A MESS!!

I FORGOT TO TELL YOU ALSO THAT KAITLIN RECIEVED STUDENT OF THE WEEK ON THE FRIDAY BEFORE WE WENT ON JUSTIN'S MAKE-A-WISH. GREAT JOB KAITLIN!!!

ON MONDAY WE GOT BACK JUSTIN'S BLOOD WORK FROM DELEWARE. HIS AFP MORE THAN DOUBLED AGAIN AND HIS COUNTS ARE DOWN EVEN MORE. NOW HIS AFP IS OVER 61,000. MY HEART SUNK. WE ARE ON A SPECIAL DIET THAT IS SUPPOSED TO HELP WITH THINGS. I'M TRYING TO KEEP MY FAITH BUT SOME DAYS IT'S SO HARD. OF COURSE MONDAY WAS A CRYING DAY. I FEEL SO HELPLESS AND WANT TO JUST MAKE MY LITTLE BOY SURVIVE. WE ARE STICKLY A VEGATARIANS RIGHT NOW. SOME DAYS ARE GOOD AND OTHER DAYS I FEEL LIKE I'M FALLING APART AND MY HEART ACHES SO.

I DREW JUSTIN'S BLOOD AGAIN ON WEDNESDAY. HIS WHITE COUNT IS BACK UP A LITTLE BIT AND HIS PLATELETS ARE ABOUT THE SAME. WE WON'T KNOW ABOUT HIS AFP LEVEL UNTIL FRIDAY OR NEXT WEEK. I'M ALMOST SCARED TO KNOW WHAT IT IS BUT WANT TO KNOW AT THE SAME TIME.

ANYWAYS WE ARE STILL PUTTING THINGS AWAY AND TRYING TO ORGANIZE THE HOUSE STILL. THERE IS ANOTHER SPEGHETTI DINNER FOR JUSTIN ON OCT. 25TH AT OUR CHURCH. PLEASE KEEP PRAYING FOR A MIRACLE FOR JUSTIN. I'M NEVER GOING TO GIVE UP!!! HE'S MY LITTLE SOLDIER AND QUITE THE FIGHTER.

Saturday, September 28, 2002 at 11:28 PM (CDT)

JUSTIN'S T.V. INTERVIEW WENT ....OK. IT WAS VERY HARD. THE REPORTER ASKED HIM AND I QUESTIONS THAT WERE HARD TO TALK ABOUT. IT WAS ON T.V. THAT NIGHT ON WHY-Y. JUSTIN DID FAIRLY WELL THROUGH OUT THE WEEK. WE WENT TO RADIATION DAILY AND HE WAS DOING VERY WELL AT THE MCDONALD HOUSE. WE WERE ALSO PACKING ALL WEEK GETTING READY FOR OUR JOURNEY HOME ON SATURDAY. WE HAD QUITE A BIT TO PACK UP. THE LAST TWO DAYS OF RADIATION WERE A LITTLE BIT STRONGER DOSE.

CHUCK CAME DOWN ON FRIDAY AND ARRIVED AROUND 11AM. WE HAD SOMETHING TO EAT AND THEN WENT TO RADIATION. AFTER RADIATION WE WENT AND HAD A MEETING WITH DR. DUNN. AFTER OUR MEETING WE WENT AND SAID BYE TO A LOT OF PEOPLE THROUGH OUT THE HOSPITAL. OUR MEETING WAS ABOUT THE SAME AS WE ALREADY TALKED ABOUT, NOT REALLY MUCH CHANGE.

IN THE EVENING JUSTIN STARTED NOT FEELING VERY WELL. HE HAD A LOW GRADE TEMP. AT FIRST. THEN THE TEMP. ROSE QUICKLY IN A VERY SHORT TIME. IT WENT UP TO 102.6 AND JUSTIN HAD A SMALL LIKE SEIZURE. WE CALLED THE DOCTOR AND DR. DUNN SAID TO TAKE HIM RIGHT OVER TO THE HOSPITAL TO 3A AND ADMIT HIM. JUSTIN ALSO WAS SICK TO HIS STOMACH. HE IS NOW IN ROOM 3A-03 ON THE BONE MARROW UNIT. SO AS YOU CAN SEE WE DIDN'T MAKE IT HOME TODAY. THEY HAD TO FRAW BLOOD CULTURES, A URINE CULTURE AND START ANTIBIOTICS. MAYBE ON MONDAY IF NOTHING GROWS FROM THE CULTURES WE WILL BE ABLE TO GO HOME.

SO IF WE DO GET RELEASED ON MONDAY JUSTIN AND I WILL PACK UP THE REST OF OUR THINGS AND GET IN THE CAR AND HEAD HOME ON OUR OWN AND THAT WAY CHUCK WON'T HAVE TO WORK ALL DAY, DRIVE DOWN HERE AND THEN TURN AROUND DRIVE ALL THE WAY BACK FOR ANOTHER 4 HOURS AND THEN GET UP AND GO TO WORK IN THE MORNING WITH LITTLE REST.

JUSTIN IS GETTING PLATELETS TONIGHT AND WILL PROBABLLY HAVE TO GET BLOOD TOMORROW. THEY HAD TO TRANSFUSE HIS PLATELETS TONIGHT BECAUSE THEY WOULD OF BEEN TO LOW TOMORROW. THEY WANT TO KEEP THEM OVER 60 BECAUSE OF THE SEIZURES AND HEMORAGING THAT COULD HAPPEN. HE IS SLEEPING SO NICELY RIGHT NOW. WELL BETTER GO GET SOME REST TONIGHT. BYE FOR NOW AND SAY A PRAYER FOR US TO GO HOME ON MONDAY..

Tuesday, September 24, 2002 at 09:17 AM (CDT)

JUSTIN IS GETTING RELEASED TODAY TO THE MCDONALD HOUSE. HE IS SO HAPPY. WE ARE WAITING TO HEAR BACK ON THE CT SCAN THAT WAS DONE YESTERDAY. EARLY THIS MORNING JUSTIN RECIEVED PLATELETS. THEN AT 11:30AM HE IS GETTING INTERVIEWED BY A TELIVISION CREW TODAY OVER AT THE MCDONALD HOUSE.
JUSTIN IS EATING THIS MORNING SOME TOAST. THEN HIS INTERVIEW AND THEN RADIATION. MORE LATER, WE ARE NOW GETTING READY TO LEAVE.

Monday, September 23, 2002 at 07:10 AM (CDT)

JUSTIN'S NIGHT FRIDAY WAS OK. ON SATURDAY CHUCK AND THE KIDS CAME DOWN. THEY ARRIVED AROUND 11AM. JUSTIN HAD A VERY NICE SURPRISE SENT TO HIM. HIS FRIEND SHELBY MADE HIM A JEAN QUILT WITH A PILLOW AND THEN HAD ALL OF HIS SCHOOL FRIENDS SIGN IT. ON THE OTHER SIDE OF THE QUILT WAS TURTLES, FROGS,AND LIZZARDS. JUSTIN LOVED IT!!!! JUSTIN IS EATING A LITTLE BIT HERE AND THERE. HIS COUNTS HAVE ALL DROPPED. HE IS NOW RECIEVING THE NEUPOGEN SHOT EVERY DAY AND HAD TO GET PLATELETS AND BLOOD ON SATURDAY. THEY ARE GOING TO GIVE HIM PLATELETS NOW IF THEY GET AROUND 60 AND NOT LET THEM GET ANY LOWER THAN THAT. JUSTIN HAD A GOOD WEEKEND WITH HIS DAD, ERIC, AND KAITLIN. WE HAVE ALL MISSED EACH OTHER SO MUCH.
JUSTIN WENT FOR A SHORT WALK AROUND THE UNIT ON SATURDAY AND AGAIN ON SUNDAY. HE WENT TO THE ROOM ACROSS THE HALL WHERE HIS FRIEND HEATHER LYNN IS, TO SEE HER. SHE ISN'T DOING TO WELL AND HAS BEEN GIVEN ONLY 2 WEEKS TO LIVE. SHE HAS LEUKEMIA. JUSTIN WOULD LIKE EVERYONE TO SAY A SPECIAL PRAYER FOR HIS FRIEND HEATHER LYNN. HE SAYS THANK YOU.

LAST NIGHT JUSTIN HAD A LOW GRADE TEMP.. HE WENT TO SLEEP AT 10PM AND SLEPT STRAIGHT THROUGH THE NIGHT. THIS MORNING HE IS DOING GOOD. HE STILL HAS A LOW GRADE TEMP. BUT IS FEELING WELL.

THIS WEEKEND WE HAD A TALK WITH THE DOCTOR AND DISCUSSED THINGS ABOUT JUSTIN. WE ARE GOING TO FINISH OUT RADIATION THIS WEEK AND ALSO HAVE A MEETING WITH THE DOCTORS EITHER TUESDAY OR WEDNESDAY ON WHAT ELSE THERE IS TO DO. DR.DUNN IS GOING TO MAKE SOME CALLS AND SEE IF THERE IS ANY OTHER OPTIONS FOR US. IF NOT WE HAVE TO THINK ABOUT JUSTIN AND MAKING HIM AS HAPPY AS CAN BE. WE WON'T KNOW ANY MORE UNTIL OUR MEETING THIS WEEK. WE MIGHT BE HOME THIS WEEKEND. THIS IS VERY HARD FOR CHUCK AND I TO THINK ABOUT AND WE ALSO HAVE TO THINK ABOUT THE OTHER KIDS AND THEIR FEELINGS AND WHAT THEY ARE GOING THROUGH. I'VE NEVER FELT THE WAY I'VE BEEN FEELING. MY HEART ACHES SO BADLY.

Friday, September 20, 2002 at 01:34 PM (CDT)

LAST NIGHT WAS SO AWFUL!!! JUSTIN'S TEMP. WAS QUITE HIGH LAST NIGHT AND IT WOULDN'T COME DOWN WITH TYLENOL. HIS COUNTS HAVE ALL DROPPED AND HE NEEDED PLATELETS. THEY HAD TO PUT ICE PACKS ON HIM LAST NIGHT TO TRY AND BRING DOWN HIS TEMP. HIS TEMP. ROSE TO 104.7. HE STARTED GETTING SICK TO HIS STOMACH ALSO AND COULDN'T KEEP HIS 8PM MEDS DOWN. AROUND 9:30PM THEY CALLED IN A DOCTOR AND AT THAT TIME HE HAD A SEIZURE, HE STOPPED BREATHING FOR A MINUTE AND THEY CALLED A CODE BLUE. ALL THEY CODE BLUE TEAM ARRIVED AND JUSTINS SEIZURE LASTED ABOUT 3 TO 5 MINUTES. MY HEART SANK. I WAS SO SCARED FOR MY LITTLE BOY. I'VE NEVER FELT FEAR LIKE THAT BEFORE. RIGHT AFTER THAT THEY TOOK HIM DOWN FOR A HEAD CT SCAN TO SEE IF HE HAD BLEEDING IN HIS BRAIN. THEY SAID THERE WASN'T SO THEY TOOK HIM RIGHT TO THE ICU UNIT INCASE HE HAD ANOTHER SIEZURE. I COULDN'T SLEEP, I WAS SO AFRAID IT WOULD HAPPEN AGAIN, SO I SAT IN A CHAIR BY HIS BED AND WATCHED HIM AND DOZED IN AND OUT ALL NIGHT. THEY NOW HAVE HIM ON SEIZURE MEDICINE CALLED DILANTIN. HE WILL PROBABLLY HAVE TO BE ON THIS FROM NOW ON. THEY SAID IT IS VERY LIKELY THAT HE WILL HAVE ANOTHER ONE AND I WILL HAVE TO BE TRAINED IN HOW TO HANDLE THEM. I AM SO SCARED OF THIS HAPPENING AGAIN. NEVER FELT SO SCARED IN MY LIFE.

JUSTIN HAS BEEN MOVED BACK INTO HIS ROOM ON 3A THIS AFTERNOON. HE HASN'T EATEN ALL DAY BUT IS DRINKING. HE KEPT HIS MEDS DOWN SO FAR TODAY. HE RECIEVED PLATELETS LAST NIGHT AND THEY HAVE MOVED HIS NEUPOGEN SHOT BACK TO EVERY DAY NOW. HIS TEMP. RIGHT NOW WITH TYLENOL IS 99.3. HE HAS TO KEEP THE OXYGEN RIGHT ON NOW BECAUSE HIS OXYGEN LEVEL DROPS WITH OUT IT. THEY ARE STILL MONITORING HIM QUITE CLOSELY. I CAN'T EVEN EXPLAIN THE FEAR I WAS FEELING LAST NIGHT WHEN THIS HAPPENED. IT WAS AWFUL.

CHUCK AND POSSIBLY THE KIDS WILL BE DOWN TOMORROW MORNING SOME TIME. IF JUSTIN HAS A BAD NIGHT TONIGHT THEY WILL HAVE TO STAY HOME WITH THEIR GRANDPARENTS. WE WILL HAVE TO WAIT AND SEE. HOPEFULLY JUSTIN WILL BE OK TONIGHT.

Thursday, September 19, 2002 at 11:47 AM (CDT)

THIS MORNING JUSTIN WOKE UP NOT FEELING TO WELL. HE WAS FEELING VERY COLD. I TOOK HIS TEMP AND IT WAS 98.8 AND HIS BLOOD PRESSURE AND OTHER VITALS WERE OK. HE TOOK HIS MORNING MEDS AND ABOUT A HALF AN HOUR LATER I TOOK HIS TEMP. AGAIN AND IT WAS 100.8. HE WAS LAYING IN BED AND ABOUT HALF AN HOUR I TOOK HIS TEMP. AGAIN AND IT WAS 102.4. I CALLED THE DOCTORS AND TOOK HIM RIGHT OVER TO THE HOSPITAL. HIS TEMP. WHEN WE GOT THERE WAS 103 AND HE WAS PUT RIGHT ON OXYGEN. I HAD HIM ON OXYGEN OVER AT THE MCDONALD HOUSE BECAUSE HE ACTED LIKE HE WAS WORKING A LITTLE HARDER TO BREATH AND HIS OXYGEN LEVEL WAS ONLY 92 WITH OUT THE OXYGEN. THEY DIRECTLY ADMITTED HIM ONTO 3A AGAIN. WE ARE IN ROOM 3A-02. THEY HAVE STARTED HIM ON TWO IV ANTIBIOTICS, ALL OF HIS MEDS STILL, THEY HAVE ORDERED A CHEST X-RAY AND ALSO AN MRI OF HIS HEAD. THEY DREW BLOOD CULTURES FROM HIS LINES AND THEY ARE DOING A URINE CULTURE ALSO. THEY GAVE HIM SOME TYLENOL TO BRING DOWN HIS TEMP. AFTER ALL THE CULTURES WERE DRAWN. JUSTIN DID WANT TO COME BACK TO THE HOSPITAL AT ALL. HE WANTED THE DOCTORS TO COME OVER TO THE MCDONALD HOUSE TO HIM. RIGHT NOW HE IS FEELING A LITTLE BETTER SINCE HIS TEMP. IS DOWN A LITTLE BIT. HE ALSO HAS A HEADACHE. NOW WE WILL HAVE TO WAIT AND HAVE ALL THE TESTS DONE AND SEE WHAT IS GOING ON AND WAIT FOR THE RESULTS. WE HAVEN'T HEARD WHEN THE X-RAY WILL BE OR THE MRI. JUSTIN DIDN'T GET ANY BREAKFAST THIS MORNING, BUT SO FAR FOR LUNCH HE'S HAD SOME WATER AND 2 MAYONAISE SANDWICHES. HE DOESN'T WANT TO STAY HERE THE NIGHT AND IS HAVING A HARD TIME WITH THAT. HE KEEPS TELLING THEM HE FEELS BETTER NOW SO HE WANTS TO LEAVE AND GO BACK TO THE MCDONALD HOUSE. CAN YOU BLAME HIM. I REALLY HOPE THIS WILL BE A SHORT STAY AND WE WILL BE OUT BY THE WEEKEND MAYBE. THAT WOULD BE NICE FOR JUSTIN. NOW WE ARE HAVING TO MISS OUR RADIATION TODAY. SO NOW THEY MIGHT HAVE TO ADD ANOTHER DAY ON FOR THAT.
WHAT A DEPRESSING DAY. IT WAS GOING SO GOOD AND JUSTIN WAS FEELING GOOD AND EATING WELL AND BEING FREE FROM THE HOSPITAL SO HE COULD BE A BOY AND HAVE A LITTLE NORMALCY. IT WAS SO NICE!! MY HEART ACHES FOR HIM.

