Journal History

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Monday, September 5, 2005 12:32 AM CDT

God saw you getting tired


and a cure was not to be,


so he put his arms around you,


and whispered "Come to me".




With tearful eyes we watched you,


and saw you pass away.


Although we loved you dearly,


we could not make you stay.




A golden heart stopped beating,


hard working hands at rest,


God broke our hearts to prove to us


He only takes the best.

Sunday, August 21, 2005 8:56 PM CDT

I hurt...

Tuesday, July 19, 2005 0:00 AM CDT

T
R
E
Y



Happy Birthday to YOU!!!!

Happy Birthday to YOU!!!!

Happy Birthday Dear TREY!!!!!!

Happy Birthday to YOU!!!!!!!!!!!!!!!!!!!!!!!!!!



Happy 7th Birthday Pumpkin Pie!!!!!!!

I know you're probably not celebrating your birthday up in heaven. I can't see why you would, but It's still so very special to mom!! I ordered you a cake... so what if you can't eat it. I did it cause I know you'd want it if you were here.

Do you remember that time we bought you a Yu-Gi-Oh birthday cake even though it wasn't your birthday? We have pictures and even sang and everything!!!!!

I love you buddy!!!!

Happy Birthday!!!!!!!

Mommy

Friday, July 8, 2005 12:57 AM CDT

I apologize for not having updated sooner.

Things here are difficult.

Why is it just when you begin to think you're going to be O.K., that things want to come crashing down again? I try so hard to remain strong. I know Trey would want me to stay strong, but I feel like a complete failure.

I want to do so much in honor of Trey. I want everyone to know his name. I do not want him to be the little boy that lost his life to cancer. He is much more than that and I feel like that is all he is remembered by.

I think of things to do in his name, ways to help other children with neuroblastoma, ways to bring about the awareness. I think of different things to bring to the hospital for the children that are there. I think of all these things I want to do, because of Trey and for Trey. However, I've yet to do them. In more ways than just those I feel like I'm failing my baby boy.

Trey was so good about making promise on his intentions... be they good or not... he did what he said and he tried what he planned. When an idea entered his mind, he did not hesitate. If he told me he was going to race me he would already be halfway to the door. If he told me he was going to build a lemonade stand by himself, by golly when we got home he was outside with the hammer and nails and did not come in until he had his stand built...it may have been wobbly and may not have been perfect, but he did what he said and it still sits in the yard. He had accomplished so much by doing what he said.

I wish I could do the same. I wanted so desperately to post another story about Trey. I have thought of stories to post, things he did that still make me smile, things that had me rolling in the floor ~ however when it comes to putting them in words, they do not do him justice. I know I said I would post more stories, but it's just another one of those "failures" I'm dealing with... ..... (Wow, and boy do I have a list of them... No, I didn't write them down..., I've done that once..., it’s really depressing..., don’t ever do it.

The past three weeks have not been good. Sleep comes randomly, but it's O.K. as I'm learning not to like it much anymore. When I go to sleep I get to wake up and become reminded of the realities all over again. This happens EVERYTIME I fall asleep, even if it's in the middle of the day for 15 minutes.

Rarely as it comes I love so very much to dream of my baby, but when I wake up and realize it was a dream my insides collapse. The pain starts to swell from within and I cry over missing Trey, realizing I will miss him forever as long as I'm here on this Earth.

Sometimes I want to go be with him.
Sometimes I want it so bad.

I try to keep focus on knowing that my life is a gift from GOD and I better respect that. I have been told this enough, so, yes, I do know this. However, I question, if life is a gift then what is death? If Trey is happier and in a better place shouldn't death be considered the gift? Then what is life again? Also a gift? Yet death is the greater gift? I could go on as my questions grow. I know these are questions so many people do not like to face. Neither do I. I absolutely hate having to face death everday of my life. Unfortunately, this is my reality.


Yes, it does suck.




Okay, I could go on about so much now so let me stop. I know I'm starting to ramble.



I love you God.


I love you Trey

---Hey buddy I did as you always told me---

“Mama, you’re supposed to love God first”


Goodnight,


Misty

Monday, June 6, 2005 8:31 AM CDT

Yesterday, I drove to my dad's house to bring Kaiden so that he could spend the night. On the way down there I really got the thinking about Trey, as I always do. Mostly I end up in tears, sometimes it's so bad I must pull off the road to calm myself down before I end up having a wreck. However, yesterday was not like that. I just thought of Trey and then of his name specifically. "Trey"~ isn't that just a wonderful name? It fits him to a tee. I had wanted to name him Jacob when he was born or maybe Preston, but now I'm so glad I didn't. Those names now seem too calm. Trey wasn't calm at all=) He was wide open...all the time. Maybe not so much after diagnosis, but between 0 and 4, Trey NEVER stopped. He always wanted to go and do and be outside and play. He loved to play. His imagination was phenomenal. I remember once when he was just 2 he was sitting on the toilet and he yelled for me to come in the bathroom. I walked in and as he was sitting there still, he leaned his body forward, pulled the lid down on his back, and said "hey, I'm a turtle" He looked so cute and turtle-like sitting there and I couldn't believe how he just come up with that.

Not only was his imagination phenomenal, but his memory was unbelievable! He could tell you everything that happened to him day by day if you asked. I know that seems exaggerated, but truly it's not. Sometimes out of nowhere he would bring up incidences when he was three years old and he would recall a conversation that the two of us had had. At six years old, he could remember conversations he had with you when he was three!! Like I said, his memory was unbelievable.

Everything about Trey was unbelievable!

He was so smart, and funny, and courageous, and tough, and tenderhearted, and even conniving. I'm smiling now as I remember when he started not feeling too well, I would let him take his dinner in his room to eat. He knew he couldn't get dessert until he finished his dinner and it would upset him some days when I told him he didn't eat enough "real food". Finally a couple of days passed and it seemed like Trey's appetite was huge. He would take his dinner in his room and reappear in the kitchen with a nearly empty plate and say "mmm... mom that was good...you make the best macaroni ever". Sometimes he would even ask for seconds. After a day or so of his eating like a piggy I decided to check his room to see if he was hiding his food. I checked and found nothing. I told Trey "I'm sorry pumpkin, but mommy just can't believe you're eating so well" He says to me..."I can't help it, I'm hungry ... you remember, you make the best macaroni ever." I smiled at him and walked out of the room. Well the VERY NEXT DAY I fixed Trey his dinner first because he wanted leftovers from the night before. While Trey was "eating" Jason and I were outside picking stuff up off the deck when all of a sudden we saw something go flying through the sky. We looked up...and then Jason walked over to what we thought might have been a bird and found a pork chop!!! What the??? About that time, heads up...here comes my "best macaroni ever" flying out of Trey's window. Sure enough Trey had been opening his window and tossing his food the whole time!!

There are so many many stories I could tell of Trey. I may start telling them all here. I feel like I don't get to talk about him as often as I want during the day. I do however, talk to him constantly and I don't care how crazy that makes me. Sometimes I wonder if I truly believe he's here still. I think sometimes I do, but for now that's how I cope. I miss him terribly; I miss him more each day. No one ever told me, that the yearning for you child only gets worse everyday. Sure the pain is somewhat different now, but the yearning for him has grown in huge amounts. I just want him back ~ even if it's just for a hug, a kiss or just a quick glimpse. I miss you Trey, God I miss you baby. I love you so much.

Mommy

Wednesday, May 11, 2005 10:52 PM CDT

Thank you everyone for your wishes on Mother's Day. It certainly wasn't an easy day. None of them are.

I went to Hallmark last week to pick Mother's Day cards for my mom, stepmom and Jason's mom. I usually end up in the store for an hour trying to pick out the exact cards that truly express the things that I want to convey.

I didn't even think that picking a card might bother me until it was too late. I had already walked in and picked up the first card to read. Before I was halfway through, things hit me like a ton of bricks.

Here I was reading these beautiful things on a card for my mom, things I longed to hear from Trey..... the feelings, the thoughts, the pain from missing him, they rushed in soooo fast.

I did not make it through that card before I was a complete mess.... fast breathing, jaws clenched,..."Oh God I miss Trey", tears falling off my cheeks.

Going in there to pick a card was something I certainly should not have done.

But now it is over, just another day I have survived.
Another day without my beautiful baby boy.

The pain is so immense. I can't even see what I'm typing now, so I guess this will become another one of my unfinished journal entries.

Sorry,

but first I want to paste a poem on here that was sent to me through email from a very wonderful person!!
Thanks Toni!!



“I Remember”




I remember the day I gave birth to you
I remember the sweetness of a child so new

I remember our love and “special” talk
I remember your smile, your scent, your walk

I remember the days of watching you grow
I remember when I taught you to tie a bow

I remember all of the things that you held dear
Yes I remember those things so very clear

I try to remember why I had to set you free
But this one thing is so hard for me

Because deep within a Mother’s heart
Is a piece of her child with which she can’t part

I love you, I miss you, and I promise you this
Some day my sweet child we’ll again share a kiss.


I love you Trey!!! You will forever be mommy's baby boy!!
We'll always be TEAMMATES!!!

Sunday, May 2, 2005 4:37 PM CST

I apologize for not leaving updates lately. I have wanted to badly, but when it comes to writing my emotions it is so difficult. I guess there are no words that could adequately describe what I feel. I don't think those words exist. I miss my baby tremendously, and if you can imagine a small part of the pain of living without your precious baby boy (or girl) then you're still nowhere close to ever knowing.

Sorry for my saddening entry.

Tonight I hurt.

I miss you pumpkin!!! !!!! !!!!! !!!! !!!!
!!!!! !!!! !!!! !!!!!!! !!!!! !!
!!!!! !!!! !!!! !!!!!!! !!!!! !!
!!!!! !!!! !!!! !!!!!!! !!!!! !!
!!!!! !!!! !!!! !!!!!!! !!!!! !!

MARCH 27, 2005


It has been so long since I last updated. I have tried quite a few times to update but never make it very far without flooding the keys. The other day marked three horrible months without my baby. I miss him so much. I woke up and literally cried all day long. I found myself sitting on the floor of his room sobbing in total disbelief of the reality. I still can't believe he's not here with me. We went to the cemetery to bring lots of Easter stuff. I think I did O.K. I only broke down once. I know I need to go by myself one day so that I can let a lot out of me. I don't know what good it will do, because I'll still miss my baby more than imaginable!!!

To everyone that ordered and are displaying th NB car magnets, Thanks so much. I'm so glad we're getting the awareness out there!! I have learned of so many kids in the past two weeks that have Neuroblastoma, It is so devastating!! Some of you sent in extra to donate to NB research. I will be making the donation in about three weeks on the behalf of Trey and other angels and warriors still fighting this disease. I'lll post the information on that later.

Meanwhile, I have tried to go back to work. It is becoming increasingly difficult, as I am slowly losing any motivation to get out of bed. I don't know if depression is creeping in or what... I know that I have gone from mostly happy days with some sad ones to mostly sad days with some happy ones. As a matter of fact, I can't remember the last happy one. It seems like it's all I can do to get Kaiden fed and changed. I was recommended to counceling with which I had much resistance, I've finally decided I may actually need to talk to someone. Unfortunatly, I'm not scheduled to begin for another two or three weeks. I know I need to get myself in gear, but I just can't. Physically, emotionally, mentally I can't. I've been told by my work that they've given me enough time to adjust. I don't want to get into how that made me feel, but I can promise everyone, in a lifetime...I will still be grieving and I will never fully adjust. My whole world fell apart December 22, 2004 and itwill never be put back together again. I will forever have a broken heart and there is nothing that can change that. (((That's why I've been reluctant to any type of counceling...I don't see how anyone anyway can possibly make my pain any less and help me through this. There is no getting through this or over this... I lost my baby and that's the way it is and I will always feel this pain and forever have a HUGE hole in my heart))))

I wish there were some bright things to say and I wish I had a more positive spin on things, but things just don't look very positive to me anymore. They're very grey and just BLAH without Trey.

^^-----I wrote most of the above the other day and hadn't posted it----^^
____________________________________________________________



Today is EASTER!!!!

~~~~Happy Easter Trey~~~

Mommy knows you're in heaven, but the Easter Bunny still came to see you. You got a great basket with a lot of cool stuff I know you would love. Mommy loves you pumpkin!!! You'll always be "mommy's baby boy."

Thursday, March 3, 2005 4:46 AM CST

Good Morning Trey!!!

Again mommy's up early. It's been quite difficult to find a peaceful nights sleep since you went to Heaven. I know you are in a much better place now and are happier than you have ever been or could have ever dreamed to be. Still, I am selfish, and I want you here where I can hold you, touch you, kiss and hug you. I'm sorry for my tears. I just miss you so very much Trey. I miss your feel, your warmth, your smell ( even that yucky morning breathe), and your voice. I miss EVERYTHING so much it hurts so DEEP inside. I love you pumpkin pie, and yes, I know you love mommy too.



Saturday, February 19, 2005 4:27 PM CST



Have I told you all how much I truly love Trey? How he is/was my everything. The real only reason I would even bother to do anything. I loved him more than I could ever love any other human being in my whole entire life. How I never thought I would be able to face even one minute without him?

But here I am now....

The minutes have turned into hours..the hours into days and weeks and soon to be months. It's been difficult, but yet I've faced them. Sometimes I cried so hard I didn't think my eyes could open anymore, and then there were the times I found a way to laugh. There have been moments when my heart was so light as I've sat and spoken to Trey and then there have been times my heart became so heavy and my throat closed up to the point I didn't think I could breath.

I never thought I could go on without him, but I have. I do O.K. about it sometimes, but mostly I'm consumed with guilt. I feel like by moving on without Trey here that I"m leaving him behind. It hurts so much but I don't know what to do about it. I run around trying to stay so busy, without actually accomplishing too much. I think I'm scared to...there's little I want to do without him. I tell myself that I would want him to carry on if the tables were turned and I had passed, and I know he would, but it's just not the case for me. It's just so HARD. I think the times that I'm actually doing pretty good are the times when I'm in denial. I know Trey's been gone almost two months now, but there's part of me that still doesn't belive he's gone. When the realization starts to hit I'll get myself real busy again...doing nothing... so that I can "pretend" he's still at papa's or on a vacation. I know it sounds crazy and maybe I am crazy, but for now that's how I'm coping... otherwise I'd be on so much medication, I'd be a zombie.

Jason, again, is doing quite well. At least that's what it seems on the outside. He had been getting upset VERY easily over the last month, but I can tell now that he is starting to calm down. However, I don't think he is ready to accept the fact that Trey is really gone either. It is hard to explain. We lean on one another for support and he is always there when I need him. I have read a few times that a marriage becomes so strained after a loss of a child that it eventually dissolves. This is not the case for us. We are both dealing with this in different ways but at the same time we understand the others grieving.

Kaiden.. is where the strain comes in. It's funny though... he drives us up the wall but we love him so very much. He's still the biggest butterball I think I've ever see. He's also just beginning to teethe now too, so he's back to crying again....A LOT!!! He's up every hour or so during the night and is up most all of the day. Jason does really well with him, sometimes better than myself. We usually take turns in handing him off when he's in his crying spells. We've tried every teething ring and toy they make but nothing seems to help as much as his hand....which he ends up chomping on too hard and then he's crying from that. I know... soon things will be easier.

The NB magnets came in this week. I am so excited about it!!! They're not quite the colors I had expected, but still...I LOVE THEM. I know there are a couple of people that wanted to order some and I promise I'll be in touch in the next few days. If anyone else wants to order any..just email me, I have a lot of extras.

Thank you all for continuing to check in on us. It means so very much to me. Among everything that has taken place I have found SO much comfort in knowing that we are cared about so much. Sometimes when I am feeling horrible, I turn to Trey's guestbook. I promise it is one of the most uplifting feelings I have going here lately.

There is a poem another caringbridge mom left in Trey's guestbook and I really want to share it with you all.


My Mom is a survivor, or so I've heard it said.
But I hear her crying at night when all others are in bed.
I watch her lay awake at night and go to hold her hand.
She doesn't know I'm with her to help her understand.
But like the sands on the beach that never wash away...
I watch over my surviving mom, who thinks of me each day.
She wears a smile for others...a smile of disguise.
But through Heaven's door I see tears flowing from her eyes.
My mom tries to cope with death to keep my memory alive.
But anyone who knows her knows it is her way to survive.
As I watch over my surviving mom...through Heaven's open door.
I try to tell her that angels protect me forever more.
But I know that doesn't help her or ease the burden she bears.
So if you get a chance, go visit her...And show her that you care.
For no matter what she says...no matter what she feels.
My surviving mom has a broken heart that time won't ever heal~!



I'm also going to continue to have his favorites listed... I can't bear to take them off just yet. They are so much a part of my baby.


FAVORITES!!!

Color.............................Red
Name............................Trey
Numbers.......................10 and 24
Race Car.......................Jeff Gordon (24)
CareBear......................CheerBear
Cartoon.........................Many..Ed Edd and Eddy....Futurama...ScoobyDoo
Group...........................Hex Girls
T.V. Show.....................Full House
Resaurant.....................Ryan's and any chinese buffett
Game...........................Dueling with Yu-Gi-Oh cards
Museum.......................Children's Museum of Portsmouth (VA)
Song............................Complicated by Avril Lavigne AND Mockingbird song...sung by mama
Toy store......................Toy's R' Us and FAO Swartz (NYC)
Ride.............................Scooby-Doo roller coaster at King's Dominion
Ride #2 ....................... The Skyride at The Empire State Building
Park.............................Emerald Point in NC
Breakfast food...............SAUSAGE
Animal..........................Dog
Indoor activity................ART
Outdoor Acvtivity............Riding four wheelers....and WORKING
Collections....................Knives, guns, throwing stars, swords, and yugioh cards............ (the weapons really aren't as bad as it sounds)


Thanks so much for all your prayers!

Sherrie...thanks for the Valentine's!!

Christine, thanks for your call earlier. You really made my day!!!

Love
Misty
Trey's mommy and teammate forever!!!!!!!!!!!

Saturday, February 19, 2005 4:27 PM CST

Have I told you all how much I truly love Trey? How he is/was my everything. The real only reason I would even bother to do anything. I loved him more than I could ever love any other human being in my whole entire life. How I never thought I would be able to face even one minute without him?

But here I am now....

The minutes have turned into hours..the hours into days and weeks and soon to be months. It's been difficult, but yet I've faced them. Sometimes I cried so hard I didn't think my eyes could open anymore, and then there were the times I found a way to laugh. There have been moments when my heart was so light as I've sat and spoken to Trey and then there have been times my heart became so heavy and my throat closed up to the point I didn't think I could breath.

I never thought I could go on without him, but I have. I do O.K. about it sometimes, but mostly I'm consumed with guilt. I feel like by moving on without Trey here that I"m leaving him behind. It hurts so much but I don't know what to do about it. I run around trying to stay so busy, without actually accomplishing too much. I think I'm scared to...there's little I want to do without him. I tell myself that I would want him to carry on if the tables were turned and I had passed, and I know he would, but it's just not the case for me. It's just so HARD. I think the times that I'm actually doing pretty good are the times when I'm in denial. I know Trey's been gone almost two months now, but there's part of me that still doesn't belive he's gone. When the realization starts to hit I'll get myself real busy again...doing nothing... so that I can "pretend" he's still at papa's or on a vacation. I know it sounds crazy and maybe I am crazy, but for now that's how I'm coping... otherwise I'd be on so much medication, I'd be a zombie.

Jason, again, is doing quite well. At least that's what it seems on the outside. He had been getting upset VERY easily over the last month, but I can tell now that he is starting to calm down. However, I don't think he is ready to accept the fact that Trey is really gone either. It is hard to explain. We lean on one another for support and he is always there when I need him. I have read a few times that a marriage becomes so strained after a loss of a child that it eventually dissolves. This is not the case for us. We are both dealing with this in different ways but at the same time we understand the others grieving.

Kaiden.. is where the strain comes in. It's funny though... he drives us up the wall but we love him so very much. He's still the biggest butterball I think I've ever see. He's also just beginning to teethe now too, so he's back to crying again....A LOT!!! He's up every hour or so during the night and is up most all of the day. Jason does really well with him, sometimes better than myself. We usually take turns in handing him off when he's in his crying spells. We've tried every teething ring and toy they make but nothing seems to help as much as his hand....which he ends up chomping on too hard and then he's crying from that. I know... soon things will be easier.

The NB magnets came in this week. I am so excited about it!!! They're not quite the colors I had expected, but still...I LOVE THEM. I know there are a couple of people that wanted to order some and I promise I'll be in touch in the next few days. If anyone else wants to order any..just email me, I have a lot of extras.

Thank you all for continuing to check in on us. It means so very much to me. Among everything that has taken place I have found SO much comfort in knowing that we are cared about so much. Sometimes when I am feeling horrible, I turn to Trey's guestbook. I promise it is one of the most uplifting feelings I have going here lately.

There is a poem another caringbridge mom left in Trey's guestbook and I really want to share it with you all.


My Mom is a survivor, or so I've heard it said.
But I hear her crying at night when all others are in bed.
I watch her lay awake at night and go to hold her hand.
She doesn't know I'm with her to help her understand.
But like the sands on the beach that never wash away...
I watch over my surviving mom, who thinks of me each day.
She wears a smile for others...a smile of disguise.
But through Heaven's door I see tears flowing from her eyes.
My mom tries to cope with death to keep my memory alive.
But anyone who knows her knows it is her way to survive.
As I watch over my surviving mom...through Heaven's open door.
I try to tell her that angels protect me forever more.
But I know that doesn't help her or ease the burden she bears.
So if you get a chance, go visit her...And show her that you care.
For no matter what she says...no matter what she feels.
My surviving mom has a broken heart that time won't ever heal~!



I'm also going to continue to have his favorites listed... I can't bear to take them off just yet. They are so much a part of my baby.


FAVORITES!!!

Color.............................Red
Name............................Trey
Numbers.......................10 and 24
Race Car.......................Jeff Gordon (24)
CareBear......................CheerBear
Cartoon.........................Many..Ed Edd and Eddy....Futurama...ScoobyDoo
Group...........................Hex Girls
T.V. Show.....................Full House
Resaurant.....................Ryan's and any chinese buffett
Game...........................Dueling with Yu-Gi-Oh cards
Museum.......................Children's Museum of Portsmouth (VA)
Song............................Complicated by Avril Lavigne AND Mockingbird song...sung by mama
Toy store......................Toy's R' Us and FAO Swartz (NYC)
Ride.............................Scooby-Doo roller coaster at King's Dominion
Ride #2 ....................... The Skyride at The Empire State Building
Park.............................Emerald Point in NC
Breakfast food...............SAUSAGE
Animal..........................Dog
Indoor activity................ART
Outdoor Acvtivity............Riding four wheelers....and WORKING
Collections....................Knives, guns, throwing stars, swords, and yugioh cards............ (the weapons really aren't as bad as it sounds)


Thanks so much for all your prayers!

Sherrie...thanks for the Valentine's!!

Christine, thanks for your call earlier. You really made my day!!!

Love
Misty
Trey's mommy and teammate forever!!!

Tuesday, February 8, 2005 9:39 PM CST

FAVORITES!!!

Color.............................Red
Name............................Trey
Numbers.......................10 and 24
Race Car.......................Jeff Gordon (24)
CareBear......................CheerBear
Cartoon.........................Many..Ed Edd and Eddy....Futurama...ScoobyDoo
Group...........................Hex Girls
T.V. Show.....................Full House
Resaurant.....................Ryan's and any chinese buffett
Game...........................Dueling with Yu-Gi-Oh cards
Museum.......................Children's Museum of Portsmouth (VA)
Song............................Complicated by Avril Lavigne AND Mockingbird song...sung by mama
Toy store......................Toy's R' Us and FAO Swartz (NYC)
Ride.............................Scooby-Doo roller coaster at King's Dominion
Ride #2 ....................... The Skyride at The Empire State Building
Park.............................Emerald Point in NC
Breakfast food...............SAUSAGE
Animal..........................Dog
Indoor activity................ART
Outdoor Acvtivity............Riding four wheelers....and WORKING
Collections....................Knives, guns, throwing stars, swords, and yugioh cards............ (the weapons really aren't as bad as it sounds)

I know there are many many other things among Trey's favorites that I haven't mentioned but again I'm sure in time I will do so.

Things around here are still far from normal. However, I did go back to work last week. I did O.K. the first night, but then it all went downhill. All night long I kept thinking of Trey. I kept remembering the last time I was at work and how everone would ask about him. Trey was still here then and that's all I could think about. It didn't seem right, it just didn't feel right. I realized I needed some more time to clear my head. ~~As if anything will ever be clear again~~

Jason seems to be doing O.K. He told me that he thought one of us needed to go into Trey's room to turn off his (fiber optic) Christmas Tree which we have left on since his passing. It has been over a month now and Jason feared it could catch on fire. I told him I would do it and when I opened Trey's door ( first time in weeks) the tree was already off. I knew it was on the last time I went in there so I think the bulb finally blew. I did unplug it, but I left it there on his kitchen set. I stood in his doorway and looked around for a few moments and then the tears began to flood. It hurt so deeply. Jason said he wished he never had mentioned it and should have done it himself. I'm glad he didn't, that may have hurt me worse.

Kaiden seems to be doing O.K. He's pretty big now... and I mean that in a chunky way. He's 4 months and 19 pounds. He had shots again last week at his check-up. Again, I thought of Trey and how he cried the first time Kaiden got shots. Jason held Kaiden again when the nurse was giving them to him this time and I just bowed my head and secretly told Trey that it would be O.K.

I know he's not physically here with me, but I still talk to him anyway. I tell him how much I love him and how I'm sorry when I'm crying but that I miss him so much. I hope he understands, which I'm sure he does. I tell him so many things everyday. He will always be my teammate. It will always be the Trey and Mommy team. I promised him that in his last minutes and believe me, that's a promise I WILL ALWAYS KEEP!!!

With All My Love,
Misty
~~~~~~~Trey's Mommy Forever~~~~~~

Tuesday, January 25, 2005 10:16 PM CST

Hello again everyone. I am sorry it has been awhile since I have updated. I have tried to a few times, but I end up staring at Trey's picture and I break down. This week has been especially hard for me. I can not even look at a picture of Trey without swelling with tears, and we have so many pictures sitting around. The last couple of days I have just been drifting. I don't know where, just drifting. Jason is constantly asking if I'm O.K. or what's wrong...I guess hoping maybe it will be something different for once. But, it's not...I just miss my baby. I have not opened the door to his room in over a week. I just can't. I don't know what I should do. I just can't go in there. The pain becomes unbearable and it is all I can do not to scream and yell until I'm in a ball on the floor.