Wednesday, September 18, 2002 at 10:36 AM (CDT)

WELL WE HAVE BEEN VERY, VERY BUSY. JUSTIN HAS BEEN DOING GREAT!! LAST WEEK ON WEDNESDAY AFTERNOON WE GOT BACK JUSTIN'S AFP LEVEL AND IT HAS GONE UP AGAIN, IT MORE THAN DOUBLED THIS TIME, WHICH IS REALLY NOT GOOD. THAT MEANS THERE IS MORE TUMOR GROUTH SOME PLACE. JUSTIN HAD A VERY GOOD WEEK WITH UNCLE DEAN. THEN UNCLE DEAN TOOK HIM TO TOYS-R-US AND BOUGHT JUSTIN A GAMEBOY ADVANCE GAME. SO I GUESS YOU ALL KNOW WHAT JUSTIN HAS LIKED DOING SINCE THEN, PLAY HIS GAMEBOY.
ON THURSDAY AFTERNOON JUSTIN HAD HIS SURPRISE HE WAS SUPOSED TO HAVE ON HIS BIRTHDAY FROM HUGS AND HOPE AND MY VERY GOOD FRIEND JILL. IT WAS JUNGLE JOHN!!!! JUSTIN LOVED IT SO MUCH. JUNGLE JOHN BROUGHT PYTHON SNAKES, LIZZARDS, A SNAPPING TURTLE (THAT SCARED ME RIGHT OUT OF MY WITS), AN ALLIGATOR (QUITE BIG ONE), AND A HUGE, HUGE, ALBINO PYTHON, THAT COULD OF EATEN JUSTIN FOR LUNCH IF HE WAS HUNGRY. OF COURSE JUSTIN HAD TO WEAR GLOVES BECAUSE HE HAD TO HANDLE EVERYTHING AND HOLD IT AND TOUCH IT (EXCEPT THE SNAPPING TURTLE). HE WAS SO HAPPY AND LOVED IT ALL. THANK YOU JILL AND HUGS AND HOPE AND JUNGLE JOHN. JUSTIN LOVED IT!!!!! I HAVE PICTURES THAT I'M GOING TO TRY AND GET ON LINE SO YOU ALL CAN SEE JUSTIN WITH ALL OF THE ANIMALS.
ANYWAYS AS I WAS TELLING YOU WE HAVE BEEN VERY, VERY BUSY. JUSTIN'S DAYS ARE VERY SCHEDULED. IT STARTS OFF EVERY DAY AT 6:00 AM. HE HAS BREATHING TREATMENTS I HAVE TO DO WITH HIM AT 6AM,12PM,6PM, AND 12PM. THEN HE HAS MEDS TO TAKE AT 8AM,10AM,2PM,8PM, AND 10PM. IN BETWEEN I HAVE TO DO HIS BLOOD PRESSURE, TEMP., PULSE, AND CHECK HIS OXYGEN LEVEL TO SEE IF HE NEEDS HIS OXYGEN ON OR NOT. AT NIGHT WHEN HE IS SLEEPING HE HAS TO WEAR OXYGEN BECAUSE HIS OXYGEN LEVEL DROPS. THEN ALSO I HAVE TO CHANGE HIS HICKMAN BANDAGE, HIS LINE CAPS, FLUSH HIS LINES, AND HE HAS WARTS ON THE BOTTOM OF HIS FEET THAT WE ARE TREATING. THOSE WERE CAUSED FROM SO MUCH CHEMO THEY SAID. SO LIKE I SAID WE ARE VERY, VERY BUSY. IT IS HARD GETTING ON THE COMPUTER ANY MORE, BUT I WILL TRY AND KEEP YOU UPDATED OFTEN AS I CAN.
JUSTIN'S APPETITE HAS BEEN LATELY LOAVES OF BREAD AND EGGS. HE HAS BEEN EATING SO MUCH TOAST AND EGGS. ONE MORNING FOR BREAKFAST HE ATE 8 SLICES OF TOAST. THEN TOAST FOR LUNCH AND DINNER TOO. HE HAS BEEN DRINKING A LOT OF ORANGE JUICE ALSO. HE IS NOW MY BREAD BOY.
TO ANSWER A LOT OF PEOPLES QUESTIONS ABOUT WHAT A SPEEDIE IS. A SPEEDIE IS A CHUNCK OF SMALL MEAT (DEER,BEEF,CHICKEN, OR PORK) MARINATED WITH A MARINATING SPEEDIE SAUCE ( WE USE LUPOS SAUCE)(WWW.LUPOS.COM) ( I THINK THAT IS RIGHT ). WE USUALLY MAINATE OURS FOR ABOUT 3 TO 5 DAYS. THEN COOK THEM ON THE GRILL IN SCEWERS JUST RIGHT. THEY MELT IN YOUR MOUTH. YOU HAVE TO MARINATE FOR QUITE A FEW DAYS SO THE MEAT GETS ALL THE JUICES AND SEASONINGS. IN BINGHAMTON NY THERE IS A SPEEDIE FEST EVERY YEAR WITH HOT AIR BALLONS AND EVERYTHING.
JUSTIN'S HAIR IS GROWING BACK IN NICELY. THE RADIATION IS GOING GREAT. NEXT THURSDAY SHOULD BE OUR LAST DAY. HOPEFULLY NEXT THEN WE WILL BE ABLE TO GO HOME FOR A WHILE. JUSTIN LOOKS VERY GOOD. HIS HIP HAS BEEN HURTING QUITE BADLY AND IT IS HARD FOR HIM TO WALK. THEY THINK IT'S FROM BEING ON STERIODS FOR SUCH A LONG TIME. SO WE HAVE TO USE A WHEEL CHAIR FOR HIM. IT'S QUITE FUNNY SEEING ME TRY AND LOAD THAT UP, THERE MUST BE SOMETHING EASIER. THEY SAID IT'S LIGHT WEIGHT, BUT I THINK THAT MUST BE FOR SOMEONE WHO HAS MUSCLES. HAHA. IT FEELS SO GOOD TO BE OUT OF THAT HOSPITAL. JUSTIN IS MUCH HAPPIER NOW.

Wednesday, September 11, 2002 at 03:51 PM (CDT)

MONDAY JUSTIN WAS SO SCARED ABOUT THE RADIATION. HE DIDN'T EAT IN THE MORNING AND THEN ATE A HOT DOG IN THE AFTERNOON JUST BEFORE GOING. WE LEFT THE HOSPITAL AT 12:30PM TO GO IN THE AMBULANCE. WHEN WE ARRIVED THEY GOT US RIGHT IN AND STARTED THINGS. HE HAD TO HAVE HIS SPECIAL MASK MADE AND THEN HAD TO HAVE SEVERAL X-RAYS DONE AND MEASUREMENTS. WE GOT DONE AROUND 2:30PM, AND THEN HAD TO WAIT FOR THE AMBULANCE TO PICK US BACK UP. THEY ARRIVED AROUND 3;30PM AND WE GOT BACK TO AI DUPONT HOSPITAL AT 4:00PM. DURING THE MEAUREMENTS AND MAKING OF THE MASK AND EVERYTHING JUSTIN WAS SO UPSET AND CRYING AND SCARED HE GOT SICK TO HIS STOMACH.
TUESDAY WENT A LOT BETTER, WE GAVE HIM SOME BENADRYL AROUND 11:00AM BEFORE WE WENT AND IT TOOK THE EDGE OFF FOR HIM. HE SLEPT THROUGH IT. WHICH WAS GREAT. THE AMBULANCE WAITED AND IT ONLY TOOK ABOUT 10 MINUTES. UNCLE DEAN CALLED AND SAID HE WAS GOING TO COME DOWN FOR A FEW DAYS.HE ALSO TOLD US ABOUT OUR COUSIN DAVE CRANDALL WHO WAS IN AN ACCIDENT. HE DRIVES A FUEL OIL TRACTOR TRAILER AND IT FLIPPED OVER AND OVER 5 TIMES ON THE HIGHWAY. HE WAS TAKEN TO WILSON HOSPITAL AND HAS A SEVERLEY BROKEN LEG, SEVEN BROKEN RIBBS, AND NUMEROUS CUTS. HE WAS GOING IN FOR SURGERY THIS MORNING. EVERYONE PLEASE SAY A PRAYER FOR HIM AND HIS FAMILY AND MAYBE A CARD. HE HAS DONE A LOT FOR OUR FAMILY AND IS TRULY LOVED BY ALL OF US. HE IS AT WILSON HOSPITAL IN BINGHAMTON NY. JUSTIN STARED EATING WELL AGAIN TONIGHT. HE IS DOING MUCH BETTER NOW AND IS FEELING MORE COMFORTABLE I THINK WITH THE RADIATION.
UNCLE DEAN ARRIVED THIS MORNING AROUND 10:30AM. JUSTIN IS NOW RELEASED FROM THE HOSPITAL. WE WERE RELEASED AROUND 11:00AM THIS MORNING AND WILL BE STAYING OVER AT THE RONALD MCSDONALD HOUSE NOW. HE WAS SO HAPPY. HE HAS A TON OF MEDS TO TAKE AND BREATHING TREATMENTS AND ALL. WOW IT IS A LOT AND WILL TAKE SOMNE TIME TO LEARN. UNCLE DEAN DROVE US TO THE HOSPITAL TO HAVE HIS RADIATION TREATMENT. AFTER RADIATION WE WENT TO LUNCH AND JUSTIN ATE A HAMBURGER AND FRIES AND ATE VERY VERY WELL. TONIGHT WE ARE GOING TO COOK SPEEDIES AGAIN WITH UNCLE DEAN OUT ON THE GRILL. PROBABLLY SOME HOT DOGS TOO SINCE HE HAD A HOT DOG FOR BREAKFAST. WE GOT THE ROOM ALL CLEANED UP AND ARE WAITING FOR JUSTIN'S DAD TO CALL AT 5PM. JUSTIN IS SO RELAXED AND ENJOYING HIMSELF OUT OF THE HOSPITAL. IT IS GREAT.

DAVE CRANDALL
WILSON MEMORIAL HOSPITAL
BINGHAMTON, NY

I'M NOT SURE OF THE CORRECT ADDRESS BUT I'M SURE IT WILL GET THERE WITH NO PROBLEM. MAYBE SOMEONE FROM HOME CAN E-MAIL ME THE CORRECT ADDRESS SO I CAN PUT IT ON AGAIN FOR HIM TO GET SOME CARDS. THANK YOU ALL.

Monday, September 09, 2002 at 10:25 AM (CDT)

WELL SATURDAY JUSTIN HAD A GOOD DAY. HE GOT UP AND ATE MCDONALDS BREAKFAST. HE DID VERY WELL THROUGH THE DAY. IN THE AFTERNOON JUSTIN'S UNCLE JASON, AUNT BARB, AND HIS COUSINS COURTNEY AND TYLER CAME TO VISIT WITH HIM. HE HAD A NICE VISIT WITH THEM. HE WAS SITTING UP IN A CHAIR AND WAS DRAWING AND GAVE THEM A PICTURE HE DREW AND AUTOGRAPHED IT FOR THEM. THEY LOVED IT. FOR DINNER JUSTIN WANTED CLAMS AND LOBSTER. HE ATE ALMOST A DOZEN CLAMS AND ABOUT 8 BITES OF HIS LOBSTER. THEN HE ATE A FRUIT ROLL UP AND A BUNCH OF CHEESIES. THEN LATER IN THE NIGHT HE ATE A COUPLE HOT DOGS. HIS APPETITE HAS BEEN GREAT!! THEY REMOVED THE TPN AND HE IS NO LONGER ON THE PAIN MEDICINE OR EXTRA FLUIDS. ALL OF THE IV ANTIBIOTICS HAVE BEEN STOPPED ALSO. HE DOESN'T HAVE TO BE HOOKED UP ANY MORE RIGHT NOW. HE STILL HAS TO HAVE HIS BREATHING TREATMENTS.

ON SUNDAY CHUCK ARRIVED A LITTLE AFTER 4 PM AND JUSTIN SURPRISED HIM AT THE RONALD MCDONALD HOUSE. WE GOT A 3 HOUR PASS FOR JUSTIN TO LEAVE THE HOSPITAL. CHUCK BROUGHT HIM DOWN SOME SPEEDIES AND WE COOKED THEM OUT ON THE GRILL. JUSTIN HAD A GOOD TIME. THEN WHEN WE WENT BACK UP INTO THE ROOM JUSTIN OPENED HIS MAIL HIS DAD BROUGHT DOWN TO HIM. HE GOT A LEGO BLIMP HE HAS WANTED FOR A VERY LONG TIME BUT WAS NO LONGER MADE FROM HIS GRANDPA BRYCE. HE GOT IT OVER THE INTERNET ON E-BAY. JUSTIN WAS SO HAPPY TO GET IT. WE HAD TO BE BACK TO THE HOSPITAL AT 7PM. HE ATE VERY WELL HE HAD A FEW SPEEDIES AND A HOT DOG WHEN WE COOKED OUT. THEN AFTER WE WERE BACK AT THE HOSPITAL HE HAD MORE SPEEDIES AND 3 MORE HOT DOGS. HE IS A VERY HUNGRY BOY.

WELL TODAY WE ARE GETTING READY TO GO TO THE OTHER HOSPITAL FOR RADIATION. WE LEAVE HERE AT 12:30PM , IT WILL TAKE A LONG TIME TODAY TO GET ALL SET UP BUT THE REST OF THE DAYS SHOULDN'T BE THAT LONG. THE SPOTS ON HIS SPINE THAT THE MRI SHOWED ARE JUST FRACTURES. THEY ARE VERY SURE THAT THEY AREN'T TUMORS AND SHOULDN'T RADIATE THEM. JUSTIN MIGHT BE ABLE TO BE RELEASED AND GO OVER TO THE RONALD MCDONALD HOUSE AND HAVE ME DRIVE HIM FOR HIS RADIATION TREATMENTS. THAT WILL BE GREAT TO GET HIM OUT OF THE HOSPITAL. HE WILL FEEL SO MUCH BETTER OUT OF THE HOSPITAL.

Friday, September 06, 2002 at 04:53 PM (CDT)

YESTERDAY WAS THE HARDEST DAY TO EVER ENDURE. CHUCK AND I HEARD NEWS WE DIDN'T EVER WANT HEAR. WE SAT DOWN WITH ALL OF THE DOCTORS AND DISCUSSED JUSTIN IN GREAT LENGTH AND ALL OF THE OPTIONS THAT ARE LEFT AT THIS TIME. FROM JUSTIN'S MRI THERE IS POSSIBLY TWO NEW SPOTS ON HIS BRAIN. OUR OPTIONS AT THIS TIME ARE RADIATION OF THE FULL BRAIN AND ALSO THE NEW PROTOCOL THAT IS FROM BOSTON AS LONG AS HE CAN TOLERATE IT,WHICH ARE FOUR PILLS OF THALIDOMIDE, CELEBREX, AND TWO ORAL CHEMO'S. THESE OPTIONS AT THIS TIME THE DOCTORS SAID MIGHT LENGTHEN THE TIME FOR JUSTIN TO BE WITH US AND SEE FAMILY AND FRIENDS.

THE THALIDOMIDE AND CELEBREX WE ARE STARTING TONIGHT AND CAN DO THIS DURING HIS RADIATION, WHICH WILL GO FOR 2 AND HALF WEEKS MONDAY THROUGH FRIDAYS. JUSTIN WILL HAVE HIS FIRST RADIATION TREATMENT ON MONDAY. JUSTIN WILL HAVE TO HAVE HIS RADIATION OVER AT CHRISTIANA HOSPITAL ABOUT 15 MINUTES AWAY. THEY WILL TAKE HIM BY AMBULANCE BACK AND FORTH. THE DAY AFTER THE RADIATION IS ALL DONE HE WILL START ONE OF THE ORAL CHEMO'S. THE CHEMO'S ALTERNATE EVERY 3 WEEKS. JUSTIN HAD AMNOTHER MRI TODAY ON HIS SPINE TO MAKE SURE THERE AREN'T ANY TUMORS ON HIS SPINE THAT MIGHT NEED TO BE RADIATED ALSO. HOPE WE DON'T KNOW BUT MAYBE THIS WILL CURE HIM, MAYBE WE COULD GET OUR MIRACLE WITH THIS REGIMENT AND THE RADIATION, NO ONE KNOWS AND RIGHT NOW WE ARE GOING TO PRAY THAT IT WILL. WE KNOW THE DOCTORS SAID IT IS VERY UNLIKELY BFULLY TONIGHT WE WILL FIND OUT THOSE RESULTS. BUT WE HAVE TO HOPE AND PRAY THAT IT DOES. IN THE MEAN TIME I'M GOING TO LOVE HIM, HOLD HIM, KISS HIM, AND ENJOY AND TREASURE EVERY SINGLE MOMENT WITH HIM AND SPOIL HIM ROTTEN. WE ARE GOING TO DO HIS MAKE-A-WISH AND MANY OTHER THINGS.

CHUCK AND I ARE SO BROKEN UP OVER THIS AND MY HEART ACHES EVERY SECOND. I NEVER THOUGHT I WOULD EVER HAVE TO WRITE SOMETHING LIKE THIS AND THIS IS VERY, VERY HARD. THE PAIN AND HEART ACHE ARE TO MUCH TO BARE.

CHUCK HEADED HOME AROUND 5:30PM TONIGHT AND SHOULD ARRIVE HOME AROUND 9:00-9:30PM. THEN HE WILL RETURN ON SUNDAY NIGHT TO GO TO THE FIRST RADIATION TREATMENT ON MONDAY WITH JUSTIN AND I. THEN HE WILL HAVE TO HEAD HOME AGAIN ON MONDAY NIGHT LATE BECAUSE HE WILL HAVE TO GO TO WORK ON TUESDAY. THIS IS SO HARD ON HIM BEING AWAY AND HIS TIME IS USED UP TO TAKE OFF FOR HIS WORK SO HE IS FEELING TORN BETWEEN WORK AND JUSTIN. HE IS AFRAID HE WILL GET HIS WORK UPSET AND DOESN'T WANT THAT BECAUSE HE LIKES HIS JOB AND THE PEOPLE HE WORKS WITH. PLUS ALL THE TRAVELING BACK AND FORTH. THIS IS SO DRAINING FOR BOTH OF US. I MISS AND WORRY ABOUT THE OTHER KIDS AT HOME AND IF THEY ARE OK. MY HEART ACHES FOR THEM TOO BECAUSE THIS HAS TORN THEM UP INSIDE ALSO.