This weekend marked one month since I held him, and heard his voice, and we hugged each other, one month since I heard I love you mama, one month since my whole world shattered. I wanted so badly to visit the cemetery, but due to the snow I couldn't make it. I wish the snow would just disappear. I looked out the window and saw some children sledding down our street. I cried so hard. I hate this. I hate it so much. I wanted to see Trey out there. He should have been out there.

I am sorry this update isn't bright and bubbly and full of beautiful stories of my baby. I will tell them, as there are so many, but for now I just had to get all this out. I am tired of keeping it wrapped and guarded inside when it is all less than a scratch below the surface. I know there are so many positive things that I should be reflecting on, but for now, for today, I just don't have it in me. I miss my baby. I miss him so much.

However, I do thank God for giving me Trey for the time that he was here and for allowing me all the days in which I wake. These are all gifts from Him in which I AM appreciative.

THANK YOU ALL AGAIN FOR EVERYTHING!!!

With love and missing my Trey like crazy,
Misty

~~~Trey's mommy forever~~~

Thursday, January 13, 2005 7:40 AM CST

Hello everyone. The last three weeks have come and gone and I here I am. That's really all I can say about that. I don't know whether I'm doing good or if I'm doing bad. I know I hurt almost constantly. When I'm not hurting I think it's because I'm just numb. Basically it boils down to I miss my baby more than I ever thought possible to miss anyone. It hurts SOOOOO deep inside. It is the type of hurt that you'd never ever want anyone else to ever feel. Each day it seems to hurt a little more. The nights are still pretty bad. I have dreamed of Trey almost nightly. When I wake, it takes a second for me to realize what was just a dream and what is reality. This brings on quite a lot of tears. Usually I'll cry myself back to sleep. This time I couldn't go back to sleep...(which is becoming more of the norm) I guess in some way I should be glad that I dream of Trey. That way I still get to see him.

Yesterday I was looking on the computer at a couple of the last pictures taken of him. I just stared at the screen and broke down. I kept touching the screen and closing my eyes trying to imagine feeling him in my arms again. I miss his touch, his everything. He looked so alive in the picture just like he was right here with me again. Oh Trey, mommy misses you so so much. I love you more than anything!!! You will always be mama's baby boy.

The days pass rather quietly now. I thank God for giving us Kaiden. His needing constant attention really does help. We took him to the doctor the other day because of congestion. He did really well. I remember the first time we took him to the doctor and he had to have a shot. Once the nurse finished, Jason held Kaiden to calm him down and I had to hold Trey. I had looked at Trey right when the needle was coming out and tears were steaming down his cheeks. I went to hug him and tell him Kaiden's O.K. and he asked "Mommy, why do they have to give him a shot?" "I know it hurts him." He said he was sad they hurt his brother and he just cried into my chest. He said he could feel Kaiden's pain. He loved his brother so very much!!! Jason and I know Kaiden will never remember Trey physically, but we are going to share every aspect of him with Kaiden. Kaiden will still grow up and know all about his big brother.

Other than Kaiden's need for attention I have also kept myself busy getting neuroblastoma specific car ribbon magnets into production. I should be finalizing the proofs Friday and they'll go into production this weekend. I am so excited about this. It seems so few people have ever heard of neuroblastoma. ( I hadn't until Trey's diagnosis) I want so badly to get the word out there. Neuroblastoma (NB) receives so little funding compared to many other pediatric and adult cancers. If we could just raise the awareness then we could raise the funding. This in return would lead to more research with hopes of finding a cure to kill this monster. As of now the prognosis for any child over 1 year of age diagnosed with NB are VERY VERY POOR!!! There are some treatments out there that look promising, but after emailing one of the researchers, I have learned there really isn't much they can do -- due to lack of funding. With raised awareness, maybe certain groups or even a celebrity will make NB their charity of choice. ---To think, with enough funding, a cure could be found in the next ten years and so many children would not have to live the way Trey did. ( hospitals...doctors... pills...needles...chemo...PAIN...PAIN...PAIN...and tears) This, he endured like a champ for over 1/3 of his life. No child should have to live that way!!!

If you want a car magnet to display or hand out please email me. I will let you know all the details as this means SO much to so many of us

I will update again soon. There are so so so many other things I'd like to include but right now it's the Kaiden needing attention thing again. Yes, he's SPOILED.

THANK YOU ALL AGAIN FOR EVERYTHING!!!

With love and missing my Trey like crazy,
Misty

~~~Trey's mommy forever~~~

Thursday January 6 , 2004 12:00AM

. It's funny how I signed onto Trey's site a little while ago with so much I wanted to write and now I'm blank. So many thoughts are racing through my head right now but none I know how to form into words. I just miss Trey so very much!!! There really are no words. Just wonderful wonderful memories and thoughts.

. He is still very much alive inside of me. I catch myself doing things that only he would do or saying things that only he would say. Jason will look at me and smile and sometimes he'll carry on with me. We are constantly bringing things up to one another about him. "Trey would love this." "You know what Trey would say," or " Do you remember..." have now become part of our daily vocabulary. There is not a minute that goes by when he is not in my thoughts. I just miss him so so so much!!!!

. I'm starting to really get upset again so I'll try write again a little later. Sorry about this half complete journal entry. This is harder to write than I ever thought.
. But let me just thank everyone again. You all have meant so very much to us. There are so many people I need to thank and so much you've done for us. I promise you have not been forgotten. Jason and I speak of what a wonderful family and what wonderful friends we have often. I will try to get around to thanking everyone personally but it may take a little time.






This is Aunt Kathy. Misty ask that I do this update and to let everyone know that she will be keeping the site going herself as soon as she gets everything settled.
Treys services were both beautiful and exactly what Trey would have wanted. Everyone wore his favorite color(red of course). There were so many flowers at the church. Trey would haved loved that too. Trey's Papa Kyle spoke and told lots of stories about Trey and his strength to the very end of his battle. Trey would have liked that too. He was very proud of being so strong. Misty gave everyone a little red silk heart to remember him by. He also loved anything silky. Many of his favorite things went with Trey to heaven. I bet he is showing his special angel collection to all his buddies in heaven.He also took some tools along. As everyone knows trey loved to build things. The pastor for his service said he is probably already working on a Mansion for the rest of his family and i'm sure he is right about that. Trey probably already has a crew for Trey Construction Co. and is doing what he does best-giving orders.
His graveside service was also beautiful and very touching. There was a fire truck there at the entrance to honor Trey. Trey's cousin Tristin had the ROTC color guard from his school be there in Trey's honor. There were so many people. Trey touched sooo many lives in his short life. Many of the nurses and other medical professionals from the hospital in Roanoke were there.
The balloon release was just amazing. the sky was coeved in red. I know trey was so excited when they reached him in heaven.We will post picture soon.
There are so very many wonderful people to thank. I will get a whole list from Misty in the next day or two. I don't want to leave anyone out so I'll just say Thank You so much for the Love, Support, Prayers, donations, Help with Funeral arrrangements, I could go on and on. Trey's family is very touched by the outpouring of Love.
Misty is the best Mom I know. After the last few days I now know where Trey got his strength to fight so hard.His Mommy.
God Bless you all. Please keep praying for strength.
Please visit the guest book while you are here and offer words of encouragemnent to Misty.

Click on Trey
to read about the final arrangments


Friday., December 24, 2004 9:30 PM
Arrangements so Far:

FUNERAL HOME
Lotz Funeral Homes
305 East Washington Ave.
Vinton Va. 24179 540-343-4986

There will be visitation at the Funeral Home on Sunday Dec. 26 from 1:00 - 4:00.

The funeral will be held on Monday in Roanoke followed by a grave side service and red ballon release (please bring red helium ballons to send to Trey) in Danvile. These arrangments are still being finalized. I will post times by the end of the day.

Trey loved the color RED !! Anyone who would like to please feel free to wear bright red to his services.We know that he would love that.



The tears are flowing as I type the one journal entry that I have feared and dreaded from the first day of this long 2-year journey.
At 9:30 pm with his Mommy, Jason and Grandparents by his side our Precious Trey flew to Heaven with Jesus and all of the other Angels. Trey fought the fight to the very end. Trey’s Spirit will remain in our Hearts and Minds forever. Trey has touched so many lives and Hearts in such a short life…. his memory will live on Forever…

Many Thanks to so many people who Loved and Prayed for Trey through out his illness. Please continue to pray for strength for Misty and those close to Trey in the coming difficult days. I will post arrangements as soon as they are available.
God Bless You each and every one.

Love, Treys Aunt Kathy






Update #5
This is Trey's Aunt Kathy. Susie ask if I would do the update this evening as she is spending all her time with Misty and Trey. I wish I could tell you that Trey is resting peacefully now but unfortantly thats not the case.His pain Meds have been increased to the max and he his still experencing a great deal of pain. She said he has really gone
downhill since I was there this weekend. Misty,Jason,Papa Kyle,Grandma Diane and Susie are with him around the clock now. Other family members come and go. Trey is still talking a little when he wakes up. It just broke my heart when Susie told me that Trey had told Misty that he was sorry for ruining her Christmas. Thats the Trey we know and Love. Misty, Jason and all the Grandparents have talked to Trey about heaven and told him it was o.k. to let go so that the pain can end. He says "NO I don't wont to". He is fighting this passage just as hard as he has fought the last 2 years. Anyone that knows Trey would except no different. It is just so brutel on Misty to see him suffer like this. The hospice nurse said that she doesn't know he could possibly still be waking up on the amount of pain meds he is on.
PLEASE pray for some comfort for Trey !
There are so many people to Thank for there kindness. The bear shop owner and employess in Roanoke have been wonderful~many Thanks.
Zoie's Grandma Candyce Thank you so very much for your kind gift. Misty received it today and was just blown away that another parent fighting this same fight with her child could be so kind.
Thank you so much to Misty friends from work. Their efforts this week have been wonderful!
State Employess Credit Union Employees thank you so much for everything.It's the goodness in the hearts of C.U. employees that has kept me working there for so long. A special thanks to the Cary II branch. They have followed prayed for raised funds for Trey from day 1 and have never forgotten him.
Please continue to leave messages. It means so much to Misty that soooo many people care. Thank you again. Please keep praying for that Christmas Miracle.


Update #4
Hi All,
Just wanted to let everyone know that Trey is still fighting as hard as he can. His meds are slowly being increased to keep him as comfortable as possible. He is starting to sleep a lot more. Misty said he looked at her and said, “Mama, I don’t have much time left.” They are both so strong it is unbelievable. I only wish I could have been half as good a mother to Misty as she is to Trey & Kaiden.
Papa Kyle is right there in the bed with him too. Trey is his heart. He sleeps on one side and Misty on the other. Except last night. She was told that this is a mans bed and she was pushed to the floor. Trey has moments he wants his papa to get him out of the bed and carry him around the house. He’s still wants to keep up with everyone else.
He has been opening Christmas gifts for 3 days now. It takes a while to get one open and sometimes he has to nap before he gets all the paper off. It is all worth it just to see that sweet little smile that pops up on his face for a few seconds.
He has had a lot of visitors over the past few days. He wants everyone right there with him, in his room. I’m going to stop now so I can get back up there. I just wanted to let you all know were stilling hanging in there.
Thank you all so much for the continued prayers and support. Please don’t forget sign the guestbook. We are reading them every chance we get….Even Misty when she has a few seconds. It just help so much. We can honestly feel the LOVE that is coming from all over the world. I know God is hearing your prayers. If not we would not have made it this far. He is giving us all the strength to do what we have to right now.. Misty more than any of us. She is Trey’s rock right now.

We will never give up so Please continue to PRAY for Trey’s Christmas Miracle!
I know through Christ anything is possible.

Sending lots of Love and Big Hugs to you all!
Granny Susie




Friday, December 17, 2004 4:30 PM CST
Update #3
Trey is now at home. Thank You Lord He was released to home at around 9:00 last night. He had alot of family around him last night and his pain is being controlled fairly well with a IV drip. Trey will have his Christmas tommorrow morning. We would like to say Thank You so much to Angel Beverly for your kindness and support. Thank you so much to everyone for the support and Prayers.
I have a message for you all that Misty wrote last night:

I haven't much time now, but I would like to let
everyone know my baby will have his wings sooner than
I'd like. We left the hospital tonight on hospice.
Things are really really bad but Trey was coherent
enough to let us know he wanted to be home. Please
pray for all of us as this is the worst time in our
lives. I never imagined how hard this could be.
Please pray for strength for us and a beautiful and
glorious transition for Trey.

With love,
Misty


UPDATE #2
I just got a call from Susie. She Tara and Jeff are on their way to the hospital to see Trey. Tara has been telling Susie for several days that she needed to go see Trey and Trey has been asking to see her. Tara and Trey have been very close.Susie wanted to let everyone know that Trey will not be going home today. They have had to up his pain meds. today to the point that they can not be administered by hospice. The doctors are still looking for a way to control the pain that hospice can manage. Please prey that they find a way for him to go home tommorrow. It is very important to Misty to get him home so that he can have his Christmas. Please PRAY PRAY PRAY.





UPDATE
I didn't think the news from Trey's test could get any worse but Misty was told this morning that the blood test results show even more progression than evident from the scans. His organ functions are already being affected. Misty still plans to take him home today. She told her Mom that she promised Trey a long time ago that they would always leave that hospital together and that she is going to keep that promise.
Please pray for strength and peace for Misty,Jason and Trey's Grandparents. They all love him so much. Thank you all soooo very much for everything. PLEASE leave Misty and Trey some suportive words in the guestbook while you are here. She needs all the suport she can get right now.


Misty ask me (Aunt Kathy) to update
tonight to give you all the latest news on Trey. I know many of you are checking on him. His site was viewed over 300 times already today.Trey needs prayers from everyone of you.
Misty was given some very bad news today by Doctor Fisher at the hospital in Roanoke. Scans were done on Trey this morning due to his condition the last couple of days and swelling in his abdoman that began last night.
The scans showed the tumors have doubled in size in just a couple of weeks. The tumor in his liver is now grapefruit size. He has cancer through out his little body.
His bones have many new lesions and his marrow is just full of cancer cells. As a result of the rapid progression of Trey's cancer he is no longer eligable for the MIBG treatment at Chop.
DR. Fisher had a talk with Misty and Susie today and basicly told them that there is nothing else that can be done for him outside of a miracle. So thats what we need to pray for now folks. That God grant Trey the miracle he needs and rid his little body of this horrible monster.
Misty has decided to try and take him home as soon as possible. Maybe even tommorrow. He is getting platelets tonight. He is on a morphin drip that is controlling his pain for the most part. Hospice will help with the pain control once they are at home.
Please everyone pray for Misty as she endures whats ahead. She is of course devastated right now and needs all the prayers and support she can get. Please leave her a message of support. Thank you for loving, praying for and supporting them. Please pray without ceasing.
Misty is so worried about Trey and now all the bills piling up. with the medical bills that come with having a child with cancer.
Jason will now be out of work to help with Trey and the baby, so they won’t have an income for a while as Jason has used all of his vacation time in the last few months.
As if she doesn’t have enough to deal with. It just breaks my heart to see her suffering with Trey. …

If you would like to help out by making a donation there is an account set up for Trey (Johnny Roberts) at
Roanoke Postal Employee FCU in Roanoke,VA.
P.O. Box 12405
Roanoke, Va. 24025.
The account number is (12008)

There is also an account at The NC State Employees Credit Union. The address of the branch handling the account is:
SECU (State Employees Credit Union)
9101 Chapel Hill Rd.
Cary N.C. 27513
Account # 2122733 Trey Roberts

Tuesday, December 14, 2004 12:45 P.M. CST

UPDATE!!! TUESDAY DEC 14 (Aunt Kathy)
Trey was hospitalized last night in Roanoke. Misty took him in because of severe pain and breathing issues. After test were done it was determined that his oxgen level was very low, probably due to pain meds. He also needed platelets, potasium and blood. They have goten his pain somewhat controlled.
Susie is at the hospital with them. She called me a short time ago and said that Misty had talked to the Dr. at CHOP and he is recommending that Trey start MIBG treatment next Monday in Philly.The soonest they can start him on it behind this last round of chemo. Please Pray that he can make this trip and this treatment is the answer they have been looking for.
The NC State Employees Credit Union account # is 2122733. The address of the branch handling the account is SECU
9101 Chapel Hill Rd.
Cary N.C. 27513
(Many Thanks to the continued support from this credit union branch. You guys are wonderful!) .
These trips for treatment are very expensive. They could use any help.


Sunday, December 12, 2004 7:25 AM CST

Good Morning, First let me say Thank you all for the continue prayers and support and to the people that have set up prayer chains for our Trey. You don't know how much this means to us. Trey sends a special Thank you to Granny-b.

He finished the chemo pills this past Wednesday at which time he also had to have a transfusion. He had gotten where he wouldn’t eat at all. The Dr. finally gave him some type of pills to give him an appetite. They seem to work a little. He felt so much better while taking the chemo pills. His pain was minimal and he was able to walk around some. Thursday night the pain returned and has slowly gotten worse. Misty said he keeps telling her how bad he feels. He says his chest hurts real bad and it just hurts to breath. The pain patches have been increased and he’s popping the morphine pills again. He is back in the bed and not walking. The tumor area on is ankle is swollen and it is extremely painful. He won’t even get up to go to the bathroom. That’s another story in it’s self. Misty said his urine looks like Pepsi cola. She has a call in to the Dr. at CHOP. Trey is a fighter. I can’t begin to image the pain Misty feels. She’s having a rough time right now. The baby has decided he doesn’t want to sleep at all. Between the two of them screaming she doesn’t get much rest. She told me she had to call Jason home from work night before last it was so bad. When Trey was asleep Kaiden was up and when she’d finally get him down Trey was up screaming in pain again. She said, “I just couldn’t handle it anymore.” She said, “ I hated to call Jason home because we can’t afford for him to miss any more work, but I didn’t have a choice”

Misty is so worried about Trey and now all the bills piling up. It’s hard with one person working and the medical bills that come with having a child with cancer. Not to mention all your everyday expenses. She is just so stressed out over it. As if she doesn’t have enough to deal with. It just breaks my heart to see her suffering with Trey. I know that God will provide as he always has for me, but I so wish I could take that part of the worry away for her. She asked me not to buy her anything for Christmas. I said, “What?” She said, “just give me money so I can pay bills.” I was at a loss for words…

If you would like to help out by making a donation there is an account set up for Trey (Johnny Roberts) at the Roanoke Postal Employee FCU in Roanoke,VA.
P.O. Box 12405
Roanoke, Va. 24025.
The account number is (12008)
There is also an account at the State Employees Credit Union in North Carolina. That’s where my sister works, Trey’s aunt Kathy. If you would like to contact me, my email address is: jeffandsusie@direcway.com
If you would like to send Trey a card or something their home mailing address is at the bottom of the page. He looks forward to the mail comming everyday. It has become very special to him these days since he can't get out. Like all kids he loves to get mail.

I'm sure Misty will be calling me if and when she gets a chance to read this. She doesn’t like to ask for help but they really need it right now. That's why I'm asking.
No one should have this much worry on them. It’s just not fair…

Please Pray the Dr. can find another treatment that will work for Trey!

Please Pray he will be able to enjoy Christmas morning with his family!

Please PRAY for a Miracle for Trey!

God Bless you all!
Granny Susie

P.S.
Trey received a red angel in the mail the other day. Misty said she wished she’d had a camera to take a picture of the expression on his face. She said he was in awe. It just made his day!
Thank you Angel Beverly for that special angel! You just don’t know how much you’ve touched our hearts.

Monday, December 6, 2004 5:34 AM CST

Hi All!
Misty said things went O.K. at C.H.O.P. She and Jason liked Dr. Maris. He told them to wait and see how Trey does on this 1st round of chemo and they would go from there. If Trey is still having the leg pains when he finishes the pills he wants him back up there to start radiation immediately and will schedule to start MIBG in mid January. Still wait and see…..

Trey does seem to be feeling a little better. (PRAISE the LORD!) As of last night he hadn’t taken any morphine pills in the past 24 hours but his pain patches are up to 350. I think that’s good. Jason told me Trey actually got up yesterday morning and walked to the bathroom all alone. One the other hand he did have some light blood in his urine. Misty is hoping this is from his urinary tract infection. He is still taking the chemo pills but throwing up every time he does. Misty said he is having a hard time keeping anything on his stomach. This is not good. Trey has anti nausea meds but he can’t keep that down long enough to work. Misty said she’ll be talking to the Dr. this morning.

Thank you all for your continued prayers and support!
I know God is listening…

God Bless you,
Granny Susie

Friday, December 3, 2004 5:00 AM CST

THANK YOU! For all the prayers being sent up. I know God is listening.

Trey was so bad Wednesday night, we were all so scared. His papa Kyle and grandma Diane were already on there way up to visit when I talked to Misty and she told me how bad Trey was. They ended up staying all night. I don’t know what time it was when she told me the meds had finally made him pass out. She said he was in and out all night moaning and groaning. His patches were up to 300 and she had given him 7-15mg morphine pills between 4 a.m. and 10 a.m. which was about the time K.K. and I got there. Trey was still in pain and running a fever.

We followed them to the hospital. Trey was given fluid and then had blood draws. Dr.Fisher came in and asked Misty to step out in the hallway.
Misty came back and told Trey he could start taking the Fenretinide pills (Thank you God) but he was going to have to eat. She explained to him if he didn’t eat they were going to have to insert a feeding tube through his nose into his stomach. He decided he would eat. The nurse gave her one of the pills to show him. I kid you not these pills are about 1 inch long. I don’t know if I could swallow them. When he saw it he started to cry. He looked at Misty and said,"I’m scared" I would have been too. He has to take 7 pills with each meal. That’s 21 giant horse pills a day. I don’t even know if a horse could swallow these.

Jason and K.K. went to McDonalds and Trey downed his first seven pills with a half of a double cheeseburger and some milkshake. Thank you God! I never thought I would be so happy to see my grandson taking drugs. Please pray these chemo pills will work and stop this cancer from growing.

They had to back at the hospital yesterday morning for antibiotics. Trey has an infection. After which he received blood and platelets. He is still having pain but is sort of under control. As long, as you don’t touch him or try to move him around.

They left yesterday afternoon on their journey to C.H.O.P. Trey’s appt. with Dr. Maris is at 9:00 this morning. Misty is going to discuss MIBG therapy and any other options with him.

Please PRAY these pills will work and the pain will go away. It is so hard to see the pain in his face and know there is nothing you can do. I have never felt so helpless in my life.

Please just Pray. Pray and Pray some more. I know God is listening!
He has brought Trey this far and I have faith he will bring him through this.

Thank you all for checking in & God Bless!
Granny Susie

Wednesday, December 1, 2004 9:54 AM CST

This is Misty's and Trey's Aunt Kathy. Susie asked me to update for her as she and Misty's Brother K.K. are on their way to Roanoke.
I need to ask everyone to PLEASE PRAY PRAY PRAY without ceasing for Trey and ask everyone you know to do the same.
Yesterday Trey took a turn for the worse and is really suffering. Misty had a very difficult time controlling his pain yesterday afternoon and last night. He is just hurting all over. After giving him as much pain meds. as she is allowed to he was still screaming in pain last night. Misty couldn't touch him at all or even sit on his bed. She got in touch with his Dr. He told her to go ahead and give him more morphine. She gave him 3 more pills ,one every half hour until he was finally able. to sleep some. He was still up and down most of the night.
Misty will be taking him to the hospital in Roanoke this morning to check his counts and see if its possible to get him started on the new chemo drug.
Please pray that they can get him on some treatment to slow the cancer down and take away some of his pain. It is obviously very aggressive and attacking his entire body. The tumors on his head and ankle are now visable. He needs this chemo ASAP!
I will update as soon as I know more.
THANK YOU all so much for the prayers and the support!

Monday, November 29, 2004 4:43 AM CST

What a week it has been. Where do I start…

After everything sunk in Misty and I finally talked a little more about the scan results. Trey also has tumors on his spine, hip and ankle. She has to load him up on pain patches to control the pain. He is also taking morphine in pill form. Wednesday his ankle started to swell and he got where he couldn’t walk. When I talked to her that afternoon he had to crawl to the bathroom. Not that Misty wouldn’t carry him. Trey is just a very strong and proud young man who wants to do everything himself whenever possible. When I told my sister Sherry about this she immediately contacted the Cancer society here in Danville. They put her in touch with the office in Roanoke who in turn called around trying to find Trey a small wheel chair. The Easter Seals had a couple had a few but nothing he could use. They did loan him a walker, which he can’t use now because his ankle is so bad. He said, “Granny, I broke my foot.”

Thanksgiving morning it had gotten worse. They had planned to have lunch with Misty’s father (papa Kyle’s) family at a cousin’s house about 20 miles away. Trey was really looking forward to this. Misty said Trey asked her to call his papa about 6:30 A.M. She gave him the phone as it began to ring. She told me it broke her heart as she listened. She said, “Trey started to cry as soon as he started talking. He said, “Papa, I can’t go with you to the country today my foot hurts to bad. His papa told him he would come get him and carry him. Trey told him no, it still hurts even if you carry me. He asked, “Will you come see me when you get done?” Well I guess you all know where Papa Kyle and Grandma Diane spent their Thanksgiving afternoon. His uncle K.K. aunt Lee Lee and cousins Lacey and Alaina got to go too. So I guess he had a pretty good day after all. K.K. did tell me Trey wouldn’t let anyone pick him up and carry him. After they were there a while He said Trey came crawling into the kitchen and climbed up in a chair.

I happened to remember my granny had a wheel chair in her basement. I got that and another from a family friend and took them up yesterday. Trey was so happy. He said now I can go to the mall, which we did. He wanted to go to the toy store and to make a bear. The lady at the Bear Stop cart was so sweet. It’s sort of like build a bear, just a cart in the food court. Trey was going to pay for it with his own money. He picked a red bear (his favorite color) and a red hat w/matching scarf. He wanted a pair of silk boxers but he didn’t have enough money. As he was making the bear I asked the lady how much the boxers were. She said, “He can have them.” I thought that was so sweet. When Trey finished I told him to get his money out so he could pay her. She said, “That’s o.k. He can have it.” I was almost in tears. We thanked her again and were on our way. I wish I had gotten her name.

Misty told me to make sure to say Thank you to Angel Beverly and the Angels for Hope
. Trey has a lunch box full of crocheted angels and butterflies. He sat and showed me each one and pointed out their differences and told what he thought was special about each one. He told me he was collecting them. When we got back from the mall there was a brown envelope in the mailbox. It was from one of the Angels. When he opened it he was so excited. He said,” mama this is the one I’ve been wanting!” As if he knew what they all looked like. It was a beautiful blue and white butterfly. Misty said he had been receiving them in the mail for several weeks now per Angel Beverly’s request. You guys don’t know how much that means to him. Thank you so much!

Plans have changed slightly. Trey will not be going to Duke for test this week. Dr. Maris said there was no need. He will however be having a bone marrow aspiration this morning in Roanoke. Misty is going to see if she can get them to let him start taking the Fenretinide today. This is a kind of chemo pills. I think she said he will have to take 12 a day. Dr.Maris said if this holds the cancer back Trey would be a prime candidate for the MIBG which he could start the end of February. Misty has alot of questions that have to be answered before then. Trey still has an appointment with Dr.Maris at C.H.O.P friday morning.

Please pray Trey can start on these pills ASAP!
Pray his little body can handle it!
Pray this treatment will stop this monster!

Also remember all the other children fighting this battle…..

Thank you for checking in on Trey & Have a blessed day!

Granny Susie

Tuesday, November 23, 2004 6:00 AM CST

Let me start by saying THANK YOU! The outpouring of prayers and support has been just amazing. Where would we be without our caringbridge family. You guys don’t know how much it means to know you all are thinking about and praying for our little Trey. I really helps to read the messages in the guest book. It’s just the feeling of knowing you are not alone. I can’t explain it. Please don’t stop. Your words mean so much not to mention the “POWER of your PRAYERS.” I just can’t thank all of you enough.

Finally…. Trey has an appointment with Dr. Maris at CHOP on Dec.3rd. That seems like a long way off. I know it will feel like a lifetime to Misty. Trey is still having a lot of pain. I was with him Friday and barely touched his head and I was quickly reminded. He yelled at me and said, “Don’t touch my head, it has a knot on it and it hurts,” Before that he told me he had been hurting a lot in his side and arm. He said, “they just keep hurting and I don’t know why, I just wish it would go away.” That just broke my heart.
He also told me he couldn’t sleep at night. He said, “ I lay there and close my eyes but I just can’t go to sleep. A few times I noticed him just staring off in space. I asked him what he was doing. He replied, “just thinking.” I said, “Thinking about what?” He said, “just thinking”. He never would tell me what he was thinking about. When I told Misty about this she said he had been doing it a lot lately.

Misty has started to tell him a little about what’s going on. In a way I think he already knows. It’s just all the little things he keeps saying. She said on Sunday he started telling her he was getting this funny felling. She asked him what it felt like and he told her it felt weird. It didn’t hurt or feel good it was just weird. He has also started limping again. This happened a lot before diagnoses. Like I said before this is going to be a long 2 weeks. Misty is so worried. We all are, but nobody worries about you like your mom does. I just wish I could help her help him. This is all so unfair. He’s just 6 years old.
So many questions and NO answers………

Anyway back to the Dr. appts. Trey has to go to the eye Dr. today to see if the meds. are effecting his sight. He is scheduled to be at Duke for testing Nov. 29th and 30th before going to CHOP on Dec.3rd. Which can’t get here quick enough!


Please continue to Pray for a total healing for Trey!

God Bless you all and Have a Happy Thanksgiving…
Granny Susie

Thursday, November 18, 2004 4:53 AM CST

Good Morning everyone,

At least I’m trying with everything in me to find the good in it. I’ve been sitting here for several hours trying to write this in between the tears. The results of Trey’s scans were a lot worse than Misty had thought. She had told me she could tell the cancer was progressing but didn’t know to what degree. The Dr. wanted to meet with them before they left Duke yesterday. Misty told her she didn’t want to talk in front of Trey because she knew she would get upset. She asked if she would give them time to get home and then give here a call.

Dr, Lauger called Misty from her home. She said: “Trey’s cancer had become resistant to the chemo.” It isn’t helping him any more. It is doing more harm to him than good. The cancer has also become extremely aggressive. He has developed a tumor on his head and under his skull. There are more in his stomach area. One has attached itself to his liver and there is one inside his liver. Anyone dealing with this knows this is the last thing you want to hear.

His pain has gotten worse. Misty had to increase the pain patches and put him back on the oral morphine. The Dr. told her if she felt like he needed it to call and she would arrange to have someone come in and put him on a drip. This is not happening! Somebody PLEASE wake me up.

My whole body is numb right now and I don’t even know what I’m writing but I’ll try to finish. So please excuse my grammar. I can’t begin to imagine how Misty feels. She was very upset when I talked to her last night. She hasn’t told Trey anything and doesn’t intend to right now. She said he was sleeping which he has done a lot of the last few days due to the increase in pain meds.

Misty did ask the Dr. about another trial they are doing at CHOP. The Children’s Hospital of Philadelphia. There is a pill form of chemo, I can’t remember the name of it. There is a chance if he takes this it could stop it from progressing that is if his body can tolerate it. The problem is he just stopped the Irinotecan yesterday and they have to wait 3 weeks before starting another chemo. The Dr. told Misty she was going to try and contact CHOP last night and see how soon they could see Trey and get him started on this. She said as aggressive as his cancer has become he doesn’t need to wait a week. She feels it needs to be started ASAP! Hopefully they will be going to Philadelphia soon.

I am begging you all to get down on your knees and PRAY!
Pray Trey can receive this treatment!
Pray his little body can handle it!
Pray it will stop this monster from growing inside him!

PLEASE PRAY for a Miracle for Trey…..

God Bless you all,
Granny Susie

Monday, November 16, 2004 1:20 PM CST

Well…….Trey didn’t have his scans last week as planed. Misty received a phone call for Duke asking them to wait until this week. They will be going tomorrow so Trey can drink that stuff that makes him glow in the dark. He’ll be having scans Wednesday. He is starting his chemo today in Roanoke, which will hopefully relieve some of his pain. He will receive chemo Tuesday and Wednesday at Duke and the back home for the next one.
Please Pray Misty will get some good news from these scans…
Please Pray for a cure!

God Bless,
Granny Susie




Friday, November 12, 2004 5:11 AM CST

Hello everyone,
Wow, I didn’t realize it had been that long since the last update. Sorry….. Things have been o.k. I guess until now. Trey was able to come down Halloween and go trick or treating with us. The kids had a great time other than fighting over who got to the door first. They got lots of candy.
As Misty and Trey were leaving I lightly kissed him on his forehead. He screamed and told me I hurt him. Misty said he was staring to have a lot more pain in between chemo treatments, which are every other week. She told me he is having small knots come up on his head the week he is off chemo and the go away the week he is on. They are at Duke today getting scans to see where he stands. It’s possible the chemo isn’t as effective as it was. Misty just wants to know because there are other treatments out there.

PLEASE pray there is something out there to help him!

On a lighter note Kaiden doing fine and Trey is loving being a Big Brother!

Thank you for checking on Trey and PLEASE remember him along with all the other children fighting this monster in your prayers.....





PLEASE Sign the petition to get a Childhood Cancer Stamp!

Tuesday, October 5, 2004 6:19 AM CDT

See my New Baby Brother! Kaiden Isaac Whorley




Sunday, October 3, 2004 6:19 PM CDT

Hello!
Finally once again I am back online and just in time!
Boy, do I have a lot to fill you guys in on....
Where do I start…Trey seems to be doing o.k. for now. He’s still receiving chemo 5 days a week every other week. He did have to skip one-week right after he got sick at the beach. The Dr. said that was just his body’s way of saying I’ve had all I can take for now.
He continues to wear pain patches as the pain comes and goes. It tends to get worse towards the end of the week he is off chemo.
Trey is home schooling now. His teacher comes in 2 hours a day three times a week. He didn’t like this too much at first but I think she’s growing on him.

Now for the best part, For those of you that don’t know Misty was married the first of the year to the most wonderful man. His name is Jason. Sometimes I think Trey loves him as much as Misty does. He is so good with Trey…You would think they had always been together. I couldn’t have asked for a better son-in-law. He is just the sweetest thing.

Well I guess that wasn’t the best part. Tuesday morning Sept.28th at 9:49 AM Misty gave birth to a beautiful baby boy. Kaiden Isaac Whorley. He weighs 8lbs and is 20 inches long. He is just so Beautiful. What a wonderful gift from God!
Trey is already being the protective big brother. He wanted him out of the nursery and in the room with Misty so he could hold him.

They are all at home now and doing fine. As far as I know Trey will be starting chemo again tomorrow. Please continue to pray for him as he continues to fight this horrible monster.

God Bless you all!
Granny Susie

HAPPY BIRTHDAY MISTY!

Tuesday, August 24, 2004 8:27 AM CDT

UPDATE!!! Weds. August 25
Well, Poor Trey started getting sick Sunday on the way to the beach and by Monday morning he was running a very high fever. He was admitted to the hospital in Myrtle beach and has been there since. They are not sure whats causing the fever. Misty said last night that he is doing a little better and may be able to leave tonight. Please pray that Trey will feel better so that they can atleast enjoy one good day on there vacation.

This is Aunt Kathy. Susie's computer has yet another virus.
She has been trying to get it fixed so that she could update herself but she hasn't had much luck.
Anyway, Trey is still holding his own. He was very sick with this last round of Chemo and is still not eating very much. He has lost more weight and looks very thin. He is also having some blood in his urine again since this last round.
He is off treatment this week so Misty and Jason have taken him to Myrtle Beach for a few days. He was very excited about the trip. I hope he will feel well enough to enjoy himself some. He tires very quickly these days.
He will begin another round of chemo on Monday.
As always, Thank You all for your continued Love, Support and Prayers!

Wednesday, July 21, 2004 6:03 AM CDT

Guess who just turned 6???? Trey had a birthday this past Monday. He had his party on Sunday with Chuck E Cheese and had a blast. So many people were there for him. I think the place was half empty when we all left. I’m pretty sure he got everything a kid could want. I think having the people he loves the most all in one place together meant as much to him as the gifts he received. I can’t remember the last time I saw him so happy.

Trey had to spend his actual Birthday getting chemo, as he will everyday the rest of this week. He is still having it every other week. He is starting to have some side effects here and there. Last week there were some mouth sores. Sometimes he’ll complain of leg pain or a stomachache. A headache here and there. This is his life now. I Thank God everyday for this sweet little boy. Please continue to pray for a cure!

Please remember Trey’s papa Kirby in your prayers. He fell off a scaffold while working last week He has a broken collarbone and a few scratches here and there.

Thank you everyone for your continued prayers and support
God Bless!

Susie

Thursday, July 1, 2004 7:08 AM CDT

Hello again,
There has been a lot going on around here. I took my grandfather, (Trey’s great great grandpa) to the Dr. last Friday. He had been feeling tired and not eating. When checked his hemoglobin was at 5. We were sent straight to the hospital. 12 hours later he was admitted and given 2 pints of blood. They began running test and found he had a bleeding ulcer. 2 days later and 2 more pints of blood they found a bleeding tumor in his colon. Not to mention a heart blockage. The Dr. said he was pretty sure the tumor was cancer. He had a 3-hour surgery Monday morning to remove the tumor. Praise the Lord! All went well. He did have to stay in I.C.U for 24 hours because of his heart. The Dr. said he might have to have some chemo. I don’t know about that. My papa is 83 and granny is 86. I don’t think he could handle even a little of what Trey has been through. Hopefully he’ll be home the first of next week. Please remember him in your prayers.

Trey is still having chemo every other week and will be indefinitely. He seems to be handling it o.k. so far. I just wonder how long his little body will be able to take it. He is still wearing a pain patch constantly. I pray everyday a cure will be discovered.

Now for some good news! Trey got his Make a wish this past Tuesday. They were picked up by a limo and taken to the local Toys r us where he was given a $500.00 spending limit. After that it was on to Chuck E. Cheese. I haven’t really had a chance to talk to Misty and get the details. I’ll be sure to update when I do.

Please continue to pray for a cure.

God Bless!
Have a Safe & Happy 4th!

P.S. Trey says HAPPY BIRTHDAY Grandma Diane!

Friday, June 18, 2004 5:33 AM CDT

QUICK UPDATE:
Test Results…

I talked to Misty yesterday afternoon. She said the scans showed no change. The chemo is keeping new cancer cells from growing but it is not killing any that were already there. So for now Trey will continue to receive chemo every other week. Please continue to pray for a cure.


Wednesday, June 16, 2004 5:46 AM CDT

Finally… I’m back online! My computer had a few viruses that were making it act crazy. The only thing I lost was the most important folder in my computer. My caringbridge file. There were well over 100 sites in there. The guy that fixed it said every time he tried to open that file to save it would shut his whole system down.
I’m sure I’ll be able to find my way back to most of the sites sooner or later. Thanks to the Neuroblastoma Warriors page I have located a lot of them.

As most of you know Trey has been receiving chemo (Irinotecan) every other week. He hasn’t had any bad side effects as of yet. Not any that we can see. Who knows what it’s doing top his insides though. He did however start showing a little blood in his urine this past weekend. Misty is really concerned about that. If the chemo is starting to irritate his kidneys it may have to be stopped. Please pray this is not the case. At this point this chemo is keeping him at somewhat of a comfort zone. He is still constantly wearing three 50mcg fentenyl patchs. The week he is on chemo Misty tries to drop it down for a few days. Sometime she can and others the pain returns so fast she can’t get a one on him quick enough. It is so hard to see him in pain. Please pray it can be kept under control.

Misty and Trey are on their way to Duke today. Trey will be having scans today and tomorrow to see if the chemo is helping at all. Misty told me she really doesn’t know if she wants to know. I asked her why? She said: “ They’re already doing all they can do and if he’s worse…. What then…. I just don’t think I want to know.” I can’t say that I blame her. I feel the same. Right now we live one day at a time and try not to worry about what tomorrow will bring.

Trey is having a fun summer overall. He went swimming last Friday and then came to spend the night with Tara. We had a lot of fun. Saturday we went to visit my grandparents, Trey’s great great grandparents. Granny is 86 and papa is 83. They still live alone and take care of each other. Anyway after that we hit Mary’s Diner for dinner. They have been great supporters of Trey throughout his illness. All the ladies there were so happy to see him. After that we went to Bubbas (a local ice cream shop) Trey had a strawberry sundae. He ate all the strawberries and threw the rest away. That boy loves his strawberries. Next we stopped by his uncle K.K.’s. He and Lee Lee have a new baby girl, Alaina. Well she’s 3 months old now. Trey loves her to death. He didn’t care anything about playing with Lacey and Tara. He just wanted to play with the baby. It is so sweet to watch him with her. Later that night I took him to papa Kyle and grandma Diane. We all caught lighting bugs for about an hour. I don’t know who had the most fun. The little kids or us big kids. It’s moments like these you cherish. Trey stayed there and we came home.
From what I heard he had a lot of fun Sunday too. Uncle K.K. and his family spent the day with them. He played with the baby and rode the 4 wheelers. Trey does have to take rest breaks in-between all his playing because he tires so easily, He still enjoys every minute he can when he can though.

PLEASE PRAY! PRAY! and then PRAY some more for good test results today and tomorrow.

Thank you & God Bless!
Granny Susie

Wednesday, May 19, 2004 9:53 AM CDT

This is Aunt Kathy. Sorry it has been so many days since the last update. Susie's computer is sick and in the shop.
Trey continues to fight a very hard and painful battle. He has been getting 1 week of Chemo and skip 2 weeks before the next treatment. The second week that he is off is really bad for him. He had severe head and neck pain in addition to the leg pain this last time. He could hardly turn his head. He is doing better right now because he just finished his chemo the end of last week.His pain is more manageable this week. He continues to be very weak and is sleeping alot. The Doctor has decided to start doing his Chemo every other week instead of waiting two weeks between treatments. Hopefully this will keep his pain manageable. He continues to wear a pain patch. Sometimes several depending on the level of pain. Please continue to pray for Trey and strength for Misty. I cant even imagine watching your child suffer like this. Thank You All,for the prayers and support!

Tuesday, May 4, 2004 5:56 AM CDT

Hello Friends,
Looks like Trey either had a virus or side effects of the chemo. I really think it was a stomach virus. At one point he was sitting on the toilet with a bucket in his hands. He did have to go to clinic for blood Friday which seemed to make him feel a little better.

He is still having pain off and on. It’s mainly in his legs and head. Misty had tried to reduce his fentanyl patchs. He was down to 50 mcg. Saturday morning. The pain soon returned and he was back up to 150 mcg by midnight. He continues to complain about headaches for which he gets ½ of an adult tylenol. He limps a lot and seems to have a problem turning his head to the left. It’s almost like he keeps a stiff neck.

Trey has lost the majority of his hair because of the one-week he had of Topotecan/Cytoxin. This is the harsh chemo that gave him all the pain and bladder problems.

While going through all this he strives to enjoy the moments he feels good. He wanted to go to the Strawberry Festival Saturday. By the time we got downtown it was pouring down rain. We road over to Target and checked out the toys while hoping the rain would stop. It did slow down a little so we went back downtown. There was strawberry shortcake. strawberry sundaes, chocolate dipped strawberries ect… Trey wanted plain strawberries. They were the biggest, sweetest berries I have ever had. Of course Misty, Tara and I had strawberry shortcake, mmm mmm good!

After that we hit Chuck E. Cheese. You can imagine Saturday afternoon and it’s raining out. They were packed. We had pizza, played ate more pizza and played some more. In between times Trey had to stop and take a rest. At one point I noticed he and Misty had disappeared. I looked over towards the table. Misty was sitting there with Trey in her lap. They both looked so content. All the kids playing with all the noise around and they were in their own little world.
There is no Love like the Love between a mother and her child. As they sat there looking at each other I could almost see a glow around them. For a moment it was like no one else was in the building. Their bond is so strong. They just keep each other going. It put a smile on my face while at the same time my heart was breaking in half.

We were on our way home and Trey started screaming. He was in pain again. Misty had top pull off the road. She got in the back of the van with Trey. She applied another fentenyl patch and just held him until the pain went away.

He and Tara were going to camp out in the living room. As soon as I got the tent set up his pain returned. Misty laid him down in the bed with her. She eventually had to apply another patch and he went off to sleep.

Please pray it is in Gods plan to heal Trey of this horrible disease.
Please pray for God to continue to give Misty the strength to face one day at a time.
Please pray for all the Neuroblastoma Warriors

God Bless,
Granny Susie

Tuesday, April 27, 2004 5:22 AM CDT

Hi again,
Like I said the other day things change so quickly. Treys leg pain and headache came back Friday night. By Saturday Misty had his fentanyl patch up to 175 mcg.
We are worried about this because he just finished chemo Friday. This is the chemo (Irinotecan) that made him feel so good the first few times he received it.
Sunday he wasn’t feeling well at all. He had started throwing up. Trey being the trooper that he is, still got up to play for a few minutes every hour or so.
He told his grandma Diane he just didn’t know how much more of this he could take.
Yesterday he seemed to feel worse. He was still throwing up and starting to run a fever. He said, “This is the worse I has ever felt.”

Please pray it’s just a virus.

I’ll update as soon as we find out what’s going on with him.

Thanks for all your prayers! Granny Susie

Friday, April 23, 2004 5:43 AM CDT

Hi Folks,
Looks like things are going O.K. for the present moment. As we all know by now that’s subject to change at any given time.

Trey had a great time last Saturday. He got to go to Kings Dominion with his Mom, Papa K. and Grandma Diane. From what I heard he had a blast. They even rode the Grizzly.