HOPEFULLY AFTER RADIATION AND A FEW DAYS ON THE ORAL CHEMOS WE WILL BE ABLE TO GO HOME. THAT WILL BE IN ABOUT 3 WEEKS. JUSTIN WILL ENJOY BEING HOME SO MUCH AS I WILL ALSO. HOPEFFULLY NEXT WEEK THEY WILL HAVE HIM OFF HIS TPN AND ALL OF HIS ANTIBIOTICS.

Wednesday, September 04, 2002 at 05:23 PM (CDT)

TODAY HAS BEEN THE HARDEST DAY! THE MRI WAS DONE AND IT CAME BACK SHOWING THAT WHERE HIS OPERATION WAS IS SWOLLEN OR SOMETHING, BUT ALSO THERE IS ANOTHER SPOT ON THE OTHER SIDE (THE RIGHT SIDE) OF HIS BRAIN. JUSTIN IS LOOSING THE MOVEMENT IN HIS RIGHT ARM AND LEG AGAIN. HIS AFP CAME BACK AND IT IS QUITE A BIT HIGHER AGAIN. THEY THINK WHAT IS ON HIS BRAIN IS TUMOR. CHUCK WILL BE ON HIS WAY DOWN IN THE MORNING. WE HAVE A MEETING WITH THE DOCTORS TOMORROW. JUSTIN HAS BEEN IN A LOT OF PAIN TODAY AND CAN'T GET COMFORTABLE. I HAVE CRIED, CRIED, AND CRIED TODAY, MY HEART IS ACHING SO MUCH AND I FEEL LIKE THE WORLD HAS COLLAPSED AROUND ME. IF WE EVER NEED A MIRACLE IT WOULD BE NOW. I FEEL SO HELPLESS, DRAINED, AND A HUNDRED OTHER EMOTIONS. SAY A PRAYER FOR OUR LITTLE BOY TONIGHT.

Wednesday, September 04, 2002 at 10:52 AM (CDT)

JUSTIN ISN'T DOING TO WELL THIS MORNING. HE IS RUNNING A TEMP. OF 101.5 AND IS IN QUITE A BIT OF PAIN. HIS WHITE COUNT, HEMAGLOBIN, AND HIS PLATELET COUNTS HAVE ALL DROPPED. THEY ARE GOING TO TRANSFUSE HIM WITH PLATELETS AND BLOOD TODAY. THEY DID AN X-RAY THIS MORNING OF HIS CHEST AND ABDOMEN AND ARE DOING AN MRI ON HIS HEAD TODAY. HE IS RIGHT HAND AND RIGHT LEG ARE A LITTLE WEAKER TODAY ALSO. I AM VERY WORRIED. HOPEFULLY EVERYTHING IS OK. THEY ALSO DREW SOME BLOOD CULTURES AND ARE DOING OTHER CULTURES. HOPEFULLY IT WON'T TAKE LONG TO GET THE RESULTS ON THE X-RAYS AND THE MRI.

Tuesday, September 03, 2002 at 10:13 PM (CDT)

WE STILL HAVEN'T GOTTEN THE FINAL REPORT BACK YET. THEY SAID MAYBE BY FRIDAY. THEY DON'T THINK IT'S THE FUNGUS SINCE NOTHING HAS GROWN YET FROM THE CULTURES, SO THEY HAVE STOPPED THE MEDICINE FOR THAT AND TOMORROW I THINK THEY ARE GOING TO STOP THE OTHER ANTIBIOTICS HE IS ON. THEY THINK THEY MIGHT KNOW WHAT IT IS BUT CAN'T SAY DEFINETLEY UNTIL THE FINAL REPORT COMES BACK. THEY HAVE SENT IT OFF TO JEFERSON TO HAVE PATHOLOGISTS THERE LOOK AT IT. THE NEWS EITHER WAY ISN'T GOOD. I REALLY WANT TO START THE BOSTON PROTOCOL IF WE STILL CAN AS SOON AS POSSIBLE. HOPEFULLY BY FRIDAY WE WILL KNOW MORE AND NOT HAVE TO WAIT OVER THE WEEKEND. THIS WAITING IS AWFUL.

JUSTIN IS DOING A LITTLE BETTER. HE HAS BEEN EATING AND SENDS ME TO MCDONALDS IN THE MORNING FOR EGGS, PANCAKES, AND SAUSAGE, HE IS ALSO EATING PUDDING AND HOTDOGS. HIS UNCLE MARK CAME TO VISIT AND STAY WITH HIM ON MONDAY AFTERNOON AND BROUGHT HIM COOKIES, POTATOES, CARROTS, PEACHES, AND BANANAS. JUSTIN DID EAT A HALF OF A PEACH ALSO. HE HAS BEEN PUTTING WEIGHT ON HIS RIGHT LEG AND TOOK A FEW STEPS. HE HAS ALSO BEEN MOVING HIS RIGHT ARM AND FINGERS. HE CAN REACH HIS ARM UP BY HIS HEAD NOW ALSO. HE IS STILL ON OXYGEN AND A CONSTANT DRIP OF NEUBANE THAT HE CAN ALSO PUSH A BUTTON TO GET MORE PAIN MEDICINE WHEN NEEDED. HE PUSHES THAT QUITE OFTEN STILL. HE GETS HIS BREATHING TREATMENTS 4 TIMES A DAY AND IS BREATHING A LITTLE BETTER WITH THAT. NOW THAT HE IS STARTING TO EAT THEY ARE GOING TO CUT BACK ON THE TPN. I WOULD LIKE TO WORK AT GETTING THAT UNHOOKED BY FRIDAY, MONDAY AT THE VERY LATEST IF POSSIBLE. HIS LIVER ENZYMES ARE GETTING QUITE HIGH AGAIN. HIS PLATELET COUNT HAS BEEN DROPPING AND IS LOW, HIS HEMAGLOBIN CAME UP A LITTLE BIT BUT HIS WHITE COUNT DROPPED AGAIN. TOMORROW THEY DRAW HIS AFP LEVEL AGAIN. THIS WILL TELL US IF ANY TUMOR IS GROWING OR NOT. LAST WEEK IT WENT DOWN TO 997 WHICH WAS GREAT. I WILL ANXIOUS ALL DAY TOMORROW UNTIL IT COMES BACK TO SEE WHAT IT IS.

JUSTIN'S UNCLE MARK STAYED WITH HIM UNTIL ABOUT 3AM WHEN HE HAD TO LEAVE FOR WORK. I STAYED AT THE MCDONALD HOUSE UNTIL THAT TIME TO GET SOME REST. ERIC AND KAITLIN WENT TO THE LABOR DAY FAIR WITH THEIR GRANDPA BRYCE. THEY WENT ON RIDES AND PLAYED SOME GAMES. AT NIGHT THEY WENT TO WATCH FIREWORKS WITH CHUCK. THE TOOK POPCORN, DRINKS AND A BLANKET TO SIT ON. THEY LIKE THE FIREWORKS. THEY HAD A GOOD TIME. TODAY WHILE TALKING TO THEM ON THE PHONE I HELPED THEM GET THEIR BACKPACKS READY AND PACKED FOR SCHOOL. THEN THEY GOT WHAT THEY WERE GOING TO WEAR FOR THEIR FIRST DAY. THEY ARE GOING TO GET UP EARLY SO THEY HAVE ENOUGH TIME TO PACK THEIR SCHOOL LUNCHES. HAVE A GREAT FIRST DAY OF SCHOOL ERIC AND KAITLIN!!!! TODAY THEY WENT TO THEIR GRANDMA CUMMINGS HOUSE TO SWIM ONE LAST TIME BEFORE SCHOOL. SOON IT WILL BE TO COLD TO SWIM.

JUSTIN IS STILL ON TWO BLOOD PRESSURE MEDICINES. HIS TEMP. HAS BEEN GOOD BUT HIS BLOOD PRESSURE JUMPS UP AND DOWN QUITE A BIT. HIS HEART RATE GOES UP AND DOWN WITH HIS PAIN.

JUSTIN RECEIVED HIS HOODED TOWEL HE WON IN AUGUST FROM LIN. IT HAS FISH ON IT. A WOMAN WHO IS A CANCER SURVIVOR ALSO SENT HIM A T-SHIRT WITH TURTLES ON IT THAT SHE MADE. I WILL HAVE TO GET A PICTURE OF HIM IN BOTH AND SEND THEM OFF TO LIN. JUSTIN HAS RECIEVED MANY E-MAILS FROM PEOPLE FROM TURTLE HOMES THAT HAVE SENT THEM PICTURES OF THEIR TURTLES AND TORTOISES. HE JUST LOVES TO LOOK AT THEM ALL. HIS TORTOISE BRAVE HAS A HEART ON HIS SHELL. IT IS SO AMAZING. BRAVE IS SUCH A BEAUTIFUL TORTOISE, HIS COLORS ARE SO NICE AND PRETTY. THE HEART ON BRAVES SHELL IS JUSTIN'S LOVE FOR HIM FOREVER.

Friday, August 30, 2002 at 10:07 PM (CDT)

WELL TODAY JUSTIN HAD AN ECHO CARDIOGRAM TO MAKE SURE THERE WASN'T ANY BACTERIA OR FUNGUS GROWING THERE. IT SHOWED IT WAS OKAY. THEY GOT A NEW MEDICINE THAT WAS JUST APPROVED FROM THE FDA IN, CALLED VORICONAZOLE THAT IS SUPPOSED TO HELP KILL THE ASPERGILLUS FUNGUS. THERE IS STILL ISN'T ANY WORD YET IF THIS IS WHAT IT IS BUT THEY ARE GOING TO STILL TREAT IT FOR IT.

WHEN HE WAKES HE IS VERY UPSET AND WORKED UP. HE CRIES AND YELLS AND IS VERY, VERY UPSET. IT TAKES A LOT TO TRY AND CALM HIM DOWN.

TONIGHT AROUND 4:00PM THEY MOVED HIM OUT OF ICU UP TO HIS ROOM ON 3A. HE WAS STILL WORKED UP AND ALL UPSET SO THEY STARTED HIM ON A CONTINUOUS DRIP OF NEUBANE NOW. HE IS VERY UPSET THAT HE STILL CAN'T USE HIS RIGHT ARM AND HIS RIGHT LEG IS STILL VERY, VERY WEAK. SOMETIMES HE STILL HAS SOME SLURRED SPEACH.

IT IS SO UPSETTING TO SEE HIM LIKE THIS AND SO UPSET WHEN HE IS AWAKE. IT IS SO EXHAUSTING!! CHUCK AND KAITLIN WENT HOME TODAY. KAITLIN HAD STAYED WITH ME AND STAYED FOR AN EXTRA WEEK. CHUCK, MY PARENTS, MY BROTHER DEAN AND MARY CAME, AND MY OTHER BROTHER MARK ALL CAME DOWN LATE TUESDAY NIGHT BEFORE THE SURGERY. ERIC STAYED WITH CHUCK PARENTS AT HOME. WE CALLED THEM AND KEPT THEM INFORMED OF EVERYTHING. CHUCK AND KAITLIN LEFT AROUND 5:30PM TO HEAD HOME. THEY GOT HOME AROUND 9:00-9:30PM. ERIC WAS VERY HAPPY TO HAVE THEM HOME, HE MISSED THEM A LOT!! ERIC AND KAITLIN ARE VERY UPSET WE WON'T BE HOME FOR THEM TO START SCHOOL. THEY WANTED ME TO BE THERE AND ARE SCARED BUT HAPPY THAT SCHOOL IS STARTING. I WISH I COULD BE THERE FOR THEM TOO!!

HOPEFULLY WE WILL BE HOME SOMEDAY SOON. NEVER THOUGHT I WOULD MISS HOME SO MUCH. WE HAVE BEEN HERE FOR 7 MONTHS SOON TO BE 8 MONTHS AND IT IS REALLY STARTING TO BE DEPRESSING. THE KIDS AND CHUCK HAVE TO TRAVEL ALL THE TIME AND THAT IS WEARING HIM OUT AND THE KIDS AND A LOT OF TIMES I DON'T GET TO SEE THEM. WE HAVE SO MANY THINGS THAT CHUCK IS TRYING TO KEEP UP WITH AT WORK AND HOME. I JUST WANT OUR NORMAL LIVES BACK AND JUSTIN TO BE WELL AND CURED!! DON'T EVER TAKE YOUR LIVES FOR GRANTED OR SAY YOU LIVE A BORING LIFE BECAUSE IT'S NOT. WE LEARNED THAT AND JUST WANT OUR BORING LIVES BACK AGAIN. ENJOY AND CHERISH EVERYDAY!!!!!

WELL BETTER TRY AND GET SOME REST NOW THAT I'M DONE VENTING. I KNOW I'VE SAID THIS BEFORE BUT THANK YOU ALL SO MUCH FOR ALL OF YOUR SUPPORT. IT TRULY MEANS A LOT TO US ALL. THERE ARE SO MANY PEOPLE THAT HAVE DONE SO MANY WONDERFUL THINGS AND WE WILL NEVER BE ABLE TO THANK EVERY SINGLE PERSON FOR WHAT THEY'VE DONE. THANK YOU ALL!!!!!!!

Thursday, August 29, 2002 at 02:50 PM (CDT)

WELL JUSTIN GOT OUT OF SURGERY AROUND 7:00PM LAST NIGHT. HE DID VERY WELL THROUGH THE SURGERY. THEY REMOVED ALL OF THE MATTER THAT WAS ON THE BRAIN. THEN HE WAS TAKEN TO ICU. HIS BLOOD PRESSURE WAS REALLY HIGH. THEY FINALLY GOT THAT UNDER CONTROL AND THEN HIS HEART RATE WAS HIGH AND HIS RESPIRATIONS AND HIS TEMP. WAS AROUND 100.8. THEY FINALLY GOT HIM SETTLED AND COMFORTABLE AROUND 1:00-1:30AM AND HE RESTED OK THROUGH THE NIGHT.

TODAY HE IS DOING OK. HIS BLOOD PRESSURE WAS A LITTLE HIGH BUT IS UNDER CONTROL NOW. HIS HEART RATE, RESPIRATIONS, AND TEMP. ARE UNDER CONTROL. HE HAS A LITTLE MOVEMENT IN HIS RIGHT LEG BUT IT IS VERY LIMITED, HARDLY ANY MOVEMENT IN HIS RIGHT ARM AND HIS SPEECH IS SLURRED. THEY SAID IT SHOULD GET A LITTLE BETTER AFTER THE SWELLING IN HIS BRAIN GOES DOWN.

WELL TODAY THE INFECTION CONTROL DOCTOR CAME IN AND TALKED WITH US. THEY HAVEN'T GOTTEN A REPORT YET BUT IT COULD BE THE ASPERGILLUS FUNGUS. WE WON'T KNOW FOR ABOUT 3-4 DAYS FOR SURE. A STAPH ONFECTION HAS ALREADY STARTED TO GROW FROM THE CULTURES, BUT THAT COULD BE FROM THE SURGERY IT SELF. THEY ARE TREATING HIM STILL AS IF HE HAD THE ASPERGILLUS FUNGUS. THEY ARE ALSO GOING TO TRY AND CONTACT AND GET SOME NEW MEDICATION THAT WAS JUST APPROVED TO HELP TREAT THIS ASPERGILLUS FUNGUS AND SHOULD WORK BETTER THAN AMPHOTERICIN. RIGHT NOW THEY SAID THE ODDS LOOK MORE TOWARDS THE ASPERGILLUS BUT WON'T KNOW DEFINATELY UNTIL 3-4 DAYS AND SEE IF THE CULTURES GROW ANYTHING. THE FINAL REPORT FOR THIS ASPERGILLUS WILL TAKE ABOUT 2 WEEKS. HOPEFULLY IT ISN'T BECUASE IT IS VERY HARD TO CURE.

MAYBE LATER TONIGHT OR TOMORROW THEY WILL MOVE HIM TO HIS ROOM ON 3A BECAUSE HE IS VERY VERY AGITATED IN THE ICU AND THEY THINK HE MIGHT DO A LITTLE BETTER BEING ON THE UNIT THAN BEING IN THE ICU. SAY A PRAYER FOR JUSTIN THAT THIS ISN'T THE ASPERGILLUS.

Wednesday, August 28, 2002 at 01:34 PM (CDT)

THEY TOOK JUSTIN IN TO SURGERY AT 2:15PM. NOW WE WILL HAVE TO WAAIT UNTIL THEY COME OUT AND LET US KNOW HOW THINGS ARE GOING. HE WAS VERY SCARED BUT WAS OK. THEY GAVE HIM SOMETHING BEFORE GOING IN TO CALM HIM. IT WILL BE A WHILE BEFORE WE KNOW ANY MORE. HOPEFULLY HE WILL COME OUT OF THIS OK.

Wednesday, August 28, 2002 at 07:27 AM (CDT)

TODAY IS A HORRIBLE DAY!! JUSTIN IS VERY, VERY SICK!! ALL THE FEVERS HE'S BEEN GETTING AND NOT FEELING WELL IS BECAUSE OF A FUNGUS THAT HAS BEEN GROWING ON HIS BRAIN. THEY HAVE TO GO IN AND DO BRAIN SURGERY TODAY AND TRY AND GET THIS FUNGUS OUT. THEY ARE GOING TO BIOPSY IT AND MAKE SURE IT ISN'T TUMOR ALSO. I DON'T HAVE MUCH TO SAY EXCEPT FOR I'M SCARED AND A HUNDRED OTHER EMOTIONS. HE IS GOING THROUGH A LOT TODAY. SAY A PRAYER.