His leg pain had returned by Sunday night and he had started having headaches. Chemo started again this past Monday. Misty said a few hours later the leg pain was gone. He had another bad headache Monday night and it didn’t ease until after the Tuesday’s chemo treatment. Misty is really concerned about this. I pray it was just a headache and nothing else.
The pains from his bladder are gone for now. He is on a medication that numbs his bladder. I can’t remember what it’s called. The Dr. said he would have to take this from now on.

I want to say ”Thank you God” for taking the horrible pain away.
Thank you to everyone that sent so many prayers up for our little Trey.

Please continue to pray this chemo will help and the pain will stay away.

That’s all for now. Thank you for checking in on Trey and PLEASE continue to PRAY for God to take his cancer away…

Love to you all!
Granny Susie

Friday, April 16, 2004 2:35 PM CDT

NEW PHOTOS ADDED TO ALBUM TODAY!

Hello all,
Sorry for not updating sooner. I’ve had some kind of bad stomach virus.

I do feel we received our Easter Miracle. God heard all of our prayers. PRAISE THE LORD! PRAISE THE LORD! The Dr. was not totally right and I Thank God for that. I know in my heart he can heal our sweet Trey.

Misty got the official test results.

Trey’s bladder is not eat up with cancer as the Dr. first thought. Although they did see a few spots with minuet cancer cells. The problems are from something else.
A normal persons bladder has three layers. Trey only has one and a little of another left. The Dr. seems to think is was destroyed by radiation. Once he received this last chemo it cause the bladder to react or be irritated. It’s possible the chemo was doing its job but at the same time causing Trey all this suffering and doing who knows what to his insides. Another Dr. thinks it was this harsh chemo doing the damage. This being said they left the big decision up to Misty. Does she want to put him back on this chemo? Of course her answer was No!

There are still more cancer cells than there are good cells in his bone marrow.

As of now plans are to start back on the Irinotecan Monday. This is the first chemo Trey received after relapse. For more information read past entry: (Friday, March 19, 2004)

Trey did get to leave the hospital Easter Sunday. His pain has been like a rollercoaster since. As for the blood in his urine it is starting to clear up.

I forgot to mention Trey pulled his first tooth the other day. He was so excited.

His hair has started falling out from this last harsh chemo. Misty said almost all of his curls are gone from the top of his head.

Please continue to pray for the pain to stay away and that God will heal Trey.

I can’t begin to thank everyone for all your prayers and support.

One more request, Please remember Trey’s buddy Carter in your prayers for his cancer has returned also. He just started chemo again this week and isn’t feeling too good.

Thank you & God Bless!

Love you all,
Granny Susie

Saturday, April 10, 2004 2:30 PM CDT

O.K. I think I can do this, at least I’m going to try…..

Tara and I went to the hospital yesterday. Trey was wide open, up and playing. His catheter had been removed because there was a blockage. Now he was back to having to pee every 30 minutes or less with the severe pain. It was all blood every time he went. He is a real trooper though. He got all the playing in that he could in between times.


He had just gotten to the playroom when they came to reinsert his catheter. He started screaming as soon as they went into the treatment room. He remembered how it was last time. Misty had told me that it was going to better this time. She said they were going to sedate him. Well that didn’t happen. He was screaming and I was pacing the hallway. One of the nurses came over and told me he would be o.k., they had just given him some medication. I didn’t understand why he was still screaming. She said they gave him an amnesia type medicine. She said he’d go to sleep and never remember this happening. I still don’t totally understand what that’s all about. He still had do go through the pain and Misty had to watch while at the same time trying to hold him down. They didn’t give her any. She’s going to remember watching him suffer needlessly yet again.

As soon as they finished Misty picked him up off the table and brought him back to his bed. He ate six chicken nuggets with one eye open and was off to dreamland. By this time it was a little after 5pm. We finally got him to wake up about 10:pm. Misty want to be sure he ate something before midnight. After then he could have no more food or drink because of surgery this morning. Everything seemed to be fine for the moment. Tara and I stay another hour or more so they could play. Which they did until the grumpiness set in.

No sooner had I walked in the door and heard the answering machine. It was Misty. She hung up before I could get to it. She had left a message telling me that the catheter had to be removed again. There was a clot blocking it causing Trey severe pain. She told the nurse just to take it out She knew right then it was going to be another long night. When I talked to her this morning she said it wasn’t as bad as she had anticipated.

Trey went into surgery at 8:00 this morning. The results were not good. There is a problem with his kidneys. They placed a stint from one to his bladder. The other side was so thick they couldn’t get one through. They did not replace the catheter so he’s back to the pain when using the bathroom. They have increased his pain meds though. The Dr. said the initial results of the biopsy show that there is cancer in his bladder. They also did a bone marrow aspiration. The Dr. told Misty she didn’t see many good cells. If this is so it means no more chemo. I myself refuse to accept any of it until the official results come back the first of next week. I am an eternal optimist. I will never stop hoping. If there is even the slightest chance, well that’s a chance. Anything can happen and Trey can still get a miracle as long as he’s here on this earth. God has brought him this far for a reason.

On the other hand I am mad as crap. He’s only 5 years old. This just can’t be happening. I know life isn’t fair but come on this it just plum cruel. Please God give me the strength to be there for Misty to hold her up when she needs it. Please give us all the strength, her dad Kyle and step mom Diane too. They have really been there for Misty and Trey since this all started. I know Diane thinks of them as they were hers and love them as so. I couldn’t have picked a better step mom for my kids if I had done it myself. Diane, Thank you for loving my babies.

I need to stop and get ready to go to the hospital. PLEASE continue to PRAY for Trey’s miracle.
Please PRAY! PRAY! PRAY! And then PRAY some more….PLEASE!



God Bless us all,
Love Susie


P.S. Don't forget to sign the guestbook if it's only to HI!
Misty gets me to read the messages to her when I call. It really helps her to know so many people are praying for Trey.

Wednesday, April 7, 2004 11:59 AM CDT

I’ve read so many caringbridge pages that people start out with saying “it’s with a heavy heart I write”. I thought I knew what that meant. I didn’t, not until now. As I tried to sleep last night I could truly feel the weight on my heart. We went to Roanoke yesterday afternoon to see Trey. He wanted Tara to come see him. For those of you that don’t know Tara is Misty’s baby sister and Trey’s aunt. She was born 6 days after him. Trey and Tara are very close, almost like brother & sister.

Anyway, It takes us a little over an hour to get up there. We were about half way and Tara said “I’m going to throw up” and she did everywhere. Jeff pulled over and about that time the cell phone rings. It was Misty. I told her I was going to take them back home and come on by myself. I knew she wouldn’t want her around Trey with his counts low. I could tell she was crying as she said “No, just come on it doesn’t matter if she’s sick” She said the Dr. had just come in and told her she was almost 100% sure that it is neuroblastoma in Trey’s bladder. She said,” He wants to see her so come on.” We stopped at Wal mart in Rocky Mount, grabbed a pair of pants and shirt off the clearance rack for Tara and went on.

We arrived at the hospital, took the elevator to the 10th floor. As we started down the hallway I heard the most horrifying screams. I though what are they doing to that poor child. As we neared Trey’s room it got worse. They were in the treatment room trying to insert a catheter. I walked the hall for 30 minutes listening to him scream. He told the Dr. he had to stop. He was screaming and crying, why are you doing this to me. I heard him say, “Mama please make them stop, I can’t take this pain anymore. Misty was so clam trying to explain to him this would help his pain. She is so good with him.

When the catheter was finally in Misty carried him back to his room. The whole time he was still screaming in pain. He kept complaining about it itching inside. Not just complaining, he was in major pain. He would scream for about a minute and then it would stop for 2 to 3 minutes and then start again. This went on for a little over 2 hours. He was trying so hard not to scratch. He would grit his teeth, squeeze our hands and just scream. It was ripping my heart out. I can’t begin to imagine what it was doing to Misty. At one point he looked at her and said; “Mama why do I have to be the kid that has cancer?” She told him he wasn’t the only kid that has cancer. He said; “Why do I have to be the kid in my family to have cancer, why can’t I be normal and play like they do and not have to go to the hospital all the time.” She just looked at him and said; ‘I don’t know Trey.” A little later he said; “Mama please pray to God and tell him to take this cancer out of me and never let it come back.” As she sat on the bed beside him she held his hands and did just that.

It was 8:00 before they finally gave him something that helped. Within 20 minutes he was asleep. Misty told me he had been this way for the past 3 days only pain would come every 30 minutes instead of every 2 to 3. She said he woke up the other night screaming in pain and out of nowhere he said;” Mama it hurts so bad I just want to die right now.” He said; “I promise I’ll wait for you in heaven but I’ll be with Jesus in heaven and I want be hurting any more. She said then he dozed back off. Misty seemed to be holding up pretty good. A lot better than I had expected. She is being so strong for Trey.
She told me they might not be able to do the biopsy until tomorrow.

Please pray for this pain to go away.
Please pray there will be another reason he is hurting so bad. Please God let the Dr. be wrong this time.
Please pray for strength for Misty and Trey.

Don't forget to sign the guestbook if it's only to HI!
Misty gets me to read the messages to her when I call. It really helps her to know so many people are praying for Trey.

Thank you all for your prayers and support.
God Bless,
Granny Susie

Tuesday, April 6, 2004 1:11 PM CDT

Test results: An ultra sound was done this morning. The Dr. said she didn’t see any stones. She did say his bladder walls thicker than normal. This is not a good thing. Trey will go into surgery tomorrow. They are going to look into his bladder with a tiny camera. A biopsy will also be done at this time.

I just talked to Misty on phone. . They are going to try to put a catheter in again tonight. Please pray this can be done to relieve his pain. They have also started Trey on another pain medication and he was sleeping. Not a minute later I heard him screaming in pain. She said, “Got to go, Trey has to go to the bathroom.”

Please continue to pray for Trey to have relief from this horrible pain.

God Bless,
Granny Susie



Tuesday, April 6, 2004 5:41 AM CDT

Hey,
Trey was doing o.k. the first few days off chemo. Then it started, last Wednesday Misty noticed his urine was a pinkish color. The next day he went to the clinic for counts and the Dr. seemed to think there was nothing to worry about. He said it was probably a side effect from the chemo. They ran a few tests and saw no sign of infection. They were sent home and told not to worry. Don’t worry? He’s got to be kidding. By Saturday it was getting to be a little darker and Trey was having a little pain when he went to the bathroom. Misty had to increase his pain patch again. Sunday afternoon he started passing clots of what appeared to be blood when he tried to pee. He was admitted to Roanoke Community Hospital yesterday. They have no idea what is going on with him. The Dr. said it could be neuroblastoma in his kidney; kidney stones or maybe the chemo has done something. At this point Trey is screaming every time he has to go to the bathroom because it hurts so bad. He is having to go more frequently too. Like every 30 minutes. When he does it looks like all blood coming out. They tried to put a catheter in but it wouldn’t go. Misty said the second time they tried it came out bent in an L shape. There is something in there blocking.
PLEASE PRAY it’s just a kidney stone. He will be having a sonogram sometime today. I will update as soon as I here anything.

Please pray like you’ve never prayed before. Please God; don’t let this be more cancer growing in our sweet little Trey. Please heal his little body and take his pain away. Make this horrible monster leave his body. Please give Misty strength as she watches him go through this. Hold her in your arms and give her comfort. Amen.

Thank you all for your continued prayers and support!
God Bless,
Susie

Monday, March 29, 2004 9:03 PM CST

Hey everybody!
I’ll just pick up where I left off.

Tuesday: Chemo started around 4 p.m. It caused Trey to have the sweats. It was so bad Misty said she was changing his bedclothes every 30 minutes or so. He was still in a lot of pain so they up his fentanyl patch to 200mcg. Shortly after the pain stopped and Trey was asleep.

Wednesday: Trey slept until 4:00 in the afternoon. Misty was worried and thought he was getting too much pain meds so she asked the Dr. to reduce the dosage of his patch
Wed nite it was reduced to 150mcg. That seemed to be the perfect dose at that time.

Thursday nite while he slept his oxygen level kept dipping to 70 The alarm on the machine will go off when it goes below 90

Friday: Because of the problems with his oxygen levels Trey’s fentanyl patch was dropped to 100mcg. This seemed to be good and there was still no pain.

Saturday nite: After the last chemo treatment for this round they finally got to go home. Unlike the last chemo when he went home that was it for 2 weeks. With this one Misty has to give him a shot everyday until his counts recover. He also has some oral meds to take daily. Let me tell you Trey is not at all happy about this.

Sunday: Trey seemed o.k. No pain!

Monday: Around 3 A.M. he woke up crying in pain. Mostly complaining about his legs hurting. Misty gave him some oral pain meds and massaged his legs for 45 min waiting for them to kick in. After realizing this wasn’t working she gave him another 25 mcg patch. Around 5:30 he started feeling better. He went back to sleep around 6am. Misty stayed up another hour to monitor his breathing, which seemed to be o.k. . He slept until 11am and got up ready to roll with zero pain. He wanted 4 slices of buttered toast although his belly could hold only 2.
He had to go to dr. at 2pm for blood draws and Misty is still waiting to here how his counts are.
Trey was feeling better this afternoon and wanted to be outside. Misty took him to Mill Mountain Zoo. He said he couldn’t remember the last time he was outside. He was so happy all he did was pick up sticks in the woods. The good days are so few and far between lately. Every time Trey mentions he feels like doing something Misty seizes the moment.
Before Trey got sick they were always taking trips together on her days off. It was nothing for her to call and say hey ma, Trey and me are going somewhere, I don’t know where; call ya when I get there. They are truly best friends and love to spend time together.

Anyway we still don’t know if this chemo is doing anything or not. As for now the plan is to wait 2 weeks, do another 5-day treatment. Wait another 2 weeks and then more testing. Everything is wait and see. For right now the main concern is the pain.
Please pray that this chemo is working and the pain will go away…

Thank you & God Bless!
Susie (Trey’s granny)

Tuesday, March 23, 2004 7:45 PM

Well here’s another quickie. Misty got a call from Duke last night saying the chemo had arrived in Roanoke. They said it was up to her whether to stay there for treatment or return to Duke. She let Trey choose and the winner is…HOME.

I was wrong on the amount of time the chemo runs. He only receives it for an hour a day, but he has to be hydrated for the next 6 hours because the drugs are so strong. This means he has to be admitted and stay for the next 5 days. I spoke to Misty around 2:30 this afternoon. They had been at the hospital since early morning and still waiting for chemo. Trey was still in pain. Now wearing 2-50mg fentanyl patches and one 25 mg. Plus getting oral morphine every 2 hours. It’s going to be a long 5days in the hospital for them.

Please PRAY! PRAY! PRAY!

Love,
Trey's granny Susie


Sunday, March 21, 2004 8:45 PM
Quick update: Trey's pain has gotten really bad again. He stopped walking Friday night. Even the slightest movement for him was painful. He is now wearing 4-25mg fentanyl patches and taking morphine. This is making it a little better, but not much. He still yells every little bit and says it hurts. This is so unfair. I have never felt so helpless in my whole life. It hurts so bad to see him like this. Not to mention the pain I see in Misty’s eyes. She tries so hard to hide it from him. She is so strong. I can’t begin to tell you how proud I am of her. I love them both so much.

Trey will not start the new chemo until Tuesday. They will have to travel back to Duke for this because the hospital in Roanoke doesn’t have any of the Topotecan. Hopefully the will have some soon and they will be able to return home for treatment.

Please pray that God will ease Trey’s pain and take this horrible disease from his body.

God Bless us all!
Granny Susie



Friday, March 19, 2004 6:08 AM CST

Hi everyone,
Trey had his 2nd week of chemo. It seemed to help with the pain for the first week and then it was back again. He and Misty traveled to Duke yesterday for more test. The results were not what we wanted to hear. The chemo he is on (Irinotecan) isn’t doing what we had hoped. The week he receives the chemo and the week after it is killing some cells. Once the chemo leaves his system the cancer begins to grow again and the pain comes back. By the time he gets the next treatment he’s back where he started. So it is holding it at bay but not getting rid of any. The Dr. wants to start him on Topotecan / Cyclophosphamide Monday. He will get this for 6 hours a day, five days straight. The side effects will be a lot more sever with this type. All we can do now is Pray that this will help.

PLEASE PRAY for the side effects not to be so bad.

PLEASE PRAY this chemo works!

PLEASE PRAY for strength for Misty and Trey as this journey continues.

Thank you all for your continued prayers and support,
Granny Susie

Friday, February 27, 2004 6:45 PM CST

Hey everybody,
Sorry so long between updates. Since chemo Trey has had some bad days. It started with constipation and then diarrhea. Not to mention the throwing up in between.

His counts had started back up and then over the past few days they’ve dropped again. I think he made it through one day without a pain patch.

He had to go to Roanoke Hospital this morning for a bone marrow aspiration and a blood transfusion. This was the first time he has had to have a transfusion since chemo.

Right now he seams to be doing o.k. with a patch and is eating pretty good.

Chemo will start again Monday but this time in Roanoke. This will be easier on Misty and Trey. They can go home every night and sleep in their own beds.
He should be having scans again around the 3rd week of March. This will tell how well the chemo is working.
Please continue to pray that it will do the job..

God Bless each and every one of you!

Sunday, February 15, 2004 10:10 PM CST

Trey and Misty had a long week……

Tuesday started in clinic with blood draws. Then they were off to rainbow day for chemo. By that time his counts were in and he had to get blood. I think they got out of there around 5:30. Later that evening somehow his pic line came out. At least that’s what Trey said, "It just came out."

Wednesday was another fun one. It started with a pre opt appointment then up to the clinic. After that on to rainbow day . Trey had to have an IV line inserted before he could receive him chemo. After which he had to get platelets. Although he had been through all this he was still in good spirits. A good friend of Misty’s, Kelly who Trey adores drove down from Roanoke (almost 3hr.s) just to visit with them. He was so happy to see her. He also had a couple other visitors from home. Patty and Jason showed up as well. Thank you guys!


Thursday started early. They had to be there at 7am to get ready for surgery. Trey was having a Port-A-Cath put in. For those of you that don’t know this is a small metal chamber (1 x 1 x 1/2 inches) with a rubber top that is implanted under the skin of the left chest. A catheter threads from the metal chamber (portal) under the skin to a large vein near the collarbone, then inside the vein to the left atrium of the heart. Whenever the catheter is needed for a blood draw or infusion of drugs or fluid, a needle is inserted by a nurse through the skin and into the rubber top of the portal.
Anyway they didn’t take him in to surgery until 1:00. When he woke up he was in horrible pain. He had not received any pain meds. They had on his chart "Mother has fentanyl patch." Misty put that on him right away but it’s slow working. She had to make them call the Dr. to get him something that was going to work immediately She said Trey screamed for at least 15 minutes in excruciating pain. I can’t believe they didn’t give him something before he woke up.
Around 4pm they went up for his chemo treatment. They didn’t get out of there until 6pm.

TGIF Last day of chemo and then on the way home.

Well it’s Sunday night and I just talked to Misty. Trey was still wearing the 50mg fentanyl patch. They are suppose to last 72 hours which was up a 3pm. She said she was going to take it off and see what happen. Please pray there is no pain. She said he has fussed a little about leg pain, but nothing major. Not enough to cause her to apply another patch. He is starting to get dark circles under his eyes and doesn’t have much of an appetite We hope this is only because his counts dropping due to the chemo. Please pray there is no more pain. If he makes it all night and through the morning pain free we’ll know for sure the chemo is still working. Right now Misty is on pins and needles. So far there have been no major side effects from the chemo (Irinotecan). He has been playing and watching a lot of cartoons a big difference from last Sunday night. Oh yeah, I forgot to mention it’s snowing and he wants to go sleigh riding in the morning. First they have to go to Roanoke Hospital to have blood draw to check his counts.
If all goes well he will receive another 5-day treatment in 3 weeks. Please pray this chemo is working and will fight this monster away. God has brought him this far and I know he can heal him. We all prayed for a relief of his pain and look what God did. Praise the Lord!

I want to say Thank you to the ones who have left messages in Trey’s guestbook. You don’t know how much they mean to us. To know that so many people care and are praying for our sweet little Trey.

God Bless you all!
Susie

Tuesday, February 10, 2004 12:20 AM CST

Hey everybody, it’s Granny. I don’t know where to start. Trey had a really rough weekend and it just got worse Sunday night. He was in so much pain he couldn’t even sit up. By the time we got to Duke yesterday he would scream if you even looked at him. He wouldn’t walk so Misty found a wagon for him to ride in. We were only in the main waiting area about 10 minutes and then we were taken to a room in the back to wait some more. He was so pale. When the Dr. saw him she said " he looks like he needs blood". He had to have a pic line put in so emlia was applied to both arms. For those of you that don’t know that’s a cream that numbs the skin so it doesn’t hurt as much. While waiting for that to work he was examanied. He had 2 –25mg fentanyl patches on and had taken 2 doses of morphine before leaving home. The child was still in pain. The Dr. decided to up it to a 50mg. patch. The nurse put that on and left one of the 25’s on.

Next we moved on to have the line put in. Well if you know Trey you know he hates needles. He had to have his mom on one side and me on the other holding his hand of the arm to be stuck. We had to tell him everything that was being done step by step. He made me promise "you’ll tell me when she picks up that needle." This was the 1st time I had seen a pic line inserted. The nurse measured Trey’s arm from the crease at his elbow to his shoulder. Then she cut a ever so tiny rubber like tube to that length. She hit the vein right off then inserted this tiny piece of tube through the needle and fed it up into his arm. I think that hurt me more than him. Once that was in place she pulled a small, what appeared to be wire from the center of the tube. I guess that opened the line. She told Trey he was so brave. He said " no I wasn’t, I was scared". He was so sweet, he said " Granny did the best cause she didn’t let me move my arm".


Well, back to the room we went so blood could be drawn to check his counts. When the nurse came in he asked her what she was doing. She said " I’ve got to draw a little blood". He said "you’re not supposed to be taking my blood you’re suppose to give me some". They said his counts hadn’t dropped enough to need blood then, but he’ll probably get it today. After that we were sent to the Rainbow day hospital to start chemo. By this time the nurse said to remove the 25mg patch. He was still in a lot of pain but not quite as bad. First he had to get some type of anti-nausea meds for 15 min then the chemo (Irinotecan). the chemo was to run about an hour. After about 30 minutes he started to get hot. By the time it was done he said his legs and knees were burning. Misty ask him if they were hurting and he so no they’re just hot. He said "just fan’em". She ask if his arms still hurt, he said "NO my legs are hot". We just looked at each other thinking the same thing. Is it working? Can it work that fast? We had to wait around for about 45 minutes to be sure there were no immediate side effects. While waiting, Trey wanted to put his shoes on and get out of the bed. It was like someone had turned the lights on. He was up and walking around .He put tape on the door and wrote MOM TREY. He told the nurse not to let anyone else have his room.

We were finally released around 4:30 and were off to the Ronald McDonald house. Once inside ,Trey headed for the playroom. He wanted to build a tunnel with blocks. By this time I was holding my breath. This child who could barley move without pain 6 hours ago was ready to play. Misty told me the Dr. said she would know right off if the chemo was working or not. I was thinking she meant after a few days. Misty thought maybe it was due to the increase of the dosage in his patch. I reminded her that’s what he had this morning plus the morphine. He hadn’t had any morphine since early that morning. He hasn’t had much of an appetite for the past 2 weeks and all of a sudden he was hungry. Misty told him dinner was being prepared. He said he was starving and had to have something right now. Well, Granny found him a little something to hold him until Dinner. He ate a whole hotdog for Dinner.
He had a little leg pain last night but nothing compared to the past few days. I’m almost scared to be too excited but Idid jump up and down and shout THANK YOU GOD! PRAISE THE LORD! It was such a relief to see him playing and know he was feeling better. I want to say Thank you to everyone for all the prayers. I know God is hearing you loud and clear. Please continue to pray this drug will work and slow this monster down until a cure can be found. I am so proud of Misty and Trey. They are true heroes and I love them both with all my heart.

If you have time please visit Sarah Smith’s Spot She has the same disease as Trey. Misty and Trey met their sweet family while at Duke last week. It was a Blessing in disguise. You can read the story of on her page.
Thank you all, again for checking on Trey and PLEASE continue to pray this chemo does the job.
GOD BLESS!
Susie

Sunday, February 8, 2004 9:30 P.M. CST

Short update: Trey has been in a lot of pain today. Misty called the Dr. and they told her to increase his morphine. She became very upset when she noticed a small tumor in his neck. She called Duke again and the Dr. told her that was to be expected. She told them he was getting dark circles under his eyes and she knows he needs platelets. He just has no energy. I guess tomorrow can’t get here fast enough.

Morgan’s mom was so nice to share a prayer with us which she left in Trey’s guestbook. I have copied and pasted below. I am asking everyone that reads this to PLEASE say this prayer for him right now. Thank you so much and God Bless you all!

This is a prayer that I have prayed for Morgan many many times. It comes from a book called "Healed of Cancer" by Dodie Osteen. I will pray it for Trey now too.

O God, our Father, Your word says that You are a very present help in our time of need. I come to You now on behalf of Trey who is suffering with cancer. Father, I ask You in the Name of Jesus Christ of Nazareth, to touch him and heal him.
Distance is no problem for You, God. As I pray, You are there with Trey, even as close as the very breath his breathes. So I am asking You to touch his body and heal him.
Now, you foul disease called cancer, I speak to you. Go from Trey's body in the Name of Jesus! I command you cancerous cells to wither and die at the root in the Name of Jesus! Devil, I bind your power in Trey's life, and I permit healing to come to him now, in the Name of Jesus!
Father, I ask You to replace with new cells those that have been damaged by cancer. God, You can do that, because what is impossible with man is possible with You. You are a God who cares, and we believe You will do it just because we have asked. You love us that much.
Father, may strength and wholeness come into Trey's body this very day. Thank you Lord for doing it.
I thank you, Jesus that we will hear good reports from people who have been healed because they held fast to their confession of faith without wavering, because You are faithful who promised. Thank You Father in Jesus Name. Amen



Sunday, February 8, 2004 5:37 AM CST

Everyone PLEASE continue to pray for Trey and pass this prayer request to everyone you know.
Trey had MIBG scans last week at Duke. That was only a few days after his bone scans. The MIBG scans showed several new spots of cancer that weren't on the bone scans. Dr. Logger fears that it is very aggressive and spreading very quickly. His areas of positive disease now are left hip, left thighbone, right hip, both shoulders, both knees,and spine. The Doctor said no wonder he has been hurting!

Treys counts on Thursday were hgb 10 plt 37 wbc5.0

Due to the change in the amount of disease and his counts. There is a new plan for treatment. Trey will go back to Duke tommorrow. He will get platelets and begin the chemo NOW.
He hasnt had a port put in yet so they will do this first week of chemo with an IV.

The chemo drug that he will be getting is Irinotecan.
Hopefully this will work to atleast stop the progression of the neuroblastoma and hopefully get rid of it. It has worked for alot of kids with Treys same cancer and not at all for some.

Trey is in alot of pain right now. He has a fentanyl patch and is taking morphine by mouth.
He is having a very difficult time getting around due to the hip and spine involvement. But of course if you know Trey you know that he is still trying to fight through the pain and play.

Misty is busy searching day and night for other treatment options in case this doesnt work for Trey. If anyone knows of any other good options for relaspe please email her or leave it in the guest book.

I will update as soon as I know any more. Please pray for Misty I know she is horrified right now. She has fought so hard for Trey. I just cant even begin to know the depth of her pain and fear right now. My heart just aches for her.

As always thanks so much for all the support and prayers. They are need more than ever right now.

Wednesday, February 4, 2004 8:44 PM CST

This is so so so NOT fair!!! It's so hard to understand why little children have to endure all of this suffering. Why after a full year of the chemo, transplant, extremly painful antibody treatment is this monster already back!!
The test results are not good.
Neuroblastomia has once again attacked. It is once again in Treys bone marrow. It has also attacked his bones in several places. His right hip, his right leg, one of his arms and his ribs.
This is devastating news. I am just heart broken . I can't even imagine the depth of Misty's pain. Treys entire family is in utter shock.
After discussing treatment options with Trey's Doctor at Duke who has confered with his Doctor in New York there are only two options for treatment at this point.
Trey will begin a different type of chemo drug next week. He will have 6 hours of chemo a day for five days at a time. After 2 weeks more testing will be done. If the first drug isn't helping then he will change to the other option. This treatment can be done in Roanoke at a local hospital. Lord, Please let this treatment be the answer.
Misty and Trey had the chance to meet another little Girl today that our family has been following for a long time. She also has neuroblastomia and happened to also be at Duke the last couple of days for scans. It so happens that Misty and Trey ran into them soon after receiving the bad news today. Sarahs Mom and Dad were very helpful to Misty and took the time to pray with her. She asked that I thank them for her. God must have put them there at that moment. Misty said the chance to pray together is exactly what she needed at that moment. THANK YOU Becky and Steve for being there for her.
Please please pray for Trey. Pray that God will heal him from this terrible Cancer and also pray for Misty as she has to once again fight for her Sons life. She Loves him so much. No one should have to watch their Child go through this. Also please drop them a message in the guest book as they need all the kind words and support they can get.
God bless and keep you all and as allways thank you so much for the prays and support. I will keep you updated as I know more.
Trey and Mistys Aunt Kathy

Sunday, February 1, 2004 5:13 AM CST

Well there is some news but of course we still do not know everything.
The bone scans came out clean. Thats good news.
The other scans do not show a new tumor. Thats good news.
The bad news is that Treys counts continue to drop and he had to have blood yesterday. He also continues to have severe bone pain in his legs. Because of these symtoms the Doctors at Duke feel that its one of two things. Either the neuroblastomia cells have returned in his bone marrow or he now has leukima cells in his bone marrow. They will do a bone marrow biospy on Tuesday (I cant believe it, they have been there since Friday and have got to wait until Tuesday!!!!). The doctors wanted to go ahead and place a line for chemo. but Misty refused until she knows for sure whats going on. That will be so tramatic for Trey and she wants to be able to tell him exactly whats going on. They may actually let them go home today until Tuesday if they can get the pain under control without an IV. They put a patch with pain medicine on him last night to see how he would do with that overnight.I dont know yet how that went. Once the biospy is done they will discuss options for treatment. This is very scary! Its hard to believe that even after transplant this monster is back already.
PLEASE everyone PRAY PRAY PRAY that this isnt cancer. Treys body has been through so much! Treatment would be much more dangerous for him now. Please also pray for Misty. This is a nightmare for her.
I will update as soon as I know more. God bless and keep you all.

Friday, January 30, 2004 3:54 PM CST

This is Misty and Treys Aunt Kathy. Seems as if I am always the bearer of the bad news. Trey was admitted to the ER at Duke last night with severe leg pain to the point that he can't walk and with a high fever. This all came on him very suddenly. He had several test last night and is having scans today. What we know so far is that his counts do not look good, his pain is very severe and he is on a morphine drip.The Doctor has told Misty that relapse is almost definite. The question is to what degree.
Please pray really hard for Trey and Misty as they begin the horrible horrifing journey again. This is just sickening. I will update with the results of the test as soon as I know more. God bless and keep you all.

Saturday, January 3, 2004 11:05 AM CST

Please continue to pray for Chanda and Brian as they struggle with the loss of their beautiful little boy Jake.

Thank you for your prayers and support,
God Bless you all!

Susie, Trey's granny

P.S. No, Trey didn't get a puppy for Christmas. Well not to take home anyway. It has to live at granny's house. Our dog had seven and we're down to four. Three more to go....Anybody want one?

Monday December 22, 2003 7:47 CDT

.

Hello Everyone & MERRY CHRISTMAS!

It’s me again, Trey’s granny, Misty’s mom. Between work and Trey she doesn't have a lot of free time. Trey is still doing well. (for those of you that don't know him this means he is wide open) Trey has always been a little on the hyper side.

He went to Duke last week for more test. Misty was told he has moderate to sever hearing loss. This means he will more than likely be getting hearing aids.

He tested HAMA positive again a few weeks back, which meant no antibody treatment. He will be tested again the end of this week. Please pray the tests are negative so he can receive at least one more treatment in New York.

Trey is all excited about Santa coming. He has been doing a lot of shopping and wrapping presents.

I THANK GOD everyday that he is doing so well!

We have a special prayer request. It breaks my heart to tell you this. Trey’s buddy JAKE lost his battle with neuroblastoma Thursday night at 9:30 in his parents loving arms. Please remember them in prayer today as they have his Memorial service and also in the months ahead.


God Bless you all and...
Thanks for checking in on Trey!!!

Wednesday, October 22, 2003 7:04 AM CDT

Good Morning All

I know it's been a couple of weeks since I last updated but things have been going rather nonstop around here and quite honestly, besides a small cold last week and the horrible drying out of his face this week, Trey has been doing great.

Unfortunately, I'm now consumed by fear. Shortly after five this morning Trey woke up in tears. He kept saying how bad his leg was hurting behind his knee. NO NO NO, I'm thinking with the tears running down my face as I massaged his leg. Please let this just be a cramp I prayed. After an hour of cries and short walks up and down the hallway I think it finally started to sink in, this is probably not just a cramp....yet, don't get me wrong, I'm still praying that's the case. Another hour passes and Trey is still crying out in agony (now from both legs and knees). I get him to sit and pray with me and finally convince him that I didn't think the pain would go away until he took some medicine. It's been almost an hour now since he took it and all seems well. I only hope that it was nothing really, yet in my mind looms the fears that I can't just pretend aren't there. I keep trying to come up with reasonable explanations for the pain, but they are not coming. Trey is laying in bed watching T.V. and feeling O.K. and I'm doing nothing short of falling to pieces. Maybe I'm overreacting, and God please let that be the case, but how in the heck am I not supposed to overreact, especially when he compares the pain he's felt this morning to the pain in his legs when he was first diagnosed? I know the med should wear off no later than one or two, maybe even earlier, I'm going to keep an eye on him and his walking much more closely today. I'm also going to email the doctor. As far as I know, Trey was again HAMA neg. and is currently scheduled to be in NY on Monday morning. I'll let everyone know how things go later today. I just can't write anymore right now.

Guy's, just pray I've lost my mind and I'm simply overreacting.

Monday, October 6, 2003 3:36 PM CDT

Hi...Just wanted to let everyone know that we're back home again!!! Trey is doing very well!! It amazes me how he bounces back from the treatments so well and so quickly. He's my hero. Today was his first day taking those dang pills again. So unfortunately we get to look forward to the whole drying out of his face and lips again. The doctors have recommended using a moisturizing cream called Aquaphor. He looks like someone has smeared grease and oil all over his face and arms when he has it on but he doesn't mind (which is a miracle for "Mr. Vane") and it does seem to work well.