Thursday, August 22, 2002 at 07:12 PM (CDT)

IT'S BEEN A FEW DAYS SINCE I'VE UPDATED BECAUSE IT'S BEEN SO HECTIC HERE. TUESDAY AFTERNOON MY DAD BROUGHT ERIC AND KAITLIN DOWN TO STAY FOR THE WEEK. MY DAD IS STAYING WITH JUSTIN AND THE KIDS AND I ARE SPENDING SOME TIME TOGETHER BEFORE THEY GO TO SCHOOL. JILL ARRIVED SAFELY MONDAY NIGHT. SHE LOOKS GREAT!!! I MET HER GOOD FRIEND MORA ALSO. SHE IS VERY NICE. WE ALL WENT TO THE MOVIES TUESDAY NIGHT AND THEN ON WEDNESDAY JILL AND MORA HAD TO LEAVE AROUND NOON OR SO. I HATED TO SEE HER GO, I MISS HER ALREADY!!!!!! THE KIDS ARE HAVING A GOOD TIME, WE WENT TO A MESUME, PARK, POOL, CHUCK-E-CHEESES AND SPENDING TIME WITH JUSTIN.

JUSTIN IS DOING OK. HE IS TRYING TO EAT ( WITH A FIGHT ), DOING HIS SPIROMETER, AND PULLING HIS GRANDFATHER'S EARS. HIS UNCLE MARK SENT HIM SOME MONEY AND HE GOT RIGHT UP AND WENT FOR A LONG WALK TO GO GET TO THE GIFT SHOP TO BUY SOMETHING. BUT FOOLED HIS GRANDPA WHEN HE GOT TO THE HALLWAY AND HAD FORGOTTEN TO BRING HIS MONEY AND GRAMPS HAD TO PAY. HAHAHA. HIS LIVER ENZYMES ARE LOOKING REALLY GOOD!! HIS WHITE COUNT IS GOOD, HIS HEMAGLOBIN IS A LITTLE LOW, AND SO ARE HIS PLATELETS. HIS LUNGS SOUND PRETTY GOOD. THEY MIGHT START THE NEW PROTOCOL EARLY NEXT WEEK. THEN BY THE END OF NEXT WEEK WE MIGHT BE ABLE TO GO HOME FOR A MONTH OR SO. YEH, YEH, YEH!!!

IF THIS DOESN'T MAKE MUCH SENSE IT'S BECAUSE I'VE HAD SO MANY INTERUPTIONS I FEEL TOTALLY CONFUSED!!! HAHAHA, MY KIDS ARE ALL TALKING AT ONCE TO ME. WOW!! I'LL HAVE TO CALL JILL LATER AND MAKE SURE SHE MADE IT HOME SAFELY.

GLADYS AND CHARLIE ARE GETTING A BREAK THIS WEEK WITH THE KIDS HERE WITH ME.THEN FOR A FEW DAYS IT WAS JUST MY CHUCK AND HIS DAD BY THEMSELVES. THEY HAD PIZZA FOR DINNER LAST NIGHT. CHUCK IS PROBABLLY VERY LONELY RIGHT NOW AT HOME ALL BY HIMSELF WITH OUT ERIC AND KAITLIN. HE THOUGHT THEY MIGHT MISS HOME BY NOW BUT THEY DON'T AS LONG AS THEY ARE WITH ME. WELL WILL TRY AND UPDATE MORE LATER ON. HOPEFULLY IF JUSTIN DOES WELL WE WILL BE HOME NEXT WEEKEND.

Monday, August 19, 2002 at 01:50 PM (CDT)

JUSTIN IS DOING A LITTLE BETTER TODAY. HIS PAIN IS NOW CONTROLED A LOT BETTER. THEY HAD TO UP THE PAIN MEDICINE QUITE A BIT IN THE PCA PUMP AND HE IS STILL PUSHING THE BUTTON QUITE A FEW TIMES BUT LOOKS MORE COMFORTABLE. HE IS NOW TAKING A REST. WE WERE UP ALL NIGHT. I NEVER GOT TO LAY DOWN UNTIL AFTER 5:30 AM AND SLEPT UNTIL 8:00AM WHEN HIS MEDS WERE DUE.
I HAD A TALK WITH THE DOCTORS AND THE ICU DOCTOR IN CHARGE ABOUT THE INCIDENT LAST NIGHT. ALL HAS BEEN TAKEN CARE OF AND SHOULDN'T HAPPEN AGAIN.
JUSTIN'S COUNTS ARE DOING OK BUT HAVE DROPPED AGAIN. HIS WHITE COUNT IS LOWER, ALONG WITH HIS HEMAGLOBIN AND PLATELET COUNT. HIS LIVER ENZYMES SEEM TO BE TRYING TO LEVEL OUT BUT ARE STILL OFF. HE IS WORKING ON HIS CAN OF BOOST AND IS DRINKING WATER AND GATORADE. HE ISN'T EATING YET BUT SHOULD FEEL BETTER IN A FEW DAYS TO TRY A FEW THINGS.
I AM SO TIRED BUT FEEL A LITTLE BETTER SINCE MY SHOWER AND TONS OF COFFEE. I KNOW I'LL SLEEP WELL TONIGHT!!!!!! JILL SHOULD BE HERE AROUND 5:00-6:00PM THIS EVENING. I CAN'T WAIT UNTIL SHE ARRIVES. TOMORROW MY DAD IS BRINGING ERIC AND KAITLIN DOWN TO STAY FOR THE WEEK. WE CAN'T WAIT TO SEE THEM ALSO. IT WILL BE SO NICE TO SPEND SOME TIME WITH THEM.
THEY SHOULD BE ABLE TO START THE PROTOCOL FROM BOSTON NEXT WEEK SOMETIME. THEN AFTER A FEW DAYS IF HE DOES WELL WE SHOULD BE ABLE TO GO HOME FOR A WHILE. THAT WILL BE SO GOOD. WE SHOULD BE ABLE TO BE HOME FOR LONGER PERIODS OF TIME, WHICH WILL BE REALLY NICE. A WEEK HOME SEEMS TO GO BY WAY TO QUICK. HOPEFULLY EVERYTHING WILL GO SMOOTHLY WITH THIS PROTOCOL AND WE WILL BE ON OUR ROAD TO A CURE.
IT HAS BEEN SO HOT HERE!!! IT'S LIKE WALKING INTO A WALL WHEN YOU GO OUTSIDE.IT'S SUPPOSED TO COOL DOWN WITH IN THE NEXT FEW DAYS THEY SAY. SURE HOPE SO!!

Sunday, August 18, 2002 at 11:44 PM (CDT)

WELL SATURDAY WENT WELL. JUSTIN HAD AN X-RAY DONE FIRST THING IN THE MORNING. HE TOOK HIS MEDS VERY WELL AND HAD HIS BREATHING TREATMENTS AND ALSO HAD HIS NEUPOGEN SHOT. HE WAS DRINKING HIS WATER AND HIS RED GATORADE. THEY TOOK OUT THE IV'S IN HIS HANDS. HE SLEPT A LOT THROUGH OUT THE DAY. HE HAD SOME PAIN, MOSTLY IN HIS RIGHT ARM BUT NOT A LOT. LATE AT NIGHT HE HAD A TEMP. OF AROUND 100 BUT THAT WENT DOWN ON IT'S OWN. CHUCK STAYED WITH HIM DURING THE NIGHT AND I WENT TO THE MCDONALD HOUSE AROUND 10:45PM.
THIS MORNING JUSTIN TOOK HIS MEDS, HIS NEUPOGEN SHOT AND WAS WORKING ON A CAN OF BOOST. HE WAS DOING VERY WELL. THEY LOWERED HIS OXYGEN DOWN AND HE WAS ON 1 LITER THROUGH OUT THE DAY. AT 2:00PM THEY CAME IN AND TOOK OUT THE CHEST TUBE. HE DIDN'T FEEL IT HARDLY AT ALL WITH THE EPIDERAL IN. IT MADE IT SO MUCH EASIER ON JUSTIN WITH THAT. CHUCK HAD TO HEAD HOME AROUND 3:30PM. JUSTIN FELL ASLEEP RIGHT AFTER HE LEFT. AT 5:00PM THE ICU DOCTOR CAME IN AND SAID THEY WERE GOING TO REMOVE THE CATHETER AND ALSO THE EPIDERAL. THEY GAVE HIM SOME PROPOFOL, SHUT OFF THE EPIDERAL PUMP AND TOOK OUT THE EPIDERAL AND CATHETER. JUSTIN SLEPT THROUGH THE WHOLE THING. HE WOKE UP FOR A MINUTE AROUND 6:00PM AND WE TOLD HIM THAT THEY WERE OUT AND THEN HE WENT RIGHT BACK TO SLEEP. AT 7:30PM I HAD TO ASK HIS 7 TO 11 PM NURSE SEVERAL TIMES FOR HIS 8:00PM MEDS. FINALLY SHE BROUGHT THEM IN AT 8:10PM. JUSTIN TOOK HIS MEDS VERY NICELY. THEN AT 8:35PM HE WAS HAVING SOME PAIN AND WE ASKED FOR PAIN MEDICINE. WE HAD TO ASK ABOUT 5 TO 6 TIMES. THEY HE GOT SICK TO HIS STOMACH FROM BEING IN SO MUCH PAIN AND IT GETTING WORSE. SOMEONE CAME IN WITH HIS CHART AND I ASKED WHERE HIS PAIN MEDS WERE AND WHAT THE BIG CHART WAS DOING IN THE ROOM, SHE SAID WE WERE BEING TAKEN UP TO HIS ROOM ON THE BOMNE MARROW UNIT. I TOLD HER THEY WEREN'T MOVING HIM UNTIL HE GOT HIS PAIN MEDICINE!!! HE NEVER RECIEVED HIS PAIN MEDICINE UNTIL 9:45PM, AN HOUR AND 10 MINUTES LATER. BY THEN HE WAS IN SO MUCH PAIN. I WAS SO FURIOUS!!!!!!! I AM MAKING A COMPLAINT AGAINST THAT NURSE TOMORROW.
WHEN WE GOT TO HIS ROOM ON 3A HE WAS STILL IN QUITE A BIT OF PAIN. THEY HAD THE RESIDENTS COME IN ALSO CALLED THE DOCTORS. THEY WERE ALSO UPSET THAT JUSTIN HAD TO WAIT FOR HIS PAIN MEDICINE AND NOT HAVE ANYTHING READILY READY FOR HIM. ANYWAYS JUSTIN NOW HAS A PC PUMP FOR THE PAIN TO HELP TRY AND MANAGE IT AND KEEP IT UNDER CONTROL. JUSTIN IS NOW RESTING AND DOING A LITTLE BETTER. THANK GOODNESS!!! HE SHOULDN'T OF HAD TO GO THROUGHT THAT!!!! I'M GOING TO TAKE CARE OF THAT PROBLEM TOMORROW!!
JILL IS COMING TOMORROW, WE ARE SO EXCITED!! SHE SHOULD GET HERE AROUND 5:00 TO 6:00PM TOMORROW NIGHT. EVERYONE WISH HER A SAFE TRIP. WELL BETTER GO FOR NOW AND TRY AND GET SOME REST. TOMORROW SHOULD BE A BETTER DAY.

Friday, August 16, 2002 at 10:04 PM (CDT)

JUSTIN WENT DOWN TO PRE-OP FOR SURGERY AT 12:00PM. THE EPSTEIN BAR VIRUS CAME BACK OKAY!!!!! JUSTIN WAS VERY SCARED AND VERY UPSET. HE WAS CRYING AND ALL WORKED UP AND THEN THEY GAVE HIM SOMETHING TO CALM HIM BEFORE THEY TOOK HIM BACK AT 12:30PM. IT BROKE MY HEART SEEING HIM SO UPSET. THEY PUT THE EPIDERAL IN AND ALL THE IV LINES THEY WOULD NEED AND EVERYTHING AND THEN STARTED THE ACTUALL SURGERY PART AT 1:30PM. THEY CAME OUT AND SAID HE WAS DOING VERY WELL THROUGH IT. THEN AT 2:15PM DR. DUNN CAME OUT AND SAID THEY WERE DONE AND DR. MATTE WAS JUST SEWING HIM UP AND THEN HE WOULD BE DONE. THEY FINISHED TOTALLY AT 2:30PM. THE EPIDERAL WORKED GREAT!! THEY GOT ALL THE TUMOR OUT AND DIDN'T HAVE TO TAKE A HUGE PIECE OF LUNG. DR.MATTE SAID IT WAS VERY EASY TO GET TO AND IT WENT VERY NICELY. JUSTIN IS NOW IN ICU WITH JUST OXYGEN ON AND A BUNCH OF IV LINES FOR MEDS AND OTHER THINGS. HE ALSO HAS A CHEST TUBE IN FOR DRAINAGE. HE IS DOING SO WONDERFUL!!!!! HE HAS WATCHED A LITTLE TV AND IS TALKING. HE IS DRINKING AND HE TOOK HIS 8:00PM MEDS. THE DOCTORS THOUGHT HE WOULD DO SO MUCH BETTER WITH THE EPIDERAL AND HE DID. IT IS SO GREAT!!! NOW HOPEFULLY HE WILL CONTINUE TO DO WELL AND THEN WE CAN START THIS NEW REGIMENT FROM BOSTON AND THEN BE ABLE TO GO HOME AND BE CANCER FREE!!!!!!
IT IS GREAT THAT JUSTIN IS DOING SO WELL!! THANK YOU ALL FOR YOUR SUPPORT AND PRAYERS!! THEY REALLY HELPED!!! THE SUPPORT IS SO WONDERFUL!! KEEP THOSE PRAYERS FOR OUR MIRACLE!!! I FEEL SO RELIEVED NOW AND SO HAPPY JUSTIN IS DOING SO WELL TONIGHT. IT IS GREAT. CHUCK IS GOING TO STAY WITH HIM TONIGHT AND I'M GOING TO GO TO THE MCDONALD HOUSE AND SLEEP. I'M SO WOUND UP TONIGHT KNOWING JUSTIN IS DOING OKAY AND WENT THROUGH THIS OK I THINK IT WILL TAKE ME A WHILE TO GET TO SLEEP THOUGH. YEH, TONIGHT IS A GOOD NIGHT!!

Friday, August 16, 2002 at 09:30 AM (CDT)

WELL WE ARE SITTING HERE THIS MORNING WAITING TO HERE SOME NEWS ON SURGERY. YESTERDAY THEY ORDERED A EPSTEIN BAR VIRUS TEST AND NOW WE HAVE TO WAIT FOR THAT TO COME BACK. THEY ORDERED THAT BECAUSE HIS COUNTS THESE PAST FEW DAYS HAVE BEEN DROPPING QUITE A BIT. HIS WHITE COUNT ON WEDNESDAY WAS 5.1 AND THIS MORNING IT IS ONLY 1.4. WHICH IS NOT GOOD. THIS MORNING AT 4:00AM THEY GAVE HIM PLATELETS AND HE IS RECIEVING PLATELETS AGAIN RIGHT NOW. AFTER HIS PLATELETS ARE DONE THEY ARE GOING TO GIVE HIM BLOOD. IF THE EPSTEIN BAR VIRUS COMES BACK HIGH THEY WILL CANCEL HIS SURGERY AND RESCHEDULE IT IN A WEEK. THEY WILL SEND US HOME FOR THAT WEEK. JUSTIN HAS BEEN DOING SO GOOD AND THE ONCOLOGY DOCTOR DOESN'T THINK HE HAS THE VIRUS BUT THEY AREN'T SURE WHY HIS WHITE COUNTS AND HIS OTHER COUNTS ARE DROPPING SO QUICK. JUSTIN HAD TO RECIEVE HIS NEUPOGEN SHOT THIS MORNING ALSO BECAUSE OF THE COUNTS. MY NERVES ARE SHOT WITH THIS WAITING. I REALLY HOPE THEY ARE ABLE TO DO THE SURGERY AND GET THIS ALL OVER. IT'S LIKE WE JUST START GETTING AHEAD AND THEN BOOM WE GET KNOCKED BACK DOWN. I FEEL LIKE SCREAMING. JUSTIN IS ALL UPSET THIS MORNING AND IT IS WEARING ON HIM TOO. HE IS SUCH A TROOPER THOUGH.
OUR GOOD FRIEND MARION GIANETTO SENT JUSTIN A SHIRT, POSTER, AND PICTURE OF HIS TORTOISE BRAVE DOWN TO HIM. HE JUST LOVES THEM. THANK YOU SO MUCH MARION!!!!
WELL I'LL UPDATE MORE THIS AFTERNOON AFTER WE GET SOME NEWS ON WHAT IS GOING TO HAPPEN WITH SURGERY. HOPEFULLY WE WILL BE ABLE TO GET IT DONE. THEN IT WILL BE OVER WITH.