We will be sending more blood work to NY again on Thursday so please pray the results come back HAMA negative. (Basically this means his body is still allowing those antibodies (aka. "The hurt medicine") to do their wonder) As long as he's still negative we will return to NY on the 25th for another two weeks. I will try to keep everyone updated in the meantime on how things are going

~~~ALSO, I really want to say THANKS again to EVERYONE I work with in Roanoke and all of you at the Credit Union. You guys have no clue how much I appreciate you and all that you're doing to help us. I wish I had the words that could really express my gratitude. Please just know that you are truly wonderful and amazing and Trey and I are BLESSED to know you!!!

Wednesday, October 1, 2003 11:54 AM CDT

O.K...Where to begin...

The harbor ride on Friday was stressful in the least. Trey seemed to have forgotten what the word behave meant. He was all over the boat nonstop. Needless to say I was so happy when we returned to the dock, but I have to tell you..the views of Manhattan from the water were just AMAZING!

Trey and I went to a football game with the RMH on Sunday. It was really great, Jets and My boys (Cowboys). We were in the skybox the entire game. I don't know which one of us enjoyed it the most. Trey ate and played and when we opened one of the windows he started yelling to the players. He somehow decided he was now going to be an official Jets fan.((where did I go wrong???)) He really did have a blast and he ended up being pretty wired that entire night.

Which now brings us to Monday...yuck yuck yuck! Actually the day went O.K., as did Tuesday. There was pain and there were hives and then we left.

Trey wanted to go to the toy store yesterday so we ended up walking halfway to the moon when all of a sudden he decided he didn't want to go there anymore. We ended up at some Halloween shop where I was lucky enough to lose my cell phone. Unfortunately the day didn't get that much better...but...there's always tomorrow right?

That's where we are now..tomorrow. So far the day has gone fairly well. Trey had his line taken out before antibodies this morning. I was a little worried, O.K. a lot worried, but things went well. He was so happy when he woke up. That is, until he realized they didn't save the line for him to bring home. Eww. Eww. Eww. I mean he actually wanted the nasty thing. He cried about it for a few minutes but then it was soon forgotten... and hopefully for good! (if you know what I mean).

Antibodies proved to be unforgiving today. It took a little longer for Trey to start feeling the pain and just as I was starting to wonder if he would be lucky enough to scrape by unscathed, WHAM!!!!!!!!! The worst part about it is as soon as the pain started to let up and we thought it was finally coming to an end, Wham--right back at him again! This horrible cycle went on for 40 minutes. By the time it was finally over, Trey was extremely exhausted. He slept most of the way back to the RMH.

Yet, he's now running around full speed!!! It's like he has all this energy now. Even more than normal...if that's at all possible. He wants another PB&J sandwich..which will make his 3rd in less than an hour!

Thanks for coming by and checking up on how things are going.


(Wednesday, October 1, 2003 6:54 PM CDT)

Hey Everybody,
It’s Susie, Misty’s mom and Trey’s granny. Thought I’d try to sneak in here and leave a little note to let you know tomorrow Thursday Oct. 2nd is her Birthday!

Friday, September 26, 2003 3:07 PM CDT

Hi everyone

One week down..one to go. Although the days seemed so long, the week here has flown by.

Before treatment this morning Trey was chosen to be the "playroom helper". Basically this meant he got to hand out fliers to all the children in the waiting room and to the patients back in the bed area. He really enjoyed it, especially getting the official playroom helper sticker to wear after he was done.

Treatment was next...and I think you guys know or have heard what that's like. There were no unexpected side effects today.

Afterwards, Trey's teacher here in New York spent an hour or so with him.(Yes, they told me I needed to register him in school here as well.) I waited in the waiting room because I didn't want to distract him. When they came back she said he did very well writing his alphabet and she will see us again Monday morning.

We're now back at the RMH. Trey sadly said good-bye to Laura today--(whom he fondly refers to as Dora). She just finished her second week and is on her way back home to Massachusetts. Laura became one of Trey's favorite friends this week and he hated that she had to go home.

There's so much more I want to write but we plan on leaving to go on a harbor ride in a few minutes. I'll update on how that goes later, but for now I need to see if I can run across the street and get a camera before we leave.

Thanks so much for keeping Trey and all these kids in your prayers. I don't know how we could do it without such support!!!

Misty

Wednesday, September 24, 2003 4:52 PM CDT

Today's clinic visit wasn't too bad for Trey---yet I don't feel like any of these days can reasonably be classified as good. The pain was intense...but didn't last too long. Some clowns came in for a bit and I think that helped to get his mind off of things...they sang a really silly lullaby for him and he actually fell asleep. It was unexpected and nice.

However, Trey's "roommate"(the most adorable 8yr old I've ever met) had a rough bout with her pain today, so one of the older teenage girls came in to try and help her deal with it. She was letting her know how strong she was because she too has to deal with all this BS. To hear the two bond in such a way may have been one of the most touching things I've ever experienced. They were both in tears before it was over...the whole room was in tears.

I'm amazed everyday by these kids.

Tuesday, September 23, 2003 5:38 PM CDT

Whew!!! Day 2 of antibodies is now under our belt.

Again, Trey’s pain was pretty intense. It lasted a good while today. In the midst of the pain Trey started repeating something over and over to himself. I couldn’t understand him so I asked what he was saying. He told me he was trying to do what his papa wanted. He kept repeating to himself over and over, “BE TOUGH TREY.” “BE TOUGH TREY.” “BE TOUGH TREY.” If he only knew exactly how tough he really is. Although he does scream and cry, he walks back in there every morning without any whining or resisting. I wonder if he tells himself to “BE TOUGH” on the way to the hospital.
He did have another side effect today that he hadn’t experienced before. His lips became very swollen. He told me that it felt like his lips were getting too big for him. I didn’t know what he was talking about and then that’s when I started noticing them getting bigger and BIGGER and BIGGER. He said they hurt and were burning. He also wanted a mirror. I didn’t want to give him one at first because I thought he might cry more after actually seeing them. Yet, he wouldn’t let up. Finally after asking me 50 more times I found him a mirror. The first thing he did was smile, and then he smiled larger and then he laughed so hard and for so long I had to laugh too. It did look a bit silly. He told me he never saw his lips touch his neck before. Then he laughed more. “I hope they don’t get stuck under my nose either. How am I going pick it now?” ---(Yeah I know…gross…but that’s my Trey.)
We left just after that and we’ve been at the RMH since. It has been pretty rainy in the city today so we stuck to the room. I was tired and fell asleep for about an hour, which, come to find out, was long enough for Trey to turn it into a total disaster area. It seemed to take forever to clean it up…especially getting the lipstick “TREY” off the wall and the melted chocolate out of my shoe.
He’s playing jungle in the playroom now and keeps asking me when I’m coming to join him…so I should go before I find he’s painted the animals…Trust me…it can happen! Bye

Monday, September 22, 2003 11:25 AM CDT

Hi everyone! We made it to New York with no problems. Thanks Dad!!! We just got back to the RMH after finishing today’s treatment. Trey experienced quite a bit of pain this morning along with those not so photogenic hives. The crying and screaming lasted about 15 min. followed by a half hour of grunts and groans. I so wish it didn’t have to be this freaking’ horrible for him. He hates it---I hate it. Damn this cancer!!!

NO..I’m not going to go there now!

So, on a much more pleasant note… I talked to Dr. Kushner this morning, and he confirmed that Trey’s tests were clear; although, he did mention there were a few more tests they need to run next week. I asked him again about having Trey’s lines taken out some time in the near future and by what I could tell from his response, he could be having them taken out as early as next Wednesday!! This, Trey and I still need to discuss because for all the pros about having them out (swimming, showers, no risk of infections) there’s one major con. (The biggie for Trey.) NEEDLESTICKS !!! So we’ll see.

Things are, so far not too bad here. Everyone,please do continue to hold all these wonderful children in your prayers. They are true fighters!

WAY TO GO JOSHUA!!!…I was just told he is also currently NED. (no evidence detected) Visit his site @ www.caringbridge.org/sc/joshua

Sunday, September 21, 2003 6:30 AM CDT

Trey and Misty head back to New York today to begin another round of treatment. He has had a good couple of weeks off. He has started Kindergarten via home schooling. If all goes well ,he will be able to start real school in a few months.
He is very excited about that. Last weekend Mistys Brother K.K. was married in Gatlinburg. Trey was the ring bearer.
I have posted pictures of the trip in the photo album.
He is so cute with his new hair, and tux.
Please continue to pray for Trey and Misty as they travel to New York this week. Pray for their saftey and that the treatment will not be so rough on Trey.
As always please continue to pray that the cancer will not return and for all the other families enduring this battle. Don't forget to check out the NEW PHOTOS!!

Saturday, September 6, 2003 5:24 AM CDT

After almost a year of not so great news, I finally get to tell you all that God has performed the Miracle that we have all been looking for. The scans and test done in New York show Treys little body totally Neuroblastomia FREE. Yes, you heard me right!!!!!!! There is no sign of the cancer on bones, organs or in his marrow !!!! Thank you Jesus, Thank you Jesus, Thank you Jesus !!!!!
After telling her Mom the good news Misty also told a story of how during the wait for the news that God came to her in his own way and told her that Trey would be healed. He also ask her to make sure that he received the glory!!
Hopefully this means that God has healed Trey forever. This Cancer is very prone to return and does so in most cases.
I personally choose to beleive that if God gave Misty that message it means forever!!!
Trey will have to continue to go to New York over the next two years for the antibody treatments which should also help keep the Cancer at bay.
Misty had ask me a couple of days ago to let her update the site herself this time to share this great news but she just hasn't had the chance and she knew alot of people were waiting to hear the results of the test. Hopefully she will share the full story and more details when she gets the chance.
I would like to offer a huge Thank you to everyone who has prayed for, checked on, and supported Misty and Trey in any way. YOUR love, support and prayers mean so very very much.
There have been several people at my work at SECU that have been so diligent in helping and praying. I've always known that I work with wonderful caring people. This has just made me even more appreciative. I love you all!!! THANK YOU for your continued support.
Misty has a great group at the post office in Roanoke that have also been very faithful. I know she appreciates you very much!
This journey isn't over for them there are still alot of treatments and trips and outstanding medical bills so please continue to pray and support them. It means so very much.
Misty, honey you are SUPER MOM!!!!! You so deserved to hear those words (Cancer Free) God has truly blessed you and Trey. Your family is soo very proud of you. Trey is so very lucky to have such a great,strong Mom.

To all the staff and Doctors at Duke and Sloan Kettering. Thank you soooo much for working so hard to fight this cancer. Without your dedication and hard work these kids would not have a chance. I have a whole new respect for what you people do everyday.

Please continue to pray for Trey and Misty as they continue to fight to keep this cancer at bay.
Also, Please remember all of the other children fighting this battle and their families. There are so many of them.
Thanks again for all the support! GOD BLESS YOU ALL!!!!!
GOOOOOOOO TREY!!!!!!!!!!!!!!!!!

Tuesday, September 2, 2003 10:47 AM CDT

Trey has completed his second round of antibody treatment. He and Misty are back in Roanoke until the next round. They will have a 3 week break. I know they are glad to be at home. They also did some scans and other test at the end of this last round to see where things stand but Misty hasn't received the results from those yet.
Please pray that the test results are positive and that the treatment is doing a good job on the cancer.
Please also continue to pray for the other families fighting this battle!

Sunday, August 24, 2003 5:41 AM CDT

Trey has made it through another week of treatment. He was able to tolerate the pain a little better this week due to a change in his pain meds. He was switched from Morphine to Dilaudid. Misty said that although the new drug seems to lessen the pain it also causes severe swelling in Trey. The swelling doesn't seem to bother him too bad so she choose the less painful route.
I have had Trey and his suffering on my mind alot this week. I have had the stomach flu. I couldn't help but think of Trey and how many times this year he has had to feel that way and worse. I have had the comfort of knowing that in a few days I would be better and all this would go away. What if I didn't know that? How can these little Kids go through this for months and years even ?
Please pray for Trey as he continues to fight this battle like the little trooper he is and for Misty as she fights along with him wishing it were her suffering and not her Child.
Lord, be with them and every other family fighting this battle!

Tuesday, August 19, 2003 5:35 AM CDT

Trey and Misty are back in New york. Trey began his 2nd round of the antibody treatments yesterday. They will be there for atleast 2 weeks. Im so glad they missed the big blackout. I know that would have been miserable for them.
Trey really enjoyed being at home and visiting with his family.
The Doctors in New York haven't done any scans yet so we are not sure how well this treatment is working. Misty has been told that they may do them after this round of treatment.
Please pray that this painful treatment is worth it and will rid Trey of this horrible cancer forever.
Also, continue to pray for Misty as she endures this battle with her Son. Remember all the the sick kids and their parents, they go through sooo much!

Friday, August 8, 2003 9:00 AM CDT

Trey and Misty arrived safely at home Wed. night for a much deserved break from treatment. Misty is back to work for a couple of days and Trey is spending some time with his Papa Kyle. I know they are happy to be HOME!!! even if its only for a couple of weeks. Please continue to pray for Treys complete healing!! Thanks, as always for the Love, Prayers and Support.

Monday, August 4, 2003 11:38 AM CDT

Trey has two more days of radiation and then he and Misty will be on their way home for a couple of weeks. They will leave NY either Tuesday evening or Wed. morning. I know they will be glad to be home.
They will return to New York on the 18th to begin two more weeks of antibody treatment.
Please pray for there safety as they travel. As always, pray for Treys complete healing and for the other Children and their Parents fighting this battle. Thanks so much for the support and prayers!

Tuesday, July 29, 2003 10:30 AM CDT

I'm sorry I haven't updated in the last few days. I am moving this week and my life is nuts right now.
Anyways, Trey is receiving radiation treatments this week. They aren't as painful but do make him a little sick.
He and Misty have been able to do some site seeing. They were even able to go to a major league baseball game over the weekend. Thanks as always for all the prayers and support. A special THANKS to Treys Angels who are so dedicated to doing nice things for him. Your kindness means so much.

Wednesday, July 23, 2003 6:02 AM CDT

Trey had a wonderful Birthday weekend! The Ronald Mcdonald house had a party for him on Saturday. He got lots of great stuff. He even got his own cell phone from his Papa so he could call home whenever he wants.There was also a carnival at the Ronald Mcdonald house on Saturday so that made it extra special. Thanks so much to those of you who took the time to send Trey a card or gift!
Well, the party's over now and its back to those yucky treatments. Please continue to Pray for Trey as he endures the pain this week. Also continue to keep all the other kids in your prayers as well.

Friday, July 18, 2003 4:20 AM CDT

Trey continues to have his antibody treatments daily and they continue to be extremly painful. Misty says the difference from day to day is where the pain is located. It seems to move around to different parts of his body. She said the intense pain is about 40 minutes. After the 1 and 1/2 hour treatment he sleeps the morphine off for several hours and then he is good to go again. This is one tough little kid we've got here !!!!
He will have a much needed break this weekend and resume the treatments on Monday. Im so glad that his Birthday is on Saturday so that he has that day off. Treys Papa Kyle and Grandma Diane will be in New York with them for the next couple days so that they can celebrate Treys Birthday with him. Im so glad that they can go. They have been so faithful to visit Trey and to helping Misty with his treatment. God bless you both. I don't know what she would do without you.
Please continue to pray that these treatments will do the job and free Trey and all the other Children from this nasty Cancer!
Please leave Trey a Birthday message as I know it will be difficult to be away from most of his family and friends tommorrow.
HAPPY BIRTHDAY BUDDY!!!!!!!!!!!!!!

Tuesday, July 15, 2003 9:37 AM CDT

The word from New York is that the antibody treatment SUCKS!!!! Misty said she has never seen Trey in so much pain. Most of his pain was localized to his stomach. He also broke out all over in little blisters. The good news is that the Doctor told Misty that in most Kids the pain will lessen some with each treatment as they develop a tolerance for the antibodies. Please pray that the pain will be less today and for all of the other Kids going through this nightmare. Pray that this treatment does the job of ridding the cancer forever for everyone of them. Please if you can send Trey a Birthday card. His B/D is Saturday !!!

Attn: Johhny Roberts (Trey)
405 east 73rd street
room # 709
New York, NY 10021

I hope this will help everyone better understand the treatment Trey is undergoing in New York! Information from the Sloan Kettering website.

What is the theory behind antibody therapy?

All of us fight bacteria and viruses with our immune system, which is made up of cells and antibodies. Antibody seeks out what it views as harmful to the body and destroys it. Chemotherapy does not select for tumor cells. It, therefore, destroys a substantial part of the immune system, diminishing the body’s ability to fight well. When we administer antibodies, they travel in blood and visit various organs to find the residual tumor cells and to eliminate them. Antibody relies on the body’s white cells and complement proteins to fight tumors. As the body regenerates its immune system following chemotherapy, it can be taught to fight these tumors on its own.

What is 3F8?

3F8 is the name of a substance called a monoclonal antibody. It attaches to GD2, which is a marker on the surface of neuroblastoma cells. 3F8 is produced by white blood cells of mice, and it must be carefully prepared for use in people.

How does 3F8 work?

When 3F8 is injected into the bloodstream of patients, it travels to sites of neuroblastoma and attaches to the GD2 marker on neuroblastoma cells. The attachment of 3F8 to a neuroblastoma cell serves as a signal to the patient's own immune system (for example, the white blood cells) to attack the neuroblastoma and kill it. In other words, the 3F8 focuses the patient's own immune system (which usually acts only to control infections) against the neuroblastoma.

Chemotherapy weakens the immune system. With time, as the body's own immune system becomes stronger, 3F8 treatments may help the body learn to fight tumors on its own.

How do we know 3F8 gets to neuroblastoma in patients?
We have attached a radioactive isotope (131-iodine, which is also used for metaiodobenzylguanidine [MIBG] scans) to 3F8 and injected the 131-iodine-3F8 into patients. Then, when patients are scanned (just like with a bone scan or MIBG scan), we see radioactivity (from the 131-iodine-3F8) in areas we know contain neuroblastoma but not in other areas in the body.

How long have 3F8 treatments been used?

Since 1986, more than 5,000 infusions of 3F8 have been safely used in more than 200 patients.

How is 3F8 given?

3F8 is given intravenously (IV) over 1 1/2 hours through a Broviac, Hickman, MediPort, or peripheral line. When being treated with 3F8, patients usually need to be in the clinic for 3 to 4 hours. This period includes about 30 minutes for giving medicines to prevent possible side effects, the 1 1/2-hour 3F8 treatment, and approximately 1 to 2 hours to monitor the patient for late side effects.

What are the common side effects of 3F8?

Pain is the main side effect and it occurs in all patients. The second most common side effect is rash (hives, with itching), which is an allergic reaction. Pain can lead to a fast pulse (rapid heart rate) and sometimes causes high blood pressure for a short period. Less-common side effects include fever, vomiting, and diarrhea. These problems can usually be taken care of in the outpatient clinic but sometimes a patient needs to be admitted to the hospital for an overnight stay. In the neuroblastoma outpatient clinic at Memorial Sloan-Kettering, we routinely treat 10 to 12 patients a day with 3F8, and manage side effects of the treatment without much difficulty.

Why does 3F8 cause pain?

3F8 attaches to GD2, which is present on some nerve cells as well as on neuroblastoma cells. When 3F8 attaches to a nerve cell, a message is sent to the brain, and the patient feels pain. The pain usually starts toward the middle or end of the daily 3F8 treatment and lasts a short time (usually from a few minutes up to an hour) and does not last for the full 1 and 1/2 hours of treatment. Sometimes discomfort or minimal pain continues during the hours or even days after the treatment. We use medicines to prevent or control the pain (usually morphine or Dilaudid) and the allergic reactions (usually Benadryl or Vistaril). Ativan and Zofran are other medicines that can help.

We have followed patients who were treated with 3F8 beginning in 1986, and we have not seen any permanent side effects on their nerves.

What is HAMA?

HAMA stands for "human anti-mouse antibodies." HAMA measures how strongly the body's immune system is reacting to 3F8. 3F8, like most monoclonal antibodies, comes from a mouse white blood cell; this means that 3F8 looks different from a human antibody and a human will form antibodies (HAMA) against 3F8. If a patient has HAMA, there is no point in administering 3F8 treatments because the HAMA will block the 3F8 from getting to neuroblastoma cells. However, HAMA can disappear; when that happens, we can resume 3F8 treatments. We check for HAMA by a blood test. Patients with HAMA do not have pain or other side effects of 3F8 treatment, but patients without side effects sometimes do not have HAMA (and can continue to be treated with 3F8).

Is HAMA good or bad?

HAMA might be a sign that a patient is developing an immune response against the neuroblastoma -- and that is a good thing. It is probably best that a patient receive at least four cycles of 3F8 treatments.

Most patients who have received chemotherapy only a short time before 3F8 treatment do not make HAMA because their immune system is too weak. In Memorial Sloan-Kettering's protocols, our aim is to give repeated treatments with 3F8 until HAMA is made. It appears that the best chances for cure exist when multiple cycles of 3F8 treatment are given and the patient begins to form HAMA. We continue to study HAMA to gain a better understanding of its role.

Is 3F8 made at Memorial Sloan-Kettering?

No. An outside company produces it for us under GMP (good manufacturing practice) conditions. Private funding is needed to pay for the production of 3F8 and for carrying out tests to meet the many safety requirements of the government. We do not charge our patients for 3F8. While we have been successful in securing government (grant) funding for much of our laboratory science, these agencies do not support the manufacturing process.


When are patients eligible for treatment with 3F8?

We have 3F8 protocols for almost any patient who has high-risk neuroblastoma -- as long as the cancer is not rapidly growing and there are no large tumor masses. Memorial Sloan-Kettering and other institutions have found that antibody treatments are not effective against rapidly growing disease or very large tumor masses. [See our online clinical trial database for eligibility criteria and other information about specific protocols.]

Are there other treatment options for neuroblastoma besides N8 or 3F8 at Memorial Sloan-Kettering?

There are a number of phase I and phase II studies under way, as well as oral chemotherapy. See our online clinical trial database for current information.

Which treatment is right for my child?

At Memorial Sloan-Kettering's Neuroblastoma Program, we evaluate each patient individually and evaluate treatment options together with the child's family to determine which kind of therapy may be best.

Monday, July 14, 2003 9:49 AM CDT

Today Trey will have his first antibody treatment. Misty talked to Jakes Mom yesterday. He is currently going through the treatment. She told Misty that this treatment is the worst of the worst. Please pray that Trey won't suffer too badly today.
Opps! Treys Birthday is actually Saturday the 19th ,sorry I goofed on the last entry.
The address for Trey and Misty in NY is:
Attn: Johhny Roberts (Trey)
405 east 73rd street
room # 709
New York, NY 10021. This is the address for the Ronald Mcdonald house.
Please send him a card if you can !!
Please continue to pray for Trey and all the other kids and there families suffering through this treatment.

Saturday, July 12, 2003 5:11 AM CDT

Trey and Misty arrived safely in New York on Thursday.
They have been busy getting settled at the Ronald Mcdonald House and getting ready for Trey to begin his treatment.
Please everyone join me in praying that this Treatment will remove the remaining cancer from his little body. Please also pray that the pain is not so severe. I follow several kids that are currently receiving this treament. They describe it is very painful. I so hate that for these kids!!! How much should a little Child have to endure!!!!
Please remember also all the other families going through this CANCER NIGHTMARE with there children.
As always thank you all so very much for the support and prayers it means so much! I will try and get the address in New York and post it so maybe those of you how would like to send Trey a Birthday card can. His Birthday is on the 18th.

Monday, July 7, 2003 1:22 PM CDT

Trey and Misty are now back in Durham. They will leave Wed. morning for New York where Trey will receive the 3f8 antibody treatment. They will be in N.Y. for about 8 weeks. The hope is that the antibody treatment will get rid of the remaining spot of cancer in Treys leg and keep this cancer from returning. Please pray that their trip is a safe one.

This treatment is a painful long process. Please pray for Trey as he endures it and for strength for Misty as she continues to fight this battle with him.
As always remember all the other kids fighting this battle.

Wednesday, July 2, 2003 5:51 AM CDT

Well there is some news from New York. Its not as good as we had hoped. Even with all the chemo, surgery and the transplant that Trey has been through there is still some cancer remaining in his leg. The Doctors in New York were able to see it on bone scans. Misty now has to make a decision. Duke doctors recommend radiation. The Doctors in New York recommend that he go forward with the antibody treatment very soon so that the cancer in his leg doesn't spread back to his marrow. I know this is very hard for her. I wish there was just a simple answer that would just get rid of it all forever!!!! So, Im not sure what the plan is right now. I'll talk with her somtime today and get more details.
Everyone please pray really really hard that treatment can get Trey to complete remisson!!! He and Misty have been through so much. Its just not fair!!! Please pray for his complete healing.
Thanks so much for all the support and prayers. Please continue to remember all the other children fighting cancer.

Saturday, June 28, 2003 7:52 AM CDT

Trey and Misty are back at the apartment in Durham. Misty still hasn't been told the results of all the test done in New York. She should get a call from the Doctors there early in the week. PLEASE PRAY PRAY PRAY that the results show no cancer and that Trey can receive the antibody treatment. Thank you everyone for the continued support and prayers.

Wednesday, June 25, 2003 12:06 AM CDT

There is not alot of news to tell yet. Trey and Misty have been at the hospital all day both days. Monday the Doctor reviewed all of Treys records and scans that were sent from Duke with Misty. Yesterday they began their own testing. They were to be back at the hospital at 8 am this morning.
They are staying at the Ronald Mcdonald house. Please pray that all of the test results are good ones and that Trey can receive the antibodies.

Monday, June 23, 2003 5:59 AM CDT

Trey and Misty arrived safely in New York last night. I'm sure it was a long hard trip. Misty drove because Trey doesn't like airplanes. Her Dad and stepmom also made the trip to be with them for the next few days. Trey will begin testing and scans today. These test will determine if Trey is currently cancer free or if there is still NB cells in his marrow. I am so proud of Misty for taking every single step possible to make sure that Trey survives this horrible cancer. She has done alot of research on her own and learned every possible avenue to save her child. I feel really good about Trey being at Sloan Kettering. There is a whole team of Doctors there that treat only Neuroblastoma.
They offer a antibody treatment that was developed there. This treatment has been effective in keeping neuroblastoma at bay. This cancer very often returns even after bone marrow transplant. This treatment hopefully will keep this from happening to Trey. So, we need lots and lots of prayers this week. Please pray that Treys scans and test show him to be cancer free at this point. Pray that he is a good canidate for the antibody treatment. Please also pray for their safety while in New York. Also, pray for the other families fighting for there own childrens lives.
Misty ask me to express her graditude to her fellow employees at the post office in Roanoke for their very succesful bake sale fund raiser last week. Thank you Kelly Richards, Debbie Kessler, and Patty Charlton for all your hard work to make the bake sale such a success. We are very grateful. It means so much to have such kind people helping out.
The State employees Credit union employees in Cary continue to add to Treys funds every single day. They have been so faithful in their fund raising. Please know how grateful we are and that you helped make this trip to New york possible. THANK YOU eveyone for all of your support and prayers it means so much!!!!

Thursday, June 19, 2003 7:26 AM CDT

Trey and Misty are still in Durham. They will be in clinic today. Trey continues to do well. Misty and the Doctors at Duke are in touch with the Doctors at Sloan Kettering to prepare for Treys next step in treatment the 3f8 antibody that he will receive in New York.
Please pray that Treys scans will determine that he is now cancer free and ready for the antibody treatment.
Thank you all so much for the prayers and support.
A very special THANK YOU to the fellow employees of Treys Papa Jeff at Goodyear in Danville. Thank you so much for the cards,prayers and collection efforts to help with the never ending expenses.

Tuesday, June 10, 2003 11:25 AM CDT

Trey and Misty continue to stay in Durham and make that daily trip to clinic. The days are very long for them as they spend most of their time waiting for test and to see the Doctor. Treys counts are continuing to come up. So far so good. Misty is currently talking to the Doctors at Sloan-Kettering hospital in New York about Trey receiving an antibody treatment that is supposed to help keep the cancer from returning. If all goes well they will head to New York at the end of the month to begin testing for this treatment. Please continue to pray for Trey and Misty as they endure this journey.

Thursday, June 5, 2003 7:35 AM CDT

Trey and Misty are now moved into the apartment. They still have to go to clinic everyday and stay pretty much in isolation. Trey can only go outside for a few minutes a day and his contact with people must be very limited. His white count had gone up alot until the last couple of days. It has actually started to drop some. Misty says the Doctors don't seem overly concerned. Please continue to pray for Treys complete recovery and strength for Misty to be able to continue to fight this long ,hard battle for her Sons life.

Monday, June 2, 2003 8:43 AM CDT

Treys counts have continued to go up over the weekend. His mouth sores are much better. He still has some tummy problems but overall he feels much much better.