Tuesday, August 13, 2002 at 05:32 PM (CDT)

WELL JUSTIN IS GOING TO BE SCHEDULED FOR SURGERY ON FRIDAY TO HAVE THE TUMOR REMOVED ON THE RIGHT LUNG. THEY WILL HAVE TO DO A THORACONOMY INSTEAD OF A THORASCOPY. WHICH MEANS THEY WILL HAVE TO OPEN UP HIS SIDE AGAIN. HOPEFULLY HE WILL COME OUT OF THIS SURGERY A LITTLE BETTER THAN THE LAST ONE AND NOT HAVE SUCH A ROUGH TIME. WE AREN'T SURE IF THE SURGERY IS GOING TO BE IN THE MORNING OR THE AFTERNOON. WE SHOULD FIND OUT TOMORROW. HE DOESN'T HAVE VERY GOOD LUNG FUNCTION BUT THEY THINK HE WILL BE ABLE TO GO THROUGH WITH THE SURGERY. HE WILL NEVER HAVE NORMAL LUNG FUNCTION AGAIN. THE CT SCAN SHOWED THAT THEIR WASN'T REALLY ANY CHANGE FROM THE LAST CT SCAN. THAT WAS GOOD NEWS. HE IS STARTING TO HAVE SOME PANCREAS PROBLEMS SO THEY ARE GOING TO ALSO TAKE SOME FLUID FROM THE PANCREAS AT THE SAME TIME AS THE SURGERY AND CHECK THAT TO SEE WHAT AND HOW MUCH OF MEDICINE TO PUT HIM ON FOR THAT. THEY MIGHT ALSO REMOVE HIS WARTS ON HIS FEET AT THE SAME TIME. AFTER SURGERY AND HE IS DOING BETTER WE MIGHT USE A NEW PROTOCOL THAT THE DOCTORS GOT FROM BOSTON INSTEAD OF CHEMO SINCE HIS KIDNEYS ARE SHOWING SOME SLIGHT PROBLEMS FROM ALL THE CHEMO HE HAS ALREADY RECIEVED. THE PROTOCOL HAS SOME CHEMO IN IT BUT NOT QUITE AS TOXIC AND DAMAGING.

JUSTIN'S COUNTS DROPPED A LITTLE BIT TODAY. HIS WHITE COUNT DROPPED ONE POINT ALONG WITH HIS HEMAGLOBIN AND PLATELETS. HIS LIVER ENZYMES ARE COMING DOWN AND LOOKING MUCH BETTER. THAT IS GREAT.

JUSTIN DID GREAT TODAY!!! HE DRANK ONE CHOCOLATE BOOST AND I BIG BOTTLE OF BLUE GATORADE. HE ATE SOME PEANUTS, HAM, CUCUMBER, AND A COUPLE BITES OF A BANANA. FOR DINNER HE WANTED CHICKEN WINGS. WE GOT 20 AND HE ATE 3 AND ONE PIECE WENT UP HIS NOSE WHEN HE COUGHED AND THEN HE GOT SICK TO HIS STOMACH. WHEN HE FELT BETTER AFTER HE ATE 3 MORE AND ENJOYED THEM VERY MUCH. HE WILL WORK ON SOME MORE LATER. HE SAID HE BROKE A RECORD, THAT HE IS PROBABLLY THE ONLY BOY TO HAVE CHICKEN WINGS UP HIS NOSE BEFORE. I AGREED WITH HIM. HE IS SO FUNNY.

HE WAS UP WALKING AROUND ALL DAY. HE WENT TO THE PLAY ROOM AND THE CHILD LIFE GIRL GAVE HIM A REMOTE CONTOL WALKING BIG BUG AND A HESS TRUCK. HE PLAYED IN THE HALL FOR QUITE A WHILE AND ALSO PLAYED WITH HIS GAMEBOY. HE HAS FELT GOOD ALL DAY AND IS DOING VERY WELL TODAY. HE IS NOW WORKING ON HIS SECOND CAN OF BOOST BREEZE. HE IS SUCH A TROOPER!!!!!

MY GOOD, GOOD FRIEND JILL (ZACK'S MOM) IS COMING TO STAY WITH US FOR A FEW DAYS ON MONDAY NEXT WEEK. WE ARE SO EXCITED AND CAN'T WAIT TILL SHE ARRIVES!!! WE HAVE MISSED HER SO MUCH!!!

Monday, August 12, 2002 at 07:26 PM (CDT)

JUSTIN WENT DOWN FOR HIS PULMINARY TEST TODAY JUST BEFORE 10:00 AM AND HE DIDN'T RETURN TO HIS ROOM UNTIL AROUND 12:30 PM. THEN HE HAD A FEW MINUTES AND HAD TO GO DOWN FOR HIS CT SCAN. WE HAD TO WAIT FOR A BIT AND DIDN'T RETURN TO HIS ROOM UNTIL AROUND 2:30 PM. IT WAS A LONG STRESSFUL MORNING. WE WON'T HEAR ANYTHING ON THE TWO TESTS UNTIL TOMORROW MORNING OR EARLY AFTERNOON. IT IS GOING TO BE A VERY HARD WAIT AND STRESSFUL.

TODAYS JUSTIN'S COUNTS LOOKED A LITTLE BETTER. HIS WHITE COUNT IS GOOD ALONG WITH HIS HEMAGLOBIN. HIS PLATELETS ARE STILL A LITTLE LOW. HIS LIVER ENZYMES ARE LOOKING A LOT BETTER. HIS GGT IS STARTING TO COME DOWN AND LOOK BETTER.

THIS AFTERNOON JUSTIN PLAYED ON HIS GAMEBOY AND PLAYSTATION. THEN HE LAYED DOWN AND SLEPT FROM ABOUT 6:00 PM UNTIL HIS 8:00 PM MEDS WHEN I HAD TO WAKE HIM UP FOR THEM. WISH I COULD OF LET HIM SLEEP AND REST. NOW HE IS AWAKE WATCHING THE DISCOVERY CHANNEL AND PLAYING ON HIS GAMEBOY AGAIN. HE IS STILL VERY TIRED FROM HIS LONG DAY.

HOPEFULLY TOMORROW FIRST THING IN THE MORNING WE WILL FIND OUT THE NEWS ON THE TESTS AND THEN KNOW WHAT THE PLAN IS GOING TO BE. IT IS GOING TO BE A LONG NIGHT WAITING AND THINKING ABOUT IT. I HATE THE WAITING. WAITING TO HEAR NEWS IS THE WORST. BUT WE WILL GET THROUGH IT, TOMORROW ISN'T TO FAR AWAY.

THANK YOU EVERYONE FOR THE SUPPORT!!

Sunday, August 11, 2002 at 06:42 PM (CDT)

WELL IT'S BEEN A FEW DAYS SINCE I'VE UPDATED. THURSDAY WE FOUND OUT THAT WITH JUSTIN'S PULMINARY TEST THAT HE ONLY HAD ABOUT 35 PERCENT OF LUNG FUNCTION AND THAT WASN'T ENOUGH TO HAVE HIM GO THROUGH SURGERY AT THAT TIME. SO THE DOCTORS SET UP FOR HIM TO RECIEVE BREATHING TREATMENTS WITH SOME MEDS TO OPEN HIS AIRWAYS EVERY FOUR HOURS AND THEN TO HAVE HIS CHEST PT EVERY HOUR. IT SEEMS TO BE HELPING QUITE A BIT AND THE NURSES AND DOCTORS SAY HE IS SOUNDING MUCH BETTER. YOU CAN HEAR IT LOSING UP AND HIS COUGHS ARE MORE PRODUCTIVE.

HE HASN'T BEEN RUNNING A FEVER LATELY, MAYBE A LOW GRADE ONE EVERY NOW AND THEN. HIS COUNTS HAVE BEEN FAIRLY GOOD BUT ARE STILL A LITTLE LOW WITH HIS HEMAGLOBIN AND HIS PLATELETS. HIS WHITE COUNT IS DOING WELL AND IS IN NORMAL RANGE RIGHT NOW WITH THE NEUPOGEN SHOTS HE RECIEVES EVERY NIGHT. HIS ONE LIVER ENZYME HAS BEEN REALLY HIGH BUT IS GETTING BETTER VERY SLOWLY AND SOME OF HIS OTHER COUNTS ARE A LITTLE OFF BUT ARE OK FOR RIGHT NOW.

TODAY THEY STOPPED HIS ONE ANTIBIOTIC, GANCYCLOVEIR BECAUSE IT'S SHOWING A HIGH CREATINE LEVEL WHICH AFFECTS HIS KIDNEYS. TODAY HE WAS ABLE TO LEAVE THE UNIT FOR ABOUT AN HALF AN HOUR AND HE WENT TO THE GIFT SHOP AND BOUGHT AN ARMY HELICOPTER AND A METAL LADY BUG CHARM TO HOLD FOR GOOD LUCK.

HE IS HAVING ANOTHER PULMINARY TEST TOMORROW AT NOON AND HE IS ALSO GOING TO HAVE A CT SCAN SOMETIME TOMORROW. HOPEFULLY HIS PULMINARY TEST SHOWS 50 PERCENT OF LUNG FUNCTION OR HIGHER SO WE CAN GO FOR THE SURGERY THIS WEEK, OTHER WISE WE WILL HAVE TO DO CHEMO.

CHUCK CAME DOWN ON FRIDAY THIS TIME AND HAD TO HEAD HOME ON SATURDAY AFTERNOON. HE HAD TO GO SOME PLACE ON SUNDAY SO HE WAS UNABLE TO STAY. ERIC AND KAITLIN STAYED WITH GRANDMA AND GRANDPA CUMMINGS THIS WEEKEND. THEY HELPED WITH THE COWS AND ERIC SAW A FOX RIGHT UP CLOSE.TOO CLOSE FOR COMFORT!! THEY ALSO HELPED WITH HAY AND WENT SWIMMING. MY PARENTS BROUGHT THEM HOME SATURDAY AND BROUGHT CHUCK SOME SPEGHETTI FOR DINNER.

ERIC AND KAITLIN ARE ALMOST READY FOR SCHOOL. I HAVE TO TAKE THEM TO GET THEIR SNEAKERS AND WORK SHOES AND A FEW MORE SCHOOL SUPPLIES AND THEN THEY SHOULD BE SET EXCEPT KAITLIN NEEDS SOME JEANS YET FOR SCHOOL. IT WILL BE SO GOOD FOR THEM TO GET BACK TO SCHOOL AND BE BUSY.

AS A LOT OF YOU ALREADY KNOW JUSTIN'S TORTOISE IS NOW AT HIS HOME IN NEW YORK. HE WAS DELIVERED BY LORI FROM TURTLE HOMES ON THURSDAY. BRAVE IS DOING WELL AND WE WILL BE PUTTING A PICTURE ON THE WEB PAGE AS SOON AS POSSIBLE. BRAVE RIGHT NOW HAS TO STAY AT JUSTIN'S GRANDPARENTS BRYCE'S HOUSE FOR RIGHT NOW UNTIL WE GET HOME. JUSTIN'S TORTOISE'S NAME IS BRAVE AND HE IS SO, SO TINY. JUSTIN JUST LOVES HIM AND CAN'T WAIT TO GET HOME TO HIM. WE WOULD LIKE TO THANK LORI AT TURTLE HOMES SO MUCH FOR THIS WONDERFUL GIFT, YOU HAVE MADE JUSTIN THE HAPPIEST LITTLE BOY.

JUSTIN HAS BEEN EATING A LOT OF SHRIMP LO-MEIN LATELY AND DRINKING HIS BLUE GATORADE. GLADYS AND CHARLIE (JUSTIN'S GRANDPARENTS) SENT DOWN SOME CUCUMBERS AND TOMATOES FROM MY GARDEN AND JUSTIN AND I HAVE BEEN ENJOYING THEM SO MUCH. BOY DOES FRESH FOOD FROM A GARDEN TASTE SO GOOD!!! WE MISS HOME SO MUCH!!!!!!

LATE SATURDAY NIGHT WE HAD QUITE THE SURPRISE. MY BROTHER MARK AND NICKIE CAME DOWN TO VISIT. JUSTIN WAS ALREADY ASLEEP. THEY STAYED WITH JUSTIN AND I WENT TO THE MCDONALD HOUSE TO SLEEP FOR THE NIGHT. JUSTIN WAS QUITE SURPRISED IN THE MORNING TO SEE THEM THERE. THEY HAD A NICE VISIT AND JUSTIN ENJOYED SEEING THEM AND SPENDING SOME TIME WITH THEM. THEY HAD TO HEAD HOME ON SUNDAY AFTERNOON.

WELL EVERYONE CHEER JUSTIN ON TOMORROW AT NOON FOR HIS PULMINARY TEST. THANK YOU ALL FOR ALL OF YOUR SUPPORT, IT HELPS A LOT.

Wednesday, August 07, 2002 at 10:47 PM (CDT)

YESTERDAY JUSTIN HAD AN OKAY DAY. HE TRIED EATING A BIT ( NOT A LOT ) AND DRANK HIS BOOST BREEZE VERY WELL. HE GOT UP AND WALKED AROUND AND GOT OUT OF HIS ROOM FOR A WHILE AND PICKED ON HIS NURSE. SOMEONE GAVE HIM A CAN OF SILLY STRING AND HE WAS SHOOTING HER WITH THAT. HE TIRED QUICKLY THOUGH. HIS LIVER ENZYMES ARE UP AND THE REST OF HIS COUNTS ARE ALL DROPPING BACK DOWN. THEY STOPPED HIS NEUPOGEN SHOTS LATE LAST NIGHT.

TODAY JUSTIN HAD TO GET UP EARLY AND GO RE-DO HIS HEARING TEST. THAT DIDN'T TAKE VERY LONG AT ALL. HE DOES HAVE SOME HEARING LOSS IN HIS RIGHT EAR. HIS PULMINARY TEST WAS AT 10:45AM TODAY. HE DID HIS VERY, VERY BEST!!! THAT LASTED SUCH A LONG TIME, WE NEVER GOT BACK INTO HIS ROOM UNTIL 12:30-12:45PM. WE WILL HOPEFULLY FIND OUT HIS RESULTS FOR THAT TOMORROW EARLY. HOPEFULLY!!! HE TRIED TO EAT A LITTLE BIT AGAIN TODAY AND DRANK SOME OF HIS BOOST BREEZE. HE HAS BEEN WORKING ON HIS SPIROMETER AND I'VE BEEN DOING HIS PERCUSSOR TREATMENTS. THIS AFTERNOON HE STARTED COUGHING QUITE BADLY AND HAS BEEN SNEEZING. A COUPLE TIMES HE'S GOT COUGHING SO BAD THAT IT MADE HIM SICK TO HIS STOMACH.

TONIGHT HE IS STILL COUGHING AND IT IS HARD FOR HIM TO REST AND SLEEP WITH OUT COUGHING. HE IS ON OXYGEN AT NIGHTS. HE HAS BEEN DOING BETTER, HOPEFULLY HE'S NOT GETTING SICK AGAIN. THEY STARTED HIS NEUPOGEN SHOT BACK UP AGAIN TONIGHT. HIS LIVER COUNTS CAME DOWN A LITTLE BIT AND LOOK A LITTLE BETTER ( NOT BY MUCH THOUGH ). HIS OTHER COUNTS ARE STILL DROPPING LOWER. I HOPE HE HAS A RESTFUL NIGHT AND DOESN'T COUGH ALL NIGHT. HIS BACK HASN'T BEEN BOTHERING HIM THESE PAST FEW DAYS AND IS DOING OK.

I ASKED FOR PRAYERS FOR JUSTIN AND HAVE A NEW SIGHT THAT HE HAS BEEN PUT ON FOR PRAYERS. WE NEED OUR MIRACLE AND ALL THE PRAYERS. PLEASE PRAY FOR JUSTIN AND GO TO HIS SIGHT.
THANK YOU SO MUCH FOR ALL OF YOUR SUPPORT AND PRAYERS. HERE IS THE SIGHT
http://www.kidsneedprayer.net/justin.html

Monday, August 05, 2002 at 10:38 PM (CDT)

LAST NIGHT JUSTIN HAD A LITTLE BIT OF A ROUGH NIGHT. HE WOKE UP SEVERAL TIMES COUGHING QUITE BADLY AND THEN WOULD GET SICK TO HIS STOMACH. HIS TEMP. HAS BEEN RUNNING AROUND 99.7 ALL DAY. THEY DID A CHEST X-RAY TODAY, A ECHO CARDIGRAM, AND A HEARING TEST. THEY STOPPED ONE OF HIS MEDS SINCE ONE OF THE CULTURES CAME BACK NEGATIVE. JUSTIN HAD A VERY TOUGH DAY ALL DAY TODAY WITH COUGHING QUITE BADLY AND THEN GETTING SICK TO HIS STOMACH. HE HAS BEEN ON OXYGEN ALL DAY TODAY SINCE HE ISN'T DOING VERY WELL WITH OUT IT. HIS BLOOD PRESSURE HAS BEEN A LITTLE HIGHER THAN USUAL BUT NOT REAL HIGH. THE CHEST X-RAY SHOWED HE HAD SOME FLUID ( A LITTLE MORE THAN THE LAST ONE ) ON HIS LEFT LUNG.

THEY SAID THEY SCHEDULED HIS PULMINARY TEST FOR TOMORROW AT 3PM AND POSSIBLE SURGERY ON WEDNESDAY FOR THE RIGHT LUNG. I'M NOT SURE IF HE WILL BE ABLE TO GO THROUGH WITH THE TEST TOMORROW IF HE IS STILL BEING ON OXYGEN AND NOT DOING TO WELL. IF HE DOESN'T PASS THE TEST THEY WON'T BE ABLE TO DO THE SURGERY AND THEY WILL HAVE TO DO CHEMO SOON. BUT I'M NOT SURE IF HE WILL EVEN BE ABLE TO HANDLE CHEMO EITHER RIGHT NOW. I WISH THINGS WOULD START LOOKING BETTER FOR HIM, THIS IS SO FRUSTRATING. EVERY TIME YOU THINK YOU'VE GOTTEN ALMOST OVER THE BRICK WALL THAT'S THERE ANOTHER ONE APPEARS AND IS EVEN HIGHER. HE HASN'T EVEN REALLY BEEN WELL ENOUGH TO ENJOY HIS BIRTHDAY TOYS AND GIFTS. HE PLAYED WITH A COUPLE THINGS ON SUNDAY ON AND OFF BUT THAT IS ABOUT IT.

I REALLY WISH WE WOULD GET OUR MIRACLE!!!

Sunday, August 04, 2002 at 07:22 PM (CDT)

TO MAKE A LONG STORY SHORT JUSTIN DIDN'T HAVE HIS PARTY AND DIDN'T GET TO SEE HIS SURPRISE ON FRIDAY. HE GOT VERY SICK AND THEN LATER IN THE AFTERNOON WAS TAKEN TO ICU. HE DID GET TO HAVE A GOOD NIGHT WITH HIS UNCLE DEAN AND AUNT MARY ON THURSDAY AND THURDSDAY NIGHT UNCLE DEAN STAYED WITH HIM AND THEY HAD A GOOD EVENING. DURING THE LATE NIGHT JUSTIN WAS UP ALL THROUGH THE NIGHT COUGHING BADLY AND THROWING UP. THEN EARLY IN THE MORNING HE STARTED WITH A HIGH TEMP. THEY DID A CHEST X-RAY AND AN ULTRA SOUND BECAUSE HIS LIVER ENZYMES WERE REALLY HIGH. THEN HIS BLOOD PRESSURE DROPPED REALLY LOW AND HE WAS TAKEN TO THE ICU AROUND 12:00-12:30PM. HIS DAD, SISTER, BROTHER, GRANDMA AND GRANDPA BRYCE AND GRANDMA AND GRANDPA CUMMINGS ARRIVED AROUND 1:00PM. HIS UNCLE DEAN AND AUNT MARY HAD TO HEAD HOME A LITTLE WHILE AFTER EVERYONE ELSE ARRIVED.
HE DID GET TO OPEN HIS PRESENTS FROM HIS GRANDMA AND GRANDPA BRYCE AND SPEND SOME TIME WITH THEM BEFORE THEY HAD TO HEAD BACK HOME. AT NIGHT AROUND ALMOST 9PM HE WAS MOVED BACK TO HIS ROOM ON 3A BECAUSE HE WAS DOING A LITTLE BETTER. HE OPENED A FEW OF HIS GIFTS FROM HIS GRANDMA AND GRANDPA CUMMINGS AFTER ARRIVING BACK IN HIS ROOM. THEY STAYED WITH HIM FOR THE NIGHT. HE WAS AWAKE WITH COUGHING AND THROWING UP AND FEVER AGAIN DURING THE NIGHT. THEY STARTED HIM FRIDAY ON SOME ANTIBIOTICS. SATURDAY HE WAS STILL NOT FEELING ALL THAT GREAT. HE DID HAVE HIS CAKE AND OPENED ALL OF HIS GIFTS. HE RECIEVED MANY, MANY WONDERFUL GIFTS FROM MANY PEOPLE. HE LOVED THEM ALL BUT IT HAS BEEN REALLY HARD TO ENJOY THEM WHILE NOT FEELING VERY WELL. SATURDAY AFTERNOON HIS GRANDMA AND GRANDPA CUMMINGS HEADED HOME.
SATURDAY NIGHT CHUCK STAYED WITH HIM AND THE OTHER TWO KIDS AND I STAYED OVER TO THE MCDONALD HOUSE. AGAIN JUSTIN WOKE UP AROUND 2AM COUGHING, THROWING UP AND WITH A FEVER OF AROUND 101.5 OR SO. THEY DID ANOTHER CHEST X-RAY AND ARE GOING TO SEND CULTURES FOR CMV AND EPSTIEN BAR VIRUS. TODAY JUSTIN RECIEVED BLOOD AND TONIGHT HE RECIVED PLATELETS. HE IS STILL RECIEVING ANTIBIOTICS. HIS PULMINARY TEST HAS BEEN CANCELLED UNTIL LATER THIS WEEK SOMETIME. HE SEEMS TO BE FEELING A LITTLE BETTER TODAY. NOW HIS CHEMO AND SURGERY ARE ALL ON HOLD UNTIL AFTER WE ARE ABLE TO GET HIS PULMINARY TEST DONE. HOPEFULLY HE WILL BE DOING BETTER SO WE ARE ABLE TO GET IT DONE SOON.
JUSTIN WOULD LIKE TO THANK EVERYONE FOR ALL OF THE WONDERFUL GIFTS HE RECIEVED AND CARDS. HE LOVED THEM ALL!!!! ALSO HE FEELS BAD THAT HE MISSED MRS. GIANETTO AND HER MOM, SHANNON ( A NURSE FROM 3C SOUTH ), AND JAN & RHONDA FROM HUGS AND HOPE. HOPEFULLY HE WILL GET TO SEE HIS SURPRISE SOMETIME THIS WEEK THAT HE WASN'T ABLE TO SEE.
HOPEFULLY THINGS WILL GET BETTER FOR JUSTIN SOON.

THANK YOU ALL FOR EVERY THING FOR JUSTIN'S BIRTHDAY !!!!!!!!! WISH HE COULD OF HAD A BETTER DAY. THANK YOU EVERYONE!!!!!

Wednesday, July 31, 2002 at 03:40 PM (CDT)

YESTERDAY AT THE TUMOR BOARD THEY DECIDED THAT IT WAS MOST LIKELY A FRACTURE ON THE SPINE. THEY DID A CT SCAN TODAY TO LOOK AT THAT AND ALSO LOOK AT THE LUNGS AND ABDOMEN. THE CT SCAN SHOWED THAT IT WAS A FRACTURE ON THE SPINE. ALL OF HIS BONES ARE BECOMING WEAK AND HE WILL HAVE TO VERY, VERY CAREFUL BECAUSE THEY COULD BREAK OR FRACTURE VERY EASILY NOW. THE CT SCAN ALSO SHOWED THAT THE LEFT LUNG LOOKS A LITTLE BETTER, BUT THERE IS A FLUID COLLECTION UNDER THE LUNG. THE DOCTORS THINK THIS WILL TAKE CARE OF ITSELF AND BE OKAY. THE RIGHT LUNG TUMOR DOESN'T SEEM TO BE ANY BIGGER RIGHT NOW. THE REALLY BAD NEWS IS THAT HIS AFP IS HIGH AGAIN. IT MORE THAN DOUBLED!! THIS IS REALLY BAD BECAUSE IT MEANS THE TUMOR IS GROWING OR MIGHT BE MORE THAT THE CT SCAN CAN'T PICK UP RIGHT NOW BECAUSE THEY ARE TOO SMALL. I DON'T KNOW?? TOMORROW JUSTIN WILL HAVE A PULMINARY TEST TO SEE HOW WELL HIS LUNGS ARE WORKING AND WHETHER OR NOT HE WILL BE STRONG ENOUGH FOR ANOTHER SURGERY OR NOT. NOT SURE WHEN THAT WILL BE TOMORROW. NOW WE WILL HAVE TO WAIT AND SEE WHAT HAPPENS NEXT AND WHAT KIND OF CHEMO TO USE AND ALL. I REALLY HATE THIS WAITING AND THESE UPS AND DOWNS. IT IS SO UPSETTING. I CALLED CHUCK AND ASKED HIM TO GET HOLOD OF DR. DUNN AND TALK WITH HIM ABOUT THINGS. I JUST GET SO UPSET AND EMOTIONAL ANY MORE. HOPEFULLY SOMETHING WILL BE DECIDED SOON AND WE CAN GET STARTED WITH IT QUICKLY SO THAT NOTHING STARTS GROWING. I JUST WISH WE COULD FIND SOMETHING THAT WOULD WORK SOON!!!!!! THIS IS JUST SO UPSETTING.

JUSTIN IS STARTING TO GET EXCITED ABOUT HIS BIRTHDAY. ONLY TWO DAYS AWAY. HE GOT A COUPLE PRESENTS FROM HIS CHEMO ANGEL CATHIE. SHE SENT HIM A BEAUTIFUL SHELL TURTLE NIGHT LIGHT WITH A SMALL TURTLE BAG AND A HUGE SAND DOLLAR. HE REALLY LOVED THEM. LORI FROM TURTLE HOMES WROTE JUSTIN AND TOLD HIM BRAVE LOVED HIS NAME AND THAT HE WENT OUTSIDE AND HIS HOUSE NOW HAS HIS NAME ON IT. HE WAS SO EXCITED TO HEAR WHATS HE'S BEEN DOING.

WELL SAY A PRAYER THAT ALL WORKS OUT AND THAT SOMETHING WORKS SOON!!!!!!!!!!!!!!!!!!!

Monday, July 29, 2002 at 07:29 PM (CDT)

CHUCK CAME DOWN SATURDAY AND ARRIVED AROUND 10:00-10:30AM. JUSTIN DID VERY WELL THIS WEEKEND. HE WENT FOR WALKS, TRIED EATING SOME BAGEL BITES AND DRANK HIS BOOST. HE TRIED SOME BOOST BREEZE AND LIKED THAT HAS BEEN DRINKING THAT. HIS LIVER ENZYMES ARE GETTING MUCH BETTER AND HIS OTHER COUNTS ARE STARTING TO COME BACK UP. THE DOCTORS THINK THAT IT'S A FRACTURE ON THE SPINE. THEY SENT UP SOME ONE TO FIT HIM FOR A BRACE FOR HIS BACK TODAY. THE DOCTORS WILL ALL TALK ABOUT JUSTIN AND WHAT THE NEXT STEP IS TOMORROW AT THE TUMOR BOARD. JUSTIN WILL HAVE TO WEAR THE BRACE FOR HIS BACK WHEN EVER HE IS UP OUT OF BED TO HELP IT HEAL AND KEEP IT FROM GETTING ANY WORSE. WE PROBABLLY WON'T FIND OUT WHAT THE FINAL DECISION IS FROM THE TUMOR BOARD UNTIL WEDNESDAY. THEY COULD DO MORE CHEMO OR THE OTHER LUNG SURGERY ON THE RIGHT LUNG TO TAKE OUT THE TUMOR ON THAT SIDE. HATE THE WAITING TO FIND OUT!!!!

THE BIGGEST THING THAT HAPPENED THIS WEEKEND WAS THE PACKAGES JUSTIN RECIEVED FROM AN ORGANIZATION CALLED TURTLE HOMES. THEY SENT HIM BUNCHES OF TURTLE ITEMS, REPTILES, AND OTHER GOODIES. I THINK THE BEST WAS THE PICTURE OF A BABY TORTOISE THAT WILL BE HIS TO KEEP WHEN HE IS WELL ENOUGH TO HAVE IT. IT IS A LEOPARD TORTOISE AND RIGHT NOW IS AS BIG AS AN EGG. IT COULD GROW UP TO BE 2 FEET AND WEIGH ABOUT 80 POUNDS. HE HAS NAMED IT "BRAVE". YOU ALL WILL BE ABLE TO SEE IT SOMETIME SOON WHEN A LINK IS SET UP TO SHOW IT. TURTLE HOMES HAS MADE JUSTIN VERY VERY HAPPY. HIS FACE LIT RIGHT UP WITH ALL HIS THINGS AND HIS TORTOISE. THEY ALSO SENT HIM THINGS AUTOGRAPHED FROM THE CROC HUNTER "STEVE ERWIN". SO WHEN WE GET THE LINK AND GIVE IT TO YOU MAKE SURE YOU CHECK OUT JUSTINS LEOPARD TORTOISE NAMED "BRAVE". JUSTIN LOVES HIM SO MUCH ALREADY.

GUESS WHAT JUSTIN WANTED AGAIN FOR DINNER TONIGHT??? DID YA GUESS??? YUP "CLAMS". HE ATE ONLY TWO THOUGH. HE THOUGHT HE WANTED THEM BUT THEN DECIDED AGAINST IT. HIS FACE IS REALLY RED TONIGHT AND HIS TEMP IS RUNNING AROUND 99.7 RIGHT NOW. HOPEFULLY IT WON'T GO ANY HIGHER. HE RAN A SMALL TEMP LAST NIGHT AND THEN IT WENT AWAY ON ITS OWN AFTER AN HOUR OR SO. HE GOT SICK ONCE TONIGHT AND COUPLE TIMES LAST NIGHT. IT SEEMS TO HAPPEN LATELY ABOUT THE SAME TIME OF NIGHT.

THE CANDLE LIGHTERS BROUGHT HIM A BIG HUGE BUTTERFLY BALLOON TONIGHT. THEY ARE A WONDERFUL ORGANIZATION TOO. WELL HIS ROOM IS ALL DECORATED AND READY FOR HIS BIRTHDAY FRIDAY. I WENT AND ORDERED HIS CAKE TODAY. HE WANTED A LEGO CAKE BUT THEY COULDN'T DO ONE THEY SAID SO HE GOT A POKEMON ONE. HE IS GETTING EXCITED ABOUT HIS BIRTHDAY!!! HE'S MADE OUT HIS LIST OF TURTLES ( WHICH HE GOT ), SHIPS, TRAINS, LEGOS, POKEMON CARDS, BLIMPS, MATCHBOX CARS, GAMEBOY GAMES, PLAYSTATION GAMES, SUB MARINES, AND PINS FOR HIS HATS. WELL BETTER GO FOR NOW JUSTIN WANTS HIS BACK RUBBED AND HE'S GETTING TIRED.

Friday, July 26, 2002 at 08:08 PM (CDT)

JUSTIN'S BIRTHDAY IS NEXT WEEK!!!!!!!! Well this week has been kind of hard, a lot of ups and downs. Justins temp. on Monday night went up to 102 and they restarted his antibiotics. He had fever shakes and chills, his heart rate was quite high, his blood pressure was up and he had pain in his lower back and were the surgery was.

On Tuesday they were going to put in an NJ tube but Dr.Casas decided to have Justin drink 2 cans of boost instead because he was so upset and scared about the tube going in. Then after he can do well with 2 cans he'll have to drink 3 cans daily. He is working very hard at doing this and is very thankful that he doesn't have to have the tube in right now for feedings. He ran a low grade fever in the morning and then was okay through the day. The infectious control doctors came in and ordered a bone scan for tomorrow to see if maybe he has an infection in his bones. All of his other tests have all come back negative and they think he could have an infection in the bones because he's having back pain.

Wednesday Justin had his bone scan around 11am. It lasted almost an hour. He did fairly well all day. I left to go get my shower around 12:30pm at the McDonald house. Around 1-1:30pm Justin called and said he had Dr.Casas paged and talked with her on the phone to see if he could have clams. She said it was okay and he wanted me to go to Red Lobster to get him some steamed clams. He drank his two cans of boost and also ate two dozen of steamed clams. He had a very good night.

Thursday still no results on the bone scan. The final report still isn't back yet. Justin wanted another two dozen clams today. He ate his first dozen for lunch. Then he had his second dozen for dinner. Those didn't stay down. He started to get sick again. He had a very hard night with diareaha and being sick to his stomach. Again another fever of around 100 and pain.

This morning Justins temp. is down. He woke up for his morning meds and then fell back to sleep. He is not feeling well at all. He's been sick to his stomach all morning. He slept until 11am. He hasn't been feeling well day. Sick to his stomach and diareaha all day. His temp. has been running around 99 all day. The bone scan came back and it showed a possible fracture on his spine in his lower back. They are going to do an x-ray today. I haven't gotten the full report on the x-ray yet. The oncology doctor on call said it could be 3 different things #1 it could be a fracture from weaking of his bones and he might have to wear a brace for it, #2 it could be an infection in his bones and he would have to be treated for a long time for it, or #3 it could be a tumor. The oncology doctor is going to wait and talk with our oncology doctor Griffin and see if he would like to biopsy it Monday to see if it is a tumor or not. Justin will have to be NPO Sunday night in case they have to biopsy it. He is asleep now and resting nicely.

I have been decorating his hospital room for the past two days for his birthday next week. His birthday is Friday, August 2nd, he is going to 10 years old. I thought he might like to enjoy the decorations in his room. He really likes it. I put up tons of decorations. My good friend jill and hugs and hope are planning something very special for Justin on his birthday, he is just going to love it. It's going to be the best birthday present ever. I want this to be the best birthday ever for him. I'm ordering a cake for him and the nurses are all going to bring in a dish to pass. All the other nurses from 3c south are also going to come over for his birthday. I sure hope he's feeling well enough to enjoy it. He was so very sick for his birthday last year and I would like him to feel well enough to at least enjoy it this year. Everyone say a prayer for Justin to have a good birthday and be well enough to enjoy it!!!!!
Chuck will be here in the morning.

Monday, July 22, 2002 at 10:38 PM (CDT)

WELL TODAY JUSTIN HAD HIS ULTRA-SOUND. WE DON'T KNOW WHAT THE RESULTS ARE YET. WE WILL FIND OUT TOMORROW ON THAT. HIS TEMP. BEFORE THE ULTRA-SOUNMD WAS 100.4 AND HIS HEART RATE WAS A LITTLE HIGH. THEY WERE GOING TO PUT IN THE NG TUBE TODAY BUT THEY HAD PRE-PARED TO DO IT WITHOUT AN ANISTESIA AND SO IT WASN'T ABLE TO BE PUT IN TODAY AND WILL BE PUT IN TOMORROW MORNING AT 8:15AM FIRST THING. IT REALLY STRESSED JUSTIN OUT TODAY AND WE HAD TO WAIT A LONG TIME ( OVER AN HOUR) FOR THEM TO NOT BE ABLE TO DO IT. HE WAS VERY SCARED AND STRESSED AND UPSET. I WAS ALSO UPSET FOR THE TOTAL MIX UP AND FOR THE STRESSFUL WAIT AND UPSET FOR JUSTIN.