Misty was told over the weekend that they would be able to leave the hospital today! She made all of the arrangements to move to the apartment there in Durham. She and Trey were very excited to be able to break out of the unit today only to be told this morning that Treys meds etc would not be ready for them to go. So to their disappointment they can't leave until tommorrow. They will remain in Durham for about another month and will have long daily clinic visits. Trey will be very limited to the amount of time he can spend outside of the Apt. and the number of people he can come in contact with.
Thank you so much for all the prayers and support!!! Please continue to pray for Treys full recovery and all the other sick children and there families.

Thursday, May 29, 2003 11:35 AM CDT

GOOD NEWS!!!!!! TREYS COUNTS HAVE BEGUN TO RECOVER!!!!!!
His White count is at 1.6 today. Thank you Lord !!!!. He is growing cells!!! Yeah!!!!!! GROW CELLS GROW!!!!!!!
He is also feeling a little better today. Please continue to pray for his counts to keep going up and for his full recover.
Also, please keep the other kids on the unit in your prayers.

Tuesday, May 27, 2003 4:57 AM CDT

Trey is feeling a little better. He did get out of bed and move around some yesterday. Hopefully this is a good sign. Maybe he has started to grow cells. We should know more today. His mouth is worse than its been. The Doctors told Misty those sores probably go all the way to his stomach. They are affecting his speech. The good news is once is white counts up they will go away very quickly. Please continue to pray for his cells to grow!!!!! and for Treys complete recovery. Thanks so much for all the prayers and guest book entries.

Monday, May 26, 2003 5:36 AM CDT

Trey continues to feel pretty yucky. He still has the mouth sores, nausea, and lack of energy that come along with the low white count. Hopefully this will all change in the next couple of days. His counts should start to go up. There have been a couple of children pass away on the unit this week. Please keep their families in your prayers.
Please pray for Treys counts to rise and continued strength for Misty. It has got to be so difficult to watch your child suffer so much. No child should have to endure this brutal treatment !!!

Wednesday, May 21, 2003 1:39 PM CDT

Trey has had a pretty tough last couple of days. He has been spiking a fever. Fever sometimes comes with the intense chemo but he has been put back on antibiotics as a precaution. He has really bad blisters in his mouth and throat. He hasn't eaten anything in several days now. Misty said he pretty much slept or just layed in bed yesterday.
Today he has a little more energy. Please continue to pray that Treys white count begins to recover and those cells start to grow grow grow in the next few days!! As always Thanks for all the prayers and support!!!

Saturday, May 17, 2003 7:07 AM CDT

Trey has received his transplant!!!!! Misty said there wasn't alot to it. Just a little IV bag with what looked like blood was given to him for a few hours and yes it really does make the whole room smell like cream corn cooking !!!! Trey is feeling a little rough much like after some of his earlier chemo treatments. He can't eat because of the mouth sores and is on TPN (IV nutriton). This is a very critical time his counts and immune system are very low. At this stage we just wait for the stem cells to grow into new health bone marrow. We have lots to pray about folks:
Pray that Trey feels better and can soon eat on his on.
Pray that his counts will soon begin to come back up.
Pray that the antibotics take care of this infection.
Pray for strength for Misty to endure this tough stage of Treys treatment.
Please pray very hard that his cells GROW GROW GROW !!!!!!!
Also remember all the other children there families fighting this battle.

Thursday, May 15, 2003 7:56 AM CDT

Trey is finished with his chemo. and is starting the downhill slide to very low counts. His white counts are already very low. He has slowed down alot and has been sick. He also has bad mouth sores. I just talked to him on the phone. He sounded so pitiful. I just hate he is having to go through all this. The infection test came back only in one of his lines. The doctors do not seem very concerned about it at this time(Thank you Lord!). He will stay on the antibotics.
Please continue to Pray for Trey and Misty during this critical time.

Monday, May 12, 2003 10:49 AM CDT

I know everyone is waiting on an update on Treys infection.
I talked to Misty just a little while ago. She still hasn't been given any results as to what type of infection Trey has. Hopefully this will come today. Trey is still feeling Ok and continues to be very entergetic. He is a handful for Misty right now. He does not like being confined!!!
Of course in another day or two the chemo will start taking its toll and certainly slow him down. I'm sure she had rather chase him around than see him sick. Please continue to pray that the infection is nothing serious. Please also pray for the other children on 5200 transplant unit and there families.

Saturday, May 10, 2003 6:21 PM CDT

I know I ask for prayers everytime I make a Journal entry. Today I ask you to Pray Pray Pray Pray Pray as long and hard as you can. Trey is on his Third day of chemo today. When blood was drawn for testing today. It tested positive for infection!! This could be very very dangerous at this point in the intense chemo he is receiving. The test have not yet been completed to determine what type of infection.
He has been started on intervenous antibotics. Please pray that They can get rid of this infection. Treys body cant fight this infection at this point in his treatment. This is very serious!!! Thank you all so much for your prayers and support. I will update as soon as I know anything further.

Thursday, May 8, 2003 9:22 AM CDT

I can finally tell you that Trey is on his way to transplant. Misty got the call from Duke this morning to be at there at 3:00 this afternoon for admission to the 5200 Transplant unit today. The first part of treatment will be 4 days of very intense chemo to completely kill all of his bone marrow. The next step will be for him to receive his own stem cells back that will create new hopefully NB free bone marrow.
Trey really really needs your prayers now. Please pray that his body can handle these very strong drugs and that the transplant is a complete success. Please also continue to pray for strength and faith for Misty. This is a very tough phase of treatment. They will be in isolation for some time. I know it will be really hard for her to see him go through this. So please PRAY PRAY PRAY. Thanks so much for alll the prayers and support.

Friday, May 2, 2003 11:01 AM CDT

Unfortunatly, I can't tell you that Trey was admitted yesterday. The Doctors have decided that he needs still more testing. He and Misty will return to Duke early next week in hopes of being admitted by mid-week. Please continue to pray that this can happen soon for him. Its hard to understand all the delays but I know in my heart that it is just another part of Gods overall plan for Trey. He is feeling good right now and is his usual full of energy self.
I know this waiting is extermely hard on Misty. Please continue to pray for her strength, patience and faith that Trey will be completely healed.

Monday, April 28, 2003 10:56 AM CDT

Once again Trey is at home. They were told to come back this Thursday with bags packed in hopes of being admitted once a couple of test are done. Hopefully Thursday will be the big day !!! Please pray that no problems are found to keep him from beginning this stage of treatment.

Wednesday, April 23, 2003 5:45 AM CDT

Once again Trey and Misty were sent back home after the testing. They go back to Duke on Friday for more testing.
Please pray that his little body is now prepared for the stem cell transplant. Misty was told that it is a possibility that he will be admitted to the bone marrow transplant unit on Monday if all goes well with the test on Friday. Please pray really hard that he can move on with this next step in treatment next week. Neuroblastomia is a very agressive cancer. It is very important that his treatment continue to be aggressive as well. So PRAY PRAY PRAY!!!!!!!

Tuesday, April 15, 2003 10:37 AM CDT

Well, Trey had more test yesterday at Duke and once again was sent back home for another week. The virus showed up in his blood stream again this time. The good news is that his white count was up enough that the shots can be stopped for now. Please pray really hard that this virus will leave his system before he returns next week. It is very important that he can move ahead with the transplant.
Thanks for the prayers and support.

Saturday, April 12, 2003 5:01 AM CDT

There is not a lot to update on. Trey is still at home. Misty has to draw blood from his line and take it to the hospital for testing. When his white count is high enough he will be admitted to Duke for his transplant. Trey got a very special surprise this week. He was invited to a meeting of several local Boy Scout troops. He was made an honory Cub Scout. Misty said he was really shy while they were there but really excited about becoming a Scout. A big Thank you to the people who made that possible!!!
He also got a very cool gift from his chemo angel. Trey is a huge Jeff Gordon fan and she sent him a Teddy Bear wearing a Jeff Gordon shirt. He loves it! Thanks Angel!
I have a special prayer request/ Morgan Barnes (I have mentioned her before on Treys site). She recently completed her transplant at Duke and was declared NB free. She is now at Sloan Kettering in NY for antibody treatment. The doctors there have detected NB in her bone marrow. Her parents are just heart broken. The doctors at Sloan are continuing with the antibodies and they seem to be working on the remaining NB. Please pray for Morgan and strength for her family. Her web site is WWW.CARINGBRIDGE.ORG/NC/MORGANBARNES. Our prayer request for Trey is to get him on to this next step in treatment and that the stem cell transplant will remove all NB from his body.

Wednesday, April 9, 2003 4:52 AM CDT

Trey and Misty are now back at home. The testing is done. There are now no signs of the virus in his blood stream. His white count had dropped a bit so he has to start the shots again. They will return next week and hopefully be admitted for his transplant. Please pray that his white count comes up and his body is ready to begin stem cell transplant.

Friday, April 4, 2003 10:15 AM CST

This weeks test are complete. The results revealed that Trey has a virus in his blood stream. This will have to be treated before he can go in for his transplant. He is at home now and is taking anti-viral medication. He will go back to Duke next week to see if the virus has cleared up.
Please continue to pray for Trey's complete healing and continued strength for Misty as she fights with her son to beat this monster we call CANCER.

Sunday, March 30, 2003 6:05 AM CST

Im sorry its been so many days between updates. It's just that during a week of testing its hard to know exactly what to tell you. Things change so much from day to day and I dont won't to tell you anything that isn't right.
So anyway here goes to the best of my knowledge. After lots of bone scans, body scans, test for virus etc heres what we know. The Chemotherpy has done a good job on Treys cancer. The only spots of cancer that he still has could only be seen with an mibg scan. This is the scan where he is given a liquid that will stick to cancer and show up when scaned. He still has 2 very small spots on his leg and one small spot somewhere in his abdominal area. These are not anything new. They are spots that haven't completely healed from the chemo. What this means is that he will get radiation treatments to those spots after his stem cell transplant. He also had several teeth that need to be filled. He was admitted to the hospital in Roanoke yesterday and had these all taken care of at once. They will return to Duke on Monday for more test. Im not sure how many days these will last but Misty said he could possibly be admitted to the transplant unit as early as late next week. Please continue to pray for Trey as he gets closer to this very critical step in his treatment. This is the most important and most dangerous of the steps. He will receive a very high level of chemo drugs for several days that will totaly kill his own bone marrow. He will then be given back his own stem cells. These stem cells will then begin to make new hopefully healthly bone marrow. During this time he will have no immune system for many days. He will be hospitalized in the transplant unit in isolation for atleast a couple of weeks. So you see with have much to pray about!! Please also pray for the other children going through transplant now.

Tuesday, March 25, 2003 8:51 AM CST

Trey and Misty arrived in Durham yesterday to begin several days of testing to work up to Treys upcoming stem cell transplant. Yesterday he had bone scans and a virus test. The virus test was not a pleasant experience for anyone involved. Trey had to have a tube put down his nose and saline solution put into the tube. He was not at all happy about that. I can't say that I blame him!! The test are done outpatient and will continue through Thursday. Trey and Misty are staying at the Ronald McDonald house. They will be able to go home Thursday night for the weekend and return early next week for more test. Please pray that these test all have favorable results and that his little body is as ready as it can be for transplant.

Friday, March 21, 2003 11:38 AM CST

Well, things are looking a little better. Trey didn't have to get blood yesterday and his counts were up just a little. He is still feeling yucky and still has those mouth sores he hates so badly. This should improve in the next few days. Please pray that his counts continue upwards so that he move on to the next step in treatment which is stem cell transplant.

*** Check Out the new Photos!!!!

Wednesday, March 19, 2003 8:02 AM CST

The good news is that Trey's fever is down and he didn't have to be admitted. Yeah!!! The bad news is that his counts are still really low and he had to get blood yesterday. Please continue to pray that his counts will start to rebound soon. Thanks for all the continued support and prayers for Trey and Misty.

Tuesday, March 18, 2003 7:44 AM CST

Trey's low count yuckies have gotten even worse. He now has those bad mouth sores and doesn't want to eat. He is also complaining of pain. Misty has to take him to the hospital in Roanoke this morning to get a transfusion. He was running a fever this morning so it is a possibility he will have to go back to Duke today to be admitted. Please pray really hard that his counts will start to recover soon so that he can feel better. Also pray that his fever is not a sign of infection.

Friday, March 14, 2003 2:27 PM CST

Well, the low count yuckys are back. Trey's white count is now very low. He is starting to complain with the painful mouth sores and isn't feeling as well. He is still eating and playing some. We know it takes alot to completely stop him. Im glad he is so strong but sometimes it's hard to see him trying to push his self when he feels bad or is in pain. Misty will also have to start giving him the shots he hates so bad to help get his white count back up. I wished there was some other way. I know she hates giving them to him as well. Please pray that his counts will recover quickly so that he can begin to feel better and continue his treatment. Also, continue your prayers for our buddy Cody who has relapsed. His site is www.forcody.org. Thanks for all the prayers. Please take time to visit the quest book while you are here.

Thursday, March 13, 2003 3:21 PM CST

Treys Granny Susie talked with Trey and Misty today. Trey is still as full of energy as ever. He is eating well and playing strong. That will soon change when his counts drop as a result of this last round of chemo. Misty had to draw blood today and take it to the hospital for test. I havent heard the results of those yet. Please pray that he will fair as well as he did last time when his counts do go down. Thanks for all the support and prayers.

PRAYER REQUEST: There is a little boy named Cody who is a Duke recovering from Bone Marrow transplant. His Mom is very faithful about visiting Treys website and offering support. Things have been going very well for him until yesterday. His family was informed that he has relapsed. Please pray for Cody and his family and visit his site at www.forcody.org. Thanks!

Monday, March 10, 2003 4:34 PM CST

Trey was able to go home late last night. He is still feeling good. His counts haven't dropped yet. It will be a couple of days before he starts getting sick and has to have the shots he hates so bad. The shot helps to bring his white count back up. Please pray that he will not be so sick and that he counts recover quickly. Please continue to pray for all the other sick children. Reese is still very very sick. His situation is touch and go right now. Please say an extra prayer for him.

UPDATE: Little Reese Coble went to join Jesus and all the other angels late this afternoon. If you would like to leave words of condolence his site is www.caringbridge.org/nc/reesecup.

Friday, March 7, 2003 1:08 PM CST

Trey and Misty arrived safely in Durham yesterday. He was admitted and his Chemo was started last night. It should be finished by Monday. If all goes well he will get to go home then. He is still feeling pretty good and is wide open. I just called the hospital and he was yelling to go to the toy room. Its good to see him active and feeling well but its also very hard to keep up with him and make sure all his lines and drugs stay safe. Misty is about the only one that can handle the bike rides around the halls without some help. Please keep praying for Treys complete healing. Also, pray for all other sick children. Little Reese is holding his own but is still very sick so continue to remember him and his family. There is good news from Morgans Mom. She is now out of the transplant unit and doing very well. Her cancer and stage is the same as Treys, she is also 4, and there progression with treatment has been very much alike. She is about a month ahead in treatment because she was diagnosed a little sooner. Her Mom has done a great job with her Journal. She has documented every step of Morgans transplant at Duke. Her site is (www.caringbridge.org/nc/morganbarnes). Trey will have his transplant very soon. Morgans site is a good place to see what he will go through in isolation during transplant. Let me warn you Morgan is a doll baby and once you visit her site you will have to check on her often. Thanks again for all the prayers and support during Treys surgery! Keep on praying. Its working.

Thursday, March 6, 2003 4:49 AM CST

Trey and Misty are on there way back to Duke today for his 6th round of chemo. Its hard to believe he has to go through more chemotherpy so soon after surgery. I guess thats just what it takes to get rid of this Cancer. It is very resistant to treatment. Misty was finally able to get her car out of the shop. She said yesterday she was still having some problems with it and she was going to call the shop to have them look at it again. I hope she got it fixed. It was really expensive to fix the first time. I just hope it will last her a while now.
Please pray that Trey does well with this round and that the chemo drugs continue to kill the cancer in his body.
Little Reese is still not doing well. Please also continue to pray fo him. (WWW.caringbridge.org/nc/reesecup) and all other sick children.

Wednesday, March 5, 2003 1:27 PM CST

Trey is still doing well. He is at his Papa Kyles today so his Mom can work. They will still be going to Duke tommorrow for round 6 chemo.
As you all say your prayers for Trey I have a special prayer request. I have mentioned Baby Reese to you before, he is in Ped. ICU at Duke. He has been placed on machines to help him breath. His Mom has left a request on his website for a prayer.

Here is a copy of her request from Reeses website-: www.caringbridge.org/nc/reesecup


Wednesday, March 5, 2003

T +90 12:15pm

Sorry for not updating sooner. I know a lot of you all check on Reese several times a day hoping for a promising update. Reese is not improving much – if any – and it’s been hard to do an update today. I can’t stand sharing bad news. Reese is still requiring about 65% O2 to keep up his saturations and he’s retaining a bunch of fluid. They are giving him lasix and diruril in hopes to get it off. On a good note, his gall bladder is better and his bilirubin was only .4 yesterday. They changed his NG tube so they can start pushing pediasure into his stomach. He’s handling that well and maybe we can cut down some on the TPN. He still tries to breathe over the machine so they have to keep sedating him even more. The doctor said Reese laughs at that sedative!

It’s getting harder by the minute to see Reese is this condition. I broke down today in his room after seeing him for all of about 2 minutes. Once out in the hall I lost it. I collapsed against the wall and just screamed that I can’t take it anymore….I want my baby back….I can’t look at him like this. Toni, Mom, and Doug were right there with me. Once I settled down they sent me to Reese’s room to get some rest. They told me to stay off the computer and the internet. I did for a while but I have a special request. Mom suggested to me to ask all of you a small favor. At 7:00 tonight, say this prayer for Reese. If we all say the same prayer at the same time our voices will be louder in Heaven. Please pass this prayer to everyone you know. Even if they don’t normally pray – send it to them anyway. Reese needs this and so do I, so does everyone else. It would mean so much to me and it won’t take very long.

Father, You formed us in our mother's womb and established the number of our days before there was even one of them. You are intimately acquainted with all of our ways, and nothing escapes Your notice.

Jesus, You are the Great Physician, and there is nothing too difficult for you. So we bring Reese before you now, and ask that you would touch him with Your almighty power. Your word says that "You hear the desire of the afflicted; you encourage them, and you listen to their cry." Hear us now, as we cry out to you and answer us in this time of need.

Touch his body Lord, with the strength he needs to fight this pneumonia and heal his lungs so that he may recover quickly. Your Word declares that it's by your stripes that we are healed, so I take hold of that promise for Reese right now, and I proclaim your provision for his healing. Let Your peace overshadow him, and Your presence be his comfort at this time. I pray in Jesus mighty name, Amen!

PLEASE JOIN ME IN PRAYING FOR REESE AND HIS FAMILY TONIGHT!! If you have time to visit his site and offer encourgement that would be wonderful!!!

THANKS, Treys Aunt Kathy

Monday, March 3, 2003 3:13 PM CST

Not much has changed since I last updated. Trey is at home in Roanoke and continues his recovery from surgery. The plan is still the same for the next chemo. round. He will be admitted to Duke this coming Thursday for round 6. He will probably be there until Monday or Tuesday. Please pray for him as he receives more chemo treatment.

Thursday, February 27, 2003 5:24 PM CST

Trey was sprung from the hospital this morning!!!! Can you believe he is already out. Way to go Trey!!!!! He and Misty are in Danville at Papa Kyles right now because Roanoke has alot of snow and ice and expecting more tonight. They will stay there atleast tonight or until it is safe to go home. He will return to Duke next Thursday to begin chemo round 6. Trey is so strong. I just know he's going to kick this monsters butt!!. Please continue to pray for Trey. He is still in some pain but handling it well. Also please keep Morgan and reese in your prayers. Morgan is in her second week of transplant and feeling really lousy. Reese is still very very sick. His website is http://www.caringbridge.org/nc/reesecup/. Please visit his site and offer some much needed encouragement to his parents.

Wednesday, February 26, 2003 4:37 AM CST

Trey is just amazing! He was already up walking the halls and riding one of the little bikes on the hall yesterday. Don't get me wrong he is still in quite a bit of pain but he just pushs through it. I quess being able to play is just really important. The Doctor came in while I was there and said he just couldn't believe how well Trey was doing and that he would probably get to go home on Thursday. For anyone who knows Trey thats not a huge surprise! He is a tough little Kid. Misty finally got some much needed sleep. I dont think she slept much for a couple of nights before the surgery.
Thanks again everyone for all the prayers and support. Please continue to pray for all sick children. There are a couple of children at Duke that need special prayers this week. Please remember Reese he is a 13 month old cancer patient that has fluid in his lungs and is very very sick.
Also pray for Morgan. She is 4 like Trey. She is having her stem cell transplant and is also feeling really bad. Please pray that her counts start going up soon and that her cells start to grow. Thanks again for checking. Please Sign the guest book while your here so Trey and Misty will know you stopped by. Kathy

Monday, February 24, 2003 7:02 PM CST

O.K. I know. What took me so long? Actually I just got home from the hospital. I know everyone has been waiting to hear so here goes. Frist of all Trey is doing good right now and is in his room 5107. His surgery also went well even though it was a little longer than anticipated. The Doctors were able to remove his entire tumor (thank you Lord!). They also removed his adrenal gland and the lymph nodes. They will be tested for cancer.They DID NOT have to remove his kidney (another answer to our prayers). He did have some bleeding from a artery that ran thru his tumor and lost some blood. After surgery he was taken to recovery. The plan was to take him to step down unit after recovery but he did so well in recovery that he got to go directly to his room. He has pretty much slept all afternoon. He is in pain and is on morphine. The only time he is waking up right now it to hit the button for that. I will update tommorrow and let everyone know how he is recovering. THANK YOU ,THANK YOU, THANK YOU for all the prayers. Kathy

Monday, February 24, 2003 6:03 AM CST

Dear Lord, Please be with Trey this morning as he goes into surgery. Be with him so that he is not afraid. Please guide the Doctors hands so that they know exactly what to do today to remove his tumor fully and without complications. Please help Misty and Treys other family members to stay strong and to trust that you are watching over Trey today!! THANK YOU LORD for all you have already done towards healing Trey and all that you will continue to do.
Everyone please PRAY PRAY PRAY PRAY PRAY today !!!

Saturday, February 22, 2003 11:52 AM CST

I know everyones waiting to hear the surgery schedule. I talked with Susie (Treys Granny) this morning. She said Misty had talked with Duke yesterday and that they will arrive at Duke at 7 am Monday morning and that his surgery will begin at approx. 8:30. After recovery is when he will go to a room. I will update Monday as soon as I know his room number. I do know it will be on 5th floor 5100 unit. Thank you so much for all the prayers. Please continue to pray for Treys complete healing, the Doctors that will perform the surgery, and strength for Misty. Please also pray for all other children with cancer and their families.

Thursday, February 20, 2003 5:40 AM CST

The results are in! Trey is ready for surgery. His surgery is scheduled for Monday. Duke will call Misty on Sunday to let her know what time to be there. The primary tumor has shrank alot. They will remove the tumor, his adrenal gland and there is a slim possibility that his kidney may also have to be removed. The Doctors believe they can save his kidney but aren't 100% sure and wont know for sure until they remove the tumor. Lets all pray really hard this weekend that Treys surgery is very sucessful, that all of the tumor can be removed ,that his kidney can be saved, and that he comes through the surgery with no problems. I'll update as soon as I know a time on the surgery. Please also keep praying for the other kids fighting this battle!

Tuesday, February 18, 2003 8:40 AM CST

Trey and Misty are on the way to Duke this morning. He will be outpatient for 3 days. The Doctors will be doing scans and testing to prepare for the surgery to resect the tumor on his adrenal gland. Misty's car is still in the shop. She was going to get a rental car for this trip. I hope she was able to get something safe for the weather. The Roanoke area has several inches of snow with ice on top. Durham has ice only, which is even worse. The good news is that its supposed to get well above freezing today so hopefully most of it will melt.
Please pray that: -They have a safe trip to Durham
-All of Trey's testing goes well with
as little pain as possible.
-The test show that his tumor has shrank
so that it can be completely removed.
As always THANKS for all the prayers and support!!!!

Thursday, February 13, 2003 10:34 AM CST

I talked to Misty this morning. She was getting ready to take Trey to the dentist. They have to check and make sure he doesn't have any dental problems that need to be taken care of before his transplant.
His white count is very low but he is not sick right now. I also talked with him and he sounded really good. In fact, he was eating Valentines sponge bob candy that he told me his angel sent to him. He has a chemo angel that sends him gifts in the mail and he loves getting them!! THANKS ANGEL!!! Misty still doesn't know whats wrong with her car. I hope its something simple that can be repaired without alot of expense.
Please continue to pray for Treys counts to recover and that he continues to feel well. Please also add Morgan to your prayer list. She is another 4 year old with NB. She was admitted to Duke transplant unit this week for her stem cell transplant. Her parents are asking for everyones prayers that her transplant goes well.

Tuesday, February 11, 2003 1:13 PM CST

Treys white count and platelets have now dropped very low. He is getting a blood transfusion in Roanoke today. So far he is still feeling good. Hopefully he will not get so sick this time. This past week has been trying for Misty. She was able to work a couple of nights but then her car broke down on the way home one day last week in the snow. She was finally able to get it to the shop today. They are not sure whats wrong with it yet. Hopefully its nothing major. Please pray that Trey continues to feel well and that his counts will recover quickly so that he can go to Duke as planned next week for testing to prepare for the surgery to remove his tumor. The sooner the better!!!

Sunday, February 9, 2003 2:40 PM CST

Things have not changed much since the last update. Treys counts have not yet begun to drop. He is still feeling pretty good. Misty has been able to get a couple of nights work in since they have been at home, which is good. She needs to work some in order to keep her job and Treys medical insurance. So far so good this round. Thanks for the prayers! Keep it up!

Thursday, February 6, 2003 4:53 AM CST

Trey is still at home and feeling pretty good. His counts were checked at the hospital in Roanoke yesterday and they haven't started to drop yet. He is pretty much his normal wide open self right now. It sounds crazy, wanting him to hurry up and get LOW counts ,but the sooner they start down the quicker they will come back up. Please continue to pray that he will recover quickly so he can start down that road to the surgery to remove the tumor. Also, pray for the other children going through cancer treatment and their families. Thank you again for all the love and support!
I would like to say THANK YOU soooo very much to my fellow employess at our SECU Cary II branch. They continue to do a wonderful job with fund raising efforts. You Guys are all wonderful!!!!

Thursday, February 6, 2003 4:53 AM CST

Trey is still at home and feeling pretty good. His counts were checked at the hospital in Roanoke yesterday and they haven't started to drop yet. He is pretty much his normal wide open self right now. It sounds crazy, wanting him to hurry up and get LOW counts ,but the sooner they start down the quicker they will come back up. Please continue to pray that he will recover quickly so he can start down that road to the surgery to remove the tumor. Also, pray for the other children going through cancer treatment and their families. Thank you again for all the love and support!
I would like to say THANK YOU soooo very much to my fellow employess at our SECU Cary II branch. They continue to do a wonderful job with fund raising efforts. You Guys are all wonderful!!!!

Monday, February 3, 2003 5:13 AM CST

Trey was able to leave the hospital on Friday night. This round went pretty smoothly. His counts should start dropping and thats when he gets sick. He has only had vomiting about once a day so far. Once he recovers from this round he will return to Duke for lots of test (kidney, bone scans etc) to prepare for his surgery. If all goes as planned the surgery to remove his tumor will be within the next 20 days.
Please pray 1st, that he recovers quickly from this round of treatment so that his surgery can be performed as soon as possible.
2nd, that the primary tumor has shrank enough so that the Doctors are successful at removing it and of course continued emotional strength for Trey and Misty.
I'll update as soon as I here any news.
Thanks again for visting and for all the prayers and support.

Friday, January 31, 2003 at 05:09 AM (CST)

Today is the last day of round 5. Trey and Misty should be able to go home tonight if all goes well. Trey has only been sick a few times so far. Of course, we have learned from the previous rounds that his most severe reactions come several days after chemo when his counts start to drop. Please pray that he will not be as sick this time and that his counts will recover quickly.
The next step in his treatment is surgery to remove the tumor on his adrenal gland. The date depends on his recovery from this round but it should be within the next 3 weeks. Please also continue to pray for strength for Misty. She has been by Treys Mom, Nurse, best friend, play mate, and greatest advocate over the last 4 months. I don't know how she does it all! Misty your family is soooo proud of you.

Tuesday, January 28, 2003 at 06:37 AM (CST)