WHEN WE GOT BACK TO HIS ROOM HIS TEMP WAS DOWN TO 100 AND HIS HEART RATE WAS DOWN A LITTLE. HE LAYED DOWN IN THE LOUNGE CHAIR AND FELL ASLEEP. THEN HE WAS ABLE TO DRINK AND HE DRANK SOME WATER AND GATORADE. HE IS STILL UNABLE TO EAT AND FEELS SICK TO HIS STOMACH. I GUESS THIS MORNING THEY STOPPED HIS ANTIBIOTICS.

TONIGHT HIS TEMP HAS GONE UP TO 101.1. HE IS SLEEPING RIGHT NOW AND HIS HEART RATE IS A LITTLE HIGH. WE HAVE PUT HIM BACK ON THE OXYGEN FOR THE NIGHT. THEY HAVE CALLED THE DOCTORS AND MIGHT RE-START HIS ANTIBIOTICS TONIGHT TO HELP WITH THE FEVERS. THEY HAVE DRAWN CULTURES ON HIS HICKMAN CATHETER LINES TO SEE IF THERE MIGHT BE AN INFECTION IN THEM. HOPEFULLY HIS TEMP DOESN'T RISE ANY HIGHER TONIGHT. I WILL PROBABLLY STAY UP TO MAKE SURE HE WILL BE ALRIGHT THROUGH THE NIGHT. WHEN HE RUNS A FEVER LIKE THIS IT'S HARD TO SLEEP. I WORRY ABOUT HIM TO MUCH WITH THE FEVER.

WE HAVE STARTED A NEW DIET THAT INVOLVES DRINKING CARROT JUICE. WE HAVE A JUICER THAT MAKES THE CARROT JUICE. TODAY ERIC AND KAITLIN MADE CARROT JUICE WITH THEIR GRANDMA AND GRANDPA BRYCE. THE CARROT JUICE IS VERY GOOD AND SWEET. THE KIDS LOVE IT. IT TASTES SO MUCH BETTER THAN CARROT JUICE YOU WOULD BUY. A TOTAL DIFFERENT TASTE. THEIR GRANDMA AND GRANDPA BRYCE HAVE BEEN MAKING IT DAILY FOR US AND THEY HAVE ALSO BEEN TRYING IT AND LIKE IT ALSO. YOU CAN MAKE MANY JUICES WITH THIS JUICER BUT CARROT JUICE IS SUPPOSED TO BE THE BEST FOR YOU.

TOMORROW KAITLIN IS GOING SHOPPING WITH HER GRANDMOTHER BRYCE TO AMES. MAYBE SHE WILL GET SOMETHING MORE FOR SCHOOL. ERIC AND KAITLIN HAVE BEEN WORKING IN OUR GARDEN AND HAVE WEEDED IT AND PLANTED MORE CORN AND I GUESS THE NEW CORN THEY PLANTED IS COMING UP. THEY DID A GREAT JOB THEIR GRANDPARENTS SAID.

WELL THE NURSE IS IN HERE TAKING JUSTINS TEMP AGAIN AND HIS BLOOD PRESSURE. HIS BLOOD PRESSURE IS GOOD AND HIS TEMP IS 100.8. THEY WILL CHECK HIM AGAIN IN A LITTLE WHILE TO WATCH IT CLOSELY. THEY HAVEN'T STARTED ANTIBIOTICS YET, BUT WILL IF HIS TEMP REACHES 101.3 OR SO. DON'T KNOW WHY THAT'S THE MAGIC NUMBER BUT IT IS. JUSTIN IS STILL SLEEPING AND HIS FACE IS RED FROM THE FEVER. HOPEFULLY THE FEVER WILL BREAK TONIGHT AND HOPEFULLY A BETTER DAY TOMORROW.

Monday, July 22, 2002 at 09:32 AM (CDT)

WELL SATURDAY JUSTIN HAD A LITTLE BIT OF A ROUGH DAY. HE WAS SICK TO HIS STOMACH, HAD SOME DIAREAHA, AND WAS RUNNING QUITE A HIGH TEMP OF 103. AND NOT FEELING WELL AT ALL. HIS TEMP WENT UP AND DOWN ALL DAY. THEY DID AN X-RAY AND STARTED HIM ON SOME ANTIBIOTICS RIGHT ASWAY. HE IS STILL ON OXYGEN WHEN NEEDED, MOSTLY AT NIGHT. HIS NIGHT WAS OKAY. ERIC AND KAITLIN ARRIVED AROUND 1PM OR SO, THEY HAD A GOOD TIME IN VIRGINIA WITH THEIR UNCLE JASON AND AUNT BARB. CHUCK ARRIVED AROUND 9:30 AM. HE STAYED THE NIGHT WITH JUSTIN WHILE THE KIDS AND I WENT TO THE MCDONALD HOUSE FOR THE NIGHT. I TOOK THEM SCHOOL SHOPPING DURING THE DAY, THE GOT QUITE A BIT OF THEIR THINGS. WE HAD A GOOD TIME.

SUNDAY JUSTIN WAS DOING A LITTLE BETTER. HE HAD A TEMP. ONCE AND THEN IT WAS OKAY THROUGH OUT THE DAY. HE IS STILL SICK TO HIS STOMACH AND HAS DIAREAHA. HE IS STILL UNABLE TO EAT AND IS STILL RECIEVING PAIN MEDS FOR HIS PAIN. THEY TOOK THE BANDAGE OFF OF HIS INCISION. IT GOES FROM UNDER HIS ARM PIT TO THE BACK OF HIS SHOULDER BLADE, ALMOST TO THE MIDDLE OF HIS BACK. IT'S STILL SWOLLEN AND BRUISED AND IS TILL PAINFUL. HE STILL RECIEVES OXYGEN DURING THE NIGHT. I TOOK KAITLIN SHOPPING TODAY FOR ABOUT AN HOUR BEFORE THEY ALL WENT HOME. CHUCK AND THE KIDS LEFT AROUND 4PM TO HEAD BACK HOME. THEIR GRANDMA AND GRANDPA CUMMINGS WILL BE TAKING THEN SCHOOL SHOPPING AGAIN SOMETIME THIS WEEK TO THE MALL TO GET THEM SOME MORE ITEMS THAT THEY NEED. THEY HAVE GOTTEN SO BIG THESE PAST FEW MONTHS AND NEED QUITE A FEW CLOTHES. THEY ARRIVED HOME AROUND 7:30PM.

THIS MORNING JUSTIN WOKE UP AND TOOK HIS MEDS FOR ME AND THEN WENT BACK TO SLEEP AND SLEPT IN UNTIL AROUND 10AM. HIS COUNTS THESE PAST FEW DAYS ON HIS LIVER ENZYMES HAVE BEEN REALLY HIGH. THEY ARE A LITTLE BETTER TODAY BUT STILL NOT THAT GREAT. THEY HAVE DECIDED TO TAKE HIM OFF THE TPN AND PUT A FEEDING TUBE DOWN HIS NOSE AND DO FEEDINGS THAT WAY WHICH WILL BE LESS DAMAGING TO HIS LIVER. HE WILL STILL BE ABLE TO EAT AND DRINK WITH THIS IN. HIS TEMP THIS MORNING IS 99.7. HIS WHITE COUNT AND PLATELETS AND HIS OTHER COUNTS ARE DROPPING AND LOW. JUSTIN IS ALSO GETTING AN ULTRA-SOUND DONE TODAY TO LOOK AT THINGS. HIS HEART IS A LITTLE ELEVATED FROM SOME PAIN HE WAS HAVING THIS MORNING BUT IS GETTING A LITTLE BETTER WITH PAIN MEDICINE. HOPEFULLY THINGS WILL GET BETTER SOON. HIS LAST DAY OF THE CHEMO WAS LAST NIGHT. NOW HE WILL HAVE TWO DAYS OFF AND THEY WILL DECIDE IF THEY WILL DO ANOTHER 5 DAYS OR NOT WITH THESE NEXT COUPLE DAYS. I REALLY HOPE THIS CHEMO WORKS, HOPEFULLY THIS WILL BE OUR MIRACLE AND WILL WORK.

Saturday, July 20, 2002 at 08:05 AM (CDT)

Hi, Well haven't been on in a while because I've been very busy with Justin, doctors and everything so I will try and catch you all up on the week.

Monday Justin had a fair day. He is still getting sick to his stomach and has diareaha. No temp. He still has the bi-pap machine on at night to help open the lungs for better breathing. He still has oxygen on during the day. They are still giving him pain meds for the pain. He had another x-ray today that showed the right lung is a little decreased and the left lung is still decreased quite a bit.

Tuesday Justin had another fair day. No temp., still sick to his stomach, and diareaha. He is still on the bi-pap machine at night and oxygen during the day. He is still on pain meds for pain. His grandfather Cummings came down today to see him and spend a few days. He stayed with him for the night in the ICU unit.

Wednesday Justin had another x-ray and it looked a little better. He is doing okay but is not in excellent condition. Today they are going to move him to the bone marrow unit on 3a and start his chemo tonight. They started his chemo around 9:45pm and it ran for an hour. He tollerated it fairly well for the night. His grandfather Cummings stayed with him again for the night and I stayed over at the McDonald house to get some rest.

Thursday Justin did fairly well. He is still getting sick to his stomach with some diareaha. He is still on pain meds. His incision looks good from the surgery. It's a little swollen. The incision goes from the front of his chest under his arm pit to his back by the shoulder blade. The sterri strips are already off. They still put a bandage to cover it and keep it clean from infection. He is off the bi-pap machine for tonight to see how well he does for the night. He is still on oxygen for the day on and off when needed. Grandpa Cummings stayed with him another night.

Friday Justin had a CT scan first thing in the morning. He got up and walked a little bit around the unit. He did very well. It hurt him quite a bit to go through the CT scan this morning. It hurts to lay flat on his back with his incision from the surgery. He is still quite sick to his stomach and still has some diareaha. His grandfather Cummings left today around 1:00-1:30pm today to go back home to NY. Today is his third night of chemo and so far he is doing fairly well with it. His white count is starting to really drop. It all depends on his counts and how well he does to see if they do another five days of chemo after a two day break.

Chuck and the kids are coming down today. Eric and Kaitlin will be coming from Virginia with their Uncle Jason from their vacation with them. Chuck arrived here around 9:30 this morning. Not sure when Eric and Kaitlin will be here. Today Justin has been a little sick to his stomach, but so far is doing okay. Has had some pain and got some pain meds. Will update some more later on.

Sorry it has taken me so long to update but it's really hard some days when you get so busy and then I'm just to tired to get on the computer. More later on.

Sunday, July 14, 2002 at 04:13 PM (CDT)

Well Friday was an awful day!!Justin was so upset all day and very agitated. His heart rate would go up quite high and he would get really worked up. Finally around 9:30 pm they gave him something different to help him rest through the night. It helped a lot!! It was a very exhausting day!!

Saturday Justin recieved blood and platelets and rested most of the day. He was very calm and did very well through out the whole day. Chuck and the kids arrived around 11:30am. I took Eric and Kaitlin out to lunch and then we went out to the playground at the hospital for a while so they could play. We had a good time. Around 4pm. their Uncle Jason and Aunt Barb arrived. They went to Virginia to stay with them for a week and have some fun. Later in the evening Chuck and I went to dinner at the Ground Round for our anniversary. The nurse stayed right in Justin's room with him while we were gone. Then Chuck stayed with Justin for the night while I went to the McDonald house to sleep.

Justin had a very good night and rested very well. They took the breathing tube out this morning around 10:45am and the NG tube. Justin was on oxygen for the rest of the day and did fairly well. Then around 3:30pm they put him on a BiPap to help open up his airway and lungs for him because he was starting to work a little too hard to breath even with the oxygen. Since he's been on this it seems to be helping . He really doesn't like it too much but is tolerating it for now. He is resting a little better with it.The first thing he wanted after they took the tubes out was the T.V.. He is one tough little guy!!! I'm so happy he has the breathing tube out and is doing okay with out it. By tomorrow he should be doing even better.

Thursday, July 11, 2002 at 06:20 PM (CDT)

Justin is still fighting with a fever going up and down. They have started him on some more antibiotics. Dr. Dunn said there might be more small tumors around the big tumor they took out that the CT scan didn't detect. He has to go look at the piece of lung to see how many and how it looks and he will let me know more tomorrow. He also has to talk with the pathologist. Today Justin had several x-rays, the first one they had to see how the left lung looked and to see if it was safe to take out the drainage tube. Then they decided to clamp off the tube to see if the drainage backed up or caused any problems while being clamped. Then after a couple hours they did another x-ray to see how it looked. Everything looked good so Dr.Dunn came in and removed the drainage tube. Then they did another x-ray to see how the lung looked and make sure there wasn't any back up of fluid or any other problems. The x-ray looked good. It also looked like the lung was even working better. They will do another x-ray in the morning to see how it all looks and decide if it is safe enough to take out the breathing tube. They said they might have to wait another couple days and thentake it out, they don't want to take it out to soon and then have to put it back in again.

Justin is still quite sedated. They've had to give him something a little stronger since the versed isn't quite working any more. When he wakes up he gets quite upset with the tube being in and tries to pull it out and fights to get it out. He has also learned that he can reach his feet up to his head to diconnect it. I didn't think he could get his feet that high but he can. He's also very, very strong. Maybe tomorrow or the next day to get that out and then Justin will feel so much better. Hopefully the fevers will stop and go away also.

Wednesday, July 10, 2002 at 03:10 PM (CDT)

Today Justin's temp. went up a little higher. They still have him on the antibiotics and also had to give him a blood transfusion. They won't try and take out the breathing tube today, they don't think he's ready yet and they need to wait until his lung comes back better and works better for him. They have taken him off of the adovan to try and keep him from being so sedated right now and give him versed instead when he needs it to keep him calm. He has been awake a few times and has tried to pull the tube out himself a few times and has tried to sit up a couple times. He's opened his eyes and looked at me also a few times. I know he's doing a little better because he's fighting all the tubes and things. He held up his fingers to show me if he was in pain when I asked him and he said yes by holding up 2 fingers. The chest tube for drainage is still in and hopefuly will be able to come out soon, that will make it easier for Justin to breath. It hurts to breath with that in his chest.His AFP level came back today and it is down by half, which is EXCELLENT. The doctors said it should even be lower next week. We still have a hard time to go yet but today was much better. I was so happy to see Justin fighting and opening his eyes. Hopefully tomorrow will be even better.They have drawn cultures to see if anything grows from them to see why he might be running a fever. Hopefully it doesn't go any higher. It was around 102-103 all day. Won't know about the cultures for a few days.

Tuesday, July 09, 2002 at 09:35 PM (CDT)

Well Justin had lung surgery Monday and they also put in a new hickman catheter. They removed 4 tumors off of his left lung. The one was quite big in size and was actually 3 small ones clustered together. The big one was starting to attach to the outside lining of the heart, but they removed it with no problems to the heart. It was also quite mushy and not hard which means it was starting to die off which is good. They had to take a chunk of the lung but they don't feel that it will cause any problems for him later on. He had to recieve platelets and blood through out the operation. He went into surgery around 8:30am and was out by 12:00-12:30pm. His liver numbers after the operation were a little high so he had to have a liver biopsy around 5:30pm. They have Justin on antibiotics and fentanyl and Adovan for pain and to keep him quite and resting for the night. They said they will try and take the breathing tube out on Tuesday. Chuck left to go home to NY around 6:15pm. He arrived safely and was very tired.

Justin was still quite sedated today and started running a temp. around 100 this morning. Dr. Casas ordered another antibiotic for him to be on. They changed his hickman bandage and that looked good. They had to put a catheter in today to help him go pee since he was able to go on his own. They stopped giving him Adovan this morning to help try and get him awake but he was still quite sedated so then early in the afternoon they also stopped giving him the Fentanyl. His temp. went up and down all day. Around 5:30pm he started waking up. They went ahead and took out the breathing tube. Justin was breathing very hard and fast and his heart rate went up, his resperations were quite high, his blood pressure went up and he was having a really hard time breathing on his own. They then had to put the breathing tube back in since he was unable to breath on his own. He only opened his eyes once to see me and said Mommy. They had to sedate him again with the Adovan and Fentanyl to try and give him anohter restful night. They did a chest x-ray and that showed that his left lung had collapsed. They think it was from trying to work so hard to breath on his own. He still has the chest tube in for drainage from the surgery also. They worked with him for quite a while to try and help him breath on his own before putting the breathing tube back in. He had another rough day. They are going to try again tomorrow and see how he does maybe. They will decide after they do another chest x-ray in the morning. Hopefully tomorrow will be a better day. The biopsy only showed the liver had a little bit of fat on it, they said probablly from the TPN. Hopefully he will be off of that soon. No infection or rejection with the liver.

We had a great time home and loved our picnic and seeing everyone. Thank you all. Justin loved showing everyone his alligator head that Jill had sent him from Florida. Will add some pictures of the picnic soon to the web page. Thank you to my cousin for our beautiful book of Justins web page and guest book. WE LOVED IT!!

Friday, June 28, 2002 at 09:05 AM (CDT)

Well the past few days Justin has done great. He no longer has a temp. and he's had to have one transfusion of platelets and they are starting to take him off of his pain meds and some of the antibiotics slowly. His mouth is doing a lot better and his white count is starting to come up. He is still getting his neupogen shot. He has to have a transfusion of platelets again today. We might be able to get released soon since his white counts are coming up and he's looking better and feeling better. He still has no appetite right now but hopefully that will return soon. He's doing so much better. Now we just have to wait and see what the next treatment will be, until then we are going enjoy every moment we can. More tomorrow. Chuck should be here tomorrow in the early afternoon sometime. Eric is going to enjoy a weekend with his Uncle Mark and Kaitlin will enjoy her weekend with her grandma and grandpa cummings. She will be swimming like a fish all weekend long. Miss them a lot but hopefully we will be home soon for a short visit again.

Tuesday, June 25, 2002 at 09:46 AM (CDT)

Well sunday night was another bad night. Justin's temp was 103.8 and his heart rate was high and his blood pressure dropped again. They had to give him three boluses of fluid and tylenol. They did and x-ray, that looked about the same as the one done last Tuesday. His temp., heart rate and blood pressure went up and down all night.

Monday his temp. finally broke and ran around 99 to 100 through the day. His heart rate and blood pressure we're good for the day. They put him on two antibiotics and anti-fungals. He is still on his neubane for the pain in his mouth and throat.Last night his temp went up to 101 once and they gave him tylenol and he was okay for the night.

This morning Justin woke up with a temp. of 102.2. They have given him some more tylenol and some zofran since he's gotten sick to his stomach already once this morning. His heart rate is a little high and his oxygen level is low. He is having pain still in his throat and mouth. He might have to recieve a transfusion of platelets again today and possibly a blood transfusion. He still has no white cells to fight any infection away and his other counts continue to be low also. They are taking a long time to come back this time. This is not a good sign. They might change the one antibiotic for fungal to daily instead of every other day. He truly doesn't feel well right now. Hopefully his counts will start to come back soon.

Sunday, June 23, 2002 at 02:38 PM (CDT)

Yesterday Justin was in a lot of pain with mouth sores in his mouth and his throat. They are really raw!! The doctors put him on a continous drip of neubane for the pain. He has no white cells and his other counts are really low also. He had to recieve some platelets yesterday also. He slept a lot and when he was awake he was in pain from the mouth sores. Last night his temp. went up to 102 and stayed high most of the night. His heart rate was also high.

This morning he woke up with still a high temp. and then it ranged around 98.8 to 100 most of the day. He still has no white cells to fight off any infection at all and his other counts are still low. He's recieving platelets again today. It's taking longer for his counts to climb back up again, which isn't good. His right lung is still decreased, so the doctors put him on a percussor and his spirometer treatment and that seems to help a little. He still has the fluid under his right lung also.

Chuck left a little while ago to head home to Eric and kaitlin. They have one more half day of school tomorrow and then they have summer vacation.

Justin has been laying resting quietly most of the day. It hurts too much to talk for him right now and he just doesn't feel well at all. Hopefully his counts will start to recover soon so his mouth will heal. The mouth sores are from the chemo.

Thank you all, for your support!!!

Friday, June 21, 2002 at 09:33 PM (CDT)

Justin woke up with a fever again this morning of 101 and wasn't feeling very well. His throat is very sore and the inside of his mouth with sores from the chemo. They gave him tylenol for the fever. Then he had a very bad headache. As the morning went on he was feeling a little better. They ordered him a special mouth wash to help with the mouth sores.

Chuck arrived around 12 noon. Justin was doing better by then. Still had a low grade temp that went up and down all day. They drew more blood cultures off of his hickman lines.

Chuck and I had a meeting with some of the doctors today. Justin has 7 tumors on his lungs total. Three on one side and four on the other, they are all pretty big. We talked about a different chemo to use and also about another lung surgery after the 3rd round of chemo. Dr. Dunn is going to talk about Justin with the tumor board in two weeks and let us know the final decision.

This was a very hard day on Chuck and I. I did a lot of crying through the meeting and Chuck had a very hard time also. We haven't had to make such hard decisions. We've made many tough ones but they are getting harder and harder. I feel so numb. These past few days I've done nothing but cry and it's getting harder and harder to hold it together. My heart just aches. These are decisions that Chuck and I as Justins parents will have to live with for the rest of our lives. I just hope and pray we are making the right ones.

Justin's counts are still very very low. His white count is only 0.1 still and his platelets are still low. I'm sure we will have to have platelets in the next few days or so. They put him back on his oral meds tonight. He didn't do very well with them. He got sick with the first few, so they had to order more because it was his anti-rejection drug.

My other son Eric goes to see a neurologist this next week about the cyst on his brain and his headaches. My parents are taking him to the appointment. I have given them a list of questions and things that I would liked checked. They have to take him to horseheads for the appointment. Chuck and I feel better that we are finally getting that checked into further. Kaitlin is doing okay. They are having a very hard time right now and I worry about them, especially now that school will be out after monday. I miss them awful and they miss us. They have a lot to deal with too!!!

Chuck is staying with Justin and I'm at the McDonalsd house to get some rest, so i guess I'll do that now. Bye for now.

Thursday, June 20, 2002 at 07:20 PM (CDT)

Today Justin has moved from the ICU unit to the bone marrow unit. He is doing a little better. His temp is down a little and is low grade now. His white count is almost nothing,it's 0.1 and it should range between 3.6 to 11.5. He is very neutropenic right now. He is still feeling a little sick to his stomach but not like the last couple days. His liver enzymes are starting to come down a little which is good. He had to recieve more blood again today and his platelets are still low. Might end up getting platelets again either tomorrow or the next day.
Justin was very happy to be moved out of the ICU unit and into a room on the floor. His throat is still red and sore and he still has some sores in his mouth. He's been sucking on a lot of ice pops. I will have to go get him more tomorrow since they will be gone soon and they take a while to freeze.
Chuck took the day off tomorrow to come down. He will be here in the morning some time. Justin really wanted him to be here and so did I. These past few days have been very stressful. I really need Chuck to talk with doctors about the next step. I'm feeling a little drained and need him to deal with it for a day. After I get some rest this weekend I will be able to deal with more. There are some days I don't want anyone, but other days when I need someone.
I really miss Jill. We use to talk a lot and we understood each other and could talk freely on our feelings and about our kids. Jill has been such a great friend to me!!!
We still talk a lot on the computer and on the phone every now and then.
Justin has been put back on a regular diet and is slowly starting to go back onto his oral meds.
Thank you everyone for your support and prayers. We truly need them.

Wednesday, June 19, 2002 at 06:58 PM (CDT)

Well last night was awful!!! Justin started running a temp. and it jumped really high in a very short time. Called the doctor and then took him to the E.R.. They got us right in a room. His temp. reached 104 and he was sick to his stomach and had pain in his left side. They did and x-ray and that showed his one lung was again decreased and he had some fluid. His blood pressure dropped really low and he was put in oxygen. They did some labs off his hickman lines and one from his arm. We were in the E.R. until 5am this morning and then moved to the I.C.U. unit.
He was put on three different antibiotics and today they changed one of them to a different one that should be more affective. They are still unsure what is wrong. His counts are very,very low and that might be one of the reasons.
He had to recieve blood and platelets today and had to have a CT scan of his chest and abdomen. The CT scan showed there are more nodules (tumors) on his lungs. Three more and the other ones have grown in size. The new ones are also quite big in size.
This news ripped me up!!! This is showing that the chemo is not working. I look at Justin and think what a fighter he is and what he has to go through every day and how strong he is. THIS JUST ISN'T FAIR!!!!!!!! I hope and pray that we find a chemo soon that will work.
Please say a prayer for Justin. He really needs all the prayers he can get at this time. PLEASE.
Doesn't look like we'll be home this weekend. We are still in the ICU. He is doing better tonight. Still has oxygen and antibiotics running along with his TPN. They are watching his blood pressure and vitals closely still. His throat is raw and hurts very badly, but a strep culture came back negative. He is still feeling a little sick to his stomach and was unable to take his anti-rejection meds today. He is very tired.
I'm exhausted and so drained. I can't wait for Chuck to get here this weekend so I can get some rest. I'm going to miss seeing the other kids this weekend, they will have to stay with my parents again this weekend. This is so hard on them, they worry awful about their brother and miss us. Will update again tomorrow.

Monday, June 17, 2002 at 11:41 PM (CDT)

Hi everyone. This morning Justin woke up happy and hungry. He took his meds and wanted me to go to McDonalds to get him sausage and pancakes for breakfast with some orange juice. When I got back he ate 2 sausage and a little pancake. He was really hungry. Then after a few minutes he got sick to his stomach. NOT GOOD!! His counts have dropped quite low. His white count is only 1.3 right now so no visitors right now. We have to be very careful because he can get sick very easy. The one liver enzyme is still a little high but coming down slowly.

The oncology doctors and the liver transplant doctors got together today and came back and said we could be released and stay over at the McDonald house till the end of the week. We are staying in the area to see if Justin starts with a fever when his counts are so low and still dropping.

Wednesday we have to go for blood work and then again on Friday and have a CT scan on Friday also. Then if every thing is okay we will be able to go home on Saturday.They are going to draw his AFP level again on Wednesday. I really hope it's lower and good news. I hate the waiting!! I can only hope and pray Justin will beat this. It's the most awful feeling not being able to control this.

We got at the McDonald house around 5:30pm. Justin tried some applesauce and some soup for dinner. We are able to eat in our room at this moment becuase Justin isn't able to be around people right now because of his counts being so low. Justin talked with me on the walkie talkies while I got us something to eat in the kitchen. He loves the walkie talkies!!!

Justin's supplies came for his TPN. I hooked him up after his 8pm meds and then around 10:30pm we had a problem with the pump, so I had to call the company and change all the tubing and fiddle with it for a while. That's why I'm still up. Now I'm all wound up and can't fall asleep.I will after this is all typed though.

Justin is sleeping so soundly. I love to watch him sleep. He's such a handsome little guy!! Well that's all for now, have to go to the hospital in the morning to get his supplies for his neupogen shots that have been ordered and are coming tomorrow. Also have to talk with the transplant doctors . Take care everyone and we hope we are home this weekend. We miss Eric and Kaitlin, Justins brother and sister and Chuck, Justins dad. They have had it hard this year and have had to endure a lot. You'll see them in the photo album soon. They look just like Justin. My three red headed ANGELS.

Bye for now. More tomorrow.

Sunday, June 16, 2002 at 06:35 PM (CDT)

Hi, Well Saturday Justin woke up with a low grade temp. but did better as the day went on. Still felt a little sick to his stomach. Chuck arrived around 11am. The kids stayed at my parents house for the weekend since Justin didn't feel well and his counts are dropping. Justin was doing a lot better when Chuck was here.

Today he woke up wanting sausage and pancakes from McDonalds. He ate a sausage and a half and a bite of a pancake. His counts have dropped even lower today. His white count is only 1.7. He is still recieving antibiotics and his TPN (food bag). His daily meds are going down much easier. Justin and his dad had a nice fathers day together. They watched a movie together that he gave his dad for fathers day (Kelly's Hero's).Chuck left around 3:30-4:00pm for home. It's a 31/2 to 4 hour drive for him. He should get home around 7-8pm. The kids at home have their fathers day gifts for him and my parents are bringing him dinner. If Justin doesn't run a fever by next weekend we might be able to go home again for a while. I really hope this chemo works and drops his AFP level. I'm really worried!!!! Maybe by wednesday we'll have an idea or it might take a week or two. The waiting is awful!! Justin is going to have curly fries for dinner from Arby's. He's put his order in for the night. I have some more pictures to add to the photo album soon as I figure out how to get them there, I'm still learning, but I'll get it soon.

HAPPY FATHERS DAY!!!!

Justin and Mary

Friday, June 14, 2002 at 04:06 PM (CDT)

Justin woke up this morning quite sick to his stomach and with a fever. He also had a really bad headache. The doctors came in and ordered a CT scan for today. Justin was only able to take only his anti-rejection drugs he needed and was unable to take his other meds because he was to sick to his stomach. His face is still swollen today, not quite as bad though. He slept from around 10am to 2:30pm. Then he went for his CT scan of his head. The doctors came back and said that it looked okay, no problems. His one liver enzyme (ggt) has gone back up, his alt (another liver enzyme) is still a little high and his ast ( liver enzyme ) is normal which is good. Unfortuntley his AFP has gone up since the last one after the last chemo,this shows if the cancer is growing or not. The one test came back from his liver biopsy and he doesn't have the virus cmv, which is good. Justin got his lego's in the mail today that his Grandpa and Grandma Cummings ordered him, so that made him feel a lot better. He has a lot of lego's but we don't mind because it's the only thing that he enjoys to do while he sits in the hospital. If it makes him happy and brings a smile on his face thats all that matters. Justin's temp has started to come down and he's feeling a little better but his headache is starting to come back. He still feels sick to his stomach and is unable to eat at the moment. It's been a rainy day here today.

Thursday, June 13, 2002 at 06:06 PM (CDT)

Yesterday Justin had an x-ray and that came back okay. The biopsy came back with a viral infection and the doctors put him on an antibiotic I.V. until they find out what exactly it is. They sent some cultures out and hopefully we will know soon. They didn't start his chemo until late afternoon because his urine showed a trace of blood in it. Then they started his chemo after consulting with the doctors. When the first chemo (cytoxen) was almost finished Justin broke out in a rash and started to swell in his face a little bit. They gave him some benadryl and a steriod to try and calm it. Then he started vomiting and getting quite sick. After about an half an hour they started the second chemo (adrymiacin). Justin continued to get sick to his stomach and they gave him some zofran to help that. After about an hour or so he started to break out again and his face swelled up really bad. It was so swollen that I couldn't see his eyes and his lips were swollen and his WHOLE face, even under his chin. He was also very, very sick to his stomach. They gave him more benadryl and some more steriods. It took quite a while for it to calm down even a little bit. He finally fell asleep around 2am or so. This morning he woke up still feeling sick to his stomach and it was quite hard getting his morning meds down. His face is still swollen but not quite as bad. Today he slept most of the day until around 2-2:30pm. They the rest of the day he layed and watched some T.V.. He hasn't been able to eat anything since yesterday afternoon. Tonight he's playing spiderman on his playstation that Zack gave him. His face is getting a little red and his cheeks are looking a little puffy again tonight. I hope he doesn't have another bad night again like last night. Justin says hi to everyone and wishes he was home. He also wants to say thank you to everyone for signing his guest book. My cousin Robin has been printing out his guest book enties for us and we are going to make a special book of them all for Justin to keep. Thanks Robin we really appreciate it.

Wednesday, June 12, 2002 at 08:14 AM (CDT)

Sorry it's been a while since we updated. We have been so busy. Justin was able to go home for a little while and spend some time with family and friends. He had a wonderful time home. He went fishing and enjoyed playing with his brother and sister. Justin had to be re-admitted yesterday and have a biopsy done on his liver because his liver enzymes were high. They are also getting him ready for his second round of chemo. He might have to have a few tests today before the chemo starts. Since we have been back his right lung has decreased and he will have to have an x-ray to make sure nothing is going on there. Coming back was really hard for Justin. The thought of sitting back in the hospital was hard for him after enjoying home. Also if you don't already know Justin lost his good friend Zachary. Zachary passed away after we left and had gone home. Jill his mom is the one who had set this web page up for us and we miss them tremondously!!!!!! Justin will always have Zack in his heart. I would like to say a huge thank you to Jill and Zack for touching our lives and let them know they will always be in our hearts and we miss them both.

Monday, May 27, 2002 at 08:22 AM (CDT)

Friday Justin had a good day and was excited that daddy was coming down. He really misses his brother and sister since they haven't been able to come down because his counts are to low. Saturday he was doing okay until the evening around 9 pm when he started to run a small temp.. The temp. went up during the night and he wasn't feeling well at all. It was a long night. They put him back on another antibiotic and did a chest x-ray on sunday. The temp. was better sunday morning and went back to normal. He's not really eating yet because he's still feeling a little sick. They cut back on his TPN (food bag) to see if his appetite would get better. The x-ray came back looking good. This morning Justin woke up with a headache and another low-grade temp. Took his morning meds but felt a little sick to his stomach. He didn't get sick though which is good. They gave him some tylenol for his headache and then he fell back to sleep. Hope he's not getting any thing to make him sick again. He's being featured in June on hugs and hope if you would like to see it you can go to http://www.hugsandhope.com/justinbupdates.htm . Hope today goes well. His dad went home on Sunday and he's already missing him as well as me. We both miss our home very much.

Friday, May 24, 2002 at 02:28 PM (CDT)

Hi Everyone, Today Justin is doing okay. He woke up this morning not feeling real perky. Then he had an upset stomach but then was okay for the day. It's been a frustrating day waiting for his AFP level to come back. We still haven't recieved it yet today. Justin was very tired today and slept most of the day. He's not running a fever which is really good. He's back on his oral meds and not quite so many I.V. meds. He started to loose his hair again the other day and this morning we had to get the clippers out and clip what was left of it. Uncle Dean shaved his head again so him and Justn would be twins again. Justin's white count is coming up a little bit again and his liver enzymes are looking really good. Hopefully we'll be making a trip home soon.

Wednesday, May 22, 2002 at 10:31 PM (CDT)

Hi, Well today Justin is doing great. His counts are starting to come up and his liver enzymes are doing much better. No new tests today. He isn't running a temp. and all his vitals are good. He was on the treadmill today and very active. His friend Zack on this same floor is from florida. A big thank you to his mom who help us set this web page up for us. She is great!! Zack is a wonderful kid who loves sponge bob. Justin has now started to also like sponge bob. If Justin continues to do well we are hoping to be home soon.

Wednesday, May 22, 2002 at 09:08 PM (CDT)

This is for you Justin,Mary and family.

Click here to go back to the main page.

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