Trey was admitted to Duke yesterday. His 5th round of chemo was started last night. This round will last 5 days. If all goes well they will return home on Friday or Saturday. Please pray that his little body tolerates this round well and that the drugs continue to work on the cancer. He also had a hearing test yesterday. The treatment he is on often causes children to lose a large part of their hearing. I will update when I hear the results of those test.

Thursday, January 23, 2003 at 01:18 PM (CST)

Well, Treys white count is still down. It will be checked again this weekend and hopefully he will be able to start chemo on Monday. Misty talked with his lead Doctor at Duke this morning. The results from his bone marrow biopsy show considerably less cancer cells in his bone marrow. He still has alot of bad cells but it is better than the last time it was tested. Hopefully this means the treatment is working. Trey is feeling pretty good right now. He is going to spend the night with his Papa Kyle tonight. Misty is going to try to work a couple of nights. Please continue to pray for Trey's recovery and strength for his Mommy.

Tuesday, January 21, 2003 at 06:05 AM (CST)

Treys counts are NOT up enough for him to start chemo today. His white count has not recovered as quickly as the doctors thought it would. Some of his other counts are also low. He will go back to have them checked tomorrow in Roanoke. The earliest he will he admitted for round 5 will be Friday. Please pray that his counts recover over the next couple of days so that his treatment can continue.
Thanks for all the prayers! Keep leaving those messages!!!

Monday, January 20, 2003 at 06:51 AM (CST)

HI everyone! Trey will not be admitted to Duke today. His counts still may not be high enough to start the 5th round of chemo. They will go to the hospital in Roanoke to have blood work done today. If his counts are good they will go to Duke tommorrow. As far as the results from the stem cells I still don't know for sure if they were able to collect enough for the transplant. We will find out when he is at Duke this week. Thanks for the continued support and prayers. Please pray that this round goes well and that there is good news about the stem cells!

Thursday, January 16, 2003 at 07:59 AM (CST)

Trey and Misty were in clinic all day Tuesday and Wednesday. On Tuesday he had to be given platelets before they could begin his phoresis. The good news from such a long day is some good stem cells were collected. Yesterday they did phoresis again. The doctors told Misty that the combination of the two may be enough for his transplant. She should find out this morning.
Today they will back at the clinic to check his kidneys and do other routine test. If all goes well they will go home tonight.
Monday they will return to Duke so that he can be admitted for his next round of chemo. This will be a long round. He will be in the hospital until atleast next Saturday.
Trey is feeling pretty good right now! I was able to have dinner with them last night and he was his normal wide open self. Its nice to see him feeling good, but I'm not sure how Misty keeps up with him. I guess she gathers her strength and energy from her love for him. Please continue to pray that there were enough stem cells collected from this weeks phoresis for his transplant so that he doesn't have to endure the surgery. I'll update as soon as I hear.

Tuesday, January 14, 2003 at 09:10 AM (CST)

Trey and Misty are now in Durham. Yesterday they were at the clinic all day for blood and bone marrow test that will determine if his stem cells will be collected from his blood or be taken surgically from his bone marrow. They should find out some results from those test soon, hopefully today. Please say an extra prayer that he doesn't have to endure the surgery. I'll update as soon as I hear any results.

Thursday, January 09, 2003 at 07:04 AM (CST)

Trey is back at home now. His white counts have begun to rise and he is feeling better. He will not be going to Duke today for stem cell collection as planned earlier. His counts are still to low. His counts will be checked daily at the hospital in Roanoke until they are high enough to try and collect stem cells at which time he will return to Durham. Please pray that his counts rise quickly and the doctors at Duke are able to collect enough good cells in the next few days. Thanks once again for all the support and prayers!

Monday, January 06, 2003 at 01:26 PM (CST)

Trey is in the hospital in Roanoke. He was admitted last night with a fever. His white count is extremly low and his mouth sores are very bad. He even has sores on the outside of his mouth. He will remain in the hospital until his fever comes down and his white counts come up.
He has already been given blood 3 times since he got there last night and is being treated with antibotics.
Please pray that the mouth sores get better soon (they are very painful), His counts begin to rise quickly, and that the fever doesn't mean that there is any infection. I'll update as soon as I have any new information.

Friday, January 03, 2003 at 06:59 AM (CST)

Trey has been at home since Sunday night. So far so good. His counts have started to drop. He has some mouth sores but not as bad as before. He is still eating and feeling pretty well.
If he continues to do well and doesn't get fever or infection he will not return to Duke until next Thursday January 9th. This trip will be another attempt to collect good stem cells from his blood. If the Doctors aren't able to get enough good cells this trip he will be admitted for surgery to remove the cells from his bone marrow. This is a very painful procedure and is done as the last resort but they have to have the stem cells for his transplant.
Please pray that the cells can be collected from his blood this time so that he doesn't have to endure this surgery.

Sunday, December 29, 2002 at 09:52 AM (CST)

Trey is on his last day of chemo, round 4. If all goes well they will get to leave Duke tonight as soon as the chemo is finished. He has done remarkably well with this round. He has only been sick 1 time. He is still eating and moving around. He is one tough little cookie!! Of course, his counts usually don't bottom out until a couple of days after the drugs are finished. He has been very sick before when his counts are low. During this time he is also at high risk for infection. He has had to return to the hospital with fever or infection after the other 3 rounds. Let's Pray that things go well in the next few days.

Thursday, December 26, 2002 at 06:53 PM (CST)

Trey had a wonderful Christmas at home. They woke up to snow yesterday morning! Santa was of course very good to Trey. Misty said he was feeling good and played all day. What a blessing for him to be able to spend Christmas at home. Of course, it was a short Holiday. They returned to Duke today to begin the 4th round of chemo. He was still feeling good today and full of energy. He brought along several of his Christmas toys to keep busy with. I had forgotten how much fun playdough can be!
His chemo drugs will start late this evening. He will receive the same drugs as rounds 1 and 2. This combination of drugs made him very sick both times before. Please pray that this time isn't so hard on him. He will receive the 3 drug combination for 72 hours straight. If all goes well, the round will be completed Sunday night. Hopefully, he will be able to go home on Monday for a few days.
Misty's spirits seemed to be good today as well. I think the time at home was good for them both.
As always, Thanks again to everyone for all the prayers and support. Please keep him in your prayers as he endures the next few days. I'll update as soon as there is any new news.

Monday, December 23, 2002 at 05:50 AM (CST)

Trey and Misty arrived safely at home. Trey even got to stay with his Papa Kyle and Grandma Dianne (two of his favorite people in the whole world) yesterday while Misty finally got some shopping done. Her Mom said she sounded really happy to finally get Treys gifts and to get a Christmas tree. I'm so glad he gets to be at home to enjoy Santa.
They will return to Duke the 26th to begin his 4th round of chemo. Please continue to pray that this round will do its job on the cancer and that his little body tolerates it.
Thank you once again for all the prayers and support.
God bless and Merry Christmas!

Friday, December 20, 2002 at 08:30 AM (CST)

Yesterday was a very long one for Trey and Misty. They were at the clinic in the morning hours for more blood test. They had to return in the afternoon because he needed platelets and blood. His white counts are still going up. His cd count is a little higher and the doctors think they may be able to get stem cells today.
Unfortunately, the deadline to have his stem cells purged under the clinical trial was yesterday. He will still receive his stem cell transplant. This just means that those cells will not go to California for purging. The purging process is still a trial and is not proven yet. It's just a little disappointing if there was any chance of it making a difference in his treatment. We just have to look at this as part of God's treatment plan for Trey and believe He is the only one that knows whats best.
Trey and Misty are back at the clinic today hopefully extracting those good cells. They should be able to go home either this afternoon or tommorrow afternoon. Please continue to pray for them both.

Thursday, December 19, 2002 at 07:33 AM (CST)

Trey and Misty were back at the clinic yesterday. Blood work was done and once again his good stem cell level was not high enough to get the stem cells they needed. The good news was that his white count was high enough that He and Misty were able to get out some yesterday afternoon. I know it must be really hard being confined when his counts are low.
They will be back in clinic this morning to check counts again and hopefully if the cd count is high enough they will be able to get stem cells today. Please continue to pray that they will be able to get enough cells soon. It is is very very important to his treatment. Thanks for the Prayers!!!

Wednesday, December 18, 2002 at 04:51 AM (CST)

Trey and Misty spent most of the day and early evening at the clinic yesterday. Blood work was done yesterday morning to check all of his counts. He still did not have enough good stem cells for the extraction. He was also very low on potassium, magnesium and one other vitamin. It took several hours to give those to him to get those levels up.
There was some good news, his white blood count is on its way back up and his platelets were also better. Yeah!!!!!
They will go back to the clinic frist thing this morning to see if his cd cell counts are maybe high enough today for collection. So, again today please pray that this will be the day that they can get those good cells for his transplant. I'll update as soon.

Monday, December 16, 2002 at 09:51 AM (CST)

Misty and Trey arrived safely in Durham yesterday. Misty said Trey wasn't upset about this trip because he gets to be outpatient and doesn't have to stay at the hospital. A complete blood count was done yesterday and it was determined that his platelets were too low, so he received a transfusion. His white counts are beginning to rise, which is always good news. They are however, still too low to have visitors or go out in public. They should be back close to normal by mid-week. His clinic appointment was at 8:30 this morning to begin phoresis ( Stem cell extraction). This is the same procedure he had a few weeks ago. The reason he is having it again is because there were not enough good stem cells in what was collected to be used for his transplant. Hopefully, this has changed since his last round of chemo and these cells will be useful. They will be at the clinic most of the day today. Misty was not sure how many days they will have to stay. Probably until atleast Thursday.
Please say a special prayer that there are lots and lots of good stem cells!!! I'll update as soon as there are any results. Thanks again for all the prayers and messages!

UPDATE 2:45 PM

Misty sent this email to her mom.....

The doctor just called...Trey's cd34 count is way too low to phorese him
>today....he says they'll check him again in the morning and hope it's gone
>up to at least ten...oh yeah, it's at 2. If it doesn't go up they won't
>phorese him until after his next chemo...i asked him if his stem cells
>would still be strong then...he didn't really say but i know they won't
>be...he just said trey has to have transplant and they have to get them
>somehow and they can only do what his body will let them do;
>if they're not high enough tomorrow (((please,please,please pray
>they will be))) then I'm going to ask the doctor what the chances are of going
>in and surgically removing them now or prolonging it until after the 4th
>chemo when the cells cannot recover as well after transplant.....the doctor
>also said that Trey's white count is not improving...he said it has dropped
>since yesterday and he said that really concerns him...he wants to check
>him again very early in the morning with even more blood draws....(they
>took 14 today...10 draws and 4 cultures) no wonder he seems so tired now ,huh??
>...as for now I need to call duke infusion and have them bring
>over some flushes and things...
> Talk to you later,
> Love, Misty and Trey

EVERYONE, PLEASE PRAY THAT THESE COUNTS ARE BETTER TOMMORROW. IT IS EXTREMLY IMPORTANT TO HIS TREATMENT THAT THESE STEM CELLS CAN BE COLLECTED. SO,PLEASE- PRAY, PRAY, PRAY!!!!!!!!!!!

Ill update as soon as i can get more information.

Thursday, December 12, 2002 at 02:38 PM (CST)

Trey is back at home as of yesterday. He is still getting antibotics that Misty administers thru his central line. He is feeling pretty good and is able to play and eat.
He will return to Duke on Sunday. He will first get blood platelets for a couple of days and then begin more bone marrow test after that. He will be there most of the week. If all goes well he will then get to go home until after Christmas. Yeah!!!!!
Yesterdays, Danville Register&Bee included a feature story on Trey and his fight with Neuroblastoma. He even got his picture in the paper !!!! THANK YOU Register&Bee.
Thanks also to everyone who continues to support Trey and Misty with cards, phone calls, messages in his guest book ,and most of all your prayers. Please pray that the test next week have positive results, and that he remains well enough to be at home for Christmas.

Monday, December 09, 2002 at 05:34 AM (CST)

Hi everyone, Sorry it has taken me so long to update but we had a big ice storm here in Raleigh and I was without power for a few days. Anyway, Trey is back in the hospital at Duke. Last Thursday night Misty noticed some blood on his shirt and around his lines. He was also complaining of leg and back pain. She of course called Duke and they told her to bring him on Friday morning. Emergency surgery was done when they got there to remove the line because of fear of infection. He is now receiving high doses of antibotics. The effects of the last round of chemo have also set in, and he is not feeling very well. His white count is low. Hopefully, he will be able to go home today or tommorrow. He will still have to continue the antibotics, but Misty will be able to give them to him thru the one line that he still has. Please pray that he soon feels better so he can have some fun !!! Check out the new Pictures, these are from Thanksgiving when he was feeling well!!!

Wednesday, December 04, 2002 at 04:13 PM (CST)

Trey has now completed his third round of chemo. He is at home today where it is snowing like crazy. He wasn't nearly as sick as expected this time (those prayers are working!). His white cell count has begun to drop. If he doesn't get an infection or fever he will be able to remain at home until the 16th a which time he will be back at Duke for more bone marrow test. They are enjoying the lap top that the nice people at Kinfolk provided. Thanks again, Kinfolk staff.
I would personally like to thank some very,very kind people at State Employees Credit Union (thats where I work) for their fund raising efforts to help Misty and Trey with expenses. The Cary II branch employees in Cary N.C. have worked extremly hard and been very successful. These folks truly care and for that I will be forever grateful.THANK YOU, THANK YOU, THANK YOU. You are all wonderful!!!!!
Well, keep praying and keep leaving those messages!!! I'll update as soon as there is any new news.

Sunday, December 01, 2002 at 05:13 AM (CST)

Finally some results! The Doctors came in late yesterday afternoon with the results from the bone and CT scan. First the bone scan. Misty said, their exact words were "We are very pleased with what we see", the lesions on his bones have improved!!!! She was warned that it doesn't mean they are gone but there is improvement. Yeah!!!!
The CT scan also showed some good news. The primary tumor is beginning to shrink !!!!! It has gone from softball size to about tennis ball size. Thats all very good news!! Thank you Lord!!!! There was one more piece of news that may not be as encouraging. The bone marrow test didnt look as good. Im not sure at this point what that means, but the bone marrow team seems to think its a possibility that his marrow may actually be making its own NB cells. They are not sure about this. They say it is possible that the test weren't done correctly. More test on his marrow will be done after this round of chemo. I'm not sure what this will mean as far as his treatment is concerned. I do know this waiting is torture. He began his Third round of chemo Friday night. So far he hasn't been as sick. The doctors had told Misty on Friday that he would be very ill this time but so far, he's throwing up some but not as ill as expected. Hopefully that will continue for the next few days.
Thanksgiving weekend was good for Trey. He played alot and ate big on Turkey day!!! His Aunt Tara (shes 4 too) visited with him and they even rode bikes. Thank you for praying that he would have that good time. It worked! Im so glad he got to have a good Holiday. Look for new photos in the next few days. Keep praying people !!!!! It seems God is answering many of our prayers. Treys room this time is 5124. Ill update soon and let everyone know how the chemo is going.

Wednesday, November 27, 2002 at 11:49 AM (CST)

Trey did very well with the surgery he had yesterday to collect bone marrow for testing. He was even able to return home last night. He is still feeling pretty good and still eating well. He will return to Duke on Friday for his bone scans and CT scans. He will also begin his third round of chemo on Friday. Please continue to pray that the test results are all favorable and that his reactions to the chemo aren't as severe. I will update as soon as we know anything from these test. I would Like to say Thank you so much, to the very nice people at an organization called Kinfolks in Wilmington,Delaware. They provide laptop computers and internet service to sick kids. They have been kind enough to provide one for Trey. I received it today and will take it to him at Duke this weekend. It has tons of Games and his very own email. Now he can check out this site no matter where he is, so keep leaving those messages. I have added a link for Kinfolks at the bottom of this page. Have a Happy Thanksgiving everybody!!!!

Friday, November 22, 2002 at 02:04 PM (CST)

Well, Guess what! More changes in the plan for the next few days. Trey was able to go home last night. He does have to go back to the hospital in Roanoke today for more antibotics. The plan for right now is for him to return to Duke on Tuesday for the bone marrow aspiration and electrocardiogram. If all goes well he will have a CT scan and bone scan on Friday.His third round of chemo will also begin on Friday. Right now he is feeling pretty good. Misty said he was able to eat all three meals yesterday. Hopefully, he will get a good weekend of fun in before he has to start this brutal cycle all over. Please pray that the surgery on Tuesday (11:00) goes well, that the scans on Friday reveal that the treatment is doing its job on the Cancer and that his little body will continue to endure it.

Wednesday, November 20, 2002 at 07:30 PM (CST)

Boy,Things sure do change quickly. Trey and Misty returned to Durham on Monday to begin Trey's stem cell extraction. This was done as an outpatient and took most of the day both Monday and Tuesday.They spent two very long and exhausting days only to be told that the cells collected couldn't be used for purging because there weren't enough stem cells.The Doctors aren't sure why. They were told they could go home last night and return on Friday for a surgery to test his bone marrow to try and see whats going on with that, and also for an electrocardiogram to check his heart.They arrived at home last night around 7:00. At 10:00 Misty received a call from Duke telling her to take Trey to the nearest ER. The blood work done that day showed a very rapidly growing infection. They went to the Hospital in Roanoke. Trey was started on IV antibiotics. Misty talked with the Doctor there this afternoon and was told they would continue the meds until tommorow at which time more blood test will be done. If the test still show infection he will return to Duke tommorrow. If the infection has cleared he will get to go home for a day. I sure hope he does get atleast one day at home. Misty said he cried all the way to the hospital last night because he wanted to stay at home. Please pray that he gets to spend some time out of the hospital and that the test being done at the end of the week are good news. I'll update soon. Keep Praying.

Sunday, November 17, 2002 at 06:07 AM (CST)

Trey and Misty finally got to go home yesterday.Yeah!!! The Doctors at Duke were even able to do stem cell extraction twice before he left. His counts all progressed better than they thought on Friday and Saturday.They still need to collect more stem cells.He will have to go back on Monday as an outpatient for a couple of days. The stem cells will eventually be flown to L.A. Childrens Hospital to be pruged (take the bad cancer cells out) and then used for his transplant a little later down the road. Trey is feeling better, not great, but better. He still has those awful blisters in his mouth and throat and cant eat yet. He gets TPN (liquid nourisment) thru his central line at night while he's sleeping. Hopefully, he will have a few good days before he starts round 3 of chemo on the 25th. He will also be scanned after this next round to see how the treatment is working so please pray, pray, pray that those results will be good news. Keep visting his guest book. Misty says Trey really enjoys her reading them to him. Also, if you click on the frist link at the bottom of this page you can see Treys smile Quilt.

Thursday, November 14, 2002 at 03:59 PM (CST)

Hi everyone,
I guess this will be my last entry in Little Trey's Journal, his aunt is going to take it over now.
Please keep little trey in your thoughts and prayers......
he will forever be in my heart...
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Last Sunday Trey was moved from the hospital in Roanoke back to Duke Childrens. His cell counts were not coming up at all and he was still in alot of pain. He has been treated there all week. They have been able to manage his pain a little better. His counts have come up little by little this week. His stem cell extraction has been delayed until after his next round of chemo. Hopefully he will go home by the end of the week. He will return to Duke, Monday the 25th to begin his 3rd round. Please pray that he can enjoy a few days at home and that his reactions to the next round of drugs arent as severe. It's so hard to watch this pain and sickness in a little 4 year old that just 2 months ago had so much energy. We have added new photos of Trey and his Mom on Halloween at Duke. The staff did such a great job that day to make sure the Kids had a fun holiday and Trey made an awesome Spiderman !!

Thursday, November 14, 2002 at 03:59 PM (CST)

Hi everyone,
I guess this will be my last entry in Little Trey's Journal, his aunt is going to take it over now.
Please keep little trey in your thoughts and prayers......
he will forever be in my heart...
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Last Sunday Trey was moved from the hospital in Roanoke back to Duke Childrens. His cell counts were not coming up at all and he was still in alot of pain. He has been treated there all week. They have been able to manage his pain a little better. His counts have come up little by little this week. His stem cell extraction has been delayed until after his next round of chemo. Hopefully he will go home by the end of the week. He will return to Duke, Monday the 25th to begin his 3rd round. Please pray that he can enjoy a few days at home and that his reactions to the next round of drugs arent as severe. It's so hard to watch this pain and sickness in a little 4 year old that just 2 months ago had so much energy. We have added new photos of Trey and his Mom on Halloween at Duke. The staff did such a great job that day to make sure the Kids had a fun holiday and Trey made an awesome Spiderman !!

Friday, November 08, 2002 at 08:50 PM (CST)

Please keep Trey and his family in your prayers.
Trey and Misty's Address in Case you would like to send them a card:
Misty Kirby
2696 Lilly Dr.
Salem VA. 24153
Thanks everyone.
((hugs))
Tina
And now for tonights update from Susie(Trey's Grandmother)

Trey is back in the hospital. He started running a fever
tuesday and was admitted yesterday. He kept saying his throat was hurting.
At first they thought it was infected. Then he had chest x rays to rule out pneumonia. After checking his counts the found his WBC has bottomed out,it was at zero this morning. His red blood and platelet count is also extremly low. Misty just called to let me know they're just starting to give him blood and a platelet transfusions. She also said the Dr. told her with the high dosages of chemo Trey is receiving she can probably expect this after every treatment. It's been a week since he has eaten anything and by the time he feels better and wants to it'll be time for his next treatment. It just breaks my heart to see him in pain. I guess it takes a monster to kill a monster.
Thank you again & God Bless!
Susie

Hospital info coming soon :)

Tuesday, November 05, 2002 at 07:30 PM (CST)

HERE IS THE UPDATE I RECEIVED FROM TREY'S GRANDMOTHER TODAY...
Hi Tina,
My sister sent me a copy of the email you sent her. My name is Susie Morris. I am Mistys mom, Trey's grandmother. I wanted to say Thank you for your prayers and send you an update on his condition. Trey was diagnosed with neuroblastoma on 9/29/02. He had surgery on 10/1/02 for the biopsy of his tumor and bone marrow. Misty had to make a hard decision. The Dr.'s told her the chemo treatments they are currently using don't seem to be working well. They told her she could sign him in under a research program with which they are having better results, but still don't know the
long term effects. He is currently in a research program. He recieves intense chemo (3 different kinds at the same time) for 72 hours straight. It is so strong he has to empty his bladder every 2 hr's or it could eat away at the lining. His first treatment started on 10/5 and ended on 10/8.
We were told it was cause him to loose his appititeand he did. We were also
told he would form blisters in this mouth and throat which he also did. He
went home on 10/10. 10/13 he had to go back to Duke because he was running
a high fever and very ill. He had to be put back on the morphine. He was
also given a blood transfusion. His mouth & throat were so soar and raw he
could hardly talk. The chemo was eating away at the lining of his esophagus
At that point he hadn't had any food on his stomach in 2 weeks so he was
put on liquid fat & nutrients. These are feed through his central line
which was inserted in his chest when he had the 1st surgery. That is also
how his chemo is given. That was a really long week. By this time he had
lost all of his hair. He finlly got well enough to go home on monday the
21st. Misty had to learn to give him a shot the has to be given everyday
when at home. She also had to learn how to hook him up to his fluids at
night since he still couldn't eat. By friday the 25th he was felling good
and eating pizza! He did gain a few pounds back before returning to Duke on
the 28th for another surgery and his 2nd round of chemo. The had to insert
a 2nd line in his chest to do a stem cell extraction. That's for his marrow
transpalnt later down the road. Anyway. To insert the line the go under the
skin on the chest and try to tap into a vein. For some reason they couldn't
find one so they cut into his neck and went through his juglar vein and
came out his chest. He wasn't feeling too good that night. There was alot
of pain from the surgery. Chemo was started the next morning. He seemed to
feel alot better by this time. The Dr.'s were suprised that he wasn't still in pain from the tumor. They think the chemo is working alot quicker than they thought. He had an eaiser time with the treatment this time. He didn't get sick to the stomach as much and would drink a little water now and
then ,but no food. He got to go home on Nov 1st and is still there.
YEAH! He's week from the chemo, but at least he gets to be home for a few
days. That really means alot. Although they are wonderful at the hospital
you just don't want to live there. They do alot for the kids at Duke. There
is a teacher on staff that spends at least an hour 3 or 4 times a week with
him when he's there. The also have a play room where the can go and paint,
color, or do just about anything they want if they're feeling up to it.
There is a t.v. and vcr in every room. Trey takes his own movies, but they
also have a good slection for them. I want to say THANK YOU! for all your
prayers.I believe in my heart that God is going to heal him and take this
horriable monster out of him never to return. Please continue to pray for
our miracle!
I'm sending Mistys address incase you want to drop her or Trey a card.
Misty Kirby
2696 Lilly Dr.
Salem VA. 24153

I'm also including a photo of Trey taken on Oct 5th the 2nd day of his 1st
chemo treatment and the 2nd photo is of him and his mom taken Oct 31st. The
2nd day of his 2nd round of Chemo. He has to return to Duke on 11/11 11/12
and 11/14/ for the stem cell extraction. Then again a week later for his 3rd round of Chemo. I'm not sure of the date.
Again Thanks for your prayers & God Bless!
Susie

Tuesday, November 05, 2002 at 07:30 PM (CST)

HERE IS THE UPDATE I RECEIVED FROM TREY'S GRANDMOTHER TODAY...
Hi Tina,
My sister sent me a copy of the email you sent her. My name is Susie Morris. I am Mistys mom, Trey's grandmother. I wanted to say Thank you for your prayers and send you an update on his condition. Trey was diagnosed with neuroblastoma on 9/29/02. He had surgery on 10/1/02 for the biopsy of his tumor and bone marrow. Misty had to make a hard decision. The Dr.'s told her the chemo treatments they are currently using don't seem to be working well. They told her she could sign him in under a research program with which they are having better results, but still don't know the
long term effects. He is currently in a research program. He recieves intense chemo (3 different kinds at the same time) for 72 hours straight. It is so strong he has to empty his bladder every 2 hr's or it could eat away at the lining. His first treatment started on 10/5 and ended on 10/8.
We were told it was cause him to loose his appititeand he did. We were also
told he would form blisters in this mouth and throat which he also did. He
went home on 10/10. 10/13 he had to go back to Duke because he was running
a high fever and very ill. He had to be put back on the morphine. He was
also given a blood transfusion. His mouth & throat were so soar and raw he
could hardly talk. The chemo was eating away at the lining of his esophagus
At that point he hadn't had any food on his stomach in 2 weeks so he was
put on liquid fat & nutrients. These are feed through his central line
which was inserted in his chest when he had the 1st surgery. That is also
how his chemo is given. That was a really long week. By this time he had
lost all of his hair. He finlly got well enough to go home on monday the
21st. Misty had to learn to give him a shot the has to be given everyday
when at home. She also had to learn how to hook him up to his fluids at
night since he still couldn't eat. By friday the 25th he was felling good
and eating pizza! He did gain a few pounds back before returning to Duke on
the 28th for another surgery and his 2nd round of chemo. The had to insert
a 2nd line in his chest to do a stem cell extraction. That's for his marrow
transpalnt later down the road. Anyway. To insert the line the go under the
skin on the chest and try to tap into a vein. For some reason they couldn't
find one so they cut into his neck and went through his juglar vein and
came out his chest. He wasn't feeling too good that night. There was alot
of pain from the surgery. Chemo was started the next morning. He seemed to
feel alot better by this time. The Dr.'s were suprised that he wasn't still in pain from the tumor. They think the chemo is working alot quicker than they thought. He had an eaiser time with the treatment this time. He didn't get sick to the stomach as much and would drink a little water now and
then ,but no food. He got to go home on Nov 1st and is still there.
YEAH! He's week from the chemo, but at least he gets to be home for a few
days. That really means alot. Although they are wonderful at the hospital
you just don't want to live there. They do alot for the kids at Duke. There
is a teacher on staff that spends at least an hour 3 or 4 times a week with
him when he's there. The also have a play room where the can go and paint,
color, or do just about anything they want if they're feeling up to it.
There is a t.v. and vcr in every room. Trey takes his own movies, but they
also have a good slection for them. I want to say THANK YOU! for all your
prayers.I believe in my heart that God is going to heal him and take this
horriable monster out of him never to return. Please continue to pray for
our miracle!
I'm sending Mistys address incase you want to drop her or Trey a card.
Misty Kirby
2696 Lilly Dr.
Salem VA. 24153

I'm also including a photo of Trey taken on Oct 5th the 2nd day of his 1st
chemo treatment and the 2nd photo is of him and his mom taken Oct 31st. The
2nd day of his 2nd round of Chemo. He has to return to Duke on 11/11 11/12
and 11/14/ for the stem cell extraction. Then again a week later for his 3rd round of Chemo. I'm not sure of the date.
Again Thanks for your prayers & God Bless!
Susie

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